Confused and Frustrated

My 67 y/o mother was diagnosed with muscle invasive bladder cancer a little more than four months ago.  Since the diagnosis we have seen several doctors and it seems like each one is telling us something different.

The first urologist we saw, the one who made the diagnosis, told me after he did the biopsy that he was able to remove the entire tumor.  That is was cancer and it would require some follow-up chemotherapy but the tumor was removed.  I breathed a huge sigh of relief.  When I took mom back to him for her follow-up I made the mistake of not going in with her, she came out in tears telling me that he didn't get the tumor out of the bladder, just the part that was blocking the urethra.  He told her she needed her bladder out but would first need 4-5 rounds of chemotherapy.

So off we go to the Medical Oncologist, a lovely man who recommended two different types of chemo starting with MVAC.  We were told that this might make her sick but it shouldn't be too bad and of course we would have medications to control the side-effects.  A little bit sick was a huge understatement.  I'm sure everyone knows violent nausea and vomiting, leading to dehydration, leading to kidney failure, a-fib and a hopsital stay.  Luckily they were able to restore kidney function.

After mom recovered enough from the chemo we went to see a second surgeon, we had to switch because the first wasn't on her insurance plan.  The second surgeon told us yes you need your bladder out, yes I can do it but because your'e fat you are going to make it doubly hard for me and why did you do chemo before I saw you, that's not the way I do things.  I'm going to schedule you for an exploratory procedure next week so I can see what's going on.  Needless to say my mom did not like this guy and since I felt that she needed to be comfortable with her doctor I told her we will find someone else.

Find a new doctor, wait 2 weeks to see him and we're told no you can't have your bladder out, or at least I won't do it and there is really no doctor in the Cincinnati area who is qualified to do it.  The surgery is 8-9 hours long, you will be in the hospital for at least a month afterward and 20% of the patients die on the table. You need to see a radiation oncologist because chemo and radiation will yield the same results as removing the bladder.  Mom is relieved because she didn't really want the surgery.  Radiation oncologist says yes we can do radiation but you need chemo as well and gives us the name of yet another medical oncologist that he works with. 

Make an appointment, wait 10 days see the new oncologist – yes we can do chemo, Gemzar alone, not as hard to handle as the other but you really do need your bladder taken out.  We should do 4 rounds of chemo, get your bladder out and then if the field isn't clean we can do follow-up chemo.   Cancel your first radiation treatment, see the surgeon and come back to see me on July 5th.

The Radiation oncologist finds out that I have made an appointment with a surgeon and calls the day before the appointment to tell me she does not need the surgery, chemo and radiation will do the same thing, she'll have to wear a bag, blah, blah, blah.  I said I know all of this and so does she.  We'll call when we make a decision.

Here we go again to a new surgeon – yes you need your bladder out.  If you choose radiation your bladder will shrink, you'll have to pee every 20 minutes and you'll feel like you have a bladder infection for the rest of your life.  I'll be happy to help you but you have to stop smoking, right now – today –  (Mom's a 2 pack a day smoker for the past 45 years) If you won't quit smoking I won't help you, no one can help you not even Jesus Christ if you want to kill yourself.  Mom doesn't feel she can stop smoking that fast, I would like to say if it meant the difference between life and death I'd stop but I've never smoked so who knows what I would do.

I really would be grateful for any advice from any of you.  I feel like my life is going completely out of control and I'm not even the patient, just the very frustrated daughter who doesn't want to lose her Mother because the doctors can't agree on anything.


Sherry Author