Cystectomy Needed for Recurrences of TA, CIS Non-Invasive BLC?

david

I was faced with a very similar situation to yours. I had 12 years or so of recurrent low grade disaese which suddenely jumped to G3 with CIS which persisted despite several rounds of BCG. I think I went with BCG for about 1.5 years. In that time I had a small G2 recurrence but when a small area of CIS showed up again I went straight for the cystectomy. I reasoned at the time and after exhaustive research that if I was going to opt for such a tough op then I may as well have it when the chances of it curing me are reasonably high. Of course it's a gamble with incredibly high stakes. Julie is on the money when she speaks of the danger of CIS. It's always high grade and always dangerous. Particularly when it's BCG refractory (resistant). I too must disclose a bias as I just learned of the death of someone I was "buddying" through his cystectomy and frankly it's knocked me sideways. He had his a bit too late and had spread to his kidneys. Im lighting a candle for his funeral today.

I suppose to balance it out there are people who have continued down the conservative path and it's worked out for them but you have to weigh into the argument the fact that modern diversion techniques are pretty remarkable in the hands of a good surgeon. Im extremely pleased with my neo bladder and during the day im totally normal now, work my a$$ off, never leak and have days where I don't even think about it. Nights are slightly less successful but way way manageable. I have zero regrets about my decision and I'd say my life has improved a lot since the cystectomy. the follow-up frequency is far less than when I was having the BCG and peek and pokes all the time and I really feel the cancer has slipped into a more background position in my life. It's still there but not as much. Im going on holiday on Saturday and, whilst I feel I must be prepared, I have very few worries about being on a plane etc.

I think also to bear in mind is that people, me included, tend to err on the side that supports the road they themselves have taken. This decision is about you. You are ultimately in a very lonely position. My doc never once said to me "you must do this" but, looking back, he was definitely nudging me towards the surgery. Look at some stats and do the research to arrive at the decision that in your guts you feel is the right one. It'll never be totally free of regrets but it may just be one you can live comfortably with. And don't be taking too long!

I remember clearly being in a similar place to where you are now and finding the prospect of losing my bladder unimagineable. it's a really really tough call but if I'd known how well it was going to turn out for me I probably would have had it sooner.

all the best

tim

David, I have been reading people stories since 2001 and from what I read your Dr. is being realisitic with you. CIS is always high grade and has a higher risk of becoming invasive. Why delay getting a second opinion set one up now. Doctors are interested in increasing the odds in favor of your long term survival which is why they recommend a cystectomy sooner rather than later.

Of course I am speaking from hindsight and wishing my husband had been given your choice before his CIS metastasized so I do have a bias.

Rosemary,

I knew I could count on you for some well-researched input. There's more data in that study than I'm able to comprehend but I absolutely did identify with a couple of the case histories. I was hoping to see a bit more "watchful waiting" over a period of years, but the rapid recurrence and presence of CIS seems to be a major concern.

It appears that, if either Mitomycin or reduced dosage BCG (not likely to happen) fail to halt recurrence,that cystecomy is going to be indicated. What has baffled me -- and my doctor -- is that the persistent inflammation has effectively blocked our attempts to halt recurrences. I will definitely bring up the matter of trying Mitomyicin and if he's unwilling, will immediately seek a 2nd opinion at MD Anderson. Overall, though, it does not look too promising for me to keep my bladder at this rate.

The slide show did indicate some benefits of mega-doses of vitamins such as Oncovite. I think I'll check into that.

Again, thank you so much for taking the time to do the research and share it with me. Just hearing from someone who has a lot of experience is invaluable. This forum is a great encouragement.

I would be lying if I said that I'm not worried... :-\

Your friend,
David

Dave,

I found this site called, "Management of Difficult Cases of Non-Muscle Invasive Bladder Cancer". From what I can tell, Dr. Lamm is on board on this one. There are different scenarios posed to Doctors who reply as to how they would treat that scenario. There is a case posed here that is similar to yours. You might want to take a look at this....

Buds,
Rosemary

www.bcgoncology.com/physicians/AUApanel2005.pdf

David,

I get the idea that you are confused about the issue of the tumors recurring but NOT progressing.

The idea that I am getting from your Doctor is that the BCG has failed. It happens sometimes. I'm guessing that he doesn't like the idea of continuing with a treatment that isn't working.

If I were you, I would broach the subject of the Mitomycin with your Doctor and see what his response will be. If he pooh-poohs the idea, then I would get on the horn immediately and make an appointment for a second opinion at the best Medical Hospital that you can get to. I think you might want to do that anyway.

I'm sorry that you are facing the issues that you were hoping that you wouldn't have to face.

Good luck with your decision.

Your friend,
Rosemary

Even though I have been posting to this forum for over eight months I still consider myself a "newbie" when it comes to making tough decisions regarding bladder cancer treatment.

I was diagnosed with TA papillary and CIS back in March of 2007 and had a TURB to remove the cancer, followed by a round of 6 BCG treatments. I experienced a very violent reaction to the BCG and suffered for over 4 months with extreme inflammation. In spite of the BCG and reaction, the papillary and CIS came back and on Nov 30 I had another TURB to remove the cancer, with a Mitomycin C installation immediately following surgery. Again I experienced some pretty severe inflammation. I tested "positive" on a FISH urine test last month, and I just had a cysto yesterday, March 4 and the doc thought he saw some papillary and perhaps other, anyway he's scheduled another TURBT for 3/28. His comment was that, if there's been another recurrence that he wanted to have a "heart to heart talk regarding bladder removal." When I argued that all my cancer thus far has been superficial and non-invasive, he responded that the positive FISH test plus BCG failure and multiple recurrences indicate a probability of progression and upstaging which could, in his words, present a "small window of opportunity" for cystectomy. I told him that I had read (on this forum) that only about 5% of superficial non-invasive bladder cancer progresses to a higher stage but he was not swayed.

If the biopsy reveals new cancer (which we are both pretty sure it will), he's going to recommend cystectomy and I will most definitely seek a second opinion, most likely at M.D. Anderson Cancer center here in Houston where I had a squamous cell carcinoma removed from under my tongue back in 1997.

Am I just being stubborn, or does my reluctance make sense? I realize that many of you on this forum willingly chose cystectomy, but it is my impression that, for the most part, the presence of muscle-invasive high grade cancer left little choice and I'm not convinced that is where I am at this point.

I would like as much advice as you are willing to provide and I greatly appreciate all you do for us fellow BLC survivors.

David Doyle