Padcev

7 months 4 weeks ago - 7 months 4 weeks ago #61009 by Alan
Replied by Alan on topic Padcev
Partial cystectomies are rarely done. There have been a few people on this board who have done it but, it was under special circumstances. Something tells me to get to a top Cancer center..... a teaching university or someone like Sloan Kettering, MD Anderson etc. I see you went to a cancer group in Louisiana. Is MD Anderson doable in Houston?

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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7 months 4 weeks ago #61008 by tomk
Replied by tomk on topic Padcev
Thank you Alan for your response, it's great to feel like I have somewhere to voice my concerns. 
Sorry about the unfamiliar acronym, LVEF stands for left ventricular ejection fraction. Mine is low due to a heart attack in the past.

I actually did get a second opinion from City of Hope in LA. They recommended a radical cystectomy followed by adjuvant nivolumab once a month for 12 months because of the LVEF concern. My local Docs recommended 4 three week cycles on GC followed by a partial cystectomy as the 5cm tumor is on the dome of the bladder. Hopefully this clarifies my situation.

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7 months 4 weeks ago - 7 months 4 weeks ago #61007 by Alan
Replied by Alan on topic Padcev
Welcome Tomk,

As none of us are doctors and your LVEF abbreviation (I had to look that up), your case is a little more complicated. Involving "ejection fraction" or pumping of the blood from your heart, that number does appear to be low to me as I have also had a triple bypass as my doc introduced me to that reading...I am lucky at 60. Your oncologist should be up speed on this however, I would probably get a second opinion for fresh eyes and peace of mind if you have any doubts.

One other observation. Is he recommending chemo alone or with a cystectomy? Chemo is usually done along with that procedure after the chemo is finished on stage 2 (T2) or higher tumors.

Please keep posting as you go. Others will learn from this.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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7 months 4 weeks ago #61006 by tomk
Padcev was created by tomk
I have been diagnosed with High grade invasive urothelial carcinoma stage pT2a. GC is the recommended chemo therapy, but one of the cautions/contraindications is a LVEF of less than 50% and mine is 35-40%. What is the risk? What are the alternatives? My oncologist doesn't seem too concerned, should he be?

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