Radiation Oncologist - Dec 29, 2011

Julie and I spent quite a lot of time with Radiation oncologist Milan Patel in South San Francisco. He let us know that the PET scan and pelvic xray I got showed cancer in my pelvic bone - next to the tumor. He called it sclerosis, which apparently means scarring. It was also in 1 lymph node. When cancer is in the bone, the staging changes to Stage 4. They have found 'no distant disease' which is the usual case with Stage 4 cancers.

The way the oncologist put it was that they can't cure cancer in the bone, so they start thinking in terms of 'control' rather than cure...it's not possible to give enough radiation to bone. So they try to take away pain and protect the bone. He did say that my general health is very good and that is a very positive factor, and that there were no fractures or holes in the bone (the worst case scenario.) The penetration into the bone seems to be minor.

He said the cancer was probably there when I had my last exam in May - but was not big enough to feel in a pelvic exam - and pap smears test for for cervical cancer only. 

We were there for a couple of hours, and I did get a chance to ask the oncologist - even though I knew he probably wouldn't have an answer - why this has happened. He said, "bad luck." He pointed out how extremely rare my condition is, and that nothing my family history would ever point to this happening. 

In general I am doing fairly well mentally, and am not in physical pain...was greatly helped by a solitary retreat up in Lake County which was wonderful. 

Will likely be 28 treatments of external radiation (each session is short, 10 or 20 minutes). Next step is to get another CT scan so they can put little dot tattoos on me to start mapping out where the radiation is going to go. At first they were saying chemo is done to enhance the effect of the radiation. That is no longer the case - chemo is primary since  the chance of cancer cells being elsewhere in the body is very high. There might be more chemo and/or internal radiation treatment after the end of the external radiation.

Effects of radiation take 2-3 weeks to kick in, and lasts 2-3 weeks after radiation stops. 

Possible short term side effects of radiation - UTI infection, diarrhea, stinging urination, skin reactions (burning). Longer term: 15% chance of urethra blockage - can be corrected. Bladder repairs self. Mild edema 20% chance. Radiation itself can cause new tumors (this takes 12 years.)  In addition, I will go through menopause within 6 months after treatment. 

Next appointments with oncologists:

January 2 in Santa Clara (might have internal radiation at end, this is to prepare for that)

January 3 in San Francisco (chemo doctor)

January 4 in South San Francisco (CT scan prep for radiation)