Dilemma:To perform cystectomy or not? That the ?

17 years 1 month ago #1490 by wendy

I'm sorry to hear about the predicament. I don't have any stats and wouldn't know how to search for those because I'm almost positive it would be unethical to conduct a study using people getting sub-standard care.

The trials that have been done look at the number of post-op specimens that have responded to chemo compared to those who have not had any chemo, and found that the people whose bladders show no cancer upon cystectomy/pathology have a better chance of long term survival than those whose bladders still show signs of cancer after cystectomy.

Partial cystectomies are a controversial treatment. Recurrences are so common that most experts question it's usefulness. Once a epithelium of the urinary tract becomes cancerous, recurrence can occur in any part, bladder, ureter, kidney or urethra. The risks remain.

The best bet at long term, recurrence free survival after a dx of muscle invasive bladder cancer is bladder removal, the stats say the sooner the better. Newer stats are implying that pre-op chemo ups those odds.

There is also the bladder sparing option of using the combination of tumor resection followed by chemo and radiation. But the recurrence risk remains, is often superficial and then folks get treatments for that.

Your father's diagnosis of lymph node mets is a scary one, TCC is an aggressive tumor once it gets out of the bladder. It's great that chemo has put that into remission, and it could well happen that your father remains cancer free forever, but it's a gamble, as is everything connected to cancer treatments...I'm sorry and I wish it was different but that's the deal.

The choice is his. Some people are very anti-surgery, the thought of losing a bladder (or any part of themselves) is too horrifying. We all have our limits on what we're willing to go through.

But your father should know that in case of spread, many or most experts would probably no longer be willing to remove the bladder, but will only give chemo and/or radiation. That's because they feel it's not worth the cost and morbidity to the patient because cure is no longer possible, but only controlling it with chemo for as long as that works.

I wish I had more info for you.

All the best,

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17 years 1 month ago #1482 by anneb
Thank you Mike and Tim for reaching out and sharing with me your personal experiences. I will pass this onto Dad in hopes that he will make the best decision possible for himself.

I wish you strengh, courage and hope,


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17 years 2 months ago #1471 by timb
I'm up for a cystetectomy 18 oct and am 42. It's pretty scary but I also wanted to go with the option offering me the best chance of still being here in 20 years. A lot of the evidence both from people on this site and elsewhere suggests that, providing things go well, there's a great quaility of life post-cystectomy. I too feel in good shape right now and can totally relate to the idea of feeling good and electing to go through incredibly radical surgery. It just seems wrong! That has been one of the hardest parts of the decision for me. And the feeling that its really happening to someone else is still with me! I would add that my father died of BC and felt great until practically his last week. As noted above there's a a significant survival advantage to earlier cystectomies. I did feel a sense of relief myself just for taking a proactive route and not being in the limbo I've been in for so long.

Best of luck. Its a really hard decision to make as you say.

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17 years 2 months ago #1469 by mikmckna

I appreciate your father-in-laws concerns. Cysectomy is a no turninig back decision. Let me tell you why I made the decision I did and perhaps you can pass this on to him. While I did read and see all kinds of stats and reports the one thing that came through was that not one of those people in the studies was ME. Each patient has circumstances just a bit different than the study group so how could I possibly make a choice from those reports.

My local Uro took an aggressive approach. I had 5 tumors staged T1-G3 with CIS. He talked with me about several different options but leaned hard to cysectomy. My 2nd opinion was through John Hopkins in Baltimore (known for BC specilists). This Dr glanced at my path report and told me what they do. No discussion, no input just talkinig at me (see complete story in the "Storyboard").

When I returned to my local Uro we chatted somoe more and it boiled down to a fwe simple facts. CIS is aggresive and not predictable. T1 while classified as "Superficial" can turn to T2 at any moment. When I was re-staged, things looked good and I could have very easily gone the BCG route but my Dr looked me in the eye and said when it comes to Bladder Cancer, we deal in 5 year survival rates. Mike, you're 45 years old and I would rather talk with you about 25 or 30 year survivability. There is no guarantee with anythhing but cysectomy early rather than late showes slightly better results.

Now I am a gambler. Love to play Craps but I was lookinig at reports that showed survival rates from 2% to 10% higher with early cysectomy. That's 90% - 98% "No reason to jump into it". I was not willing to gamble even a 2% chance when it came to life.

I am 5 weeks post-op RC with a Neo-Bladder. It has not been a piece of cake all the way, but I would not have changed a thing about my choice. While I do have to return for periodic checks I am not living with the same concerns that I would had I opted for BCG. I believe in my Uro and I believe in myself.

Surgery is a scary thing but don't let the short term fear play a role in a long term decision.

Believe in yourself,
T1-G3, CIS
RC w/ Neobladder 8/22/06

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17 years 2 months ago #1468 by anneb
I appreciate any input on the subject. I am a nurse and I'm trying to help my father-in-law decide on whether or not he should take his doctor's advice and have a cystectomy. In March 2006 he was found to have carcinoma in situ in the junction between the ureter and the bladder. He also had 2 small polyps. The pathology showed high grade transitional cell carcinoma. Make a long story short -- A partial cystectomy was performed with local lymph nodes (4) removed. All lymph nodes came back positive for micromets. At NYU docs recommended chemo and radiation. It didn't sit well with him. So he went to Cornell were recommened agressive chemo followed by cystectomy. He did beautifully wth chemo. In fact hot spot that showed on initial PET/CT scan is gone. Never lost his hair and actually gained weight. He said he never felt better.

Problem is now he feels so good he is very apprehensive about surgery. Says he doesn't want to do it. And on some level feels he doesn't need it. Or perhaps he is just scared of life after cystectomy Can't say that I blame him. It is a very difficult decision. He believes that his cancer will not recur and therefore why should he suffer through surgery?

Does anyone have any wisdom that I can impart to him. Any stats on survival after cystectomy with high grade invasive metastic transitional cell carcinoma.

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