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Do I Feel Lucky??
Hello All – Not sure if this is the appropriate forum to post this in but…I am new here but not new to BC. I am now faced with a very difficult decision and don’t know which way to turn.
My background: I was diagnosed with BC in 2005 and underwent TURBT. Pathology came back TA, G1. I received the 6 BCG treatments and did all of the follow-up, i.e. cystos every 3 months graduating to every 6 months. The only hiccup was a couple of spots my uro detected during a routine cysto and those were cauterized (sp?).
My last cysto was in August and at that time, if I was once again all clear, I was to graduate to cystos only once a year. Unfortuantely, my uro spotted some problem areas and a FISH came back showing abnormal cells. Another TURBT was done and this time the pathology shows TA, G3, very aggressive.
My uro, after doing some research says there is no clear answer as to what to do in this case. On the one hand, the cancer did not reappear for 4-1/2 years but on the other, it did reappear and is much more aggressive than the first go around. He says, and it’s been seconded by Dr. Richard Bihrle at IU Med Center in Indianapolis, that trying BCG again is a valid decision and that a radical cystectomy would be a valid decision.
I feel like I’m at a proverbial fork in the road without even a hint of what is the best course of action. It truly feels like 50-50. I surely don’t want to lose my bladder and endure the trials of surgery, rehab, etc.. but I’m also not one to leave things to chance; and according to both doctors there is a chance (probably small) going the BCG route for this to end up being lethal. I mean, even if it’s a 5% chance, what if I’m in that 5%? If you can’t tell, I’m not much of a gambler…I don’t even buy lottery tickets.
Sorry for the novel, but does anyone have any words of wisdom? Have you faced the same type of decision? Any help would be greatly appreciated.
Jim
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18 Replies
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Jim,
Please do. There are LOTS of here with neobladders who would be happy to answer any questions.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Mike – Surgery is scheduled for Wednesday, December 15th. I know you got the neo so I hope to be able to ask you some things when they come up as I research more.
Pat – That’s great to hear. I’m really nervous about this whole thing but it helps to know I will be in very capable hands. I’ll post more as things progress. Support and knowledge from those that have been there is really going to help ease my anxiety.
Jim…great place..great surgeon.
keep us updated
pat
Jim,
Ask away!
First off, congratulations on your choice of hospital and surgeon! You are certainly doing the right thing there!When is your surgery scheduled?
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Hi again,
I wanted to provide an update and also thank everyone who has been so helpful so far. I say so far because I think I’m going to need your continued help and support.
After much soul searching and many discussions with family, friends and the professionals, I have decided to have the RC. Many factors led to this decision. Statistical odds, BCG hell the last few weeks, and the desire to get off the merry-go-round were just a few.
I’ve opted for the neo-bladder and my surgery is scheduled for December 15th. It will be done at the IU Med Center in Indianapolis by Dr. Robert Bihrle. I wish I was going in for it tomorrow…just want to get it over with now that a decision has been made.
I hope you veterans won’t mind if I post questions as arise. Then, after it’s over, maybe I can help the next person that comes along in the same boat.
Anyway, thank you all again for the help and support. You’ll see me around these next few weeks as B-Day (bladder day) approaches.
Jim,
Keep this board posted as someone will have an answer for whatever question arises. BCG is a distant memory for me but, you will get through it. One word of advice. Many have experienced increased side affects. You can always go to 1/3 1/4 1/10 dosage and still have good responses.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
So many thanks to you all. So much information to digest but thank you for pointing me in that direction. The more I understand, the more confident I feel that my doctors and I will beat this thing one way or another.
Reading and studying has helped my memory and what I now remember is that my cancer before was transitional cell and this time around it is carcinoma in situ. I remember Dr. Birhle stressing that this time it was CIS. After reading I now know why.
As Pat said it is kind of a roll of the dice. But I have no doubt that they will keep a close watch on what is happening.
Btw, I just completed my 2nd dose of BCG (not fun, I had forgotten how unpleasant the side-effects were) and expect to hear some follow-up today or Monday from Dr. Birhle. Will let you know how that goes. Thanks again for all of your help.
Oh and Alan, absolutely Boiler Up! I think if we get out of the NU game without someone else going down for the season it will be a win. I had such high hopes for football this year. Not giving up yet but it hasn’t been pretty. On the other hand, basketball season should be sweet!
Boiler Jim,
I am copying the updated link on BCG that Mike bookmarked awhile back. Gives you more info about BCG. http://www.uroweb.org/?id=218&gid=1
FWIW department. I choose BCG because it wasn’t muscle invasive and to give a chance to retain my bladder. As Cynthia mentioned there are risks either way. I found this site a few years ago just as I started my first BCG and avidly followed as I acquired info to make good decisions. For now, any recurrence or progression I will see MD Anderson in Houston as it’s only 2 1/2 hours from where I live (close to San Antonio). Hopefully they will never see me.
Keep reading other threads or the other material available on this web site. You are welcome to talk directly with me if need be but, I consider Mike and Pat supreme experts!
Boiler up against NU this weekend and celebrate life! You have found an adversary and will beat it!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.Sorry my fault..i said T1 should have said Ta……but a lot of studies demonstrates the high progression potential of stage Ta grade 3 tumors, since nearly 50% recurred and 25% progressed to invasive disease. These results may be closely compared with the results of previous trials of stage T1 grade 3 disease.
And there is new stuff out there also which says a complete resection and clean margins which only the best can get as you know (Memorial Sloan found a 75% error in patholgical staging…thats pretty astronomical..this from patients coming in for second opinions)..and follow up with BCG may reduce it back to a lower grade.
Its kind of a dice throw isn’t it? As long as you have a top notch surgeon watching this you’ll know if its going to work or not in pretty short order.
There are so many markers out there now and tests for mutations that can predict but which institutions use them? I don’t know…my guess is the top ones.
I know my questions at this point would probably drive them up the wall.
Pat
Jim,
Your note said Ta G3. Is that still correct? I saw some posts about T1 and that would be a different decision in my opinion.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Jim
As you can tell by now, we are a fractious bunch. There are many ways to attack this. None of them are wrong. And none of them are perfect. They all involve risks. Judge the risk for yourself.We are pleased to have you here. As you can see, the answers you get will be honest and caring. Our only goal here is to get you well. I wish I had found this site before my neo surgery. I was so unsure of the direction we were headed that I just questioned everything.
It was just the expertise of my Dr.s that led me to the right decision. Finding this site was just a way of confirming my Dumb Luck. These people were able to show me Why these decisions were made and why I am still here. My Dr.s followed Mike’s Chart!
Keep us in the loop!
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
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New Man! [/size]Hi Jim,
Well first of all Indiana U is tops in Urology and bladder reconstruction……Dr. Koch can whip out a neobladder in 3 l/2 hrs..and Dr. Birhle extremely experienced. I actually intervied Dr. Birhle when i was making a decision on who i wanted to do my surgery and i needed what i call female friendly…Dr.Birhle is a master at the Indiana Pouch so he was my choice. At any rate this is where you want to have surgery done if thats the route you decide to take.
There are many markers which can indicate which cancers are more agressive ..MMP 9 is a newer marker studied in Denmark.
Several articles have been written on T1G3 and are under Articles of Interest.
Pat
Thank you all for your help. I posted a follow-up and I have no idea where it ended up.
Allen, yes I am a Boiler. Class of ’84. 2-1/2 years cancer free with a G3 using BCG gives me hope.
Mike, thanks for all of your help and posts. They have really helped me. In fact, your success with your neobladder gives me hope. What I meant by BCG being fatal was that if the cancer reoccurred and wasn’t detected befor it spread. I’ve asked if that was a possibility and both my uro and the IU doc have said that it is. Small chance but a chance nonetheless. I’m not a gambler by nature.
Anyway, Cynthia hit the nail on the head. I want to know that whatever decision I make is one that I will not regret. Unfortunately, it is apparent that there is no clear cut “right” decision in this instance. So many variables and degrees of risk to consider. BCG seems like the easist choice but to be honest, the thought of a “cure” is appealing because I’ve dealt with this for 5 years, now face another 3 minimum, and a reoccurance is possible.
Better do some more research and put together some more questions for my doctors…and pray. I will let you all know what I decide. I’m blessed to have found this board and everyone here. Thank you again!
Thanks for the replies everyone. Yes Allen, I am a Boiler, class of ’84. I can’t wait for basketball season. We should be pretty tough. Love football but it seems we’ve been cursed this year with all the injuries. 2-1/2 years cancer free with BCG treatments on a G3 gives me hope.
Mike, I’ve lurked here since August when my reoccurance was found. I really appreciate you insight and all the help you’ve given to so many, including me. What I meant by BCG possibly being lethal was if the treatments were unsuccessful and the cancer spread before being detected. There is that possibility because I’ve asked my uro and the doctor at IU that very question. According to them it may be a small possibility but it is possible since this time around the cancer is so aggressive.
I probably will decide to do the BCG, maintenance, cystos, etc… but the thought of doing something (RC) that would “cure” has merit and is appealing in a way. I’ve been doing this for 5 years and now face another 3 minimum, which at any point the cancer could reoccur. Hopefully if that happened it would be caught in time.
Sorry, I’m rambling now. I’m just uncertain and afraid I’m going to make the wrong decision.
The problem with bladder preservation is that if it fails the radiation can cause surgical complications. I am an alumni who failed the protocol and it is a very hard course and can leave you with other health complications. Unless something has changed the clinical trials are for invasive as systemic chemotherapy is not considered effective against non muscle invasive.
As for the choices you have neither would be considered to be wrong. It is hard when faced with having an elective Radical Cystectomy. There will never be the day when the doctor will be able to say you made the right decision and you will always wonder if you did the right thing. On the flip side it is possible that the day will come that you wished you had. On the other hand you could do BCG and find that it works again for years or forever. Age can be a factor here if you are disease free for ten years and have to have an RC will it be more problematic at that stage? Have you looked at the statistics between survival rates for BCG TA High grade versus Radical Cystectomy is that your first priority? This is a hard choice and is different for everyone for different reasons. Ask questions be your own best advocate and make the decision that is most right for you. And we will be here to support you all the way no matter what you decide your treatment path will be.
Keep us informed please.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
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