I met today with Dr. John Hayes, a radiation oncologist, at Northwestern. To recap briefly: the two oncologists I met with at Northwestern recommended systemic therapy in the form of the drug Gleevec. The two oncologists I met with at MD Anderson recommended IMRT, a focused form of radiation. Both hospitals presented my case at a tumor board which meant that many different oncologists from various specialties had the chance to weigh in on what treatment protocol to recommend. Needless to say, I have been more than a little confused about which way to proceed with such differing opinions.
My purpose in meeting with Dr. Hayes was to find out why radiation was not recommended by the team at Northwestern. Guess what? He DOES recommend radiation and is not sure why it was not recommended initially. Turns out he was not present at my particular case presentation but based on his review of my files, he unequivocally did not recommend that I take the drugs, that desmoids are most typically treated with radiation.
Here was his response to my other questions:
Lisa: What are the side effects of radiation?
Dr: Severe burning, like a very bad sunburn, of the skin inside the vagina, bladder, urethra, rectum and anus. This will heal several weeks after radiation is stopped. There will be some contribution to the risk of early menopause, meaning there could be no effect or there could be more drastic effects like hot flashes, dryness, etc. (the typical symptoms of menopause). Since the ovaries are not directly in the line of fire from the radiation, they will receive scatter radiation instead of absorbing a direct hit.
Lisa: I understand that radiation will increase my risk of developing other cancers like bone, uterine, colon, etc.
Dr.: The total risk over time of other cancers is no more than 1%. The benefit-to-risk ratio is very good with this type of radiation. There is a 70-80% efficacy rate using IMRT on desmoids.
Lisa: Since desmoids don't typically respond like other cancers when exposed to radiation (most tumors start to shrink immediately; desmoids may not respond for 6-12 months), how am I not walking around emitting radiation once treatment is over? How is it able to still affect the tumor that many months/years later?
Dr.: Radiation damages the DNA but only expresses the lethal damage when the cells try to grow or divide. With such slow growing tumors, the cells are not as active and could be dormant for a long time. But when they do finally try to grow, the damage will have already been done.
Lisa: What experience do you have with treating patients with this type of cancer?
Dr.: I currently have 2 patients receiving IMRT here.
(This is where MD Anderson has a huge edge--they treat many times that number of patients with my particular cancer.)
He offered to pull up my scans so we could take a look. I snapped a picture of the best view with my phone:
The [P] is my, ahem, anus and rectum (never thought I would be showing my hiney on the internet...don't look Mom!). Up from there is my bladder. To the left and right are my Internal Obturator muscles. Normal muscles look like the one on the left, a big U shape. Notice that the muscle on the right is elongated and then is morphed into a large shape (where the arrow is pointing). That is the tumor. You can clearly see that my bladder is being pushed over toward the left as is my urethra and my vaginal canal (that is the slight V shape located right below the words urethra and vagina). The V shape should be perfectly in the middle of the scan but the tumor is pushing it seriously over to the left.
On a side note: I'm sure I'll have great fun in the next few days checking the hits to my site by people looking for more colorful photos of vaginas....
Over time, if the tumor continues to grow, there will be some serious repercussions to my quality of life. With that said, he supported my initial decision which is this:
I have scheduled a repeat MRI to be done December 7. That will be 6 months from my previous MRI. He will compare the scans and we will meet to discuss the results the following week. From there, I will decide if radiation makes sense or if watchful waiting is the better option. In the meantime, I am still trying hard to make significant changes to my diet and lifestyle to see if that has any effect on things.
As for the ultrasound scans that I requested from my infertility treatment and from Kate's pregnancy, I am still waiting for those to be released. Dr. Hayes did say that he doesn't think that anything will show up as even with a transvaginal ultrasound, they don't really start snapping photos until the wand is up past the cervix. Since my tumor is located much lower in the canal the odds are slim that much will come of it.