Otherwise known as, "What I did for my summer vacation." Seems I may be spending most of August and half of September in Houston.
All of the doctors (including soft tissue tumor radiologists, pathologists, medical oncologists, radiation oncologists, and surgical specialists in soft tissue tumors) at the tumor board yesterday agreed that radiation was my best chance for success in ridding myself of this tumor in the least damaging way possible. Today I met with the radiation oncologist, Dr. Gunar Zagars, and here are the highlights of our conversation:
There is a 75-85% chance of getting rid of the tumor entirely with radiation. If there is any left at such time as it stops shrinking, then we can consider surgery to remove what is left. That could be years away however. He cited one patient who, 28 years later, is still experiencing shrinkage with her desmoid. To accomplish this, he is recommending 6 weeks of radiation, 28 treatments, every day from M-F, with each appointment lasting 30 minutes start to finish. The first 4 weeks of treatment I probably won't experience many side effects but in the last two weeks I will probably have some inflammation of my rectum (so, diarrhea) , vagina (bleeding and dryness) and bladder (frequent urination), which should all go away once radiation stops. Long term effects are that my ovaries will take a hit and I will pretty much go into early menopause. He said there are hormonal treatments to counteract the side effects of menopause but that desmoids are very negatively affected by hormones so I need to be carefully monitored if I choose to take them. He was nice enough to point out that, in his experience, no one has ever died of desmoids. So, yay for that!
The actual procedure is called IMRT or Intensity Modulated Radiation Therapy. The link will take you to a pretty cool video about it as well as a short written description of the process. Basically they use higher doses of radiation causing less damage using computer-generated images to tailor both the dose and the target area. My first meeting would be a planning session where I have a mold made to fit my body so I would be in the same position every day. They would then take CT scans which will generate images of my tumor so the computer can aid in mapping the target area and dosage requirements. This type of radiation therapy is highly advanced and minimizes the amount of radiation my other tissues and organs would be exposed to, unlike traditional radiation treatments.
As I said in yesterday's post, it could take 6-12 months before the MRI will show shrinkage (you're welcome Spiff). I will need MRIs every 6 months for a few years and then once per year thereafter.
We tentatively set up my start date to be August 6. That gives me time
to meet with my oncologist back at Northwestern (on July 13) and with
Dr. Block at the Integrative Cancer Center (on June 26) to review these findings. I'm feeling pretty confident though, that this is the correct route to take.
Speaking of yesterday's post, I got a comment from a reader who turns out to be in communications at MDA (hi Lucy--yes, she shares my daughter's name). She found my blog as part of her job (trolling social media sites for mentions of MDA--much like when a certain cable company contacted me when I was complaining about our lack of service). Actually, Len used to work in PR as well (and social media in particular) so I was not surprised that someone at MDA had found me. A nice surprise, though, was meeting Lucy today for lunch to find out she had become rather invested in our story! We spent quite a long time chatting over lunch and she was very helpful with printed resources for me to look over, even offering more assistance should I decide to have treatment here. It's nice to have another contact here in Houston.
Which brings my number of people in Houston to three! In addition to Paivi and her husband Euan, one of my old design studio buddies from LSU lives here as well. I honestly had not seen her since we graduated so it was a fabulous surprise to get a FB message from her to meet for supper. We met up last night and headed to a wonderful Indian place in Rice Village.