Home Forums All Categories Non Invasive Bladder Cancer CIS: What are the facts and opinions?

  • fightcancer

    Member
    December 13, 2006 at 4:24 pm

    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

  • Mikmckna

    Member
    December 7, 2006 at 12:37 am

    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
  • wendy

    Member
    December 6, 2006 at 9:19 am

    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

  • Bob_P

    Member
    December 6, 2006 at 7:20 am

    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.

  • timb

    Member
    November 30, 2006 at 10:53 am

    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

  • Dmartin12358

    Member
    November 30, 2006 at 2:02 am

    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)
  • pweization

    Member
    November 29, 2006 at 5:21 pm

    Mike and Tim,
    Those are both really good posts and I appreciate them. You know, i guess I was just looking to hear a bunch of miracle patients chime in and say that they had similar diagnosis to mine and still have their bladders after one round of BCG after 20 years.
    I know the reality of the situation and I’m trying to prepare for that decision but at the same time clinging to the hope that my bladder may be spared.
    What are the most difficult aspects of the cystectomy?
    How long before you return to work?
    What do you do for work?
    Can you run, ride a bike, lift weights, or swim?
    Is walking around comfortably normal?
    Do protective garments show through clothing?
    Any details would be of great help to me. Please don’t worry about scaring me or telling me what i want to hear. I’d rather get it straight and it seems like you guys are the right people to talk to.
    Thanks so much for the advice and sharing your experiences with me…I really do need guidance through this.
    -Vin


    34 yr old male
    diagnosed 10/13/06
    T1G3 CIS
  • timb

    Member
    November 29, 2006 at 4:12 pm

    Worth bearing in mind that BCG isn’t a free ride either. There are numerous possible side effects and unknowns. I was generally more frequent when I was on the BCG and felt run down a lot of the time. I still had to go for cystoscopies between BCG courses and, in the end, it wasn’t stopping the CIS. It may for you. As I said before, for me I figured it was odds on that I was going to eventually lose my bladder and I decided that it was best to lose it when the surgery had a better cure potential. I’ll never know whether I made a bad call so now I’m focused on living with my decision. And its a good life. Better than I expected in many many ways.

    The BCG did however buy me time to get around to the decision to have the bladder removed. I found that really helped get my head ready for it. I was also able to start amassing the support that has been so valuable; telling friends, making financial arrangements, finding out about supplies I would need, gathering information about bladder removal etc.

    My doc, was pretty grim about the CIS when it kept recurring post BCG. He said to me that I could be one of the lucky ones but I could also be dead by 50 (i’m 43). I had a grade 3 tumour, stage ta with CIS after 14 years of grade 2 multifocal disease (maybe 40 or so tumours over the years).Almost all the material I read (and I probably read far too much!) backed up what he said about BCG-resistant CIS. I think I had one grade 2 recurrence after the first maintenance BCG dose and then the CIS came back and I decided to throw the towel in.

    So, in a nutshell, I gave the BCG a whirl but prepped myself for probable bladder removal but with the glimmer of hope that it may not come to that. I also gave myself a strict rule that if the CIS recurred after BCG, then I would look at it matter-of-factly and go with the cystectomy. And that’s what eventually happened.

    If BCG fails to stop your CIS then there are other treatments available; interferon, radiation (my doc told me this was not advisable) and there are chemotherapeutic washes etc(I’m in the UK btw). But if it keeps coming back, I personally wouldn’t hang around too long).

    All the best

    Tim

  • Mikmckna

    Member
    November 29, 2006 at 1:05 am

    Pwe…
    You are a young person and as my Uro said to me… 5 year survival rates are great for someone on their 60’s and 70’s but you may consider longer term results.

    I had 5 tumors, T1, G3 with CIS. While BCG was an option for me, I opted for the cysectomy w/ neo bladder. I am not about to say it’s been a walk in the park but I feel very comfortable that it was best for me. No matter what, you will always be concerned about a new tumor showing up somwhere BUT I never again have to worry about a bladder tumor popping up and suddenly it’s T2 or T3 and spreading to other parts of my body.

    I can deal with the challenges of my new bladder but the worry over new tumors would have been too stressful for me. I can honestly say after 3 months I am very happy!


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

    Member
    November 27, 2006 at 9:41 pm

    In cancerland a cure often means 5 years disease free survival. BCG can give that and more. I’ve only been around ‘bladder cancerland’ for 8 years. I don’t know a lot of people who have got that far out from BCG, like 20 yrs with no recur, to say they are cured. Most people seem to recur.

    If you want to get as much info as you can glean on the subject of risk of recurrence and progression, see this:
    EORTC Risk Tables for Predicting Recurrence and Progression in Individual Patients with Stage Ta T1 Bladder Cancer
    http://www.eortc.be/tools/bladdercalculator/default.htm

    Europe has more definitive guidelines out there than the US. There are many references to published guidelines on WebCafe, under both superficial and invasive blc.

    Cheers,
    Wendy
    PS don’t drive yourself insane. Like some wise man told you, let the BCG do its stuff.

  • pweization

    Member
    November 27, 2006 at 9:04 pm

    Wendy (and anybody else who cares to throw in .02),

    Is there any chance of having BCG treatment cure multiple T1G3 w/CIS? Are there cases of people with that diagnosis that actually get to keep their bladders? I’m just trying to get a feeling for some of the choices I’m going to be faced with here in the near future. Give it to me straight…I can take it.
    If the concern is that some others may not be able to take it, please PM me.


    34 yr old male
    diagnosed 10/13/06
    T1G3 CIS
  • wendy

    Member
    November 27, 2006 at 8:35 pm

    Hey Vin,

    CIS won’t go away without treatment. With treatment I think it’s around 50-50, which in my opinion are decent odds (at least compared to a lot of other cancers). {{{no, wait, I need to modify that…up to 80% of CIS responds to BCG}}}

    Tumors or CIS, hmm. There are so many types of tumors it’s mind boggling. You have to know the specifics of the tumor to say if it is as dangerous or less dangerous than CIS. It’s temptimg to generalise and say CIS is worse to have, but sessile tumors (crater-like) and rare cell types can be just as dangerous.

    Papillary tumors are mostly low grade, non aggressive tumors that do not progress or invade.

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