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My dad was just diagnosed with

3 years 9 months ago - 3 years 9 months ago #48469 by Cynthia
I had my surgery in May and was dancing disco at a friends wedding in August. I have not heard of a difference in male vs female recovery, it is more dependent on physical condition prior. As for chemo prior to surgery it is usually 4-8 trips to infusion but you will need to ask. If you decide on bladder removal with pre surgery chemo, radiation is not normally used. I have heard of Radical Cystectomy for stage2 without chemo but have read that there is good research that show a survival advantage with the chemo. Again ask the doctors these questions and get all your facts so that your family can make an informed decision. Hope this helps.

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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3 years 9 months ago #48468 by inscarolina80
How long did it take you to be at full strength after your surgery to remove your bladder? Is this surgery harder on a woman than a man? I thought doctors usually do three months of chemo prior to the removal of a bladder? Have you heard were they just removed the bladder, prostate and lymph nodes without chemo and radiation? Thank you for talking to me it is very therapeutic to talk to someone that has gone through this.

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3 years 9 months ago #48467 by Cynthia
At 49 I had my bladder removed following a clinical trial using radiation and chemotherapy. Dr. Gary Steinberg of the University of Chicago who specializes in urinary reconstruction following pelvic radiation did the surgery. So it can be done, now the question should it be done? The answer to that would be not ideally. The radiation has a negative effect on the tissue and healing from surgery can be more complicated. And because of the radiation I have had other long term complications. The chemo radiation regime is not an easy one on the body and to go through it and have it fail is devastating the chemo radiation resume consisted of 40 trips to radiation and 20 to infusion. So make sure you ask questions about what they are proposing. The radiation itself did such damage to my bladder that I was incontinant at the time of my RC . I chose to try to save my bladder but in hind sight I should have just started where I ended up. The Radical Cystectomy is of course not easy and the adjustment after takes time, but if your father is able to have the surgery it might provide him with the best chance at progression free survival. This is of course just my personal experience but I hope my sharing it helps.

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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3 years 9 months ago #48466 by inscarolina80
The doctors here only gave us two options which were they removal of the bladder or chemo and radiation. They told us if we do chemo and radiation and a tumor shows back up in the bladder that they cannot remove the bladder because you cannot remove a bladder that has had radiation done on it.

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3 years 9 months ago #48465 by inscarolina80
I just wanted to give y'all a update the doctors now think it is transitional cell cancer which is the most common the CT scan of his lungs came back negative so they do not think it has metastasize.

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3 years 9 months ago #48364 by Cynthia
As you already know your Dad has a rather rare type of bladder cancer so it is hard to give hard statistics. I do not know where he is being treated but would suggest somewhere they deal with a high volume of bladder cancer. I would assume from your user name you are from South Carolina so I will give you this link I hope this helps.

http://www.muschealth.com/cancer/cancer_treatment_services/genitourinarycancer/index.htm

Please keep us updated we do care.

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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