Advanced Prostate Cancer Story: Jan Manarite Advocated For Her Husband For 13 Years
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- Опубликовано: 2 авг 2024
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May 6 | Free In-Person Cancer ABCs Prostate Cancer Patient Conference: www.eventbrite.com/e/prostate...
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PCRI's CEO, Alex Scholz, interviews Cancer ABC's Executive Vice President, Jan Manarite, about Cancer ABC's patient services, her best practical tips for men who have been recently diagnosed with prostate cancer, her husband's experience with prostate cancer, and Cancer ABC's upcoming (as of the time of this writing) conference.
Visit Cancer ABC's website cancerabcs.org.
Cancer ABC's is a non-profit organization in New York City whose mission is to provide education and other resources that bring tangible improvements in the lives of cancer patients. Although the organization provides support to people afflicted by all types of cancer, it has always had a special focus on prostate cancer.
0:56 What brought you into the prostate cancer space?
3:43 What process did you and your husband use to decide on treatment?
6:13 Can you tell us more about Cancer ABC's?
10:57 What are your biggest pet peeves in the prostate cancer space?
13:00 If you had to give five big points of what you wish every prostate cancer patient would do, what would they be?
17:32 How can men with advanced prostate cancer and their loved ones maintain hope?
19:33 What is the latest news with Cancer ABC's?
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To learn more about prostate cancer visit www.pcri.org
Who we are:
The Prostate Cancer Research Institute (PCRI) is a 501(c)(3) not-for-profit organization that is dedicated to helping you research your treatment options. We understand that you have many questions, and we can help you find the answers that are specific to your case. All of our resources are designed by a multidisciplinary team of advocates and expert physicians, for patients. We believe that by educating yourself about the disease, you will have more productive interactions with your medical professionals and receive better individualized care. Feel free to explore our website at pcri.org or contact our free helpline with any questions that you have at pcri.org/helpline. Our Federal Tax ID # is 95-4617875 and qualifies for maximum charitable gift deductions by individual donors.
The information on the Prostate Cancer Research Institute's RUclips channel is provided with the understanding that the Institute is not engaged in rendering medical advice or recommendation. The information provided in these videos should not replace consultations with qualified health care professionals to meet your individual medical needs.
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As a loyal follower of Alex & Dr Scholz I am sorry to say that a conversation on "PSA 7,000 and 13 years" without touching on "How?" has been a disappointment. One would expect a few words, at least, on the type of treatment(s) followed and the benefits obtained.
I’m so glad that I found this video. My husband is newly diagnosed. Gleason score 9, PSA 8.11, spread to spine. His urologist said he had 3 to 5 years, even with hormone treatment. I asked my husband today if he wanted to get a second opinion, he just shrugged his shoulders. Hearing that your husband lived 13 years gives me hope, thank you for sharing. 😊
You definitely need to get a second opinion for your husband. Always...! Part of the deal. Best of luck!
How is he doing
how old is your husband?
3 to 5 years only? sounds like they are giving worse case scenario to me. I have stage 4 prostate cancer which spread to 4 locations in the bones, two of them in the spine, Gleason 9 and the PSA was 12.1. I only had urinary symptoms, never any bone pain or other issues. I 've been on hormone therapy for 10 months, PSA dropped to 0.47 by hormone therapy alone, Lupron and Abiraterone Acetate (Zytiga). No other cancer spread. Just got radiation treatment to the prostate and all 4 bones sites, with the hope of clearing up the visible existing cancer. Too early to see the results of the radiation treatment. Yes your husband needs to get another opinion. I think the grim outlook he was given was unfair.
@@timothyfay1209 How has the hormone therapy affected you? Muscle atrophy? Panic attacks?
Where is the story ? 13 years and very little information on how her husband progressed during those years and the treatment that was undertaken. That’s what I expected to be covered in the discussion.
Yes, same here. Just seemed like one big infomercial for her advocacy group.
What a great message - thank you PCRI
I wish I had a hero like her there for me... She was probably the best medicine.
Thank you Jan,
Thank goodness for the wife’s. I have Gleason 8 now in remission if it hadn’t been for my wife and investigating my disease and insisting I get a 2nd opinion I don’t think I would be here. She got me into Mayo and after 2 years of aggressive treatments I am doing well. I do feel I have a future. My own doctor at Mayo told me you have to advocate for your self. Thanks for your videos I have learned a lot about my disease. Keep up the good work.
Did your aggressive treatment Chemo?
I am curious... was it Dr.Eugene Kwan at Mayo? Thank you and good luck! Im in a similar situation and I am aiming at aggressive treatment.
Agreed@@janmanarite1820
Can you explain your treatment plan?
Stop the bullshit with the mayo clinic
Awesome.i was able to meet Joel onceHe is a true PC hero.now seeing Jan. She is also a hero. V Dan Kasper 10 years metastatic stage 4,
.8 years undetectable. Never give up hope, always keep the faith!!!
Totally agree. Good post! I spoke with Joel on the phone once, and everything he said was quite helpful and right on target.
This gives me some hope for my dad that was just told he has metastatic prostate cancer. Where did yours metastasize to??
One of the joys of attending the PCRI conferences in LA each year was catching up with Joel and Manarite.
Always inspirational!
Outstanding!
Jan your great an advocate for the patient
Thank you for sharing your husband's journey. Glad to hear about his 13 year's survival despite the presenceof metastatic disease. Please allow me to ask what his performance status was during that period of time. Was he very sick for an extended period of time? How much pain was involved?
@Jan Manarite Thank you for your response. Much appreciated. I've advanced prostate cancer. Pretty aggressive too. See what happens... God bless!
@Jan Manarite I use by by by no see CT
I don't see how her husband recovered by his high psa. But she was focusing on her research work about prostate cancer talking to Dr. would be informative on her part., but what we want to know who had prostate cancer how we cercumbent hight Psa... Her research and study is not our ultimate concern but to recover our physical condition..
This woman is a beast.
💪🙏🙏❤
Ten years metastatic-currently .05 PSA
what did you do please ?
your Gleason score ?
G7
Hormone therapy put you in remission?
More Amazing information Alex... THANK YOU!
Very interesting and helpful..thanks
Such a valuable great interview!
Doctor I have a cyst 4 years ago, I used to have painful ejaculation, now for the last 2 months I have been having burning pain, I was undergoing urine infection treatment which did not stop and lastly there was extreme pain in prostrate, now there is pain in pelvis area towards the bone, I got regular CT and ultrasound done last month, there was no stone, it was just ecoli infection. Are my symptoms of cancer? The doctor does not tell anything other than stone, prostitis and uti, and the pain is increasing with sitting.
Can Someone provide the information on the podcast that was mentioned at the end of the interview? Thank you
Here you go! www.cancerabcs.org/podcasts
@@ThePCRI thank you
You’re husband lived 13 with metastatic cancer , what was his Quality of life like
Lucky man...
If you do a remote with your Doc, you can record it.
I am curious to know what she thought about getting a biopsy. At one point should you get one.
When you want a diagnosis.
7000 ?
I would love to get more time for discussing things with the doctor, but the doctor won't spend time to answer multiple questions. It is always rushed to some extent. Currently, I go to the Mayo Clinic, where you get one hour appointment with the doctor, so plenty of time to ask questions, big difference than the standard Oncologist appointment.
Which state is the mayo clinic in?
The PSI is not the very best test for prostate cancer. There is a newer more accurate (though more expensive) test called the 4Kscore test from Opko health that is available.
@Jan Manarite Am I wrong in thinking that it's a much more accurate (although more expensive) predictor of prostate cancer than a regular pcr? I read your link, and it's not clear to me why anyone wouldn't prefer the 4kscore, other than cost.
@Jan Manarite ok thanks
Psa was a blessing for me, psa 3.9 Gleason 9
Yes it was expensive. From Bio Reference it was $768.20 USD. After insurance deduction (April 2023) I paid $496.45. The test showed a huge drop in PSA and free PSA @ 17 which I determined to be good enough to put off biopsy....indefinitely. I paid more for my car's 30,000 mile automobile checkup. But keep in mind the man typing this is not convinced that 12 (maybe more?) needle jabs through his rectal wall into a gland he feels evolution has protectively hidden more than his own heart to extract tissue should be undertaken without an immense amount of consideration. Disclaimer: I also had a clean MRI. Still, given the huge decline from recommendations of surgery now to active surveillance gives me grave cause for concern. I'm also able to read and understand my results and make my own medical decisions. I realize some people (even some I consider friends) cant understand test results... but imo it's really not rocket science. I've heard "it is to us." (Us?) So I'm writing this for whatever it's worth to anyone, and also agree it's expensive.
Whether vegan diet helps to cure
this cancer?
There is no evidence that we are aware of that a vegan diet could cure prostate cancer once it is large enough to be clinically significant, but Dr. Scholz, who is in most of our videos, has noticed that some of his patients with advanced prostate cancer have gone on a vegan diet and then afterwards their previously rising PSA had slowed or stopped.
A rigorous study would be required to see if there was a connection there, but it seems to be a safe and reasonable thing to try, especially in those rare cases when men end up in urgent or desperate situations, for example, cases with distant metastasis and/or castrate resistance (checking with doctors, of course, to make sure a person is getting all of the nutrition they need considering any treatments they are going through or any other special consideration).
I don't think so. Instead, I feel adequate vitamin D levels need to be maintained, there is a blood test for Vitamin D levels. Vegan diet might be OK but the man must be cautious of too much Omega 6 which increases inflammation. It's easy on a vegan diet to intake too much Omega 6, so when going vegan make sure to get an adequate amount of Omega 3 as well, which can be tricky on a vegan diet because vegan dishes can be very high in Omega 6.. So although Dr Scholz who I respect immensely saw good results in patients going vegan, my highest PSA score over a 10 year period was when I went vegan.
My doctor says PSA tests are a waste of time. Too many false positives. PSA can be high for a multitude of reasons, and high numbers often cause knee jerk reactions and aggressive treatment that isn't necessary and can be harmful. Also, low PSA is no guarantee either. Often the most aggressive forms of the disease, the ones most likely to kill you, don't raise PSA at all.
Scary, but true!
The role of PSA can be overemphasized as it can be more of a check engine light but to say it's a waste of time is wrong.,
An indicator to get yourself checked
I would find another doctor, my psa was 3.9 Gleason 9 , if my doctor hasn’t pushed me to get it checked, I would be eat up with cancer, luckily we catch it is time
ALan Sech I had a psa of 3.8 up from a 2.8, when I went to my Female Doctor, she found a lump, guess what, bingo, stage 8. caught it early, don't play this game! I went through radiation. and i'm here to tell you, get yourself checked.