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CIS: What are the facts and opinions?

12 years 2 days ago #2880 by fightcancer
My experience comes from my dad's battle with Bladder cancer and I echo the others above about reading up about it, getting second opinions, etc....

I don't know the specifics of the grade, but my dad had CIS and went through two rounds of BCG. When small tumors came back the third time in his bladder, it was too late to consider bladder removal because it had spread to the liver and pelvic bones. You can read more details under my post in the Metastatic section (there is a possiblity his spread is attributable to his other primary site of breast, but it appears to be secondary bladder). The medical (and legal) opinions I have heard is that the standard of care is to treat CIS with one round of BCG and if it recurs, then take out the bladder. Given the choice now, I am positive that my father would take the surgery and neo-bladder v. the last 9 months of chemo and radiation with little to no chance of the liver lesions going away. That is blunt and direct, but you have to know that the spread is higher risk with CIS.

My father is an othewise healthy 60 year old, so he is not in his 30s like you, so I can imagine that the surgery would be a tough decision. I am your age Vin and frankly seeing what my father has gone through, I know that I personally would opt for surgery if CIS continued to recur. But I am no expert on grades as some others and don't know all the statistics, just my own personal experience.

Good luck and my thoughts are with you.

Toms Son

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12 years 1 week ago #2776 by mikmckna
Vin,
I am 3 months post op so still young but here's my input.

What are the most difficult aspects of the cystectomy?
The first few weeks post-op. 10 days in the hospital was too long for me but I hurled my first solid meal and had to start over with liquid. As you recoop your digestive system wakes slowly. I spent a few weeks with mostly liquid bowel movements. That is painful. Use wipes to help.

How long before you return to work?
Mine was 10 weeks, I had a couple of Urinary Tract Infections (UTI) that prolonged things. It's common and I've had 3 more since but now they just knock me down for 1-2 days.

What do you do for work?
Real Estate Broker so mostly office work.

Can you run, ride a bike, lift weights, or swim?
Yes to all. I was a bit nervous about the weights but found no problem. I'm not power lifting but do 3 sets of 15.

Is walking around comfortably normal?
Perfectly normal... Early on my wife had to remind me to stand up straight since I found myself slumping.

Do protective garments show through clothing?
I wear a very thin female pad during day and perhaps twice a week I am glad I did as I get that small "leak". Nothing shows so have no fear. In reality it would only cause a small wet spot in my underwear but I feel safer that way. Evenings I wear a Depends underwear. I am having issues with getting my bladder empty when I void (pee). For the past few weeks I have been using a catheder before bed and once during the night. Don't let the thought of inserting a small plastic tube in your penis to empty yourself freak you out. Originally I did but really it does get to be very routine. I am headed to my Uro next week to take a look inside to see if there is some physical reason I can not empty. He is pretty certain something changed while I was stretching my bladder since I had no such issue until 4 or so weeks ago.

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

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12 years 1 week ago #2757 by wendy
Hi Bob,
I'm not sure what you filled in but 50% chance of recur and under 1% chance of progression sounds about right for a TaG2...
w

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12 years 1 week ago #2756 by Bob_P
Trying to figure out the EORTC table. If it says 0.46 for recurrence after 5 years that means almost a 50% chance?
And if it says .008 chance of progression, that means less than 1 % that it will progress to metastatic?
Thanks.
Bob P.

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12 years 2 weeks ago #2622 by timb
I'm with Dan and the other folks here on this. Apart from the weightlifting ;), Vin, you're asking all the questions we all probably ask when making this very important decision; can i still ride a bike, swim, travel etc. The answer is probably yes to all of them. I'm now 6 weeks out of surgery and doing most things I did before quite satisfactorily if a little slower. But I KNOW it's going to improve. My neo works fine too and, though I'm still stretching it to full capacity (you do it slowly over a period of months by leaving longer between each pee on a week by week basis), peeing feels a lot like it did before. You'd be amazed. Sex I haven't got round to yet but a few things tell me that the nerve sparing has worked at least partially and, like Dan, I reckon medication (levitra, cialis and viagra) will sort the rest.

Even at this early stage, I'm very positive about my surgery outcome and, athough the worries cannot completely vanish (you need to keep an eye on upper tracts; ureters and kidneys) after this surgery, I'm so very glad to be out of the BCG/cystoscopy labyrinth. In a years time, all being well, I'll be on to yearly checks. Now that's something worth fighting for Vin!

I live in UK. In the last 3 weeks I've been to two Cathedrals, Christmas shopping, Stonehenge, two dinners at friends, a visit to the movies with my girlfriend (she visited the bathroom one more time than me!), cheddar gorge (where the cheese comes from!). I'm off down to Cornwall for a week to stay in a cottage next week. Can't wait. My Girlfriend is Australian and I fully expect to go and stay with her for 3 or so months next year. I feel fit enough to do the odd days work even now. but i'm going to chill out til the new year.

Downsides are wetness at night. Actually last night I was dry nearly all night. And the odd squirt if I let my bladder get too full in the day. In addition, lest I get too cocky, there can be late complications and indeed early ones with this surgery. And the week after surgery in hospital was really bloody challenging. And the week after that when I came home. There are certainly dark times to be had with this surgery and you think they won't end. But they do.

As with Dan, I'm wary of telling you what to do also as it is your decision alone. Actually not even your docs. I can only tell you the truth of my experience in a smilar situation which, with a good surgeon, has so far been a lot more positive than I expected. That said, it was the toughest, scariest, loneliest decision of my life and it took me a year and a half to make it.

Your bladder may indeed be spared with BCG. But it is gamble and the stakes couldn't be higher. I'd probably do the last year the same again, using the BCG as a delaying tactic. Get up on nutrition, be happy, exercise and give your body the edge in the hope that things will turn out well. But as mountaineers do, have a strict turnaround time and if you haven't reached the summit by 2pm then turn around and go back. That's what i'd do. If you catch my drift.

Im an IT support worker
I feel fine walking around but, so early on, am still aware of very slight leakage chance in day. you learn muscle control for this which I can feel is gradually becoming unconscious
I intend to restart work at beginning of March. But I could start in Feb I reckon. My surgery was 19th October
Pads are great these days. I wear these "pant style" pads at night which keep my bed dry (a bit touch and go in the first week!). As Dan says, the day pads can be incredibly thin and even the wearer doesn't notice them a lot of the time. Again, this comes with a little time.


Any questions. Any time mate. Feel free to mail me if you don't want it on the board.

Tim

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12 years 2 weeks ago #2611 by dmartin12358
Hi Vin,
Wendy sent me your way, so here's my $.02 worth. Keep in mind that I'm pretty opinionated, so don't think that I'm trying to tell you what to do. Ok? It's your (and your doc's) decision.)

First, the other folks who posted provided good advice, IMHO.

I could write ad naseum but will keep this brief. I also was diagnosed with T1G3 and CIS two and a half years ago (I was 50), underwent two TURBTs and a dozen BCG instillations, eventually opted for a radical cystectomy (RC) a year and a half ago, and am glad I did. I no longer worry much about cancer, my neobladder works great, the only downside is that sex post-RC is not quite the the same, but I do just fine without pills or shots... I'm continent both night and day. I'm very active (competitive tennis, hikes, gym...).

T1G3 is high-risk cancer. CIS is high-risk cancer. Having both puts you in a higher risk group. I won't talk about low grade Ta tumors, or other extremely aggresive blc, since those are not what you appear to have, but both T1G3 and CIS can progress to become invasive, which can be very serious.

If you're considering a RC, the data shows that long-term survival (15+ years) is nearly 90% if the cancer is contained inside the bladder at the time of surgery - and the curve is bottoms out, which is great news. Pretty damn good odds, too.

You're welcome to read my Trench Tale, and I encourage you to read others as well:

http://blcwebcafe.org/stories.asp
http://blcwebcafe.org/stories/dan.asp

If you're a glutton for data, here's a bunch of articles that I read that were helpful (I'm happy to send you any of them):
http://blcwebcafe.org/stories/articles.asp

Neither urologists nor patients, given the same diagnosis, all agree on an ideal course of treatment. One person's carefully considered decision is considered extreme by some, another person's conservative decision may be considered crazy by others. Some folks are data driven (like yours truly), others less so. Only you can determine what is right for you.

Since you're so young, I'd recommend pursuing a path that would give you the best shot at normal longevity. Read the medical literature yourself, it's very enlightening. Seek second opinions. FIND THE BEST UROLOGIST/SURGEON/INSTITUTION. Don't mess around, it's your life! I was told by one urologist that given a T1G3 + CIS diagnosis, if and when it comes to surgery, you only get one chance.

Cystectomy is major surgery, but very doable. The absorbent pads needed after surgery (very likely to be temporary) do NOT show through your clothes.

Any questions, just holler.
Dan

Dx 7/04, CIS + T1G3, Age 50
2 TURBTs
12 BCGs
Cystectomy 8/05 USC/Norris
So far, so good (kow)

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