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where do I go after diagnosis

5 years 8 months ago #48748 by GKLINE
Sara Ann has the perfect answer for you. I too, am so sorry to read your post. Your husband is lucky to have such a caring and compassionate partner at his side at this stage.
My family brought in Hospice care for my mother, and we have only one thought about it, "Why didn't we bring them in sooner? They are wonderful."

Second opinion..... Absolutely.
But metastic bladder cancer is a cruel thing.

My heart breaks for you


Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
New Man! [/size]

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5 years 8 months ago #48744 by sara.anne
I am so sorry to read your post. This is so difficult and your husband is fortunate to have you by his side.

If you are seeking a second opinion on treatment options, you need to get it at a center that treats LOTS of bladder cancer patients...such as MD Anderson, Memorial Sloan Kettering, or Johns Hopkins. If there is anything available, these places would be the ones to know about it.

Metastatic bladder cancer is not, as you are aware, good news. It is only natural that you are having a difficult time dealing with this, and it is not a weakness!! You are only human and it is perfectly normal to feel the way that you do.

Should you, and the doctors, feel that your husband is approaching the end of the road, please consider asking for Hospice care as soon as possible. They are wonderful to have by your side and can be a great help and comfort to you as well as to your husband.

My heart goes out to you.

Sara Anne

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

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5 years 8 months ago #48743 by sonnab
My husband has metastatic transitional cell cancer and it is already in his lungs. He has had one kidney removed so we were told he has limited chemo options and that there are no clinical trials available. I'm having a terrible time facing this and I admit to this weakness. When I search for treatments there doesn't seem to be much out there and we are left with no hope and with not having any idea how to proceed. I have realized a second opinion is called for and I have made an appointment. Can anyone guide me? Is there hope or is it as the doctor hinted something there is no treatment for.
Also my husband is experiencing multiple side effects from Carboplatin and Gemcitabine even though he was told there would only be some discomfort. Is this just the way it is for some people? I will appreciate your help.

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