Am I expecting too much from my new Urologist?

6 years 7 months ago #53124 by Cynthia
I was 47 when I was dxed with invasive bladder cancer. I entered into a clinical trial to try to save my bladder received systemic chemo and radiation. The cancer returned non invasive this time and they did BCG and it returned again. By that time due to the radiation and BCG my bladder was useless I couldn't hold urine it defiantly effected my quality of life. Leaking urine did not make me feel sexy to say the least and I was concerned about how the surgery would leave me. I traveled to Boston, Baltimore and Chicago and talked to three of the best in the country as far as Radical Cystectomy goes. I chose to have an Indiana Pouch and went to Dr. Gary Stienberg at the Chicago University Hospital he does three to five RC's a month my local guy does about three a year. There is an office there that helps people coming in from outside the area and they helped us find a temporary apartment. I talked to Dr. Stienberg about my worries we decided to leave my crevice and take my ovaries since I had already had chemo that threw me into the change. Because of anatomy the posterior wall of the vagina is affected by the surgery but the good news is that it is repaired and heals fine. I can honestly say that after healing and adjusting my life is normal sexually and every other way.
If you find a surgeon who does a lot of RC's you will have a choice of the type of diversion you have if your health is good and there is no spread of disease. The first type of diversion is the exterior bag it is the one taught to all Urologist and the one most often done because of that fact. The second is the Neo Bladder they use intestine and make a new bladder and hook it up to your original equipment. The Neo has to be trained before it is content and about a third of woman who have one are either hyper content or incontent but three quarters do well with it. The Indiana Pouch is done up to a point the same was as the Neo but the do a stoma and you use a catheter when you need to drain it. My stoma is in my naval and you would never know it was there but other people have the stoma on thier abdomen. I have a collection of make up bags I use to keep disposable catheters in my purse and other than having to plan for supplies when I traval I do not find it a big bother. There are pros and cons to all the diversions but most people find the do fine once they adjust.
For me my quality of life improved after RC I was once again content and was cancer free, able to move on. The important thing is finding a surgeon that does a high volume of the diversion you wish to have.
If you have any questions please let us know we are here. Welcome to our community.

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
President American Bladder Cancer Society

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6 years 7 months ago #53123 by sara.anne
Replied by sara.anne on topic Am I expecting too much from my new Urologist?
So sorry to hear about your issues. You have really been through a LOT! When you mention "chemo" after a TURB I assume you mean that they did a wash with mitomycin after? And you had an allergic reaction to it?
What type of treatments did you have when your cancer recurred (I assume that this is why so many TURBs?) Did you ever have BCG? Often that is the treatment when bladder cancer recurs. It IS unusual to have so many TURBs...usually a decision is made to try something different long before that. I do think it is good that you finally got a second opinion and Mayo does have a good reputation.

However, if you are not comfortable with your new urologist NOW is the time to make a change, particularly since you are facing radical cystectomy. This is MAJOR surgery and you will need all the support you can get. You do need a urologist who does many many of these, particularly in women. But you do need to have confidence in him. It is possible that he did not feel comfortable prescribing an aniti-yeast drug because of your reactions to mitomycin and thought that your gyno might be more familiar with your history? It would be a good idea to talk with your new urologist and ask him these questions. If he is not open to the discussion with you, then you know it is time to move.

Bladder cancer is treated somewhat differently than many other cancers and the "gold standard" when it keeps returning is to remove the bladder. Often chemotherapy is used either before or after the surgery, so an oncologist works along with the urologist, but chemo alone is not sufficient.

Right now you need to get answers to your concerns. If you do decide to move your care, Dr. Gary Steinberg at the University of Chicago and Dr Michael O'Donnell at the University of Iowa have excellent reputations. The most important consideration now is saving your life, and bladder removal, if necessary, can do this.

Wishing you all the bests

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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6 years 7 months ago #53120 by SoVeryTired
I'm kinda new here. I've been fighting BC for almost 6 years now. I've just semi-healed from TURBT #6. Had bad allergic reactions to chemo on surgeries #3, 4, and 5 that no one could figure out so no chemo was used this time. A new doctor at the Mayo clinic did this last surgery as my previous Urologist wanted me to have a second opinion.

As usual, I developed a yeast infection after being given antibiotics after surgery. Sometimes it's difficult to tell the difference between the pain from my TURBT and a yeast infection so I went in for lab work. They found it was indeed a yeast infection this time and the new urologist told me to go see my gyno for a prescription. My previous urologist knew my history and would automatically just write me a Rx for the one pill yeast infection treatment when he gave me antibiotics.

This Mayo doctor is talking about taking my bladder out next so that I can get SOME quality of life back. I'm only 43 and have pretty much been tied to the house wearing diapers since surgery #3 due to the chemo.

I'm feeling very uneasy about this new doctor performing such a life-changing operation on me since I am single and would still like to date again one day. I made myself go on one date since my divorce and telling someone that I'm fighting cancer is not a very good first date conversation, I found out. But that story is for another post.

If he won't write me a Rx for a yeast infection, how am I supposed to trust him when he's removing lady parts??

Should I still be seeing a urologist or should I try and find an oncologist? I only get one shot for this operation to go well and I certainly don't want to be fighting the pain or a potentially botched job the rest of my life. These are supposed to be my prime years and sex is still very important to me.

If anyone can tell me if I'm expecting too much from this urologist or if I should look for a different doctor or any other advice related to this, I'd really appreciate it. I just have too much to lose if he messes up.

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