Your feelings are certainly understandable. This can be a really tough time.
As for decision making, I guess sometimes there are not a whole lot of options so it is often easier than you may think.
I'm not so sure about your conclusion for BCG with CIS. It often does work long term. Yes, there is the constant follow up and cystos, etc. and sometimes people get severe reactions (I was one of them) but it also works very well for many.
There is a female doctor at University of Colorado Hospital in Denver.
She performs somewhere in the neighborhood of 100-150 cystectomies a year and she's part of the Southwest Oncology Group (the group that Dr. Lamm is part of).
As to your reasoning for only wanting a female doctor, it sounds more like she happened to be a woman and not that she was able to fix you because she was a woman. Top doctors in their field are top doctors in their field. Doesn't matter that some are men, some are women, some are Caucasion, Black, Indian, Chinese, German, Christian, Jewish, Buddhist, Atheist, Agnostic, etc.
If the doctor that fixed you happened to be left handed, it isn't because s/he was left handed...
Anyway, if you feel really strongly about it, then it just limits your choices but it is certainly your prerogative.
Pat may know other top female doctors around the country but it is a fairly male dominated field.
You will be back to being a "positive guy" once again. It may take a while as we each deal with this thing differently and in our own time. Certainly sounds like you are doing your homework and that is a good thing.
I sure hope your wife's situation is just stress and not something more serious!
We all know how you feel and how your mind takes you on dark side trips - esp. in the very beginning of your journey.
My first couple posts (in 2006 on this site) I signed as "shell shocked" then "teardrop" so that tell you how I felt. But after all the information I gathered here and research on my own, I was able to wrap my brain and emotions around bladder cancer.
First and foremost - BCG is most effective on CIS. I am three years out (almost)and after 24 BCG treatments, so far so good.
On the other side, my brother was dx'd before me, his was already in the muscle and he had to go straight to surgery - that was 6 years ago. He went to Barnes in St Louis (Dr Arnold Bullock - recommended by MD Anderson) and is a "poster boy" for the Neo Bladder. Never an infection, and like Mike, does everything he did before. One difference he is 74 years old!
I have had some side effects from the BCG, but life moves on and so do I. I am now visiting my grandchildren in VT and feeling great!
In the beginning I dreaded the three month cystos. I would think about them the entire three months As the "all clear" kept repeating, I don't fear for the full three months, but I still get nervous the week before my next cysto.
The point is - even if the BC returns - I know from all the successful history on this website alone, life goes on.
I have had several "second opinions" from the best doctors I could find. I did do research on each one before I made an appointment, but as long as you keep a close watch on bladder cancer, you can have successful outcome
I have spent the last few days trying to absorb some of the information and experiences on this board and I've only scratched the surface. There is so much to learn and consider. It is amazing how much information you guys can put out in a heartbeat!
This has been a most trying time for me and my wife. My Mother passed away in mid-January. I first noticed the hematuria the last week in February and was diagnosed the first week of March. BCG started in late April and finished the initial six sessions the end of May. Today, my wife informed me that she went to the doctor this morning with chest pains and has an appointment with a cardiologist in the morning. You know what they say: "Cheer up, things could be worse!" (So I cheered up, and sure enough, things got worse!)
I am absolutely one of the most positive people you could ever come across. I have always been described as a Type A personality. I usually don't have to be proded to get me to take charge in just about any situation. I am generally calm in a crisis and quick to adapt, improvise and overcome. However, when it comes to coming to grips with this cancer, I am almost paralyzed. I am scared out of my mind. It seems that, with CIS in the picture, it is more a matter of damned if you do and damned if you don't.
From the literature I have read, BCG works - but only to a point. A point that cannot be determined until the instance of failure. The cumulative effects of BCG increase to the point of being ridiculously painful and fatiguing. Even if one can tolerate the continuous onslaught of caths, solutions, irratations, fatigue, and other insidious complications and/or side effects, the CIS can slip the noose and take up residence in another location of its choosing. If the BCG alone is not working, other compounds/solutions can be included, but the result in the same - eventual failure or just plain doesn't work.
The flip side is to just suck it up and have the little beggar removed. Then, if you are real lucky and the insurance permits, you get a surgeon that actually knows what she is doing and you get a "diversion" that gives some resemblance of normalcy (except for the months of retraining and consessions that have to be made during sleep and when traveling or being in an unprepared/unexpected situation for any extended period of time). I haven't even addressed issues of UTI's and other complications such as constipation (who would have thought?), just to name a couple.
With all of these thing lined up to eventually be confronted, I don't see how you all had the ability to make even the smallest of decisions, let alone make any of the major decisons required by this disease.
Of course, the final option is not really an option at all - do absolutely nothing and be done with it. Thankfully, I am not ready to give up and observe flowers from the viewpoint of a grub worm, so . . . I am going to have to try and summon the strength to face what will no doubt eventually be demanded of me. I think the part that is driving me crazy is the waiting between actions.
I just realized that I started the note to tell you all "thanks" for giving me so much to read and consider and I have turned it into a full blown rant. I apologize.
I am going to end this on a positive note. I could use some information about getting a second opinion. I go in on the 6th of July for cysto after the initial 6 week BCG regime. I don't know why, but I figured that after this cysto would be the time to get a second opinion.
My preference is a female doctor. No, I am not a perv. This preference stems from an incident several years ago when I had a nerve problem that ultimately was determined to be a pinched nerve that was wedged in a fractured vertebra in my neck. I went to five different male doctors, was subjected to almost every type of test one can imagine, told everything from "live with it" to "we will fuse the vertebra and you will experience some loss of flexibility." Being unwilling to except any of those solutions, I returned to my family doctor with the following instructions: "Cure me or kill me!" He sent me to a neurologist (a female). She asked that I bring all records that had been generated over the past several months and any film that had been created. When I arrived, she asked me to explain to her what I was feeling and what had been done to that point. She actually listened to what I had to say. That was the biggest difference from the approach of each and every male physician I had seen previously. She examined the mri's and then asked me when I had broken my neck. I responded that I have never had a broken neck. She disagreed and told me that if I did exactly what she wanted me to do that surgery would not have to be performed and that I would be as good as new in a very short time. She was right. Ever since then, I have sought out a female physician when one was needed.
With the preference of a female physician in mind, what cancer centers would you folks recommend and why? What should I be looking for in obtaining a second opinion? I suppose confirmation that my doctor is on the right path is obvious, but what else should I be looking for or expect to happen in obtaining a second opinion? If my next cysto is clear and she puts me on a maintanence BCG program, how will that effect what another physician can do (testing, cystos, etc.) in making an independent opinion? It all seems so confusing and overlapping that I don't see how one can be achieved without halting any ongoing maintanence program.
Well, I'm sure that I have subjected you to some form of "cruel and unusual punishment" with my ramblings and rants. I am so sorry, please accept my sincere apology. If any of you have suggestions regarding a second opinion, I would really appreciate the information.
Thanks in advance,
TURB 10 March 2010 dx small papillary TCC, CIS non-invasive
2nd TURB 7 April 2010
1st 6 BCG treatments completed
cysto 6 July 2010 - "No Recurrent Cancer"
Start 2nd round of 6 BCG 23 July 10
Yes, it is really hard to get your head around at first. Funny, but I went home after my first TURB (that was diagnosis: papillary....the CIS came after the second TURB) and lay in bed and thought..just like you did..."at least I know what I am going to die of!" Now, two and a half years later, I don't think that at all.
Everyone always says to "buck up" and think positive and all that crap. Forget it. You are ENTITLED to wallow in this for a bit. It is a bit like crying your heart out over a big disappointment. You feel better when it is over and can then proceed to take stock and reoganize your thinking. THEN things begin to look better.
As many of the other list members have pointed out, what is the worst thing that can happen? OK, we have to lose our bladders. BUT that is curative!! And look at how Mike, and Pat, and Cynthia and so many others are living full, productive lives. If that is the WORST, I can deal with it!!
Another way that I deal with it is to participate in this list/forum. The people here were so much help to me that I only hope I can help also.
In six months you will feel like a real veteran/warrier, comfortable with what you are doing for your health and confident about the future.
Tincture of time.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society