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)

Timeline of Trouble (in reverse order)

• Upcoming appointments: pelvic xray on my way home from Lake County, at Geary. 
• Solitary retreat Dec 22-27 - yay! 
• December 22 - Notes from conversation w Dr Catherine Powell [backup while Dr Littell is on vacation]: 
  • The tumor cells in the urine mean just that the cells are around, does not mean the cancer has traveled to the bladder. 
  • PET scan – doesn't show another origin; this test is not very specific – did light up pelvic bone near tumor – could just be mass itself. Should get xrays just in case. (CAT scan didn't show anything in bones.) 
  • Chemo usually starts 1-2 weeks after initial consult. Yes, usually gets worse/more tired cumulatively. 
  • Is the tumor growing fast? She said if there was no sign of it in May and it's 5cm now, that's pretty fast!
• December 21 - Went with Padmatara to a 2-hour chemotherapy class a Kaiser. Very helpful. Got this note from the Dr Thomas, the urologist, "The cytology report does show tumor cells in the urine as expected. You should talk to Dr. Littell about this and about the PET-CT when those results are available."
• December 20 - PET scan (Positron Emission Tomography) in Santa Clara. They shoot you up with radioactive sugar (a quote from the nurse who explained it to me), leave you lying down in a dark room for about an hour, then spend about 20 minutes in a CT scan like machine which is a lot more sensitive. it finds areas of sugar or intense metabolic activity.
• December 19 - Cystoscopy ('cyst', at least in this case, means bladder) with excellent urologist Dr Thomas. Procedure sometimes causes infection so was given antibiotics. After taking first one, broke out in super itchy hives. note to self: allergic to sulfa drugs.
• December 16 - Meet with lovely ObGyn oncologist, Dr Ramey Littell. "Tell me everything" was my approach. Pals Julie and Padmatara came with me to this and subsequent appointments. Dr Littell ordered various tests to ensure that the vagina is the primary cancer. 
• December 6 - Poking around online in my info at Kaiser, happen to look under 'Ongoing conditions" and find out I have cancer! Diagnosis dated November 21. (I did write a letter to kaiser...)
• December 5 - After the last test, I thought they did not have a real diagnosis and started seeing an acupuncturist, who asked for medical records.
• November 4 - Made a same-day appointment at Kaiser with a new (available) doctor. Had many more subsequent appointments - which included a vaginal biopsy, a uterine biopsy, an ultrasound, and a CT Scan. The doctor didn't tell me that I have cancer, or at least not in a way that I got it. Looking back on it, it was all rather obvious, but since i figured I'd be the last person on earth to get cancer, I really needed to hear that word in order to understand. He said he didn't want to alarm me. Yet being alarmed is...appropriate!
• October 3 - I start my period, but it didn't stop - for weeks and weeks. Also was experiencing a lot of fatigue.
• May 6 - Normal annual exam. Perimenopause ongoingly problematic, but not unusual (frequent periods, fatigue, depression, possibly anemia.)