Thursday, October 23, 2008
UPDATE: I took this video as we got off the elevator. Doesn't do the place justice though.
Today I met with my new surgeon and radiation oncologist. I'm still struggling with the fact that I have to go see an oncologist. I really loathe that. Man my shoulders are tense. Ok, I need to regroup. Let's get on with this.
The surgeon appointment went well, I liked him very much- he got my jokes, and almost took me up on my challenge to draw a circle on the Etch-A-Sketch Gray brought to stay occupied.
We discussed the surgery day, now one week away. I'm pretty fine with that whole thing. After he left, the nurse stayed behind so we could talk about him. I like her so much, Chris. We laughed, we talked a little, she said she was going to come see me the morning of my surgery and really, she's got no reason to do that. She's going to come just to see me. That made me feel really cared for and it helps a lot.
Then I went downstairs to the radiation area. Downstairs doesn't do it justice. I descended. Down. And down some more. I passed Dante having a cappucino. Really though it was two levels below ground into the lair. It's blue down there, like the humming blue fuzz of the ground before lightning strikes. Gray and I were immediately off-put. Through the hallways which seemed more like catacombs, we came to the sign-in desk. I walked past a woman in a hospital bed who was obviously very far into her treatment. Or not. Then I stood in line behind a woman who was obviously very far into her chemo treatment, she had no hair. And I was in front of a woman complaining the "machine" was broken yesterday so she didn't have her appointment. And that it was broken this morning too. And last week.
I signed in and was chatting with Gray for a minute before we were called to the exam room- Gray was wearing purple latex gloves that we pilfered from the surgical exam. His sweaty little hands seemed very happy to Etch-A-Sketch.
The radiation oncologist came in quickly and proceeded to talk at me for an eternity. I consider myself a pretty intelligent gal, especially so when discussing all this cancer stuff- I've been reading scientific journals, I've been teaching myself, I'm pretty well-versed in the jargon. Still, I had trouble hanging on to all that he was saying, that's ok, I've got the jist and here it is.
Radiation. (Also called radiotherapy though no part of this seems like "therapy").
The hospital does a 1 week intensive course- you go in twice a day for one week for this targeted radiation. I wanted this version, I could've been ok with this version I think. But I am not offered this version, it's for people 45 and older. Why not me? No reason, I'm just outside the study parameters. The doctor was partially apologetic about it.
I asked about the 3-week course I'd read about in the New York Times. No. They're doing that in Canada, not here. It's not the standard of care that "we're" recommending for you. Why? Just because we don't do that, it's not the standard of care.
So, my only option is a 6-week course of radiation. 30 treatments of high-intensity whole-breast radiation. Not localized which I would have preferred.
What's my problem?
1) Radiation changes the tissue of your breast. Fancy medical talk aside, it changes it forever.
2) Radiation can cause cancer. 1 in 10,000 will develop sarcoma in a 10-20 year follow up study.
3) Radiation is a one-shot deal. If I play this card now and get breast cancer again, this course of treatment is a non-option.
4) Tissue that has been radiated is difficult to reconstruct should I ever require a mastectomy and want implants it's not easy or doable or something, I don't know. It's not the "same".
5) Lots and lots of other scary possibilities- burning of the skin, thickening of the tissue, swelling of the breast that may never go away, blah blah scary stuff.
Well then, maybe I should not have radiation!
1) I will have a slightly higher chance of getting this again
2) I will have to be very highly monitored to make sure cancer is not developing. This means:
Getting mammograms/MRIs/sonograms or whatever every 6 months
The doctor said I will have post-surgery changes in my breast that will be confusing on the diagnostics, meaning I'll continue to be a pin cushion for every shadowy image on every test.
3) I am very very young. I should be doing every single thing I can to make sure this doesn't return.
If I have surgery without radiation, I will have to live in this shadow of doubt every six months for who knows how long.
If I have surgery with radiation and some time down the line cancer returns, my immediate option will only be mastectomy in the radiated breast.
-various trials suggests a small improvement in survival with the addition of radiation to lumpectomy
-In the study that followed women for an average of eight years after lumpectomy with or without radiation, 1.6 percent (14 women out of 814) died of breast cancer. But recurrence rates vary, depending on the treatment, ranging from 1 to 2 percent at 10 years after a mastectomy to 32 percent at 12 years after a lumpectomy alone.
-Gradishar and Dr. Kathy Albain of Loyola University Health System noted that the Lancet overview found a significant increase in second breast cancers, lung cancers and heart attacks in the patients who received radiation
-"In doing this study we wanted to capture outcomes among those women who opted not to undergo radiation."
In women with DCIS low- to intermediate-grade level of risk, (I have intermediate DCIS) the recurrence rates were 6.1% in the ipsilateral breast and 3.7% in the contralateral breast after 5 years, said Dr. Hughes."I think we can say that if these women would have had radiation, these rates would have been halved," she said. "Numerous clinical trials have shown that radiation decreases the risk of recurrence by about 50%."
"I think that a 6.1% recurrence rate is acceptable," Dr. Hughes said.
I can't help but wonder about the women who had recurrances. What were their life styles like? Did they have the BRCA gene? Did they smoke? Did they exercise? Did they do all the healthy things that I'm doing and will continue to do? How much of recurrance data tracks that? I can't find any.
This decision is immense. And intense. And I'm petrified. Ten times today I was sure of doing the radiation. And then I was sure of not doing it.
Posted by Jenni at 8:36 PM