Just recently finished 20 sessions/days (technically 40 doses) of Proton beam therapy at Loma Linda in SoCal to treat a Gleason 7 (4+3) prostate cancer. Treating doctor was not going to do space-oar, but I insisted on it (and my insurance covered it). Glad I did, but for me it was much more painful than the biopsy, which I did not think was a big deal. Also had a PSMA-PET scan prior to deciding on treatment. 2 months after Tx and I have had literally no side effects other than having to pee a bit more often, but No Incontinence and100% urinary control. Interesting as well is that the radiation doctor was fine with me foregoing any hormone or ADT therapy despite the Proton therapy being my first line of treatment. Having to do ADT/hormone therapy as well was a big concern for me and I may have chosen surgery, but the doctor never pushed at all when I said I prefer not to do that. Time will tell (61 years old now). Another interesting option that I don’t think I fully pursued or researched was doing a combination of proton beam therapy and High dose Brachytherapy (no seeds left implanted). One of the most frustrating things for me in dealing with Prostate CA, is trying to research and choose between SO MANY OPTIONS on treatments, with little or no definitive results or odds for outcomes. I watched huge amounts of RUclips videos and found the comment in many videos to be as useful or even more useful than the video itself. Good luck all
Man I agree with you 100% bro! I'm doing the same thing. I think the comments are as good or better than the videos! And I agree also that there are so many treatments out there and seems to me that none work eventually. It's something always happens and you never stop treatments. Continually you will be tested and given multiple choices. Mainly medications which I do not believe in either. Like you I am thinking about ... Proton therapy for my prostate problem but I'm planning on refusing all treatment also. Cuz I've been doing research and a many studies say that lowering testosterone is worse! Thoughts anyone.
@@DeathSentryCoH Zero issues with ED for me so far, although supposedly with radiation, ED issues could develop at some point in the future. Appear to have the same amount/consistency of ejaculate afterwards which is a benefit compare to the “dry” climax associated with having surgery. Had no incontinence issues after proton therapy other than having a “constricted flow” for a few weeks afterwards and had to pee a bit more often than before
@@alanaldpal950 Ah you're right, i understand if it is going to happen, it will be some time after the treatment. Great that you still have ejaculate though..whew. Keep us posted!
56-year-old Air Force Veteran here. Diagnosed with Gleason 4+3=7 contained and PSA 13.5 last year. With the help of PCRI I chose radiation. I had EBRT and LDR Brachytherapy in Minneapolis, no Space Oar was offered. My Urologist and Oncologist (thank you Minneapolis VA!) both agreed I could choose radiation or surgery. I'm glad I went the route of radiation, had some need for Flomax during the radiation treatments, felt a bit tired, frequent bathroom trips, but now a year later, feeling great! PSA dropped to 2.5, Viagra took care of the ED, no longer need the Flomax, I missed virtually zero days of work. Still ride motorcycles, snowmobiles, bicycles and play with my 5 grandchildren. Life is good. Hoping for a long future with my wife into retirement, nothing is guaranteed but thanks to the Minneapolis VA Oncology dept and huge thanks for what you do Dr. Scholz and PCRI!!
Thank you for posting this. I’m just beginning the process of testing to find out why my psa is high and I am worried about being out of work for a extended time besides if I have the big C and if it has spread
Mam - you are so accurately asking detailed questions to doctor is worth praising. Your video is full of medical information. Thanks for bringing such videos for people who are suffering from such diseases
My Prostate Cancer was discovered when I was 56. Gleason score was 8. I opted to have my prostate removed. Pathology found that I had positive margins. Seven months later I had my first of 40 radiation treatments, 5 days a week for 8 weeks. Four years later I started having a lot of blood in my urine. I had to go to the emergency room twice due to tissue damage in my bladder breaking down and blocking my urethra. Two years later, my instances of bloody urine is not nearly as frequent though I do have times when it looks like pure blood. I was told that the radiation is what caused the bladder damage. I’m still happy with having the prostate removed and going through the radiation. It beats the alternative. Unfortunately, I’m still getting up 5-7 times a night to pee. Oh well, I guess I don’t need that much sleep anyway 😂😂😂.
Hey there I get up 5:00 or 6 times to pee at night also! I am 70 years old and have prostate cancer. I am thinking about proton therapy but I understand that it might make my peeing at night worse! Question. Do you pee that many times a night BEFORE The radiation? Or just after. Thank you..
Try the hoLEP procedure to get rid of the problem of bph problems like getting up during the night to pee. I had it done at the VA hospital in Las Vegas and that problem is gone.
I have metastatic prostate cancer, the cancer in the prostate was causing urinary issues, where I was getting up 5 times a night to urinate even with medication to help. Now after completion of SBRT a month ago, my urinary symptoms have improved, now only have to get up 2 times per night to urinate.
@@gulshani8331 Diagnosed with metastatic cancer in June 23, started hormone deprivation therapy in July 23, radiation treatment done in April24, so it's only been one year.
Thank you for the video !!! After watching I had IMRT from Apr 24 to June 24 and did have the listed short term side effects (which were NOT that bad) they all went away 30 days after the end of treatment. Your videos were very helpful and I watched many of them before deciding...
You guys are awesome. I was all ready for surgery in 2020, at age 62. After consultation with three doctors, I settled on HDR Bracytherpy. Best decision . I got my sex life back, and I don't need any erectile meds! 66, and doing great . Thanks ❤
I would love to see you talk about the benefits of receiving pelvic floor physical therapy to help with the side effects of both radiation and surgery.
Sounds like the doc is just getting over a cold. Had to double check the video while listening to see if it was actually him. Still comes out to give us the goods. What a trooper!
Gleason 4+3=7 and interviews MD Anderson, Loma Linda and Mayo Clinic Minnesota. Mayo by far the superior technology and holistic approach. I was offered many options, none over 5 treatments proton and photon. I chose Proton and had markers and spacer inserted yesterday, sim on Monday and treatment after that. Mayo is actually doing a clinical trial that will use SBRT (adjusts between treatments to increase accuracy) and only 2 treatments! They are truly one of a kind. Nobody else offered anything less than 20 treatments. Pain of spacer insertion nothing worse than 5-6 bee stings in a sensitive place. I opted for no sedation as I am alone (traveled from Idaho). Piece of cake.
Good to know. I have two lesions. One 3+3=6 and another that has progressed to 3+4=7 over the last 3.5 years. I am trying to decide on staying on active surveillance or going to Mayo Clinic or University of Kansas Cancer center for proton beam therapy. I am in Iowa so both are relatively close. I am interested in the lower number of treatments.
Take your time making a decision on surgery vs. radiation. Don't let anyone rush you into a decision. I took a year and eight months before I decided to do radiation. I decided on ERBT. My third session will be next monday, then on Wednesday and Friday I'm done. Good luck! Prayers to you as well.
I had 45 rounds of proton radiation 2012 over a 3 month period at Loma Linda University Hospital. I'm told my PSA is in the normal range and I get tested several times a year. Dry ejaculate but I take Tadalil that not only helps with erections but also helps urinating.. 75 years old and life is pretty good.
Had SBRT a month ago. No hormone therapy. Gleason 3+4, intermediate. Low risk Prostox . So far, so good. Few if any side affects. I hope I can prove the Doc wrong regarding “dry” orgasms for the rest of my life. Not a problem so far. I’m 73.
I do my first SBRT session tomorrow. No hormone either. 3+4. Did not have the Prostox test - wasn't offered and I did not know of its existence. Age 71. Hope I have the same outcome as you.
Dry orgasms???? I was warned and it occurred shortly after finishing 25 fractions of 68 Grey IMRT. Good news, after a little over a year later, began to have small amounts of ejaculate which seems to be gradually increasing. Not sure if it's from prostate or just the Cowpars glands, but I am hoping for some recovery. I was Coerced into one six month shot of Eligard ADT CASTRATION, and 16 months after that toxic shit expired, my testosterone level remains very low around 150, so I am pushing hard for Testosterone replacement therapy. Of all the horrific quality of life destroying side effects, dry orgasms are the least of my concern, but it's comforting to see a little normality return. FYI, my radiation effects are not worth mentioning, but the ADT CASTRATION is pure hell, and I absolutely refused any further ADT in spite of being ordered on it for two years. I'm convinced that any further ADT would have killed me sooner than cancer. Good luck on your journey
Interesting. I have suffered from Proctitis for two years. It has been quite unpleasant, and suffered significant and frequent losses of blood, such that I collapsed due to the loss of iron. Have had two visits to oncology, but with limited effect. Happy to report that the incidences are reducing, but have recently had two days of repeated heavy bleeding and mucus. From listening to your comments, it would seem that suitable precautions were not made in the radiation sessions, and that I should not have had to go through these extensive unfortunate symptoms, including the panic quitting of the golf course and the need to find conveniences at short notice. I would welcome your comments or am I among the few to have to go through this. Chris Simpson.
I have suffered the same Chris. its very unpleasant. I bleed often and sometimes the flare ups are really bad causing me to stay closer to home because I want to be near the bathroom and making it hard to go anywhere.. my doctors have given me no solutions other than keeping me in the hospital when the flareups are bad to make sure I don't become anemic and then let me go home.
You are not alone Chris. I also have proctitis that comes and goes. Urinary urgency most of the time when I exert myself. But I have resolved to live with it. 😊
I haven't started radiation therapy yet, but had my initial meeting with a Radiation Oncologist and he discussed some of the side effects that can come with the therapy. He reported that bleeding such as you described and the two other gentlemen that replied to you in general was not an issue where I'll be treated. However, if something like that were to occur then referral to specialized gastroenterology is very effective. They perform Endoscopic Laser (Nd:YAG) therapy for severe radiation-induced rectal bleeding. Not sure where you are being treated / followed but if they have no clue about the above then I'd request a referral to a Cancer Center / Comprehensive Cancer Center where they should have access to the competent expertise available to get your quality of life back to par. Just curious, did your RadOnc place SpacOar or Barrigel prior to starting your radiation therapy? Hang tough man. All the best to you.
Sorry to hear of your ongoing problems. I had 25 fractions of 68 Grey IMRT and ordered to be on ADT ELIGARD CASTRATION for two years. I refused further ADT after the first shot expired due to horrific and insufferable side effects. During the final weeks of IMRT, I began to experience a lot of mucus with stool, but that resolved after a few months. HOWEVER, a full year after completing RT, I suddenly experienced severe urgency, mucus and a little bleeding. It was rather debilitating, but it resolved in a few weeks with no future issues. I guess I was luckier than a lot of guys. Wishing you a good outcome.
Thanks for your response. The post treatment care phone calls were very pleasant, but it took quite an effort for them to recognise the problem. Eventually the GP prescribed heavy iron tablets after having to go for a transfusion and two pints. Bloods eventually back to relatively normal levels, and the (small) golf course has become more enjoyable. (But still worried about a visit before starting out.) Had they realised something of the problem, iron should have been prescribed much more pre-emptively.
What went wrong?.... It was 7 sessions of R/T over two + weeks… However after the second day of treatment, I experienced pain whilst urinating and the flow was extremely small. This continued for months after R/T ....but in addition soon after my "poo" had been almost non existent with mucus mostly and very occassionally a smallish lump of poo. I had been taking water and with very little pee, but with determination and concentrating beyond the pain, I had managed to urinate very small amounts. In effect I could not poo or pee effectively. I had been eating well and drinking well as advised. I was afraid of going to bed at night because of the fear of pain and not being able to empty my bowels nor pee enough....I set my alarm every 30 minutes so that I could get up and at least get some pee (very little) and occasional poo (only mucus and wind and very little poo). It appeared that if I could get a decent poo, I could urinate much better. On the 6th R/T session, I had a panic attack due to pain and called it to stop at the very end of the session and then rushed to the toilet to ease the pain a bit. I asked one of the nurses if it was possible for me to get a catheter in case of emergency because of my extreme fear of not being able to pee. The radiographer decided to do my review that day which was the final review and she told me that this was to be expected and she gave me one large pad and three urine bottles for use if necessary in a plastic bag to take away. It was also mentioned that the effects of R/T are likely to get worse over the next few weeks due to "flare ups". A week after my R/T I had to call out the doctor because of excruciating pain and unable to pee and then emergency nurses appeared and fitted a catheter and a very large of urine removed. Later I had to have a permament catheter fitted for a month because I could not pee. Later still I was prescribed Tamsolusin and eventualy talked to a surgeon who informed me that he could not operate to clear the blockage because I had had R/T to the prostate and I would be either on a permament catheter of self catheterisation....Very depressed. Not long after having been instructed on the use of self catheterisation and supplied with lots of catheters by the NHS, I somehow managed to force myself into peeing with great pain and from then on it improved gradually, (suggested it was Proctotitis), until at least a year later I am still managing to pee with effort and frequency and with the pills (Tamsolusin one per day). My poo cleared up about a month after the R/T and is now normal. 18 months after the R/T my only problem other than tiredness is weak flow and frequency of peeing...But at least it works in a fashion without the use of catheters. Relief! But the question still on my mind is, what went wrong if anything?
My primary treatment with curative intent was prostatectomy in Sept. 2020 Gleason 4+3=7 with tertiary 5. 1st BCR early 2022, treated with salvage IMRT 39 sessions of 1.8 Gy, total dose 70.2 Gy, and 6 months ADT, again with curative intent. My 2nd BCR was Sept 2023, being treated NOW with ADT and Xtandi. I was hospitalized in Feb. 2024 with severe pancytopenia, and a Bone Marrow biopsy in March showed CCUS. Apparently bone marrow damage from the IMRT may not show up for years, but it is a known adverse effect. My physicians and I are hopeful that I am able to continue these 2 medications per the EMBARK protocol (I am not part of that Clinical Trial, just following the published protocol), and that the pancytopenia isn't due to Xtandi.
may i ask what was your psa readings after prostatectomy were and at what level you decided to do the salvage radiation. for instance me after prostatectomy I had a first psa reading of 0.20. then watching for a year it has crept up to 0.40. I have ED, numbness in my right groin area. I fear radiation will cause more side effects. I initialy delayed because I developed a hernia which I wanted to heal first. I am near 68 now. Your info makes me think i should never do radiation.
@@larryjohnson5807 My original diagnosis was made with PSA 4.01 July 2020. By late August PSA was 4.68, biopsy (MAKE SURE TO REQUEST IV CONSCIOUS SEDATION -- ANESTHESIA LIKE FOR COLONOSCOPY) showed Gleason 4+3=7. Robotic radical prostatectomy in September 2020 -- Gleason 4+3 with Tertiary Gleason 5. Lymph nodes turned out to be globs of fat -- pT2,Nx,M0 as the pathology, margins clear. PSA was below 0.01 for a year. September 2021 it was 0.01. Early December 2021 PSA rose to 0.17. First biochemical recurrence -- CT chest, abdomen and pelvis all normal with normal liver. Pylarify scan April when PSA 0.243 was negative. Orgovyx started 5/13/22 PSA 0.3, and 6/22/22 PSA fell to 0.012. Radiation as IMRT to the prostate bed started 1st week July 2022 39 treatments of 1.8 Gray each = 70.2 Gray total. Orgovyx stopped 11/23/22 and PSA stayed under 0.01 until April 2023. SECOND biochemical recurrence 8/28/23 with PSA 0.2 and PSADT of 1 month. Scans all normal except severe fatty liver, probably due to Orgovyx -- liver blood tests always normal. 11/14/23 PSA 0.63 and my Oncologist prescribed Orgovyx and Xtandi per the EMBARK study regimen. My Oncologist did somatic genetic testing -- CDK12 mutation. I read that ellagic acid can inhibit CDK12, like PARP-inhibitors inhibit BRCA mutations, so I started taking it in January 2024, with my Oncologist's permission. 1st week February 2024 I landed in ICU twice because of severe pancytopenia. I was off Orgovyx and Xtandi for about 4 weeks, resumed them, completed treatment course and stopped both 10/2/24. My blood counts have improved a little, but are still a long way from normal. Bone marrow biopsy showed a TP53 genetic mutation and my Hematologist calls it CHIP or CCUS. PSA results since December 2023 always under 0.01. 10/2/24 PSA 0.01. Medical articles indicate IMRT to the prostate bed can be associated with MDS or AML after a few years.
@larryjohnson5807 PS to previous post: Prostatectomy as primary treatment in cases without spread of any kind is CURATIVE about 2/3 of the time. First biochemical recurrence without spread is subsequently CURED by androgen deprivation therapy and radiation therapy about 50% of the time. Thus about 17 to 20% end up having a second biochemical recurrence. Prostate cancer that has a second recurrence is just controlled, but rarely cured.
@ BioChemical Recurrence (BCR) or RELAPSE after prostatectomy is defined as PSA 0.2 or higher. By the time scans were done my PSA was 0.3. The research around the world shows salvage Radiation Therapy can provide a second chance at cure (if no spread found on scans) of about half the men not cured by the prostatectomy, so I went for it! I have had a second relapse (BCR), so I am in the 16 to 17% that failed CURATIVE TREATMENTS (prostatectomy then RT, or reversal of that order). Again, the vast majority of prostate cancer patients live a long time after diagnosis and prostate cancer is not what the cause of death.
And, whether or not it is localized can be challenging to determine even with an MRI. MRI's can be wrong a percentage of the time and probably because of computer error or radiologist error. I can give you an example of myself having MRI's done of my central nervous system and had many MRI's done. Even though I had competent radiologists writing up the reports, not one of them noticed I had 6 lumbar vertebrae instead of the customary 5. And, in the middle of two medical professionals who were giving and going to give me transforaminal injections into about 4 or 5 different locations, I asked them if they knew I had six lumbar vertebrae and neither of them knew that despite them having a real time kind of XRAY machine, but when I said that they looked more closely and determined I indeed had six lumbar vertebrae and then needed to re-calibrate where they would give me the injections.
I'm 72 and a about 10 months out from Bachytherapy at the Cleveland Clinic for Gleason 7 (4+3) PCa. PET scan revealed no metastasis. My 6 mo. PSA was 0.23 and I have (thusfar) experienced minimal side-effects. Hoping the PSA will continue to fall
Ten years after IMRT at a centre of excellence teaching hospital, did my long term side effects appear. Related to the urinary ability to drain the bladder. Have to self catheterize daily and been doing so now for over two years. Preferable to carrying a bag but not clear on what further options I have.
As a survivor I add that detection of the malignancy in Prostate problem in the early stages contributes to complications that the individual ends up experiencing later. Detection and even awareness of the medical check relevant conditions is critical . Men should be aware what PSA or Gleason factor means . I initially attributed to my urine flow problems to old age until a nagging back pain at the time suspected to be a UTI condition persisted evenafter antibiotics. So medical Health systems in developing countries must improve with acquisitions of detection equipment . Treatment procedures is complicated . Most will be familiar with surgery procedure but for those who have gone through it experiences show that it's too rudimentary and attracts different deterring conditions in pain or after care . My Radiation therapy had a happy ending despite a range of side effects some which am still experiencing like crumping.
I experienced the same issues exact one year after completing 25 fractions of 68 Grey IMRT. It was pretty severe but cleared up before long, and hasn't re occurred. Good luck getting beyond this setback
I've heard the Dr. mention center for excellence a number of times now. How does one find a center of excellence? I am headed for a biopsy next week on a PIRADS 4 from an MRI.
Thanks Peter. Urinatory aspect not too bad for me but still appreciate that from earlier experience it must be a nuisance. Lost blood on the golf course this morning, again just as it seemed I was getting better.
I had hormone treatment and IMRT (39 sessions over 8 weeks) when I was 64 with Gleason 3+4. I'm 71 now and can still get erections. I find it can take forever to ejaculate but when I do, they aren't usually dry ejaculations although there usually isn't much liquid. For some time after treatment finished I would get very frequent and extremely sudden urges to urinate. That eased considerably but now when I gotta go, I really have got to go. For me the worst side effect is that my strength never fully recovered after the treatment. I used to race as a vereran cyclist but I'm not strong enough to compete anymore.
@jerrymunroe5593 It lasted 6 months, starting 2 months before I began radiation therapy. I had to take a Casodex tablet daily. Then after two months I was given a decapeptyl injection which coincided with the start of radiation treatment (39 sessions over 8 weeks). Three months after the first injection I was given a second decapeptyl injection. I finished my course of Casodex a month later.
Having had a complete prostatectomy at 68yrs with a psa of 0.080 now 7year later to have a recurrence two yrs ago with psa of 10 and doing a psma pet ct scan a small nodle was discovered on my lung which was extracted by a cardio thoracic surgeon and psa fell to 0.080. At such point my medical oncologist put me on eligard 22.5 injections every 3 months and bacalutamide 50mg daily but psa kept going up so another pet ct scan was done and it show metastasis on L5 and hipbone and was put on Averaterone 250mg, for 3 months. I just did another blood test amd my psa is at 43.2 .my Dr.say that cancer seems resistance to ADT however my testasterone level is below 20, which is good and now requested another pet ct scan and increase Abiraterone to 1000mg with 10 mg presdnisone. How did the psa go so high?
You could try switching from prednisone to dexamethasone, it should lower the PSA with abiraterone. Equivalent dosage: 10 mg prednisone = 1.5 mg dexamethasone. If you take it later than noon then you might have difficulty sleeping. If PSA goes still keeps going up then either switch to other second-generation ADT like Xtandi or try chemo (docetaxel).
Hello sir If I may ask you some questions about your case , Im six months post RP. You say you had psa of 0.80 after your surgery 7 yrs ago, was your psa ever undetectable? Also you say your PSa reached 10 over that time but were you getting psa tests during that period? it would seem you should have had radiation before your psa reached 0.2 at the very least , but if you didnt was it because you didnt test for many yrs? or was it a sudden jump from 0.80 to 10 which I understand to not be common if even possible.. it would help me better to understand my own situation if you can clear this up. Im undetectable for now but age 55 which is of course concerning. Thank you and God bless you on this journey.
I really have appreciated your videos on prostate cancer. I would like to know what Dr. Scholz thinks of metabolic cancer therapy. The metabolic therapies include caloric restriction, fasting, and ketogenic diets. The approach is based on the idea that compensatory metabolic pathways are capable of modifying the pathogenesis of complex diseases. Dr Seyfried at Boston College is a researcher involved in this type of therapy. He believes that cancer is a metabolic disease basically of he mitochondria.
I’m dealing with a stage 4 recurrence of my prostate cancer and I’m in an interesting position because I’ve had both surgery and radiation treatments in the past so I’m pretty much totally dependent on hormone deprivation therapy for my future care. I found it interesting that the doctor mentioned that 5 percent of men have long term side effects from radiation treatments as far as ED and incontinence go; I find myself in this very small group.
Many thanks again for an insightful video Once again will request the doc to talk about deciper test and how to use its results in determining cure options
From my 2 years experience on ADT And Nubeqa I would say the long term side affects would be mostly related to the slow degrading affect on the body of the removal of testosterone
For me, the degrading effect on the mind was worse than on the body. They never warn or even mention the severe brain fog that can occur, and develop into dementia. ...My side effects were so horrific and insufferable that I gave my doctor the old 4Q and refused any further ADT CASTRATION. But even now, 18 months after the first six month shot of Eligard ADT expired, my testosterone remains less than half of normal and no doctor will give me TRT. looks like I have to go back to Mexico soon where I can buy testosterone over the counter.
I had 26 rounds of IMRT in 2020 with the use of Spaceoar. I was 64 at the time. It caused ED, pelvic floor damage, and rectal bleeding since. I just had a PSMA-Pet scan it came back as still active cancer in the same location. I also need to take Flomax.
After 1 year of having 5 high beam radiation, I am experiencing urinary issue all of a sudden. Mostly burning sensation and increased urination. First was thought UTI, but after examination it was ruled out. Per Dr, it is Radiation side effect. As a remedy AZO/pain killer is prescribed. But seems a temporary solution, as the burning sanction comes back and it is very painful.
I have prostrate cancer. I am presently 75. I have gone through Radiation Treatment followed by Hormone treatment. Initially it went pretty well. Eventually my PSA went down to 0.6 and my Hormone treatment was ended. Unfortunately my PSA started going up again. Further radiation is not possible so I am back on Hormone injections. Actually PSA is dropping and I am hopeful I may be taken off the Hormones again. Unfortunately I started seeing blood in my urine. Turns out after tests that my bladder is bleeding as a result of the radiation treatments. It is not too bad so there is no panic at this time. However I have to wonder if I should have had the prostrate removed at the start..
My dad had prostate cancer it wasn’t very bad. The doctor told him he could take it out or do radiation or leave alone. The doctor said he would probably die of old before it got bad. So my dad did the radiation it got rid of the cancer but he bled out his butt the rest of his life. He made it till 82. The cancer started around 74. Basically they did to many treatments.
Curious why did you do a biopsy? I have also a Gleason 3+3=6 lesion- I had a 4d screening that showed PSA 4.45 with MRI that showed PI-RADS 4 that indicated biopsy. Your PSA is 1.8 totally normal. Did your doctor feel a nodule on finger inspection?
I have been watching your vedios, my imperssion from the vedios is the prostate cancer (gleason 7 and up) will not able to get fully cured, the treatments are only slow the cancer spread process and gain some quality time for rest of the life, am I correct?
Erectile dysfunction after RT (although “only” 50% vs 80% for RP) yes, but dry ejaculation? I haven’t heard that it is common. I certainly didn’t get it after IMRT+proton boost for high-risk PCa. I did get some radiation proctitis, but that has been nicely suppressed with one Salofalk suppository per week. My “center of excellence” (Heidelberg University Hospital) did not recommend using a spacer gel in 2018.
I've had 39 IMRT treatments 2 years ago.....refused hormone treatment. So far not a single side effect of any kind. After everything was said and done my Doc told me (if he had been in my shoes) that he would have chosen the same path. There is the caveat that some side effects may yet appear longer term......we shall see.
I had proton therapy at 65 for prostrate cancer. Short term hard to Urinate and felt a tired. Long term started about 73 with hip pain and stared to have low sex drive and my and had trouble getting Mr. happy ready and no come. I have no wife so isn't the end of the world. My woman friend is ok with it. I am 9 years out and low psa's so life is ok at 74. Miss the sex but I had a good sex life before probably better that most men so I don't feel cheated. Hips hurt on walks but other than that life is good.
I have a right side mouth ulcer and it's been a year since the radiation, still the right cheek is swollen as a result and there is a small hole, if there is any remedy to close the hole please let me know.
Thank you for asking! We have an incredible helpline of people who will be happy to help you find an answer to this. You can reach them at pcri.org/helpline
Thanks a bunch…love your talks…blood in urine and maybe in stool can come and go for years really is unreal….learn more from you than my docs…had to have hormone treatment stopped because it was kicking my ass..now I take shots to get testosterone back to build body again…thank you soooo much…
Ok so clarification please. I have a Gleason 9. Should I do LD Brachytherapy as a standalone with no need for ADT or Brachytherapy (again if localized) with ADT or the Triple punch of Brachytherapy+ ADT+IMRT/SBRT???????????
Hey there. I was diagnosed Gleason 9, localized....I had SBRT-5 high dose beams...Finished in mid-July this year. Just about to have my first PSA post procedure, to see where my PSA score will be. I would caution you when looking at ADT-it certainly seems to help, but the side effects... A "Triple punch" as you called it, may very well be what you do but not necessarily what you need. On a side note: fasting has helped me a lot-it starves the cancer.... When I had my 5 radiation doses, I fasted for a few days before each radiation session in order to starve the cancer, hence increasing the efficacy of the beam therapy. There are some peer reviewed studies on this from the NIH, maybe look it up-great reading. So far, other than minimal side effects and yes, loss of sperm, I feel absolutely fine. I hope all goes well for you.
I had 5days a week 7 weeks radiation treatment with gold seed placed in my prostate to locate treatment positions. After approximately 98 radiated seeds placed in prostate. Lots of side effects and visits to ER. Complete ED problems and after 7yrs my psa is extremely low but physically I have never felt normal and sex is not apart of my life anymore.
2017 psa 28 had a rad robotic prostratectmy. cancer was out of prostrate, scraped off bladder -2018 had penile implant. 8- 24 psa back to 2.1 now radiation. will the radiation harm my saline resivour inside me
Recent updated data from British Columbia published in the Journal of Urology (July 2024) showed a progressively increasing risk of secondary malignancy development after brachytherapy, up to 10% at 20 years. Is radiation therapy of any kind still a good treatment option for healthy men under the age of 70?
Thank U all for info ,I was diagnosed with radiation proctitis! It showed up a few months after 3 or 4 doses of radiation in my pelvic area it is very painful and not much helps,,I've been told no more chemo nothings working ,???
My testosterone level is 9.5nmol//L so at the very lower end of the scale and my Free Androgen Index at 19.15. Does this mean I could do without having Hormone therapy if I had Radiation as these are the only options being offered by the NHS here in UK!
@@threeftr3349 biopsy Gleason 3+4=7 with 40% of gland cancerous and recent PET showed no metastasis 😁 MRI showed possible extra capsular extension into left seminal vesicle.
ADT significantly decreases bone density.. Radiation makes preexisting anemia worse. ADT induces occassional visual spatial perception causing fall at stairs. ADT causes initial drastic decrease in muscle resulting in drop in body bodyweight that making current bp medication dosage too high for lower body mass. Why these issues not brought up ?
These videos are excellent! Center of Excellence is the key!!! I was diagnose with prostate cancer Gleason 3+4. Elected photon therapy, SpaceOAR procedure and Lupron therapy. What I experienced was nothing short of a freaking train wreck! I had bladder stones, or should I say rock garden! The pain I lived with during the second thru the 5th week of treatment was earth-shattering! Experienced urgent bloody urination every 15 minutes, urination was tremendously painful! Had the bladder stones removed during 3rd week of treatment which should have been performed before treatment, continued treatment. 4 weeks out from radiation, things are improving, and I still can't sit on a mower. My recommendation is to GO TO a CENTER OF EXCELLENCE for treatment!
I have a friend who is Gleason score 3+4 at 74 yrs of age and doctor says watchful waiting is all thats needed at this point in time.That seems to be at odds wìth what i am reading here.Anybody else with 3+4 that has been told this ??
@@dalebishop5936 Does he have Medicare advantage? Did he have any other diagnostic testing to confirm his Gleason score? ...such as a Decipher test, MRI or PSMA Pet Scan? What is his PSA? What was the reason he had a biopsy? Does he check is PSA every year? or every 6 months?
Hyperbaric oxygen therapy is an absolute must after prostate radiation. It's terrible to wake up to blood gushing out of your rectum 2 years after your treatments. Delayed proctitis is no joke.
Would you please provide additional detail on your hyperbaric oxygen therapy? How soon after radiation? How many treatments? Time period between treatments? etc............. thanks much!
two years out from 39 ebrt treatments and I am experiencing Not leakage, but cannot pass urine at night when I wake up. Doctor said it is the result of radiation. So the question is, why can I go during the day but not a night?
I am an 80 year old whose PSA went up to 23 and my Gleason score was 8.3. I underwent 45 radiation treatments and also have been prescribed Orgovyx and Aberaterone for two years. I am extremely fatigued and weak and get out of breath with mild exertion. Is this normal?
I had radiation therapy, it cured my cancer, but it atrophied my penis (loss of 5” in length and my testicles are the size of garbanzo beans) I’m incontinent now. All in all - prostate cancer took away my quality of life. I’m 16 years cancer free, relationship free and gym free.
Thanks, it’s too late for me! I am warning people to find out the “personal” facts of the actual symptoms post-radiation that no doctor apparently felt it worthwhile to convey!
How in the world can they have so many options to treat prostate cancer!!!! Can't they figure out a way that works!?!? It's almost as if there is no cure at all. Did they just make you have side effects and possibly I'm thinking that you could live just as long if you had no treatments! Thoughts anyone please because this is becoming overwhelming for me to decide what course to take. I really really think of doing nothing! I am getting so frustrated and mad! No cure? Unbelievable.
My PSA is 39 but the biopsy says it's a Gleason 3 + 3. Since 3 + 3 tumors don't metastasize I have to figure out if I want to do something as drastic as surgery or radiation for a condition that isn't life threatening, at least in the short term. Is there any way to shrink non-metastatic tumors without all the side effects of radiation or radical surgery?
@@SeekingWisdom17 From the MRI: "Enlarged prostate gland is about 3.6X4.2X4.9 cm with volume 38.5 mL. 1# There is a 3.4 cm circumscribed hypointense T2W leision with marked DWI restriction involving transitional zone from base to apical levels, as well as anterior peripheral zone at apical level, PI-RADS 5. Bulging anterior capsule could be extraprostatic extension (EPE)." The first biopsy came back as indeterminate so they sent me to a different hospital for what the described as a "deeper more thorough" biopsy, whatever that means. It was a bloody mess. It also came back as indeterminate to they sent the biopsy to a third laboratory which returned the Gleason 3 + 3 diagnosis: "TRUS biopsy(18/4/2024): Rt lobe: Adenocarcinoma, Gleason score 3 + 3. Tumor involves 5 of total 16 fragments. Confirmed w(at this point the printing runs off the edge of the page) Lt lobe presence of stroma and part of seminal vesicle; no prostatic acini was obtained.
Could you please provide a reference for "Since 3+3 tumors don't metastasize ..." ? I have a 3+3, and I need ammo to deal with oncologists. Short history: Radical prostatectomy 1995 (didn't get it all) External beam radiation 2011 (didn't get it all) 24 months of ADT 2022-2024 (Didn't get it all) . Sometimes I think they just make things up to get me out the office so they can have a tickle party.
@@glennmeisenheimer1128 I needed to put your post in chatGPT to understand it in easy English. This is what it gave me:MRI: Your prostate is bigger than usual, measuring about 3.6 x 4.2 x 4.9 cm. The MRI found a suspicious area in your prostate that's darker on certain scans and might be restricting water movement (not a good sign). This area involves the middle part of your prostate from top to bottom and the front edge near the top. The radiologist who looked at the MRI thinks the suspicious area might be growing outside the prostate (not good). Biopsy: The first biopsy results weren't clear (indeterminate). You had a second, more extensive biopsy (probably took more samples) at a different hospital. This one was pretty uncomfortable (bloody mess). The second biopsy results were also unclear at first (indeterminate) but after sending them to a different lab, they found cancer. Cancer details: The type of cancer is adenocarcinoma. The Gleason score is 3 + 3, which is a low-grade cancer (good news). Cancer was found in 5 out of 16 samples taken during the biopsy. The biopsy of the left side didn't get any prostate tissue, just other stuff.
My understanding is the 3+3 may not metastasize, but there is nothing to stop other higher grade cancers from developing and spreading.@thomassladek9437
Pills are suppose to be way cheaper than an in office injection. If your insurance doesn't cover the pills, perhaps they will cover the in office injection, which is just a little bit more than the price they quoted you for the pills. What kind of insurance do you have? I hope it's not Medicare Advantage.
I have 3+4 diesase and also have well controlled Ulcerative Colitis. I was considering having radiation therapy as opposed to surgery however the doctor who would be doing the radiotherapy advised against it due to my history of inflammatory bowel diesase. The consultant treating my colitis said it was a seperate entity and said that they rarely came across radiation proctitis. Has anyone any experience of this?
Dr Schholz is excellent, however he say mentions hyperbaric oxygen therapy as an adjunctive wound healing treatment. I worked in hyperbarics for years, even taught courses in it, all the good objective evidence shows it is either noneffective or detrimental. The theoretical rationale is outdated and the well done prospective clinical trials all argue against it. Please don't in any way promote this treatment. I would be glad to provide more info. I am well versed in the area.
@@Sam-jr2nc You can go back to a letter written to the New England Journal of Medicine in 1987 Hyperbaric Oxygen Therapy "A Therapy in Search of a Disease". There have been many clinical research studies and the better ones typically show no effect and some negative consequences for wound healing. It is a great therapy for decompression sickness and arterial gas embolism. A lot of the people who make money from the treatment have done studies showing it is effective. The basic science claims for rationale of hyperbaric oxygen in wound treatment just don't make sense, large doses of oxygen are toxic, you can marginally improve wound healing by taking ground level oxygen, but it is a trivial level of improvement (increased collagen crosslinking). I worked in the area and saw people try to do research in the area and basically they quit the research projects when they saw bad results. So the clinical research you find in the medical literature is mixed but most is low quality because it is almost impossible to ethically do proper controls. I worked in one of the largest therapeutic facilities in the world and all the technicians thought the treatment was worthless, one asked "who have we ever seen who was cured?" one asked one day. The physicians liked it because it was really easy work for them. However the physicians who worked in HBO were really good at wound care which was generally provided every day. So when people started HBO treatment they also started receiving daily excellent wound treatment and saw improvements in the wound (in my opinion it was from the wound care not the HBO). I know this is not a clear cut answer for you. It is an area of medicine nobody wants to kill because people make a lot of money in it and have a lot of money invested. It is a cult type of therapy, people come to believe in it like a religion, but I am totally convinced it is worthless and I used to teach classes in it.
I have had severe fatigue 10+ years. A naturopathic dr suggests hypabaric treatment. Now seeing your advise makes me wonder it’s of any value. I also have Gleason 9, psa was 12.5, now after two months hormone reduction and hi dose vitamin C & Magnesium infusions my psa is 0.8. Seeing these many posts about RT, I’m getting more questions if I can even handle even the side effects of MORE fatigue. I am 79, healthy except for the fatigue & prostate issue. I’m wondering that with all the side effects of treatment w I might have a better quality of life to just let nature take its course.
I hear no mention of this, My treatment is creating regular rectal wind over first 10 treatments and a gel like discharge .Can this be from the pre treatment enema
My dad just finished four weeks of radiation for his bladder cancer. He is in agony everyday and all i can think of is that he is burning inside. He lives in the bathroom since he has urgency to poo and pee. Anyone know what happened? Is this common? He was perfectly fine before other than the cancer found in bladder. Wiĺl his pain go away? He ranks it a 10 and thinks he is going to die from the pain. Been to emergency room but they keep releasing him with pain meds. Radiation kis awful.
I think bladder cancer is a whole different kettle of fish from prostate cancer, much more serious and little in common with PC and the way it's treated. He should be all over his urologist and oncologist to sort this out, not the local ER. I hope he gets help soon. I had a cystoscopy when I was suspected of having bladder cancer and after it it was extremely painful to urinate and there was blood clots etc, so I know a little of what he is going through and it's not nice😢
I really hope somebody will answer this because just like a lot of men out of here say I got surgery cause I wanted it out and don't even understand that the recurrence rates are nearly identical. I hear this all the time when they chose surgery. Well if I got radiation first, I couldn't have surgery, which is generally true. It makes it much more difficult, but when would that ever be an option? It almost feels like a strawman argument that men make to justify why they choose surgery.. it seems most of the time if radiation fails they re-radiate if there's an instance where a person had radiation, but having surgery at a later date might be important. I haven't found it yet so again, I feel it's a strawman argument, although it's true it's not something that's applicable and yet mini make men are making the decision of surgery over radiation versus this strawman. Can anybody chime in at all on where it might still be important to leave surgery is an option after Radiation.
Oddly enough, I still have semen fluid after radiation. Not much but still some, and it doesn't come out of the rate or timely fashion that it used to.
Can you tell people the very bad psychology after prostatectomy , tell the victims they will feel like dog castrated. This is how I feel after my surgery. 3 years don't feel anything. He'll be coming to my doctor what he did to me. Lies was all this website. Tell consequences, too....I will never be fine is a male again. My truth.
Just recently finished 20 sessions/days (technically 40 doses) of Proton beam therapy at Loma Linda in SoCal to treat a Gleason 7 (4+3) prostate cancer. Treating doctor was not going to do space-oar, but I insisted on it (and my insurance covered it). Glad I did, but for me it was much more painful than the biopsy, which I did not think was a big deal. Also had a PSMA-PET scan prior to deciding on treatment. 2 months after Tx and I have had literally no side effects other than having to pee a bit more often, but No Incontinence and100% urinary control. Interesting as well is that the radiation doctor was fine with me foregoing any hormone or ADT therapy despite the Proton therapy being my first line of treatment. Having to do ADT/hormone therapy as well was a big concern for me and I may have chosen surgery, but the doctor never pushed at all when I said I prefer not to do that. Time will tell (61 years old now). Another interesting option that I don’t think I fully pursued or researched was doing a combination of proton beam therapy and High dose Brachytherapy (no seeds left implanted). One of the most frustrating things for me in dealing with Prostate CA, is trying to research and choose between SO MANY OPTIONS on treatments, with little or no definitive results or odds for outcomes. I watched huge amounts of RUclips videos and found the comment in many videos to be as useful or even more useful than the video itself. Good luck all
Man I agree with you 100% bro! I'm doing the same thing. I think the comments are as good or better than the videos! And I agree also that there are so many treatments out there and seems to me that none work eventually. It's something always happens and you never stop treatments. Continually you will be tested and given multiple choices. Mainly medications which I do not believe in either. Like you I am thinking about ... Proton therapy for my prostate problem but I'm planning on refusing all treatment also. Cuz I've been doing research and a many studies say that lowering testosterone is worse! Thoughts anyone.
Any ED?
@@DeathSentryCoH Zero issues with ED for me so far, although supposedly with radiation, ED issues could develop at some point in the future. Appear to have the same amount/consistency of ejaculate afterwards which is a benefit compare to the “dry” climax associated with having surgery. Had no incontinence issues after proton therapy other than having a “constricted flow” for a few weeks afterwards and had to pee a bit more often than before
@@alanaldpal950 Ah you're right, i understand if it is going to happen, it will be some time after the treatment. Great that you still have ejaculate though..whew. Keep us posted!
56-year-old Air Force Veteran here. Diagnosed with Gleason 4+3=7 contained and PSA 13.5 last year. With the help of PCRI I chose radiation. I had EBRT and LDR Brachytherapy in Minneapolis, no Space Oar was offered. My Urologist and Oncologist (thank you Minneapolis VA!) both agreed I could choose radiation or surgery. I'm glad I went the route of radiation, had some need for Flomax during the radiation treatments, felt a bit tired, frequent bathroom trips, but now a year later, feeling great! PSA dropped to 2.5, Viagra took care of the ED, no longer need the Flomax, I missed virtually zero days of work. Still ride motorcycles, snowmobiles, bicycles and play with my 5 grandchildren. Life is good. Hoping for a long future with my wife into retirement, nothing is guaranteed but thanks to the Minneapolis VA Oncology dept and huge thanks for what you do Dr. Scholz and PCRI!!
1st
Thank you for posting this. I’m just beginning the process of testing to find out why my psa is high and I am worried about being out of work for a extended time besides if I have the big C and if it has spread
Thank you for posting your experience - appreciate your thoughts. God bless, from Australia 🇦🇺
Thanks for sharing your positive experience! 20 yr Air Force Vet Desert Storm Thank you for your service 🫡🇺🇸
Did you have hormone therapy?
Mam - you are so accurately asking detailed questions to doctor is worth praising. Your video is full of medical information. Thanks for bringing such videos for people who are suffering from such diseases
My Prostate Cancer was discovered when I was 56. Gleason score was 8. I opted to have my prostate removed. Pathology found that I had positive margins. Seven months later I had my first of 40 radiation treatments, 5 days a week for 8 weeks. Four years later I started having a lot of blood in my urine. I had to go to the emergency room twice due to tissue damage in my bladder breaking down and blocking my urethra. Two years later, my instances of bloody urine is not nearly as frequent though I do have times when it looks like pure blood. I was told that the radiation is what caused the bladder damage. I’m still happy with having the prostate removed and going through the radiation. It beats the alternative. Unfortunately, I’m still getting up 5-7 times a night to pee. Oh well, I guess I don’t need that much sleep anyway 😂😂😂.
Hey there I get up 5:00 or 6 times to pee at night also! I am 70 years old and have prostate cancer. I am thinking about proton therapy but I understand that it might make my peeing at night worse! Question. Do you pee that many times a night BEFORE The radiation? Or just after. Thank you..
In by the
Try the hoLEP procedure to get rid of the problem of bph problems like getting up during the night to pee. I had it done at the VA hospital in Las Vegas and that problem is gone.
@@ricknowak4582 Yes, I was peeing a lot at night before my biopsy revealed I had prostate cancer.
@@orangeguy3314 Did you have your prostate removed followed by radiation or just radiation?
I have metastatic prostate cancer, the cancer in the prostate was causing urinary issues, where I was getting up 5 times a night to urinate even with medication to help. Now after completion of SBRT a month ago, my urinary symptoms have improved, now only have to get up 2 times per night to urinate.
How many years u surviveing
@@gulshani8331 Diagnosed with metastatic cancer in June 23, started hormone deprivation therapy in July 23, radiation treatment done in April24, so it's only been one year.
@@gulshani8331 One year since diagnosis.
@@timothyfay1209 are u feeling good ? what treatment are u taking?now
Love his ties, following him for my brother, who was just notified of prostate cancer.
Thank you for the video !!! After watching I had IMRT from Apr 24 to June 24 and did have the listed short term side effects (which were NOT that bad) they all went away 30 days after the end of treatment. Your videos were very helpful and I watched many of them before deciding...
You guys are awesome. I was all ready for surgery in 2020, at age 62. After consultation with three doctors, I settled on HDR Bracytherpy. Best decision . I got my sex life back, and I don't need any erectile meds! 66, and doing great . Thanks ❤
Awsome, you are the exception my friend. Happy for you.
I did the same, HDR Brachytherapy, 7 months later couldn't be happier with the results.
Lifestyle change is very important, healthy diet and regular exercise. On my journey, I lost 50 lbs . Best wishes to all.
@@frankgeorge7951 And , your cancer ???
@patricktrussell7465 PSA 0.01, no cancer. Please do your research. Everyone is different 🙏🏽
I would love to see you talk about the benefits of receiving pelvic floor physical therapy to help with the side effects of both radiation and surgery.
Sounds like the doc is just getting over a cold. Had to double check the video while listening to see if it was actually him. Still comes out to give us the goods. What a trooper!
@@bkreed27 Souper!
Gleason 4+3=7 and interviews MD Anderson, Loma Linda and Mayo Clinic Minnesota. Mayo by far the superior technology and holistic approach. I was offered many options, none over 5 treatments proton and photon. I chose Proton and had markers and spacer inserted yesterday, sim on Monday and treatment after that. Mayo is actually doing a clinical trial that will use SBRT (adjusts between treatments to increase accuracy) and only 2 treatments! They are truly one of a kind. Nobody else offered anything less than 20 treatments. Pain of spacer insertion nothing worse than 5-6 bee stings in a sensitive place. I opted for no sedation as I am alone (traveled from Idaho). Piece of cake.
Good to know. I have two lesions. One 3+3=6 and another that has progressed to 3+4=7 over the last 3.5 years. I am trying to decide on staying on active surveillance or going to Mayo Clinic or University of Kansas Cancer center for proton beam therapy. I am in Iowa so both are relatively close. I am interested in the lower number of treatments.
What a team! Always incredible information in an arena of mass confusion! You guys are the best - hands down!
At 60. went from PSA 4 to over 7 in 6 months. Waiting for my biopsy now. Appreciate this channel for the information.
Take your time making a decision on surgery vs. radiation. Don't let anyone rush you into a decision. I took a year and eight months before I decided to do radiation. I decided on ERBT. My third session will be next monday, then on Wednesday and Friday I'm done. Good luck! Prayers to you as well.
Thank you both for the information God bless
YOU ARE AWESOME.
GOD BLESS YOU
I had 45 rounds of proton radiation 2012 over a 3 month period at Loma Linda University Hospital. I'm told my PSA is in the normal range and I get tested several times a year. Dry ejaculate but I take Tadalil that not only helps with erections but also helps urinating.. 75 years old and life is pretty good.
Didn’t realize tidafil can help in better urination. Could you pls advise a bit more
Had SBRT a month ago. No hormone therapy. Gleason 3+4, intermediate. Low risk Prostox . So far, so good. Few if any side affects. I hope I can prove the Doc wrong regarding “dry” orgasms for the rest of my life. Not a problem so far. I’m 73.
I do my first SBRT session tomorrow. No hormone either. 3+4. Did not have the Prostox test - wasn't offered and I did not know of its existence. Age 71. Hope I have the same outcome as you.
Dry orgasms????
I was warned and it occurred shortly after finishing 25 fractions of 68 Grey IMRT.
Good news, after a little over a year later, began to have small amounts of ejaculate which seems to be gradually increasing.
Not sure if it's from prostate or just the Cowpars glands, but I am hoping for some recovery.
I was Coerced into one six month shot of Eligard ADT CASTRATION, and 16 months after that toxic shit expired, my testosterone level remains very low around 150, so I am pushing hard for Testosterone replacement therapy.
Of all the horrific quality of life destroying side effects, dry orgasms are the least of my concern, but it's comforting to see a little normality return.
FYI, my radiation effects are not worth mentioning, but the ADT CASTRATION is pure hell, and I absolutely refused any further ADT in spite of being ordered on it for two years. I'm convinced that any further ADT would have killed me sooner than cancer.
Good luck on your journey
Any ED?
@@s.chaisrisuk4956 3 months in PSA is 2. No ED and not dry.
Knock wood. Libido is off some though. Maybe it’s just age.
Interesting. I have suffered from Proctitis for two years. It has been quite unpleasant, and suffered significant and frequent losses of blood, such that I collapsed due to the loss of iron. Have had two visits to oncology, but with limited effect. Happy to report that the incidences are reducing, but have recently had two days of repeated heavy bleeding and mucus. From listening to your comments, it would seem that suitable precautions were not made in the radiation sessions, and that I should not have had to go through these extensive unfortunate symptoms, including the panic quitting of the golf course and the need to find conveniences at short notice.
I would welcome your comments or am I among the few to have to go through this.
Chris Simpson.
I have suffered the same Chris. its very unpleasant. I bleed often and sometimes the flare ups are really bad causing me to stay closer to home because I want to be near the bathroom and making it hard to go anywhere.. my doctors have given me no solutions other than keeping me in the hospital when the flareups are bad to make sure I don't become anemic and then let me go home.
You are not alone Chris. I also have proctitis that comes and goes. Urinary urgency most of the time when I exert myself. But I have resolved to live with it. 😊
I haven't started radiation therapy yet, but had my initial meeting with a Radiation Oncologist and he discussed some of the side effects that can come with the therapy. He reported that bleeding such as you described and the two other gentlemen that replied to you in general was not an issue where I'll be treated.
However, if something like that were to occur then referral to specialized gastroenterology is very effective. They perform Endoscopic Laser (Nd:YAG) therapy for severe radiation-induced rectal bleeding.
Not sure where you are being treated / followed but if they have no clue about the above then I'd request a referral to a Cancer Center / Comprehensive Cancer Center where they should have access to the competent expertise available to get your quality of life back to par.
Just curious, did your RadOnc place SpacOar or Barrigel prior to starting your radiation therapy? Hang tough man. All the best to you.
Sorry to hear of your ongoing problems.
I had 25 fractions of 68 Grey IMRT and ordered to be on ADT ELIGARD CASTRATION for two years. I refused further ADT after the first shot expired due to horrific and insufferable side effects.
During the final weeks of IMRT, I began to experience a lot of mucus with stool, but that resolved after a few months.
HOWEVER, a full year after completing RT, I suddenly experienced severe urgency, mucus and a little bleeding.
It was rather debilitating, but it resolved in a few weeks with no future issues.
I guess I was luckier than a lot of guys.
Wishing you a good outcome.
5:26
Thanks for your response. The post treatment care phone calls were very pleasant, but it took quite an effort for them to recognise the problem. Eventually the GP prescribed heavy iron tablets after having to go for a transfusion and two pints. Bloods eventually back to relatively normal levels, and the (small) golf course has become more enjoyable. (But still worried about a visit before starting out.)
Had they realised something of the problem, iron should have been prescribed much more pre-emptively.
What went wrong?....
It was 7 sessions of R/T over two + weeks…
However after the second day of treatment, I experienced pain whilst urinating and the flow was extremely small.
This continued for months after R/T ....but in addition soon after my "poo" had been almost non existent with mucus mostly and very occassionally a smallish lump of poo.
I had been taking water and with very little pee, but with determination and concentrating beyond the pain, I had managed to urinate very small amounts.
In effect I could not poo or pee effectively.
I had been eating well and drinking well as advised.
I was afraid of going to bed at night because of the fear of pain and not being able to empty my bowels nor pee enough....I set my alarm every 30 minutes so that I could get up and at least get some pee (very little) and occasional poo (only mucus and wind and very little poo).
It appeared that if I could get a decent poo, I could urinate much better.
On the 6th R/T session, I had a panic attack due to pain and called it to stop at the very end of the session and then rushed to the toilet to ease the pain a bit. I asked one of the nurses if it was possible for me to get a catheter in case of emergency because of my extreme fear of not being able to pee.
The radiographer decided to do my review that day which was the final review and she told me that this was to be expected and she gave me one large pad and three urine bottles for use if necessary in a plastic bag to take away.
It was also mentioned that the effects of R/T are likely to get worse over the next few weeks due to "flare ups".
A week after my R/T I had to call out the doctor because of excruciating pain and unable to pee and then emergency nurses appeared and fitted a catheter and a very large of urine removed.
Later I had to have a permament catheter fitted for a month because I could not pee.
Later still I was prescribed Tamsolusin and eventualy talked to a surgeon who informed me that he could not operate to clear the blockage because I had had R/T to the prostate and I would be either on a permament catheter of self catheterisation....Very depressed.
Not long after having been instructed on the use of self catheterisation and supplied with lots of catheters by the NHS, I somehow managed to force myself into peeing with great pain and from then on it improved gradually, (suggested it was Proctotitis), until at least a year later I am still managing to pee with effort and frequency and with the pills (Tamsolusin one per day).
My poo cleared up about a month after the R/T and is now normal.
18 months after the R/T my only problem other than tiredness is weak flow and frequency of peeing...But at least it works in a fashion without the use of catheters.
Relief!
But the question still on my mind is, what went wrong if anything?
My primary treatment with curative intent was prostatectomy in Sept. 2020 Gleason 4+3=7 with tertiary 5. 1st BCR early 2022, treated with salvage IMRT 39 sessions of 1.8 Gy, total dose 70.2 Gy, and 6 months ADT, again with curative intent. My 2nd BCR was Sept 2023, being treated NOW with ADT and Xtandi. I was hospitalized in Feb. 2024 with severe pancytopenia, and a Bone Marrow biopsy in March showed CCUS. Apparently bone marrow damage from the IMRT may not show up for years, but it is a known adverse effect. My physicians and I are hopeful that I am able to continue these 2 medications per the EMBARK protocol (I am not part of that Clinical Trial, just following the published protocol), and that the pancytopenia isn't due to Xtandi.
may i ask what was your psa readings after prostatectomy were and at what level you decided to do the salvage radiation. for instance me after prostatectomy I had a first psa reading of 0.20. then watching for a year it has crept up to 0.40. I have ED, numbness in my right groin area. I fear radiation will cause more side effects. I initialy delayed because I developed a hernia which I wanted to heal first. I am near 68 now. Your info makes me think i should never do radiation.
@@larryjohnson5807 My original diagnosis was made with PSA 4.01 July 2020. By late August PSA was 4.68, biopsy (MAKE SURE TO REQUEST IV CONSCIOUS SEDATION -- ANESTHESIA LIKE FOR COLONOSCOPY) showed Gleason 4+3=7. Robotic radical prostatectomy in September 2020 -- Gleason 4+3 with Tertiary Gleason 5. Lymph nodes turned out to be globs of fat -- pT2,Nx,M0 as the pathology, margins clear. PSA was below 0.01 for a year. September 2021 it was 0.01. Early December 2021 PSA rose to 0.17. First biochemical recurrence -- CT chest, abdomen and pelvis all normal with normal liver. Pylarify scan April when PSA 0.243 was negative. Orgovyx started 5/13/22 PSA 0.3, and 6/22/22 PSA fell to 0.012. Radiation as IMRT to the prostate bed started 1st week July 2022 39 treatments of 1.8 Gray each = 70.2 Gray total. Orgovyx stopped 11/23/22 and PSA stayed under 0.01 until April 2023. SECOND biochemical recurrence 8/28/23 with PSA 0.2 and PSADT of 1 month. Scans all normal except severe fatty liver, probably due to Orgovyx -- liver blood tests always normal. 11/14/23 PSA 0.63 and my Oncologist prescribed Orgovyx and Xtandi per the EMBARK study regimen. My Oncologist did somatic genetic testing -- CDK12 mutation. I read that ellagic acid can inhibit CDK12, like PARP-inhibitors inhibit BRCA mutations, so I started taking it in January 2024, with my Oncologist's permission. 1st week February 2024 I landed in ICU twice because of severe pancytopenia. I was off Orgovyx and Xtandi for about 4 weeks, resumed them, completed treatment course and stopped both 10/2/24. My blood counts have improved a little, but are still a long way from normal. Bone marrow biopsy showed a TP53 genetic mutation and my Hematologist calls it CHIP or CCUS. PSA results since December 2023 always under 0.01. 10/2/24 PSA 0.01. Medical articles indicate IMRT to the prostate bed can be associated with MDS or AML after a few years.
@larryjohnson5807 PS to previous post: Prostatectomy as primary treatment in cases without spread of any kind is CURATIVE about 2/3 of the time. First biochemical recurrence without spread is subsequently CURED by androgen deprivation therapy and radiation therapy about 50% of the time. Thus about 17 to 20% end up having a second biochemical recurrence. Prostate cancer that has a second recurrence is just controlled, but rarely cured.
@ BioChemical Recurrence (BCR) or RELAPSE after prostatectomy is defined as PSA 0.2 or higher. By the time scans were done my PSA was 0.3. The research around the world shows salvage Radiation Therapy can provide a second chance at cure (if no spread found on scans) of about half the men not cured by the prostatectomy, so I went for it! I have had a second relapse (BCR), so I am in the 16 to 17% that failed CURATIVE TREATMENTS (prostatectomy then RT, or reversal of that order). Again, the vast majority of prostate cancer patients live a long time after diagnosis and prostate cancer is not what the cause of death.
And, whether or not it is localized can be challenging to determine even with an MRI. MRI's can be wrong a percentage of the time and probably because of computer error or radiologist error. I can give you an example of myself having MRI's done of my central nervous system and had many MRI's done. Even though I had competent radiologists writing up the reports, not one of them noticed I had 6 lumbar vertebrae instead of the customary 5. And, in the middle of two medical professionals who were giving and going to give me transforaminal injections into about 4 or 5 different locations, I asked them if they knew I had six lumbar vertebrae and neither of them knew that despite them having a real time kind of XRAY machine, but when I said that they looked more closely and determined I indeed had six lumbar vertebrae and then needed to re-calibrate where they would give me the injections.
Just finished 1st week of IMRT!
Side effects usually start around the 3rd week. Good luck.
I’m 3 weeks from my last. All side effects are gone. They were minimal to begin with. Good luck
@@scottdavis5749 Thx! Great to know.
@@snakemanmike Thx, I’ll keep that in mind.
And ??????????.
I'm 72 and a about 10 months out from Bachytherapy at the Cleveland Clinic for Gleason 7 (4+3) PCa. PET scan revealed no metastasis. My 6 mo. PSA was 0.23 and I have (thusfar) experienced minimal side-effects. Hoping the PSA will continue to fall
Ten years after IMRT at a centre of excellence teaching hospital, did my long term side effects appear. Related to the urinary ability to drain the bladder. Have to self catheterize daily and been doing so now for over two years. Preferable to carrying a bag but not clear on what further options I have.
Thank you...this video is really helping
As a survivor I add that detection of the malignancy in Prostate problem in the early stages contributes to complications that the individual ends up experiencing later. Detection and even awareness of the medical check relevant conditions is critical . Men should be aware what PSA or Gleason factor means . I initially attributed to my urine flow problems to old age until a nagging back pain at the time suspected to be a UTI condition persisted evenafter antibiotics. So medical Health systems in developing countries must improve with acquisitions of detection equipment . Treatment procedures is complicated . Most will be familiar with surgery procedure but for those who have gone through it experiences show that it's too rudimentary and attracts different deterring conditions in pain or after care . My Radiation therapy had a happy ending despite a range of side effects some which am still experiencing like crumping.
What is crumping?
Excellent summary. What about occasional rectal incontinence at 10 months post radiation and occasional blood in the stool?
I experienced the same issues exact one year after completing 25 fractions of 68 Grey IMRT.
It was pretty severe but cleared up before long, and hasn't re occurred.
Good luck getting beyond this setback
Thanks!
Thanks for posting
Sorry to hear that
I've heard the Dr. mention center for excellence a number of times now. How does one find a center of excellence? I am headed for a biopsy next week on a PIRADS 4 from an MRI.
Hello Joe, our helpline will be able to assist you. You can reach them at pcri.org/helpline
Brilliant videos! Thank you so much! So insightful!!
Thanks Peter. Urinatory aspect not too bad for me but still appreciate that from earlier experience it must be a nuisance. Lost blood on the golf course this morning, again just as it seemed I was getting better.
Thank you 🙏 Very nicely done! Great video! Learned a lot 🇺🇸
Excellent
I had hormone treatment and IMRT (39 sessions over 8 weeks) when I was 64 with Gleason 3+4. I'm 71 now and can still get erections. I find it can take forever to ejaculate but when I do, they aren't usually dry ejaculations although there usually isn't much liquid. For some time after treatment finished I would get very frequent and extremely sudden urges to urinate. That eased considerably but now when I gotta go, I really have got to go. For me the worst side effect is that my strength never fully recovered after the treatment. I used to race as a vereran cyclist but I'm not strong enough to compete anymore.
did you undergo hormone therapy?
How long was the hormone therapy?
@jerrymunroe5593 It lasted 6 months, starting 2 months before I began radiation therapy. I had to take a Casodex tablet daily. Then after two months I was given a decapeptyl injection which coincided with the start of radiation treatment (39 sessions over 8 weeks). Three months after the first injection I was given a second decapeptyl injection. I finished my course of Casodex a month later.
@DeathSentryCoH Sorry, I just saw your question now. Yes I had hormone therapy.
Presbyterian New Mexico! Dr. Bowers! Excellent!
I am surprised that there is no mention of radiation cystitis with intermittent hematuria
Very professionally presented and very educational and thanks for sharing!
is it possible that HoLEP surgery before SBRT - de-bulking the prostate - could reduce side affects from the radiation?
Having had a complete prostatectomy at 68yrs with a psa of 0.080 now 7year later to have a recurrence two yrs ago with psa of 10 and doing a psma pet ct scan a small nodle was discovered on my lung which was extracted by a cardio thoracic surgeon and psa fell to 0.080. At such point my medical oncologist put me on eligard 22.5 injections every 3 months and bacalutamide 50mg daily but psa kept going up so another pet ct scan was done and it show metastasis on L5 and hipbone and was put on Averaterone 250mg, for 3 months. I just did another blood test amd my psa is at 43.2 .my Dr.say that cancer seems resistance to ADT however my testasterone level is below 20, which is good and now requested another pet ct scan and increase Abiraterone to 1000mg with 10 mg presdnisone. How did the psa go so high?
You could try switching from prednisone to dexamethasone, it should lower the PSA with abiraterone. Equivalent dosage: 10 mg prednisone = 1.5 mg dexamethasone. If you take it later than noon then you might have difficulty sleeping. If PSA goes still keeps going up then either switch to other second-generation ADT like Xtandi or try chemo (docetaxel).
Hello sir If I may ask you some questions about your case , Im six months post RP. You say you had psa of 0.80 after your surgery 7 yrs ago, was your psa ever undetectable? Also you say your PSa reached 10 over that time but were you getting psa tests during that period? it would seem you should have had radiation before your psa reached 0.2 at the very least , but if you didnt was it because you didnt test for many yrs? or was it a sudden jump from 0.80 to 10 which I understand to not be common if even possible.. it would help me better to understand my own situation if you can clear this up. Im undetectable for now but age 55 which is of course concerning. Thank you and God bless you on this journey.
8@@SeekingWisdom17
we need you guys to do a summit here in Boston Mass
Just excellent.
I really have appreciated your videos on prostate cancer. I would like to know what Dr. Scholz thinks of metabolic cancer therapy. The metabolic therapies include caloric restriction, fasting, and ketogenic diets. The approach is based on the idea that compensatory metabolic pathways are capable of modifying the pathogenesis of complex diseases. Dr Seyfried at Boston College is a researcher involved in this type of therapy. He believes that cancer is a metabolic disease basically of he mitochondria.
Any differences from seed to beam radiation on impotency ?
I’m dealing with a stage 4 recurrence of my prostate cancer and I’m in an interesting position because I’ve had both surgery and radiation treatments in the past so I’m pretty much totally dependent on hormone deprivation therapy for my future care. I found it interesting that the doctor mentioned that 5 percent of men have long term side effects from radiation treatments as far as ED and incontinence go; I find myself in this very small group.
Many thanks again for an insightful video
Once again will request the doc to talk about deciper test and how to use its results in determining cure options
look at some of his other videos dealing with genetic / genomic testing. He provides information on your question.
From my 2 years experience on ADT And Nubeqa
I would say the long term side affects would be mostly related to the slow degrading affect on the body of the removal of testosterone
For me, the degrading effect on the mind was worse than on the body. They never warn or even mention the severe brain fog that can occur, and develop into dementia.
...My side effects were so horrific and insufferable that I gave my doctor the old 4Q and refused any further ADT CASTRATION. But even now, 18 months after the first six month shot of Eligard ADT expired, my testosterone remains less than half of normal and no doctor will give me TRT. looks like I have to go back to Mexico soon where I can buy testosterone over the counter.
I had 26 rounds of IMRT in 2020 with the use of Spaceoar. I was 64 at the time. It caused ED, pelvic floor damage, and rectal bleeding since. I just had a PSMA-Pet scan it came back as still active cancer in the same location. I also need to take Flomax.
What hospital?
@@tonyzayner4313 Carolina Regional Cancer Center, Myrtle Beach, SC
After 1 year of having 5 high beam radiation, I am experiencing urinary issue all of a sudden. Mostly burning sensation and increased urination. First was thought UTI, but after examination it was ruled out. Per Dr, it is Radiation side effect. As a remedy AZO/pain killer is prescribed. But seems a temporary solution, as the burning sanction comes back and it is very painful.
I have prostrate cancer. I am presently 75. I have gone through Radiation Treatment followed by Hormone treatment. Initially it went pretty well. Eventually my PSA went down to 0.6 and my Hormone treatment was ended. Unfortunately my PSA started going up again. Further radiation is not possible so I am back on Hormone injections. Actually PSA is dropping and I am hopeful I may be taken off the Hormones again. Unfortunately I started seeing blood in my urine. Turns out after tests that my bladder is bleeding as a result of the radiation treatments. It is not too bad so there is no panic at this time. However I have to wonder if I should have had the prostrate removed at the start..
My dad had prostate cancer it wasn’t very bad. The doctor told him he could take it out or do radiation or leave alone. The doctor said he would probably die of old before it got bad. So my dad did the radiation it got rid of the cancer but he bled out his butt the rest of his life. He made it till 82. The cancer started around 74. Basically they did to many treatments.
@@vinceabbott1271 Yes, you have to wonder what the eventual price of that radiation ☢️ will be.
Are these side effects the same for all cancers ?
55 year old with Gleason 3+3=6, PSA 1.8, sizes 0.1 cm and .007 cm sizes.
Curious why did you do a biopsy? I have also a Gleason 3+3=6 lesion- I had a 4d screening that showed PSA 4.45 with MRI that showed PI-RADS 4 that indicated biopsy. Your PSA is 1.8 totally normal. Did your doctor feel a nodule on finger inspection?
I have been watching your vedios, my imperssion from the vedios is the prostate cancer (gleason 7 and up) will not able to get fully cured, the treatments are only slow the cancer spread process and gain some quality time for rest of the life, am I correct?
Erectile dysfunction after RT (although “only” 50% vs 80% for RP) yes, but dry ejaculation? I haven’t heard that it is common. I certainly didn’t get it after IMRT+proton boost for high-risk PCa. I did get some radiation proctitis, but that has been nicely suppressed with one Salofalk suppository per week. My “center of excellence” (Heidelberg University Hospital) did not recommend using a spacer gel in 2018.
Presbyterian New Mexico does the Job! I had the gel.
I've had 39 IMRT treatments 2 years ago.....refused hormone treatment. So far not a single side effect of any kind. After everything was said and done my Doc told me (if he had been in my shoes) that he would have chosen the same path. There is the caveat that some side effects may yet appear longer term......we shall see.
I had proton therapy at 65 for prostrate cancer. Short term hard to Urinate and felt a tired. Long term started about 73 with hip pain and stared to have low sex drive and my and had trouble getting Mr. happy ready and no come. I have no wife so isn't the end of the world. My woman friend is ok with it. I am 9 years out and low psa's so life is ok at 74. Miss the sex but I had a good sex life before probably better that most men so I don't feel cheated. Hips hurt on walks but other than that life is good.
Is ist possible to get a BPH after radiation ? And which treatments are than available?
I have a right side mouth ulcer and it's been a year since the radiation, still the right cheek is swollen as a result and there is a small hole, if there is any remedy to close the hole please let me know.
Thank you for asking! We have an incredible helpline of people who will be happy to help you find an answer to this. You can reach them at pcri.org/helpline
The unintended and often delayed side effects that RT can cause down the road REALLY need to be discussed at length when choosing a path to treat Pc.
Thanks a bunch…love your talks…blood in urine and maybe in stool can come and go for years really is unreal….learn more from you than my docs…had to have hormone treatment stopped because it was kicking my ass..now I take shots to get testosterone back to build body again…thank you soooo much…
I’m planning to go to Keck Medical (USC) in Los Angeles
I’ve going thru radiation now , and I have a overactive bladder what can be done for that side affect
Ok so clarification please. I have a Gleason 9. Should I do LD Brachytherapy as a standalone with no need for ADT or Brachytherapy (again if localized) with ADT or the Triple punch of Brachytherapy+ ADT+IMRT/SBRT???????????
Hey there.
I was diagnosed Gleason 9, localized....I had SBRT-5 high dose beams...Finished in mid-July this year.
Just about to have my first PSA post procedure, to see where my PSA score will be.
I would caution you when looking at ADT-it certainly seems to help, but the side effects...
A "Triple punch" as you called it, may very well be what you do but not necessarily what you need.
On a side note: fasting has helped me a lot-it starves the cancer.... When I had my 5 radiation doses, I fasted for a few days before each radiation session in order to starve the cancer, hence increasing the efficacy of the beam therapy. There are some peer reviewed studies on this from the NIH, maybe look it up-great reading.
So far, other than minimal side effects and yes, loss of sperm, I feel absolutely fine.
I hope all goes well for you.
I had 5days a week 7 weeks radiation treatment with gold seed placed in my prostate to locate treatment positions. After approximately 98 radiated seeds placed in prostate. Lots of side effects and visits to ER. Complete ED problems and after 7yrs my psa is extremely low but physically I have never felt normal and sex is not apart of my life anymore.
2017 psa 28 had a rad robotic prostratectmy. cancer was out of prostrate, scraped off bladder -2018 had penile implant. 8- 24 psa back to 2.1 now radiation. will the radiation harm my saline resivour inside me
Recent updated data from British Columbia published in the Journal of Urology (July 2024) showed a progressively increasing risk of secondary malignancy development after brachytherapy, up to 10% at 20 years. Is radiation therapy of any kind still a good treatment option for healthy men under the age of 70?
Thank U all for info ,I was diagnosed with radiation proctitis! It showed up a few months after 3 or 4 doses of radiation in my pelvic area it is very painful and not much helps,,I've been told no more chemo nothings working ,???
My testosterone level is 9.5nmol//L so at the very lower end of the scale and my Free Androgen Index at 19.15. Does this mean I could do without having Hormone therapy if I had Radiation as these are the only options being offered by the NHS here in UK!
What diagnostic testing have you done? Biopsy? Gleason grade? MRI?, Decipher test?, PSMA pet scan?
@@threeftr3349 biopsy Gleason 3+4=7 with 40% of gland cancerous and recent PET showed no metastasis 😁 MRI showed possible extra capsular extension into left seminal vesicle.
ADT significantly decreases bone density.. Radiation makes preexisting anemia worse. ADT induces occassional visual spatial perception causing fall at stairs. ADT causes initial drastic decrease in muscle resulting in drop in body bodyweight that making current bp medication dosage too high for lower body mass. Why these issues not brought up ?
These videos are excellent! Center of Excellence is the key!!! I was diagnose with prostate cancer Gleason 3+4. Elected photon therapy, SpaceOAR procedure and Lupron therapy. What I experienced was nothing short of a freaking train wreck! I had bladder stones, or should I say rock garden! The pain I lived with during the second thru the 5th week of treatment was earth-shattering! Experienced urgent bloody urination every 15 minutes, urination was tremendously painful! Had the bladder stones removed during 3rd week of treatment which should have been performed before treatment, continued treatment. 4 weeks out from radiation, things are improving, and I still can't sit on a mower. My recommendation is to GO TO a CENTER OF EXCELLENCE for treatment!
I have a friend who is Gleason score 3+4 at 74 yrs of age and doctor says watchful waiting is all thats needed at this point in time.That seems to be at odds wìth what i am reading here.Anybody else with 3+4 that has been told this ??
@@dalebishop5936 Does he have Medicare advantage?
Did he have any other diagnostic testing to confirm his Gleason score? ...such as a Decipher test, MRI or PSMA Pet Scan? What is his PSA? What was the reason he had a biopsy? Does he check is PSA every year? or every 6 months?
@@dalebishop5936 Yes a 3-4 is favorable, at 74 is preffered
Damn I had Radiation, Surgery and Hormone treatment I am screwed for erectile function.
Hyperbaric oxygen therapy is an absolute must after prostate radiation. It's terrible to wake up to blood gushing out of your rectum 2 years after your treatments. Delayed proctitis is no joke.
You did this right after SBRT even before having symptoms?
@Sam-jr2nc . Unfortunately my symptoms started before the treatment was even completed
Even with spaceoar?
Would you please provide additional detail on your hyperbaric oxygen therapy? How soon after radiation? How many treatments? Time period between treatments? etc............. thanks much!
two years out from 39 ebrt treatments and I am experiencing Not leakage, but cannot pass urine at night when I wake up. Doctor said it is the result of radiation. So the question is, why can I go during the day but not a night?
I don't think you brought up what you consider in another video your best option for radiation, which is HDR
Why do you feel HDR is best? Are there less side effects (short/long term)?
I'm hearing very few SE's from Clarity Cu67.
I have no idea if my side effects were from radiation, hormone treatment or surgery as all were done at the same time.
I am an 80 year old whose PSA went up to 23 and my Gleason score was 8.3. I underwent 45 radiation treatments and also have been prescribed Orgovyx and Aberaterone for two years.
I am extremely fatigued and weak and get out of breath with mild exertion.
Is this normal?
I had radiation therapy, it cured my cancer, but it atrophied my penis (loss of 5” in length and my testicles are the size of garbanzo beans) I’m incontinent now. All in all - prostate cancer took away my quality of life. I’m 16 years cancer free, relationship free and gym free.
So sorry to hear this...wow
Thanks, it’s too late for me! I am warning people to find out the “personal” facts of the actual symptoms post-radiation that no doctor apparently felt it worthwhile to convey!
@predickament I am scheduled for impt with proton. What type did you have? You had adt as well? Wondering if I should rethink my treatment
@@DeathSentryCoH I had external beam. Good luck!
@@predickament ty!!!
How in the world can they have so many options to treat prostate cancer!!!! Can't they figure out a way that works!?!? It's almost as if there is no cure at all. Did they just make you have side effects and possibly I'm thinking that you could live just as long if you had no treatments! Thoughts anyone please because this is becoming overwhelming for me to decide what course to take. I really really think of doing nothing! I am getting so frustrated and mad! No cure? Unbelievable.
Am in the same boat. Gleason 8..but these damn treatments are so scary
This is only if it is localized.
My PSA is 39 but the biopsy says it's a Gleason 3 + 3. Since 3 + 3 tumors don't metastasize I have to figure out if I want to do something as drastic as surgery or radiation for a condition that isn't life threatening, at least in the short term. Is there any way to shrink non-metastatic tumors without all the side effects of radiation or radical surgery?
PSA is quite high for a GS 3+3. Do you have a high volume prostate?
@@SeekingWisdom17 From the MRI: "Enlarged prostate gland is about 3.6X4.2X4.9 cm with volume 38.5 mL.
1# There is a 3.4 cm circumscribed hypointense T2W leision with marked DWI restriction involving transitional zone from base to apical levels, as well as anterior peripheral zone at apical level, PI-RADS 5. Bulging anterior capsule could be extraprostatic extension (EPE)."
The first biopsy came back as indeterminate so they sent me to a different hospital for what the described as a "deeper more thorough" biopsy, whatever that means. It was a bloody mess. It also came back as indeterminate to they sent the biopsy to a third laboratory which returned the Gleason 3 + 3 diagnosis:
"TRUS biopsy(18/4/2024): Rt lobe: Adenocarcinoma, Gleason score 3 + 3. Tumor involves 5 of total 16 fragments. Confirmed w(at this point the printing runs off the edge of the page)
Lt lobe presence of stroma and part of seminal vesicle; no prostatic acini was obtained.
Could you please provide a reference for "Since 3+3 tumors don't metastasize ..." ? I have a 3+3, and I need ammo to deal with oncologists. Short history: Radical prostatectomy 1995 (didn't get it all) External beam radiation 2011 (didn't get it all) 24 months of ADT 2022-2024 (Didn't get it all) .
Sometimes I think they just make things up to get me out the office so they can have a tickle party.
@@glennmeisenheimer1128 I needed to put your post in chatGPT to understand it in easy English. This is what it gave me:MRI:
Your prostate is bigger than usual, measuring about 3.6 x 4.2 x 4.9 cm.
The MRI found a suspicious area in your prostate that's darker on certain scans and might be restricting water movement (not a good sign). This area involves the middle part of your prostate from top to bottom and the front edge near the top.
The radiologist who looked at the MRI thinks the suspicious area might be growing outside the prostate (not good).
Biopsy:
The first biopsy results weren't clear (indeterminate).
You had a second, more extensive biopsy (probably took more samples) at a different hospital. This one was pretty uncomfortable (bloody mess).
The second biopsy results were also unclear at first (indeterminate) but after sending them to a different lab, they found cancer.
Cancer details:
The type of cancer is adenocarcinoma.
The Gleason score is 3 + 3, which is a low-grade cancer (good news).
Cancer was found in 5 out of 16 samples taken during the biopsy.
The biopsy of the left side didn't get any prostate tissue, just other stuff.
My understanding is the 3+3 may not metastasize, but there is nothing to stop other higher grade cancers from developing and spreading.@thomassladek9437
How do you afford these adt medications..some cost 3000 for 30 pills
I joined a study...Reguolix was free for 1 year
Fortunately I'm Canadian with free health care and free cancer drugs.
Pills are suppose to be way cheaper than an in office injection. If your insurance doesn't cover the pills, perhaps they will cover the in office injection, which is just a little bit more than the price they quoted you for the pills. What kind of insurance do you have? I hope it's not Medicare Advantage.
Try to join a study....then they are free
😮
One side effect is that if you have no vehicle you will spend all week going to and from your appointments
I have 3+4 diesase and also have well controlled Ulcerative Colitis. I was considering having radiation therapy as opposed to surgery however the doctor who would be doing the radiotherapy advised against it due to my history of inflammatory bowel diesase. The consultant treating my colitis said it was a seperate entity and said that they rarely came across radiation proctitis. Has anyone any experience of this?
Dr Schholz is excellent, however he say mentions hyperbaric oxygen therapy as an adjunctive wound healing treatment. I worked in hyperbarics for years, even taught courses in it, all the good objective evidence shows it is either noneffective or detrimental. The theoretical rationale is outdated and the well done prospective clinical trials all argue against it. Please don't in any way promote this treatment. I would be glad to provide more info. I am well versed in the area.
I would like more info on why it is no good
@@Sam-jr2nc You can go back to a letter written to the New England Journal of Medicine in 1987 Hyperbaric Oxygen Therapy "A Therapy in Search of a Disease". There have been many clinical research studies and the better ones typically show no effect and some negative consequences for wound healing. It is a great therapy for decompression sickness and arterial gas embolism. A lot of the people who make money from the treatment have done studies showing it is effective. The basic science claims for rationale of hyperbaric oxygen in wound treatment just don't make sense, large doses of oxygen are toxic, you can marginally improve wound healing by taking ground level oxygen, but it is a trivial level of improvement (increased collagen crosslinking). I worked in the area and saw people try to do research in the area and basically they quit the research projects when they saw bad results. So the clinical research you find in the medical literature is mixed but most is low quality because it is almost impossible to ethically do proper controls. I worked in one of the largest therapeutic facilities in the world and all the technicians thought the treatment was worthless, one asked "who have we ever seen who was cured?" one asked one day. The physicians liked it because it was really easy work for them. However the physicians who worked in HBO were really good at wound care which was generally provided every day. So when people started HBO treatment they also started receiving daily excellent wound treatment and saw improvements in the wound (in my opinion it was from the wound care not the HBO). I know this is not a clear cut answer for you. It is an area of medicine nobody wants to kill because people make a lot of money in it and have a lot of money invested. It is a cult type of therapy, people come to believe in it like a religion, but I am totally convinced it is worthless and I used to teach classes in it.
I have had severe fatigue 10+ years. A naturopathic dr suggests hypabaric treatment. Now seeing your advise makes me wonder it’s of any value. I also have Gleason 9, psa was 12.5, now after two months hormone reduction and hi dose vitamin C & Magnesium infusions my psa is 0.8.
Seeing these many posts about RT, I’m getting more questions if I can even handle even the side effects of MORE fatigue. I am 79, healthy except for the
fatigue & prostate issue. I’m wondering that with all the side effects of treatment w
I might have a better quality of life to just let nature take its course.
State of the art centers? A center of excellence? Which centers are these!?!
How about those of us who suffered massive mucous, diarrhea, and rectal bleeding after only 11 radiation treatments?😎
I hear no mention of this, My treatment is creating regular rectal wind over first 10 treatments and a gel like discharge .Can this be from the pre treatment enema
Colonoscopy discovered and removed six polyps (two were large). Will resume radiation treatments in a few months.
My dad just finished four weeks of radiation for his bladder cancer. He is in agony everyday and all i can think of is that he is burning inside. He lives in the bathroom since he has urgency to poo and pee. Anyone know what happened? Is this common? He was perfectly fine before other than the cancer found in bladder. Wiĺl his pain go away? He ranks it a 10 and thinks he is going to die from the pain. Been to emergency room but they keep releasing him with pain meds. Radiation kis awful.
So sorry to hear this, he needs some aftercare guidance from his oncologist.
I think bladder cancer is a whole different kettle of fish from prostate cancer, much more serious and little in common with PC and the way it's treated. He should be all over his urologist and oncologist to sort this out, not the local ER. I hope he gets help soon. I had a cystoscopy when I was suspected of having bladder cancer and after it it was extremely painful to urinate and there was blood clots etc, so I know a little of what he is going through and it's not nice😢
You forgot doing nothing is also an option.
I really hope somebody will answer this because just like a lot of men out of here say I got surgery cause I wanted it out and don't even understand that the recurrence rates are nearly identical. I hear this all the time when they chose surgery. Well if I got radiation first, I couldn't have surgery, which is generally true. It makes it much more difficult, but when would that ever be an option? It almost feels like a strawman argument that men make to justify why they choose surgery.. it seems most of the time if radiation fails they re-radiate if there's an instance where a person had radiation, but having surgery at a later date might be important. I haven't found it yet so again, I feel it's a strawman argument, although it's true it's not something that's applicable and yet mini make men are making the decision of surgery over radiation versus this strawman. Can anybody chime in at all on where it might still be important to leave surgery is an option after Radiation.
Look for "Salvage Prostatectomy"
Oddly enough, I still have semen fluid after radiation. Not much but still some, and it doesn't come out of the rate or timely fashion that it used to.
So a 55 yr old getting radiation treatment has a 1 in 3 chance of becoming impotent. Yikes!
Yep I'm 67 and still get hard as a rock with no pills......my life is about to change WTF!!!
Also a side effect of prostate radiation is the need for cathetering the rest if your life.
Can you tell people the very bad psychology after prostatectomy , tell the victims they will feel like dog castrated. This is how I feel after my surgery. 3 years don't feel anything. He'll be coming to my doctor what he did to me. Lies was all this website. Tell consequences, too....I will never be fine is a male again. My truth.
I'm sorry to hear this, I'm torn between radiation and don't want surgery.
@@johnmchale8308 I'd go with the radiation the other option is total
I’m sorry for what you are going through. Take good care and stay strong.
What about CyperKnife radiation method ?
Excellent summary. What about occasional rectal incontinence at 10 months post radiation and occasional blood in the stool?