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Anyone have radiation treated bladder removed?
Was originally going to opt for tmt (radiate the bladder and try to keep it).
However, I ended up first in the hospital with cancer obstructing the tubes from my kidneys
They had to do nephrostomy (run tubes through my back directly into my kidneys with bags to empty.
Once that was done they irradiated my bladder anyway
I have since learned that the blockage nullifies the "tmt" approach. Apparently neither my oncologist nor radiologist understood this
So now I have a non working bladder and the surgeons in the area do'nt want to remove it
And I have some cancer back in the bladder
It seems to me that leaving the non working bladder is just adding risk? It also is easy to get bladder infections but the urologist says they can't check it.
Has anyone had their bladder removed after it had undergone radiation therapy. Ocr know of surgeons who will do this?
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Get second, third and fourth opinions. Preferably at a NCI hospital.
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2 ReactionsYour case is interesting. I think it's strange too that they don't want to remove the bladder. Did they explain why? Was it the complexity of the surgery itself?
I hope you can get a second opinion soon to weigh the risks/ rewards.
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2 Reactionsamu45sin here. Try and see another urologist at another facility. For a 2nd opinion and for what they recommend.
We don't have to stick with a doctor. You owe yourself to do this.
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2 ReactionsMy metro area only has one urologist who does bladder surgery and they are impossible to get in with
I did engage with U.W. which in the NW is a research/training facility with a good reputation. They assigned me a urologist surgeon and he would not do it.
I suspect in the NW they are so overloaded and so my more complex case is not a priority?
That is what I am trying to determine Healthcare in the NW is in severe crisis as our states moved to basically universal access without the resources (DRs) to do it smoothly and you can die of something. Healable due to not getting in timely or at all
I am trying to figure out if that is the primary factor and if elsewhere it may be different.
I know top institutions do this with some success.
I am so exhausted. If I die it will likely be to the system issues in my region I am hoping someone here can help steer me.
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1 ReactionIt's known to be more complicated if your bladder has been irradiated. It could be a 6 to 8 hour surgery I guess. But I'm young enough and in overall otherwise good enough shape I think I'll be okay for that (I'm 67).
I am puzzled too, as there is some risk I guess leaving a small piece of it or something. But I don't understand what my choice is. I have already had problems with neuropathy with chemo and so those options are narrowing so for me it seems there's more risk and not doing it
It took me six oncologists surgeons to get three appointment options. Two in JAX, FL and one in Germany. The Baptist MD Anderson surgery date would have been about 6 weeks after TURBT 2. The Mayo surgery date was a week after TURBT 2. I got lucky as the urologist surgeon had a colleague who had a cancellation and I was at the top of the list because of risk.
Other oncologists would not see me timely. I would have seen eight potentially.
So you need to hit up all the hospitals.
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3 ReactionsThanks. So it sounds like indeed congestion (more work than Drs) is a problem nation wide.
So we're you muscle invasive and has been irradiated?
So you get the turbt done to clear what you can and then try to get someone to agree to remove while it is relatively clean?
This is so confusing I think as many surgeons like to stay with the best risk but it is all a risk by nature and one has to advocate hard if you want to push into more complicated scenarios.
In my case I had very aggressive MI but something in my change of lifestyle slowed the growth. (All whole foods, low glycemic, no artificial additives or sugars, etc).
But I have trouble getting it recognized that my body is fighting and thus a little more effort ( such as removing the bladder without 100% remission might have decent results
MIBC almost always requires RC unless TMT is indicated. Or if is so advanced you skip straight to EVP.
What a mess. I can't imagine the degree of stress this has put on you and I'm so sorry. I would definitely get appointments with every urologist that you can and, hopefully, get other opinions. Please update us. My thoughts are with you.
I am so sorry to hear you’re having such difficulty finding a surgeon that can help. Have you reached out to BCAN? Perhaps they can provide some direction or assistance to you with their team of specialists. I wish I could help!!