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Any suggestions for change in diet, supplements, second opinions, next step?

LLL
Posts: 1
Joined: May 2009

Family member has had numerous surgeries for removal of cancerous bladder tumors...had severe reaction to BCG and severe reaction to drugs to treat the BCG reaction, and chemo drugs for 8 weeks....all in the last 18 months and is complicated by cardiac issues...Tumors came back again and were removed last month (8th removeal in 18 month period) and plan seems to be to continue to view every three months and surgery if more found....Urologist suggested we get a second opinion and/or obtain more info through NCI when asked what he would do if patient was his spouse...Sloan Kettering was discussed and he is trying to make contact...Removal of bladder is not an option at this time due to cardiac health....Feeling overwhelmed with continued anxiety and urgency to learn of options before in need of another surgery....Any suggestions for most knowledgeable and experienced Oncologist/Urologist for bladder cancer? Supplements? Diet changes? Next Step?

CynthiaA's picture
CynthiaA
Posts: 26
Joined: Feb 2004

I was dx'd with Papillary Transitional Cell Carcinoma of the Bladder in 1996 and went through the same experiences as your family member...surgery, extremely bad reaction to BCG with drugs to help me recover. My tumors came back abt every 2 mos for a couple years and received chemo in 2000. My plan was to continue check-up's and tumor removal when found. It is now 2009 and I am still following the same regimen. The chemo I was given was Mytomycin-C administered 'intravesically.'(the same way the BCG was) Removal of my bladder has never been an option by personal choice. It has been 13 years and I am still around as a cancer survivor! It has been a perfect plan for keeping my bladder, and I have other physical challenges too. I hope my story will be helpful, and incouraging. PS, I have had 7 different primary site cancers with no mets, and am a 20 year survivor since that first dx in 1989. CA

vacation
Posts: 1
Joined: Jun 2009

I was recently diagnosed with Papillary Transitional Cell Carcinoma of the bladder ( June 2009)and underwent surgery to remove cancer and had initial chemo after surgery with Mytomycin. The tumor did not invade the muscle. My urologist in our medium sized town wants me to have six weeks of treatment with Mytomycin starting next week and I have not a chance to get a second opinion from someone at Moffitt in Tampa or at MD Anderson in Orlando. I am worried that I am being rushed into this without a second opinion.

I am quite overwhelmed by all of this as it all happened so fast and I felt so bad when I came home the hospital. Thank you for your note above, it was the first encouraging words I have heard about this type of cancer treatment. Do you have any advice for me regarding this treatment.

CynthiaA's picture
CynthiaA
Posts: 26
Joined: Feb 2004

I would never discourage someone from getting a second opinion...did you get one before you had your surgery? I did change Urologists after the BCG option was ruled out. My new Uro Doc would just check for new growth every 3 mos and it was a while before I needed to be put on an 8 week regimen of Mytomycin-C. It was inconvenient but didn't have the side effects (hairloss, severe nausea) that intravenous (IV) chemo causes, and as I mentioned it was done right in my Urologist's office. I wouldn't want to postpone getting follow-up treatment too long because I think you mentioned that it was caught early and the chemo could just do the trick to keep it from ever coming back. It is up to you to control how you want your cancer care to be done. I was very fortunate to have an excellent Urologist who I credit with still keeping me alive to this day. My best to you on your rapid recovery CynthiaA

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