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4/8/2016 Latest post:
I apologize for not calling all of you, and that you are reading this rather than haring it from me personally. I went to the Dr. for a checkup in Feb. My Doctor ran down my chart and ordered some labs and a CT scan to check on my clogged lymph node in my stomach they saw in July 2014. She called me on Feb 12 to tell me that my CT report showed that my clogged lymph node wasn't that at all and she ordered a new CT scan with contrast. The report on the second CT scan showed that I have an irregular shaped tumor on the outside of my left kidney that the mass has doubled in the last 16 months. She referred me to a Urologist. I saw him on Feb 24, while at this visit he told me that he was unable to help me, that he was referring me to the Specialty Urologist surgeon in Santa Rosa. That he felt that I have a 30/70% chance that this was a cancerous tumor. I called from the parking lot and got the next available time. March 17. After several phone calls and a lot of emails they moved my appointment to March 7.
After meeting with Dr. Barrisford, he tells me that my only option is to have surgery. Due to the location and the fact that we had the CT scan from 2014 with the "enlarged lymph node" we know what it is doing....growing! He said that he felt I had an 80-90% chance this was cancer. That the normal options for kidney cancer are not available due to the location, and that kidney cancer doesn't respond well to radiation or chemo. I asked if this couldbe a desmoid tumor. He said he doesn’t know much about FAP (Familial adenomatous polyposis), that he would welcome any information I could get him and the other surgeon.
Thanks to myAunt Rene’s help and contacts. The two surgeons are talking to Dr. Gruber, he is the Director at the USC Norris Cancer Center in LA. Desmoids are not normally cancerous, but they do cause problems. They send out roots that wrap around whatever they can get a hold on. Due to the rarity of these neither surgeon has knowingly seen a desmoid or removed one.
Dr Barrisford says a full recovery is expected. That this should happen in 6-12months. He thinks I will be in the hospital for 4-7 days.
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