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Decided on RC-need the right surgeon

1 month 1 week ago #58111 by leelee
I have decided to go with the RC, my next step is finding the right surgeon. I am in Atlanta and am opting for the neo bladder or indiana pouch either one, if possible. Bag if no other option. Any thoughts/suggestions/etc are appreciated.

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1 month 1 week ago #58087 by leelee
sara anne

Yes is does help. Thank you!

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1 month 2 weeks ago #58086 by sara.anne
I will try to reply for Cynthia as she is still "recovering." (Before you all feel too sorry for her, she did conclude her journey with a "Grandma Fix" with her two darling little granddaughters!)

TCC is short for "transitional cell carcinoma." The transitional cells are the cells that line the bladder and TCC is the most common form of bladder cancer, and fortunately, the most treatable.

CIS is short for "carcinoma in situ." TCC shows up in two forms, and many of us have both. The first is papillary carcinoma, in which the tumors form stalk-like shapes, sort of like mushrooms, growing out of the bladder lining. These can be either low grade (slow growing) or high grade (rapidly growing and dividing.) CIS form like a rash on the bladder lining. Since it is not a discrete tumor it cannot be removed during a TURB. Unlike breast cancer, for example, where CIS is not really considered serious CIS in the bladder is ALWAYS high grade and fast growing and spreading. It is totally different in all respects from the kind found in the breast. Fortunately for many patients BCG, the treatment of choice for high grade non-invasive bladder cancer, can be curative.

Hope this helps.

If you will go to our home page and click on About Bladder Cancer it will take you to a page that has a box labelled FACTS. There is a glossary there that you can use to find (brief) definitions of a lot of the terms used.

https://bladdercancersupport.org/resources/glossary-of-terms.html

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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1 month 2 weeks ago #58085 by leelee
Hi Cynthia. I have just now read your message! We went back to school yesterday and I have been busy again. THANK YOU for the detailed response, you have no idea how much you have helped me and how much I appreciate what you are doing!!! I will allow all this to sink in and within a very short time I will be ready to move forward with my plan of action.
Btw, what is TCC and CIS exactly? I don't know.. ( I am still learning).
You have had the Indiana Pouch since 2004?
LeeLee

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1 month 2 weeks ago #58072 by Cynthia
Lee lee, Sorry I didn’t get to this last night but it was crazy when I got home. But if it makes you feel better I have gone to sleep two nights in a row with you on my mind.
Let me give you some back round for what is a long story I will leave out the drama as I am sure you can fill in the blanks. In 2004 at 48 I was dxed with T2b high grade TCC and CIS my local Urologist who did three to five RC’s a year had me scheduled for an RC with external appliance before even discussing it with me. I had already made an appointment with the team that pioneered the bladder sparing protocol at MA General. You see like you I was terrified, there had to be a better way I would rather have died than lose my bladder.....yada, yada, yada..... I was told I was the perfect candidate and off we went 40 trips to radiation and 20 to chemo, I lost my hair twice, went into menopause and had a lot of tests procedures and multiple TURB’s. I started in the fall and ended in the late spring. By August I was bleeding heavily and had another TURB and it was black this time they tried BCG during the BCG I formed new tumors at that time I had to make a decision it was going to be my bladder or my life. It ends up when push comes to shove your bladder is a small price to pay for the rest of your life. I buried my Father at 10am and went into surgery the following morning at 6am for a radical cystectomy.
Now before I say what I will in this paragraph let me prefix this with the fact I do think there is a place for bladder preservation in select cases, particularly people who can not tolerate an RC. I have known other people who have been through the protocol and only one who retained their bladder long term. Where as this is not a scientific study I have never found statistics based on long term results they are mostly on who made it through the protocol itself not on the years that come after. The one thing we all have in common is the damage the radiation has done long term. If I have one regret it is the radiation, they health problems I have are not related to the RC they are related to the radiation and extensive chemo. In my case that is intestinal and stomach problems and the due to the radiation I had a bleed of the lower spine that caused nerve damage in my left leg and hip. Even after years of physical therapy due to this I can not walk longer than a block or two without my hip muscles going into spasm so I now own a super charged scooter that could win a drag race at the nursing home if need be. Since chemo I have trouble maintaining magnesium and have a who list of drugs I can no longer tolerate. I could go on but you get the idea. Yes it might work but if it does not you may not have a choice of any type of diversion but an external appliance as most Urological surgeons do not feel that it would be advisable due to the damage the radiation has done. I had to move to another city for six weeks to find a surgeon that would even try and know that at the end I might have to revert to an appliance if it didn’t work out. Plus I have now had all the pelvic radiation I could ever have and chemo choices maybe limited due to the agents I have already had if I ever need it.
Having said all that no matter what you chose to do we as a group will support you in your decision. I just hope that you do not find as I did that there are no free rides in this bladder cancer war we all pay dues no matter what our dx is.

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
The following user(s) said Thank You: cltyxx, leelee

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1 month 2 weeks ago #58061 by sara.anne
So sorry to see you here! You do have a lot to consider and it isn't always easy.

I have not been in the position where I needed to consider radical cystectomy, but I do know how I will react should I find myself there. I would get rid of the bladder as fast as I could. IMHO too many people seem to be fonder of their bladder than their life! And I would want it gone before it could spread.

Radiation has not been the most successful treatment for bladder cancer and the effects of radiation can make subsequent surgeries much more difficult. As for chemo, it is often used PRIOR to a radical cystectomy to reduce the tumor load before surgery. It is also used AFTER radical cystectomy in the hope that any stray cancer will be caught before it spreads. I am not aware of chemotherapy being effective as a primary treatment for invasive bladder cancer.

I know many people who have had their bladder removed and they live very comfortable and almost completely normal lives. We have one member who is a race car driver and several who enjoy scuba diving. It would be a lie to say that the surgery is easy and there is a relatively long recovery and "retraining" time. But you can and will adapt and go on with a satisfying life.

Think about it.

Sara Anne

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

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