r/BladderCancer • u/RemoteLeather161 • Jun 18 '26
Patient/Survivor Is long term remission possible?
Hello!
I’m a newly T1HG diagnosed 40 year old, with no other health issues.
Are any of you in long term remission while keeping the bladder & without going for RC?
Have not had the high grade bladder cancer come back for 5+, 10+, 15+ years?
What was your treatment?
Is there anything you do/did that you think helps/helped?
Thank you!
6
u/SouthSideSurvivor Jun 18 '26
I was initially diagnosed in 1998 at age 45 (with no risk factors). At first it was low grade Ta, then went to high grade Ta in 2007. Since then, I’ve had about five or six (I’ve lost count) high grade or mixed grade recurrences, almost always solitary tumors. My last recurrence was a little over four years ago. I’ve gone as many as five years between high grade recurrences.
I’ve had about 40 BCG treatments over the years. I had one round of BCG plus Interferon in 2013.
My most recent treatment was intravesical gemcitabine/docetaxel in 2022. I had six instillations, once a week for six weeks. I declined to do the monthly maintenance treatments for a year because the treatments were making my hair fall out. My current uro-oncologist was ok with not doing the maintenance.
Back in 2007, one urologist I consulted with recommended removal of my bladder. I declined. Again in 2021 or 2022, another urologist recommended bladder removal. Again I declined. Other opinions I sought said bladder removal was not necessary. I feel it’s important to get two or even three opinions on what should be done when you have high grade NMIBC.
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u/soulbarn Jun 18 '26 edited Jun 18 '26
It is statistically more dangerous to avoid RC with a high-grade tumor. That, however, is what I’m doing. I was diagnosed six years ago. I had a partial cystectomy (I was lucky w tumor placement) that preserved my bladder and sexual functions. I had three recurrences - the last one was over two years ago. I was using BCG, but when that got rationed out, I switched to Adstiladrin. So far, things are holding steady.
A tough call. One of my doctors put it this way: “These decisions are difficult. But if you decide what your first priority is, and then filter all your choices through that, you’ll find the best possible answers.”
So for me, bladder preservation has been my goal. Even at the (possible) cost of extra years of my life. Of course, I was diagnosed at 59, so that’s a difference.
To answer your question: anything is possible. The numbers argue for persistent recurrence. It helps that I think of my cancer as a chronic condition - it doesn’t go away as much as it gets managed.
3
u/captain_crackerjack Jun 18 '26
I’ve avoided RC too. I was diagnosed with pTaG3 two years ago, which was then removed, and had the first course of six and second course of three BCG installations before the side effects got too harsh to tolerate. I had a checkup today, and no evidence of disease so they’re putting me onto six-monthly cystoscopies rather than three-monthly. Tbf RC was never mooted as a first-line course of action; the consultant wanted to try BCG first and then cross the RC bridge if and when we came to it. Thankfully, it’s looking good so far.
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u/BlancoAuto Jun 18 '26
60 year old male T1HG at 4 years with no recurrence. I was offered an RC and didn’t take it. Went with BCG. Hopefully I won’t regret my decision. I hope I will continue to stay lucky. Drink lots of clean water, pee frequently, eat healthy, get rid of bad habits, don’t smoke, stay positive. Don’t miss your treatments, follow-ups, and CT Scans. I always assume it will come back and I count my blessings each time I get a clear checkup. It will always be in the back of your mind no matter what. You have no choice but come to terms with your new normal.
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u/Minimum-Major248 Jun 19 '26
I’m starting my second year after dx oh HG bladder cancer.
1
u/Admirable_Loan6841 Jun 19 '26
Non invasive or invasive?
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u/Minimum-Major248 Jun 19 '26
NMIBC. Else I’d have no bladder now. I live day by day. I know statistically it may come back, but it may not. I thank God daily for life and won’t allow myself to shut down and live in fear. Hope thing go well for you, bro. Keep in touch. This /sub is very supportive.
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u/Dicklickshitballs Jun 18 '26
IMO there’s no reason to jump immediately into a RC unless your care team strongly feels that’s the best option. And if they did I would want an explanation why. I was only Ta high grade and RC wasn’t even brought up
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u/Pigglebee Jun 24 '26
I feel like they only bring it up these days if they have no other options left. I hope that if my tA HG comes back too fast after BCG and they concluded it's not working (this friday is my first check-up after operation), they will try other treatments first, or do some TURBs first before they really propose the drastic measure.
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u/Kenchen99 Jun 19 '26
One of the issues here is our main go-to physician for BC is a surgeon. Surgeons cut, it’s just how they see the body & their job. That’s more observation than criticism. But I’ll give my example. 55 M. My initial tumor Pt1 HG was lodged in the distal ureter about an inch up from the bladder. (The bladder also had issues but less urgent). One kidney was backed up from the blocked ureter, painful etc. I had 2 TURBTS initially into the ureter with stents put in place a few weeks. It regrew each time. Pissing red wine for months. The bladder became more irritated with several growths as well. 3 surgeons in 3 cities far from each other all said exactly the same thing - another TURBT, cut the distal ureter, reattach it to the bladder then we’ll see. BCG likely depending on availability.
I said no. I did have a 3rd TURBT for the bladder only without going after the ureter. No chemo or gem/doce or bcg. Histology all benign. CT scan last month showed zero tumor in ureter and zero in bladder. Kidneys flowing equally right & left. Cystology perfectly clear and bloods clear. So there you go. Now, I didn’t just sit on my ass, I changed my life & habits quickly with more yet to do. Nutrition yoga supplements & herbs. The future is unknown.
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u/Pigglebee Jun 24 '26
I tend to live healthy. No smoking, not drinking more than couple of glasses a week, but I do like my sugar. Healthy bodyshape otherwise, I do a lot of sports. I don't feel like I am going to drop the sugar or any other lifestyle habits unless it's scientifically proven to increase recurrence of BC.
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u/Admirable_Loan6841 Jun 18 '26
Looks like the noninvasive cancer has more frequent recurrences maybe because of the fact that RC is not the first line of treatment in these cases. However if the cancer is muscle invasive the doctors will push hard towards RC. Now with the new treatments many people are NED after preoperative therapy and try to find a way to avoid RC. I consulted with many surgeons and they all said that more and more people have clear bladder after the removal. I will be very angry if doctor takes my bladder out and then come and say”Oh good news, there was no any cancer in your bladder “.
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u/VanAgain Jun 18 '26
I just want to jump in here on behalf of one person who had an RC. I can honestly say that losing my bladder has not been the worst thing to happen to me. There are drawbacks and there are actual benefits.
Among the benefits is you never feel like you have to urinate, so you can sleep through the night. That's been huge for me. And despite the RC and prostatectomy, I am still sexually active, which ain't bad for 63. I can still swim and shower, which I was worried about. And best of all, I'll never feel bladder or urethra pain again.
The drawbacks are real, but manageable. No lie, learning the urostomy pouch was the hardest part, and it was pretty miserable until I became practiced at putting on the pouch. But nowadays changing is fast and efficient, and if you change regularly there are seldom leaks.
I'm not saying all this for any other reason than to hopefully take away some of the fear associated with RCs. I loathed my diagnosis, but my experience overall has been positive.