Keep bladder or remove it

I just finished my 5 th BCG treatment. I am 56 and this is the second time I have had aggressive cancer. I had it when I was 43 and went through the course of BCG. Then is was aggressive superficial and in one location. Now it has returned and is cis and all over the bladder, but still superficial. The doctor recommended BCG and it sounded good to me. I have read several posts and am concerned that others have gone the same path and regretted it because the cancer came back and was worse, invaded muscle or lymph odes . For those people where the cancer cam back were you being tracked with cyctoscopes every three months, along with a urine analysis. Also what type of cancer was it and how much penetration had occurred. Just wondering what the best path is. Keep the bladder and risk a recurrence possibly worse and more complicated or remove it and suffer the surgery and recovery process. Also the question is in which case can I continue working. The surgery would knock me out for 4 to 6 months and the BCG would require me to take off 4 Fridays every three months for 3 years. Assuming I had no bad side effects. Not sure which way to go.

Report post

26 replies. Join the discussion

My husband did everything right - never missed a 3 month cysto, never missed a bcg treatment. Was diagnosed in June, 2008 at T1G3. After 1st bcg treatments, cancer recurred, although at a lower stage and grade. Another round of bcg, and no cancer for a year. Then, at his 3 month cysto, cancer came back with a vengeance, pathology showing very aggressive cells. The turbt was difficult, as the cancer had recurred in the exact same spot, and biopsy was difficult, as scar tissue was present, and the urologist was afraid of puncturing the bladder. The next step was either try biopsy again, or try valrubicin, or rc. We elected rc, as we were of the hope that his T1G3 cancer would not recur with the bladder out. Next step was pet scans, ct scans, etc. Nothing showed up, all clear - or so we thought. During rc surgery another tumor was found, it had invaded the muscle, and microscopic cancer cells were found in 2 lymph nodes. Husband now has stage IV bladder cancer.

If I had known then what I know now, husband would have had the rc at diagnosis. I don't know of many cases of T1G3 or CIS that don't have to eventually end up with rc anyway.

My recommendation (and I'm sure not everyone will agree with me, this is based on our experience) is to have the rc now, before the cancer progresses.

No matter what you choose, I hope that you remain cancer-free forever!

Gayle

Report post

Congratulations on your 13 years of being BC free. I'm sorry you're having to face this again but we all know that recurrence is a part of this type cancer. The decision to go with treatment or to go with the bladder and prostate removal is yours to make after educating yourself about all your options.

As you're aware carcinoma in situ (CIS) of the urinary bladder is a highly malignant and aggressive cancer The chances for recurrence, invasion and progression are much higher with CIS. The standard treatment for CIS is intravesical BCG therapy. If one fails BCG therapy then it is time to look at a radical cystoprostectomy (sp). In your situation, I would definitely go for a second opinion at a major cancer treatment hospital.

Wishing you the best.

Kathleen

Report post

Take no chances Go to a Cancer Center. I had the type of cancer, BCG treatment for 2 years I was o.k. for 2 years them it returned with vengeance had to have my prostate lymh nodes and bladder removed.Cancer free now , using a exteral pouch . I am back to full acivity for a 67 year old male. What state are you from Ask for advise and Doctor names on this site, great information from your new friends. Vince

Report post

Agree with second opinion from a major cancer center. I have always wanted to keep my bladder as long as possible, but at some point logic dictates that it's time to go to the next level. Good luck.

Report post

If you get the RC, chances are that the cancer is then gone and you can move on with your life hopefully with no more invasive chemical treatments. If you keep postponing, you are risking your life and statistics show that it isn't a good bet. Only you can make the decision for yourself. I had a rare untreatable / incurable form of BC and they found non-rare cancers in my prostate and uretrha as well during the surgery. I got an ileal conduit with bag and it's not a problem at all. No catheters to worry about or much of anything else really. Luckily for me, they got all of the cancer out, it had not spread outside of my bladder or prostate etc. and I'm now (after 4 1/2 months) a cancer survivor doing almost everything I did before and looking forward to a long life. Do your own research. Then make a decision and don't look back. Get it out!!! That's my advice.

Report post

K ----It sounds like we are sailing the same ship. BGREENE359 welcome aboard for a long and healthy life....Vince

Report post

Thanks everyone for your input. Any comments on the best path for work. I was working at Raytheon and let my manager know I had cancer. So my reward was the day before surgery they called and layed me off, giving me a 60 day notice. Getting a new job and telling them I need 4 Friday off every three months might hamper my employment opportunities. What do you think.

Report post

An excellent question Bgreen359. I have a close friend just beginning treatment options for stage 1, high grade non-invasive bladder cancer. He has his 2nd TURBT next week after the 6 week BCG course. Your question stood out in my mind reading through the stories here. It seems if it were possible to quantitively rate the aggressiveness of the cancer after initial treatments (e.g. TURBT, BCG), it would be a no brainer to make the decision to remove the bladder. I don’t have direct access to ask a medical professional if measuring cancer’s destruction and invasiveness is possible, but perhaps you do. I will keep you posted on my friend’s progression and experience fighting this foe. I wish you a victorious outcome as well.

Cheers,

Amber

Report post

With this type of BC, you are gambling with your life prospects by continuing with BCG. I understand that side effects often increase as treatment goes on. I worked out that if I went right through the 3 year Lamm protocol, needing to take sick leave for each treatment, it would actually total more days off work than recovery from RC. I chose RC straight away & was off work for 3 months, with phased return after that. Some people have gone back sooner - depends on the location & type of work. Now, with the best outlook possible, I have confidence that there'll be no more sick leave.

I understand the worry about keeping a job - but should you have an invasive recurrence, you might end up having chemo and RC, entailing even more sick leave. A difficult dilemma - good luck.

Report post

In "big" corporate America today, people don't matter much any more. It's all about money, insatiable greed, and corporate consumption. Human beings who contribute to the system are often just thrown away like old sacks of rotten tomatos and replaced with new younger ones whose futures become even less secure. Get sick and you're pushed out by selfish self-centered small-minded managers whose job it is to keep this system going. Corporate money runs our government, makes war, and is destroying our earth for sake of money. LAWYER UP!

Report post

Hi

Last year I was diagnosed with T1G3 – with a very aggressive type of cancer. My surgeons recommended and RC from the very start AND I just thought to myself, “Get It OUT!” and so I opted for the RC, without BCG treatment. I had my RC on 8th July 2011 and I am back to normal with regards day time activities – I had neobladder and it’s still needing night-time training but that’s manageable and, in MY opinion, better than the alternative! I am cancer free!

It is a VERY difficult choice but if you gather all the information you can and relate it to YOURSELF, then YOU will arrive at the decision that’s right for YOU!

Good luck with.

Regards

Oakcarver

Report post

I am new to this. I have stage2 and am starting round 2 of 4 cylcles of chemo . I am been told bladder and prostate removal best chance
For survival. Hard to decide on removal.
Thinking of going for third opionion after chemo. Just very nervous about all of this?
Looking for imput

Report post

My husband has t2g3 bc, has had 2 turbt's, and has opted to try the chemoradiation. He knows it is a risk, but would like to spare the bladder if at all possible. I am not quite as sure, but in the end it is his decision to make. He is being treated at MDA in Orlando. Our original urological team was in Daytona Beach and they did not even mention the chemoradiation as an option, so be sure to do your research.

Report post

Bgreene 359.....Get on sick time as a former labor leader or which one pays the most money

Report post

Well, I can't answer for you. I had the same type of agressive cancer, and constant fear of it returning. However, after 18 BCG treatments, I am still cancer free since 2007. I do have blood in my urine and I do have some atypical cells. I am on constant watch. However, I still have my bladder and I will still fight to continue to keep it. Once it is removed, again, there is no turning back. I feel great and I am 71 and still fighting. I am aware that this will be for the rest of my life, which I am thinking maybe another 30 years. Looking forward to keeping this bladder. xxoo Buddy Again, Hang in there, you are not alone.

Report post

I live in New YorkHave seen 4 doctors 1 @ Sloane .
All. Says about the same chemo and remove bladder and prostate
Met a surgeon who does robotics in Winthrop
He is first doctor told me I would live. We have great doctors here
Just hoping chemo works
Called cancer center of america. In Phila for advise there first reply Give up on doctors here and what is your insurance I'd number
Cc would now be my last choice.
I will get 1 more option from A big shot before surgery

Report post

Hi B Greene

Sloan treats me for t1HG + CIS...Take my BCG treatments like a good soldier......They saw the original resectino site from two turbs.
Explored the ureter and placed a stent.Any questions from the cysto they go back inside for a look. They just use the word "recommend" ...I am very despondent with this word but you cannot back away....

They will recommend to me RC when the situation presents itself. Sloan will not back away. A good cysto and negative cytology are required.

They do not have to tell me....it is clearly understood . ....... I am apprehensive each and every time. BC has a better than 50% chance of recurrence., the high grade kind anyway...Along with skin cancer it has the 2nd highest rate of recurrence.

I want to take my bride of 38 years and travel and do things but she has the medical coverage still works , and we both need it. I think those of my BC brothers and sisters are right to have a RC and be done with it once and for all. Pyschologically you must be ready.

My former employer was understanding about my BC, They just docked me when I went over my alotted sick and vacation time which is at it should be. 20 x at Sloan in 2011.....

You never know you ... save for a rainy day. Live life within your means...Saying no to your children is very hard.

warmest regards to all




A local urologist is not the best for this disease, if at all possible get to see people who see this day inj and day out....

Report post

It should be remembered that a radical cystoprostatectomy is not a last ditch effort, it is about giving you, me, us the very greatest chance at making a full return to normal life.

My docs told me that the disease had changed and was becoming a worry to them. They spent time explaining what would happen if I elected to forego surgery. Sorry, but I still have too much life to live. I want to see my children leave school, to graduate from University, to follow the career of their choice and, one day in the future fall hopelessly in love and get married, then sometime if they wish - provide my wife and I with grandchildren to dote over.
So, no. 5 years was simply woefully inadequate. We compared diaries, I had the op, In recovered.
I can't get bladder cancer again, or get prostate cancer ever.
Am I downhearted? Heck no, I've started living the rest of my life - not serving a death sentence!

If you have the choice, get it done while you are young, recovery will be MUCH faster.
No more BCG, cystoscopies etc. Just precautionary ultrasound and ct scan each year.

Take care, be guided by the medical professiomnals, take your significant other with you so they can hear it from the horses mouth - they may well have questions just as important to ask the doc!
Then, when you have heard all of the information - YOU will need to decide.

Decide well, then very soon you will be able to join those of us who are delighted to belong to the "Cancer Survivors" club.

[Perhaps someone should design a nice enamelled lapel badge... "I'm a cancer survivor"]

Report post

I am confused and need some advice myself. Everyone here seems to lean towards RC for BGreene. I had a large benign tumor removed twice with bladder biopsies, both times it came back negative for cancer but indicative of chronic cystitis. Then within months I was diagnosed with Cancer in Situ in various places. I went through the 6 rounds of BCG, had a FISH urine test and total bladder biopsy. All came back negative. So as of today I am cancer free. No one has done more research using BCG than Dr. Lamm. Reading his website indicated that BCG treatment of CSI followed by a maintenance program had an 84% of total disappearance of CIS. During maintenance the dose can be at a ratio of up to 1:100 and still be effective without all the negative reactions. Given those stats, why would BGREENE not go for the best chance of keeping his bladder? I am not a doctor and therefore could not offer advice, but I do know how to read, and the odds are still very much on his side keeping his bladder.

Report post

My husband has also opted for chemo/ radiation. The one thing that swayed his decision was reading the research on BC vs Chemoradiation. Statistically there is not much difference in regards to reoccurrence with either option. Of course there are many factors to consider. Read, ask questions and do whatever you believe is best. I do strongly suggest you go to a major cancer center. It was our experience that they do all possible to assist with bladder preservation when warranted where the local doctors all immediately leaned toward RC. I wish you the very best.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support BCAN

Help the Bladder Cancer Advocacy Network reach its goals and support people like yourself by making a donation today.

Donate to the Bladder Cancer Advocacy Network

Discussion topics

Walk for Bladder Cancer May 3rd

Walk for Bladder Cancer

Resources from BCAN

BCAN on Facebook

Like the Bladder Cancer Advocacy Network on Facebook

Community leaders