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Frequent recurrence a bad sign?

12 years 4 weeks ago #2048 by Mike
Hi,

from what little I understand of bladders :-[ - I believe you can regularly TUR without major problems, as long as you can do the meat welding and they heal properly before the next R.

The inner surface of the bladder is fairly resiliant and quite thick - steadily renewing itself. :) At times. when on screen, I have noticed small areas of the bladder surface and asked if that is cancerous and the consultant has not just said but shown that these 'bits' are just dead skin which he mechanically pulls away, as the bladder constantly regenerates. :) Do bear in mind that it functions in a pretty hostile environment with a steady flow, giving endless expansion and contraction, as it fills and voids with Uric Acid! 8-)

The more interesting point about the bladder is how little they know about the brain's control of the bladder! ::) Much of incontinnence is a breakdown of the brain's control over the sphincture at the neck of the bladder. I understand they have little understanding of the nerve patern for bladder messages.  :-/

There is no clear reason why we do not wander around dribbling urine like rodents as the muscles of our bladder SEEM to be automatic, yet are easily disrupted  :o - my wife had an idiot doing a laparoscopy puncture and badly repair her bladder without telling her and covering himself by making no entry on her notes! >:( This has led to a hugely reduced capacity and also bladder urgency  :-[ - it was only by noticing scar tissue during a flexi that we ever discovered the damage. :( Sadly it seems progressive and there is no proof to come back at the incompetent fool who did the damage in the first place! :'(

Bladders all too frequently seem to develope a mind of their own! >:( :-/ However regular minor TURs seem not to be too much of a problem.

I'm kind of hoping for at least 20 years of TURs ;) - in fact my medical file at the Urology Department is about 3" thick and I've promised to buy a case of Champagne if they can keep it going long enough to need its own filing cabinet draw  ;D

Regards,
Greg L-W.

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12 years 4 weeks ago #2041 by star
well I can say since feb 06 I have had 4 turbt surgeries and on round 3 of BCG.
I was told it can be common and treated aggressively in my case. I do not know how many times your bladder can deal with being scraped etc.. but it goes about every 3 months then more tumors then 6wks of bcg or 3 wks then a scope then in my case so far another surgery then 2wks recovery then yet another round of bcg. I gather it can be common like most anything to have reoccurance but I am still new to this par say since my 1 year will be feb 10th compared to some of the wonderful people whom have been doing this and dealing with this for so much longer.
TAKE CARE ,HEALTHY BLESSING. Star ::)

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12 years 4 weeks ago #2022 by Mike

Hi Elizabeth,

Wendy & Rosemary are quite right with their comments but I would go even further.

There is no such thjing as a good Cancer they are all the Big C but never forget the 'C' only stands for Challenge. Of having a Challenge low grade Bladder Cancer must NOT be allowed to dominate your life - you are young, live in a city surrounded by the best medical facilities available to man and you are attractive, bright and energetic.

I won't pretend that repeats are anything other than a bad thing, but I've yet to find anyone who thinks Cancer is anything other than a bad thing!

Keep ALL forms of treatment to the minimum for 3 good reasons
1. The more they do the more risk of damage or error
2. The more they do the more your life gets disrupted
3. The more they do the less options you have available in the future IF YOU NEED THEM

I started out with Kidney Cancer about 8 years ago then a nephrectomy 5th. September 2001, I have now had BC for 5 years - I've had so many people peer up my urethra that I'm starting to feel like a 'what the butler saw' machine in a penny arcade!

NEVER EVER miss the checkups, make sure they never stop checking you, never miss an appointment, never ignore symptoms and I would suggest never miss a period unless its planned!! This just becomes a part of life!

It is likely that you may have to have more TURBTs - have them if they are minor enough I have them done without anasthetic and I arrive an hour before theatre time and leave an hour after the op. I always say these ops. are as easy as shelling pees - it is only afterwards it is like peeing shells for a day or two!

Sometimes they will have to do more slash and burn (where they quarterise the wound shut - meat welding!!) also for guys if the new crop of mushrooms is growing on or over the back of the prostate - they do a TURP where they use a Rigid Scope. This requires anasthetic and I opt for an epidural where I can watch the TV screen whilst they operate.

I am fortunate I am at least being treated by specialist urologists and thus obviously oncology is always at the forefront of their minds. Most of the crew/staff on the urology ward have been there for several years. The day units are just as specialist - the only down side is for them! Can you imagine spending all day doing a flexi every 7 minutes and a prostate check every second patient!! Wow 'so how was your day at work darling' - 'do anything interesting?'

OK so BC is a bore but you may well find after a few instances you have several years clear at every check up - it may go for good or it may come back - the longer without the better and the longer it is controlled the more sophisticated the treatments but from what I can see available I would tend to two pieces of advice:
1. Seek a second opinion
2. Try to avoid over treating
I would (as I have) opt for TURs and at most mytomicinC - see how well that controls it for as long as you can.

A girlfriend of mine (40 years ex!) in Germany has BC shortly after mine started and she has had full years clear then a minor outbreak but she NEVER misses a check up. She doesn't smoke but BC diagnosed too late took her Father out!

Is her BC genetic perhaps or were we both exposed to some chemical all t6hose years ago? Who knows but I do feel far more should be done to research every coincidence!

Anyway - time for bed its 03.00hrs. here!

I hope all went well with your latest check but don't let worry ruin your life, which has every probability of being unaffected materially by BC merely a constant awareness that ensures you will never leave diagnosis too late!

Worry merely diminishes your ability to cope with challenges and gives you ulcers!

Good luck and learn one of life's great lessons:
'Life is too short for cheap wine' 8-)

Regards,
Greg L-W.

PS - Don't tell your Mom that your bladder has become a topic of trans atlantic conversation - she would be horrified!



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12 years 1 month ago #1951 by elizabeth
Wow, thank you very much for all of your fast responses! I have not done any rounds of the BCG yet. My urologist was "on the fence" about doing the BCG after my second TURBT in June '06 and I definitely didn't want to do it so we agreed to wait to see how my 3 mo. cysto went. When the tumor was back at the 3 mo. (Oct. '06), he said that I definitely needed to do it now. One of the things that I find frustrating, and one reason for the second opinion, is that I have repeatedly asked him why I can't just keep getting the repeat TURBTs if/when the tumors come back. Honestly, for me, the TURBTs have been very easy. Each time, I've been up and back to running (!) two days after the procedure. The BCG, on the other hand, seems much more like a mixed bag in terms of side effects and efficacy. However, my urologist just tells me that we "can't keep doing the surgery." I just figured maybe at some point there would be a danger of scarring or something. But again, I haven't really received a straight answer on that.

As far as other tests, I haven't had any other tests other than some regular Xrays of my kidneys that my urologist did during the June '06 TURBT surgery.

I'm in Boston and I go tomorrow to see an oncologist at Mass General so I'll let you all know how that goes and whether he suggests anything different or additional. Again, thank you so much for your helpful responses!

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12 years 1 month ago #1944 by wendy
Hi Elizabeth,

Rosemary is right to quote that blurb from the Emedicine article, there is similar info on WebCafe. Ta, G1 tumors, recurrent or not, are not usually treated with BCG because it has been shown to be less effective on low grade, low risk tumors, while it is very effective on high grade, high risk tumors.

The recurs you had could very well be from something that can happen during TURs, called re-seeding. The procedure can cause recurs. Sometimes a doctor will miss something as well. It happens.

Are you seeing an experienced uro who knows about bladder cancer? Many doctors don't. From what I learned recently, the less experienced the doctor is with bladder cancer, the more they tend to 'over treat'. This can be as serious an issue as undertreatment when it's about bladder cancer.

I think BCG is over treatment for you.

The latest guidelines for your kind of tumor(s) recommend a single instillation of a chemo drug, put into the bladder right after the removal. It does not get in the blood stream that way.

That said, my sister (she's the one with bladder cancer) has what you have and never had a drug instilled, had a couple recurs the first year but has now been totally clear for 7 yrs! She goes to Sloan in NYC. I'm grateful they never gave her a treatment with any drug because there is always a possibility of long term side effects. While the actual benefit wears off in two years.

Doctors are under pressure to reduce recurrences because of the high cost of treating bladder cancer. So even this small benefit found with intravesical chemo for low grade ta tumors is worth it to them, but is it worth it to you?

You may not need any further treatment at all aside from removal. I would say to get another opinion before committing to any BCG! Might be overkill...and BCG can be quite difficult for women sometimes (though certainly not always).

Let us know where you're located and perhaps you can get the name of an expert in your neighborhood.

Take care,
Wendy

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12 years 1 month ago #1943 by Rosemary
This is exactly what I read ...

BCG is recommended for CIS, T1 tumors, and high-risk Ta tumors (large, high-grade, recurrent, or multifocal tumors). This therapy is less effective in reducing the 5-year recurrence rate for low-grade and low-stage TCC (see Table


This is the link, and it is pretty comprehensive and informative.. at WEBMD.

http://www.emedicine.com/med/topic2344.htm

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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