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Okay, you asked.

If it were me, I think I would go the cystectomy route.  It just sounds like it's not going to get better.

I hope that Tim B drops by soon.   He put up with recurrance and treatments for about 14 years, I think, and finally elected for cystectomy.  He seems to be at peace with his decision.  And, he is much younger than you are.

Anyway, that is just my vote, but I might change my mind with some persuasive statistics.

Good luck, buddy.  I hope we hear from some others on this.

Your friend,
Rosemary

Hi Mike - I have TA G3 and have had two TURBTs and one round (6 weeks) BCG...I guess I am the odd one because since being diagnosed with Bladder cancer last November I have become less and less "attached" to my bladder so to speak. If the option were given to me I would opt for cystectomy especially if months and months or years and years have gone by and there is no change except for the worse. My feeling is, if the cancer is in the bladder and they take out my bladder, then they take out the cancer. But this as I read here in the group is not the norm.

I think that you just need to do what you are personally comfortable with after talking to your medical resources and possibly reading and chatting here online with others in your position. I hope the best for you in whatever you decide to do and keep us all posted .... hang in there...

Take Care, Sandra

Hi Mike

Your story leaves me with so many questions I'm thinking you should get more opinions on this all! I have never heard of heavy chemo for low grade blc, nor of concurrent grade 1 cancer with positive lymph nodes, but I've read that it's possible to have the latter. I'm not surprised the PET missed cancer in the bladder because of the fact that residual urine makes the scan difficult to interpret. I'd be happy about the lymph node showing to be clean in a PET, though, as the test is pretty accurate for that job.

According the guidelines of the bladder sparing approach of radiation+chemo, the radiation is the treatment that is supposedly the main treatment, while chemo is used to hopefully enhance the radiation, as it sometimes does. I wish the doctor had though to try that combination before having given that heavy systemic chemo as that seems aggressive, as does two courses of BCG for low grade cancer...ok, it's about a large tumor and when that is the case all the treatments used for high grade, non-invasive blc are given for a high risk, low grade cancer (including cystectomy).

There are newer techniques using radiation seed implants, that do less damage to surrounding areas and give the same or better results. This is mostly in Europe, though. But given your doctors are trying the latest and greatest combined-modality treatments with you, perhaps they are up to speed on the seed implant issue as well.

I wondered if you have gotten more opinions? If not, please consider this before starting anything.

It does sound to me as if it would exhausting to continue with more treatments, and if it were about me, I might just get a cystectomy as Rosemary and Sandra were also leaning. But I also have noticed that women seem to be more amenable to the whole idea of radical surgery because sexual function is not as heavily influenced by cystectomy for women as for men. And I do see your point about this being a low grade cancer.

Maybe you should ask for another opinion on the pathology. In such a serious case, it's a normal thing to do. Read this article:
http://blcwebcafe.org/padova1.asp#path "Review pathology: why it is critical."

Ideally, the treatments shouldn't be worse than the disease.
You sound very courageous! I wish you all the best with the treatments.
Wendy