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my mom has bladder cancer

3 years 10 months ago #49982 by sara.anne
Hello, again, Marybeth!!

You have picked probably the best of the best for a second opinion, and Yale is not "chopped liver" either! You might discuss the clinical trial options with them also.

I only know of one person here who was in a clinical trial, but will be interested to see what information turns up here on the Forum. Bladder cancer has not, unfortunately, been at the top of the list for research.

Be assured that you are doing absolutely the right thing for your mother, and either of your choices would be super for a second opinion. Try to relax (hard I know) and share this holiday of thanksgiving with your family.

Sara Anne.

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

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3 years 10 months ago #49981 by xMbx
Thank you for your response and some questions to ask. It's hard to think of those questions when you receive the initial shock of what you are really up against. This is a new venture for us. We are located in CT. She is currently at Yale New Haven Hospital with Dr. Hurwitz? (excuse my spelling). They have offered 4 different immunotherapy trials for her. They said they first have to see if she is eligible for certain ones as far as if her cancer carries a certain characteristic. From my understanding we are hoping for a cure/remission but are more looking towards prolonging if we can't cure. I question some of these trials because one offered was 3 weeks out of the month she would need to get a treatment and one week off for the rest of her life. It doesn't really sound like one of the better options. I hope others can share some experiences with trials they have done or not and why they did or did not like them and what was the result. My mother is willing to try some but ultimately she does not want to be turned into a guinea pig and I can't blame her for that. We are willing to travel where we need to, to get her to the best place. We have currently contacted Dana Farber and Sloan Kettering for possible second opinions but again I am very open to suggestions. I will be reading through the link you posted for information. Again any help is very appreciated.

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3 years 10 months ago - 3 years 10 months ago #49978 by sara.anne
Oh Mary Beth, so sorry to hear about your mother!! She is very fortunate to have you in her corner.

Where are you located geographically? And where is she being treated currently? Some of our members may be able to chime in with suggestions for a second opinion.
You will want to be sure that she is being treated at a center that treats a LOT of bladder cancer patients and therefore is familiar with relatively unusual cases such as your mother's. Many urologists see mostly prostate cancers, not bladder cancer. A university medical center or an NIH cancer center is often a good start.

On our Home page, at the very top, click on HELP and you will find a list which includes "Treatment Center Finder."
http://bladdercancersupport.org/bladder-cancer-help/resources/treatment-center-finder

As for Clinical Trials, there are good ones and then some that I, personally, feel are not so good. Questions to consider:
Who is sponsoring this trial?
What, exactly, is the goal of the trial?
What evidence is there that the approach taken in the trial is BETTER than currently available therapies? Different is not always better.
Is there a GOOD reason to believe that a currently available and tested treatment would not be successful?

Some clinical trials are really at the frontier of treatment and may offer exciting alternatives to current treatment. However, many are sort of "me too"
where there is a slight modification of a current drug or treatment. If you are at a really good medical center, that is the first criteria.

Wishing you and your mother the very best....

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: xMbx

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3 years 10 months ago #49975 by xMbx
Hi my name is Marybeth. Back in february of this year my mom who is 52 was diagnosed with bladder cancer. The tumor was removed and then came back faster then they have seen (less then 2months). They removed the tumor again and She has undergone chemo and was scheduled for surgery to remove the bladder & have a hysterectomy. They have now found the cancer has moved into a lymph node behind her hip. We have been given options of clinical trials to help control/fight tha cancer. We are currently looking at other hospitals for a 2nd opinion and possibly other options. There was never a moment of doubt we were going to win and I believe we still can it will just be a harder fight. I am hoping that others with experience can help. Where did you find most helpful as far as cancer center doctors? What options did you choose if past the chemo option? Does anyone have experience with the clinical trials? Any information and help is very appreciated. Thank you in advance.

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