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BCG or RC?

simpleone
0 Recommendations

I am going to Shands Hospital (Gainesville Florida) on the 13th for my BCG follow up cystoscopy by my surgeon. My cancer is at/t1 but very aggressive and I have been dealing with this since 2004.

MD Anderson and my oncologist recommended an RC back in January but I agreed to give BCG a chance. I have heard that sometimes BCG does not necessarily work on the 1st series and there might be some tumors found.

With just a week left I am begining to feel the pressure of having to make a major decision. Any feed back is greatly appreciated.

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Cancer Surgery

15 replies

balihigh

I had to make the same decision you are facing last summer. At first I thought that I would take treatments and wait and see. Then a couple of days later I realized that this is cancer and it is nothing to play with. My doctor told me that if I went with the RC before it invaded the muscle, I would have a 90% chance of long term survival. If it invaded the muscle, that would drop to 60% or less. I then realized that it was a no brainer. I liked life better than my bladder.

I had my RC last September and have never regretted it one day. I am doing great. The surgery is a complicated one but many of us here are survivors. You will make it.

By the way, I am originally from Polk County, FL but retired to NC in 2001.

You will find many friends here. Welcome!!
Nancy

Cheyenne

I am in the same position you are. High grade CIS. MDA felt that I had at least a 6 month window before there would be any concern about muscle invasion. I have multiple pathologists look at the biopsies and had multiple biopsies to be sure we know what the grading and staging was. I trusted uro/onco suggested a trial of BCG so I have two more to go. Then 6 weeks and a cysto. If something shows up that is of a minor nature I will have MDA review it and if agreed I will go with the suggestion of getting BCG and interferon. After that I believe that one more tumor and I will opt for an RC. I think the critical thing here is that you have the best urologist you can get and who you can trust to keep an eye on this. My own thinking is that at best I can hang on to my bladder for maybe a couple of years. But treatments can change a lot in that time. At worst we find treatments to be non effective and an RC will be done. I trust my doc, as long as he and MDA agree I will go with their suggestions. If there is any disagreement I will go with an RC and not chance it.

lsh

Welcome to Inspire. I also have a T1 tumor that was found last September. I went to MDA also and Collin Dinney restaged me and recommended BCG. I have done 6 weeks of induction BCG and two rounds of maintenance and am still clear so far. Doc Dinney has said if I get one more tumor like the last one he recommends RC and I will listen to him. I am sure many others will chime in with their experiences. You will find this is a group of wonderful people with large amount of knowledge, experience and caring. Good luck with your decision.

Lynda

grampadonut

i went thru same drama..i opted for removal now rather then the "BCG" route..that may or may not work.
i'm not getting any younger and thought it best to do it while docs felt it was "contain" within bladder
i'm glad i did it...but its a personnel choice
wishing you the best
peter

Moonerj

Hi
As you can see from the above responses there really is no one answer to this disease. I hope that the BCG has worked in your case, then you can go on to maintenance BCG. If you do have a recurrence of tumors then you will be faced with the decision to give BCG a another chance or have your bladder removed. Listen to your Uro's recommendations carefully. If you feel, you should also get a 2nd opinion get one.
I wish you all the best at your check up.
Jack

BJsHere

Welcome dear friend.

Each of us is different and the cancer is as well.
By that I mean that our own bodies determine the
progression or digression of this ugly disease.
For the majority, different doctors, different mind sets.
Bottom line...... it is your body, your life.
Take all of the good information offered here by those
that have gone before you and make your decision.
Also go with your "gut feeling" as well.

I was diagnosed in 2003 and lost my kidney and ureter.
From 2003 until 2008 I went back and forth between BCG and Mitamyacin.
It was kept within the bladder until last fall.

To stay alive the bladder had to be removed.
I do not regret that choice.
Overall, I feel better than I have for a very long time.

Has the removal of the bladder stopped the spread?
For now, I believe so.
I am satisfied with that.

I wish you well.
Know that we are here for you.

BJ

roadrunner

Welcome to inspire,
In my husbands case bcg wasn't an option,,he had stage 3 t-2,22 months after his r/c he is doing well,,cancer free,,,the decision about bcg and trusting it will work is troubling,,,I think if you are happy with your surgeon,,,and his opinion,I would follow him to being cancer free,,the surgery is tough,,but I see your 58,,,my husband was 67 at surgery,and he does everything now he did before,
will you just be postpning what lies ahead? probably,
some jump in and get rid of it now,,,its such a personal decision,,,MD Anderson is very highly rated,
would you be having surgery there if needed too......?
Good luck in your decision making,

we are here in any case,,,,,,
Ginger

Crossman

I had ta/low grade tumors since 1993. Failed BCG several times, failed mit-c treatments. This year the tumors changed to high grade/ CIS. The doctor at MSKCC told me to have the bladder taken out. When I asked out waiting until the fall, he discouraged it and said as soon as possible.

My tumors had just started going into the bladder lining with no muscle involvement.

If I was to do another round of BCG it would only be delaying the inevitable. I decided not to screw around with it and just have the RC done.

Best wishes and I hope your BCG worked.

silgal

Hi simpleone, welcome! I am kind of at the same place you are.... except that I have a different kind of BC which is rare. I am still at the stage where I want to keep my original bladder although the people on here have made me feel sooo much better about a potential removal...
just wanted to send some moral support to you and to tell you you are not alone!
michelle

vtom

Simpleone,

Been there - done that. Properly diagnosed in 2004 - after 3 years of misdiagnosis - countless TURBs for superficial tumors - full round of maintenance BCG (36 months) - kept it at bay for 2 years but then - attacked my ureter and kidney so I had them removed six months ago. Then - three months after surgery they found 12 very angry, high grade tumors in my bladder - with no muscle invasion (yet). My oncologist - who I trust with my life - sat me down and told me he didn't want me to wait as he was concerned. I gave him a hug and said - let's do it.

So in 19 days - I will have my bladder removed while I still am in control of the situation. I feel confidant about it.

You need to walk through a decision path and decide what your ultimate goal is (mine is to be cancer-free and avoid chemo if possible). You need to have a health care team that you trust with your life and then listen to their advice. I would never want to look back with regrets that I should of . . . or could of . . . Right now I have peace about my decision. So when you feel at peace - you will know you are making the right decision for you.

Praying that you will have wisdom from your health care team and peace about your decision - Veronica

jj803

Hi simpleone,

I also presented with what was thought to be T1 high grade disease and recommendations at both MDA and Vanderbilt were BCG induction and if any invasive recurrence RC. Both docs concurred that this is a very difficult tumor for them to make recommendations since BCG works in a substantial # of patients that can then save their bladder, but fails in a substantial #. They thought that delay after a failure compromised the chance for a cure and would have done RC if a T1 occurrence after BCG. At least one of the 2 would have allowed CIS to continue BCG. Both would have done a 2nd 6 week course of BCG followed by 3 years of maintenance, if BCG worked. Because there was a pretty good likelihood that I actually had muscle wall invasion (T2), I opted for RC which proved to be the right thing for me (small area of muscle invasion in the RC specimen) and I have done well since and do not regret the choice. I was 59 at the time and in good health and physical condition. The relatively high chance that I would eventually need RC convinced me to take that step early, when I knew that I was healthy and in good condition rather than possibly later when these factors might not be in my favor. I am sorry that you are faced with this incredibly difficult decision and hope that BCG has done the trick for you. Best wishes,

JJ

Kyle-MO

Hi Simpleone,

I wish you the best on the decision you will have to make. Everyone's case is a bit different, and I hope BCG will work for you. The ultimate goal is to be cancer free.
Take care,
Kyle

simpleone

Thanks ever so much for the warm welcomes and responses. I appreciate the sharing of your experiences and words of encouragement. What is most impressive to me is regardless of what choices you have made there remains a positive attitude.

I probably a bit gun shy as I’ve never had a cystoscopy that did not result in a TURB.

Thanks again for the information and I sure am glad I stumbled upon this site.

Vtom I wish you the best on your upcoming surgery.

YvonneM

You are in my thoughts and prayers!!! Stay Strong.
Yvonne

EricAndre

Hi
If both Doc recommended an RC then this is it. I know it is a hard step, but the sooner the better. I had two RC
(Neo bladder was a mistake for me, I now have a Bag and am very happy with it.
Too much thinking is no good just do it and think after when you have a life.

BE well and at peace
Eric

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