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Old 11-05-2011, 10:47 PM   #13
nannaluvsu nannaluvsu is offline
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Post Re: I have a 13 cm mass

Hello Kidneymass
It was so strange to find your thread. My husband too was diagnosed with a rare form of renal cell carcinoma - called Chromophobe Renal Cell Carcinoma. We were told that this form of cancer is so rare - only (1%) of the WORLD population have ever been diagnosed with this form. It is caused by not having chomosome 17 in your genes. It was told that they have been unable to do any research on this type due to being unable to find enough people with it to complete a study.
He was diagnosed in late May of this year; and was also told his tumor in the right kidney was the size of a football. In one of his reports before his surgery, the report read that the mass was 12.3 cm anterior posterior (front to back) X 10 cm side to side X 14.2 cm superior inferior (top to bottom). He had his surgery in mid-June to have his nephrectomy completed. However, he was lucky enough to have a doctor that allowed him the pain medications to keep him comfortable.
Unfortunately, we were not lucky enough to say they got all of his. However, they did say this is a very slow growing form from what they know of it. He has recently begun chemo treatment using the Terisol. He has had three treatments so far; and is going through them well - with the only real side effect being extreme fatigue the day of the treatment brought on by some of the pre-meds given before the actual Terisol is given. He will have to do these treatments once weekly for the remainder of his life - or so we've been told.

Then I read about your issues getting your FMLA for your employer. BOY - that sounds like the issues I had getting them from my employer for being there for my husband.

WOW! Sooo many likeness!! It was very odd to read your story!! Almost like reading ours lifes story!

Anyway - just wanted to share - and say congratulations on getting through yours so well. Please feel free to contact at any time - as we would really enjoy hearing from you.