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7 years 1 month ago #45434 by sara.anne
Nancy, there are others who can chime in about the recovery and life after surgery. But I want to assure you that waiting a couple of weeks to get your evaluation at SK will not cause a problem. Once the situation is found, you DO want to get going on removing the cancer and heading towards recovery, but that "beast" has been there for a long time so a little delay won't hurt. If it were a period of several months, that would be different.

This is important surgery and you do not want to rush into anything unless you are sure where you are going!!

Sara Anne

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

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7 years 1 month ago #45433 by Nancylhm
WOW 8 years is a long time. May I ask how you felt at the time? I am just the spouse, but feel like this is the end. Is this normal to feel this way? We are going for a second opinion at Sloan to see what they say. I feel that doing this we are delaying the surgery and our surgeon wants to get it done as soon as possible to stop it. How long did it take after surgery did you feel like yourself again.? I have heard varying stories of people take almost a year before they resumed normal activity and feeling like themselves. I don't think my husband could survive without going back to work and travel. He is what you would call a workaholic. I think him staying home for a year would kill him faster than themcancer would. How did you feel after and I know there is recuperation time of 4-6 weeks, but a year is rather long. Is this normal for me to feel this way ?

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7 years 1 month ago #45430 by Cynthia
A good place for a second opinion is Sloan Kettering you will find a link to it in our treatment finder that will give you the contact information. It is one of the top places in the US for bladder cancer.


You will much more once you have the pathology report back once the Radical Cystectomy is perfumed. Some of your questions can not be answered until you have a grade and stage for what you are dealing with.

I had my Radical Cystectomy 8 years ago and I plan to live a normal lifespan. I travel, swim, snorkel and dance. I have known long distance runners and race car drivers that have continued after their surgeries as well. No one can make any promises but for most Radical Cystectomy is defiantly a bump in the road but doable.

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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7 years 1 month ago #45429 by Nancylhm
We live in the New Hyde Park, New York area and would like to consider a second opinion. Our doctor was anxious to get the surgery done to avoid it spreading any further. It went pretty fast from only the last 5 months being clear to it spread to the ureter, again the bladder but not the muscle wall and they are removing the prostate as a precaution. Any suggestions would be greatly appreciated. What is the longevity of a persons life after surgery and what about restrictions for travel etc.?

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7 years 1 month ago #45428 by sara.anne
Nancy, I moved your post to its very own topic. Your husband's issues ARE very similar to Jack's, but some of your questions and issues probably deserve their own discussion.

I am very sorry that you had to join us....although we are a great group!! You and your husband have a steep learning curve ahead. First, with something as important as cystectomy (bladder removal) it is usually a very good idea to get a second opinion. There are a number of options for pre-treatment, the type of diversion, and the after-surgery course. Pt is important to be sure that you are getting absolutely the best medical advice possible. In fact, my urologist told me that if we every faced this (which so far we haven't) that he would INSIST on my getting a second opinion.

Did the urologist explain why he felt that the external bag was the best option? Often if people are quite elderly or have serious other medical conditions, this is the best option. In other cases, the patient has a choice.

Whatever diversion your husband decides on, he needs to find a urological surgeon who does a great many of these each year. Research has shown that the more a physician does, the better his outcome record is.

If you can seek a second opinion and an evaluation of your husband's case, that is what you should seriously consider before going any further. His current doctor should have no problem with this...it is good medical practice. The best result of a second opinion is that it will confirm the initial diagnosis and recommendations. It might provide additional options for you to consider. And, if it turns out that the current situation is not the best, you need to know this NOW rather than later.

If you are interested in a second opinion, and are wondering where to go for one, let us know where you are located and some of our members may have suggestions for a good place near you.

Wishing you and your husband the best of luck/

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: Nancylhm

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7 years 1 month ago #45427 by Nancylhm
My husband is 61 and diagnosed with bladder cancer. He had 3 treatments 2 with BCG and 1with BCG and interferon . All seemed to be good for abbot 5 months then we got hit with it has spread and he needs to have the bladder removed, prostate removed for safety and several other thing removed. They want to give him an external bag and I just don't know how to deal with this. So many questions and don't know where to begin can anyone help me with this situation?

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