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During surgery, yes, I think so. They biopsied some surrounding lymph nodes and I received results after I returned home.

I would post updates, but not a lot has changed since this 5-year update aside from some more gray hairs. My health is the same. Continence is the same. Still alarms every 2 hours at night. My oncologist said my primary care doctor can take it from here, so I have stopped seeing the oncologist. Also stopped seeing my cardiac oncologist. Also stopped seeing my nephrologist. So aside from my primary care physician, the only cancer-related doctor I see is my urologist. He saved my life so I’m happy to see him. Other than that, life is pretty much the same as it was in this video. I know it’s hard to believe for people currently going through cancer diagnosis or treatment or recovery, but for me the new normal eventually did become normal. Normal is normal, and happily I don’t have much to talk about.

@@bladdercancerandtreatment. That’s awesome! So happy for you. People want an update because they are hoping the best for you. So even if you jump on and say what you wrote, we’d appreciate it! My husband is starting the journey and all hope is welcome. 🙏 best to you, thanks for sharing.

That is a healthy approach. Take it one step at a time. It is what it is. Also, it is going to be what it will be. That was my mantra. Some people took that as me not having hope, but that wasn’t true. I hoped things would turn out well, but I was also ready to accept whatever it would be. Acceptance was how I coped. I am a controlling type of person, but I realized that I had very little control in this situation. No amount of research on my part would fix it. No amount of worrying would make it any better. The best thing I could do was to accept my situation, find healthcare professionals that I trusted, and pursue every treatment available.

I have never self catheterized. Please ask your urologist/surgeon what results they anticipate for you given your situation and their past patients’ results.

⁠Will do. Thanks!! I’m leaning towards neo bladder as I’m only 47. I feel like this option would give me the most normal life style.

It's a mixture of both. I may get a sensation similar to being full of gas, but not always. If I get too full and do not realize it, I suddenly have trouble holding it in. Because I worry about that, I've trained myself to go every couple hours. I get nervous that I've waited too long, so I just go.

@@bladdercancerandtreatment thanks. I’m a 47 just had the turbt done and found out it’s muscle invasive. I’m just scared, and your videos have really helped.

I’m sorry, that sounds awful. I think you need to see a urologist.

@MikeP-p9h 4 cycles of dose-dense MVAC. I had a port in my chest.

Thank you for all of your info God bless you I have my first chemo tomorrow but it is through a catheter @bladdercancerandtreatment

In the hospital, immediately after surgery, my throat was a little sore from intubation. I wasn’t allowed any fluids for a little while, and wasn’t allowed any food for longer. Even after I could eat solid food, I took it slow and didn’t eat much for a few days. After I got home, I didn’t have any specific issues with swallowing or lack of appetite. I’m sure I ate less, just because food wasn’t my primary concern and I was not comfortable. If you’re caring for someone immediately after this surgery, maybe just offer them small healthy snacks that they can eat without trouble, where they sit, without having to get up or even sit up. I had a lot of stuff going on and eating felt like just another burden, so easy food was better for me.

No I don’t, but I don’t think I’d have any problems as long as I could stop to urinate every 2-4 hours.

​@@bladdercancerandtreatment Kyle, really interesting your story, and I guarantee to you that you should be proud of sharing your experience. I am sure that (also in my case) is helping a lot of people to go through this tough part in life, and give (us) some hope. I also have had similar diagnosis, but it was TCis, so really intial, But in any case it has been suggested (by the doctors here in the Netherlands) the cistectomie. Searching a bit i´ve seen that there are the 2 types, with the poach or with the neobladder. As a young person, the poach really seems to be rough, because of all the appearance, and to have that attached to your body, etc. pretty sure youve been through this, weighting which one is better. But I also have heard a lot of issue with the neobladder, as people that needed to use a catheter to empty the bladder (which freaks me out thinking doing this 5x a day). Do you need(ed) to use the catheter? or if not, how does it works? it comes out naturally? Best regards, and again, thanks for sharing! All the best

I have never had to use a catheter. Before the surgery, my doctor assured me that I would not need to, and honestly I did not believe him, but he was correct. Please ask your surgeon how many of his neobladder patients have to catheterize, and what differentiates those who do from those who do not. My surgeon told me the people who end up having to use a catheter have stretched their neobladder too much. Imagine filling a small balloon with water and squeezing it in your hand-the water would spray out and you could probably empty the whole balloon. Now imagine putting the same amount of water in a much larger balloon and trying again-the water would just go to the areas of the balloon that you are not squeezing. This is why I urinate on a schedule and have never tried to increase my capacity beyond around 3 hours. I have kept my neobladder small so that I can void it 100%.

are you able to work? Did you have pain with your cancer before any treatment? What symptoms did you have early on?

@Taylor-ix3om I returned to work 2.5 months after my surgery. I am a software engineer (desk job). I had no pain. My only symptoms were visible blood and tissue in my urine.

I’m still here! No changes to continence or daily life beyond what I talked about in this video. No longer seeing the cardiac oncologist nor the nephrologist. Still see my urologist yearly. I saw trace visible blood in my urine a few years ago and had a rigid cystoscopy to investigate. Ended up being a lesion on my bladder that my urologist cauterized. That’s been the only complication since this video. Still here. Spent the weekend financial planning for retirement. Taking a vacation down to Gulf Shores with my kiddo next week. Just living life!

Thank you so much for responding. Very happy to hear you are doing well. My husband will be having this surgery next week and we found your videos quite helpful. Thank you

@Samson-EC That's correct. I haven't slept for more than 2-3 hours at a time since my surgery.

@@bladdercancerandtreatment Thanks very much for your time. I wish you well..

I'm sorry to hear that. Aside from the cancer coming back, incontinence was my biggest fear going into the operation and was one of the things that I asked my urologist/surgeon about many times before making the decision. It seems that continence is a bit fragile. My urologist assured me that I would be continent, but he also is reluctant to do any cystoscopies now because they can affect continence.

@CMTattoos I didn't consider hormones. I was just trying to stay alive. That said, I have not noticed any hormonal differences after losing my prostate--nothing that couldn't be attributed to just getting old (38 when diagnosed, 45 now). My prostatectomy was nerve-sparing. I still have the same sex drive and almost the same erections (maybe 90%). I no longer ejaculate, but I still have the same muscle contractions (just dry). I have never catheterized. I urinate by flexing my abdominal muscles and pushing it out. It's hard to describe, but I bet you can do it right now with your bladder if you try to force the urine out while you're urinating. I don't do any heavy weight lifting or fighting, but I don't think I would have a problem with that--especially if I urinated before (which I would). Biggest changes for everyday life is that I urinate on a schedule--every 2-4 hours during the day, every 2 hours at night (I set an alarm for every 2 hours at night to wake up and urinate, and I do that all night). Training the muscles to retain urine and expel urine took maybe a month before I was confident. I don't have any techniques to pass on, but if you're fit, and sounds like you are, then you should be fine. The muscles I use to retain urine seem to be very similar to the ones that I use to hold in a fart. Different, but very similar. Took me several months to be able to fart without peeing. I am very leery of not having tubes by the time you leave the hospital. Check the description of this video for my timeline. I had tubes for 6 weeks after the operation. Each of those tubes had a reason and purpose for being there. Why are you choosing between chemo or a cystectomy/neobladder? I had both. If you are young and fit, then I strongly recommend both. The data when I was diagnosed said that chemo raised the 5-year survival rate by 5%. That is worth it. No doubt. If for some reason I had to choose, I would have 100% chose cystectomy. In my case, chemo was only meant to raise my survival rate by destroying any cancer that may have been elsewhere in my body, just in case. It is the cystectomy that removed the cancer and I believe it is the cysectomy that saved my life.

@@bladdercancerandtreatment thank u 4 the quick response .i had allreade done 4 TURB (the most intense pains i have ever felt )in 3 years but now its invasive in bladder mucle (pT2)..........I am afraid of all this especially when i am learning that u can go for neobladder but wake up with pouch due to short intestine blood vessels ?!?! and iam not ok with that AT ALL >... iam trying to coop with the idea by searching and investigating my self but its really frusttating .The two options they gave are cystectomy (neoblader option)or chemo and radiation (aggressively treatment ). bEcause i provide for my family (i have my own shop) i cannot figure out how to make all happen with tubes , urinating , spacial underwear and everything and work at the same time because 4- 6 weeks (as u describe )would be a very long time without working so iam thinking to start with chemo .On the other hand my ongologist told me that i would stay in hospital for 5-6 days (as u said)and i will leave hospital without kathetire or any tubes for that matter .On the other hand both doctors told me that ist extremely difficult to keep nerves that make erection possible (in contrast with what u say and live ),(i dont know what to believe) so am i looking in some kind of impotence ?No erectile function at al l??that would be a big problem for my relation with my wife and family (long term )..I have taken second opinion on treatment and the second doctor told me to start with chemo because cancer has entered the mucle tisue of the bladder but not gone through , though in future i might need to do a neoballder because chemo and radiation would scar the bladder and it would be almost useless.On the other hand i have question about stent on chest for chemo .As i learned there are 3 ways .1) pouring chemo inside bladder throygh penis with kathetre 2)put chemo intra veins 3 )stend on chest .. what are the diferences ?(i know u chose on chest with full anesthisia ) . the worst thing for me is fear and strange thought pattern and scenarios in my head .I am praying to god because i do not trust the doctors but ......time passes by and i feell a constant tik tak in my head .Anyway thank u for the answer and the info on your viedos.you make it seem easy but i know it wasnt .thnk you

@CMTattoos Word of warning. I was not able to work consistently while receiving chemo. My work is mental, and I did not have the capacity half the time. After surgery, I didn't leave the house during my multi-week recovery period--physically I could have, but mentally I didn't want to deal with all the tubes because they were unsightly and cumbersome. I don't know your situation, but if you have a one-person operation, you might want to think about hiring somebody you trust who can help you run the shop and help take care of your customers. Not just during your treatment/recovery, but also in case you are not able to in the future.

I chose a port because the type of chemo I took (MVAC) can permanently scar/harden the veins in your arm. With a port, I never had any pain during chemo infusions because the infusion site was predictable and I was able to use lidocaine to completely numb the skin in the area. The port requires out-patient surgery to install and remove, but I was able to combine those operations with other operations that I already needed.

@@bladdercancerandtreatment thank you very much for the info .my two things that i have to work with is to keep visceral nerves for erectile function second i want to be assured that neobladder is what i will get after surgery and not anything else and 3d i have to make sure and clear any day to day scedule about recovery ,though my doctor told me (4 the second time )that i will not have kathetre nor tubes when i leave the hospital ??!?!?! thats a strange reassurance because you and others say that for 5weeks (minimum) to 12 (maximum )is the recovery period ...

@sickomode1960 I'm sorry to hear about you and your family's situation. If you have any questions that I might be able to answer, please ask them here so others can benefit from the conversation. You might also look into the Bladder Cancer Advocacy Network online forum: www.inspire.com/groups/bladder-cancer-advocacy-network/

Did you have any back pain or felt irritated bladder from the tumors? Also did your urologist know what type of tumor or if it was invasive or non invasive after the cystoscopy?

@sickomode1960 No, I had no pain or symptoms aside from small amount of blood and occasional clot in my urine. Back pain sounds more like a kidney issue to me, but I'm not a doctor. My urologist did not provide a diagnosis after the initial, flexible, in-office cystoscopy. I was not diagnosed until the second, rigid, out-patient cystoscopy and TURB. The in-office cystoscopy seemed to just be confirmation that there was an issue. The second was to figure out how extensive the issue is and get it graded.

Do you self catheterize every day:? how it is?

@@PedroVier-ew9uy Yes I do. It’s not bad at all. I’ve grown used to it. The biggest thing is infection risk and making sure you always have supplies with you.

@@suzy7773 Sorry to ask, how old are you? and supplies, you mean the catheter itself?

@@suzy7773 Will you have to self catheterize from now on or will your ability to pee return did your urologist say?

@@Taylor-ix3om Yeah I have to self cath for the rest of my life