We're Off to See the Wizard
First thing tomorrow, Zach and I are heading to the Emerald City (OK, Boston) to see the wizard (OK, a radiation oncology guru) for a third opinion as to whether or not I should have a second course of radiation treatment.
Generally speaking, radiation treatment for a specific part of the body is a once-and-for-all thing—there's not a lot of repeat business. In fact, when I went through radiation five years ago, I'm pretty sure I was told that there was no repeat business.
Turns out there are exceptions to that general rule.
I'm starting to think I should change my name to Jody "Exception" Knower. Or Jody "Asterisk" Knower. Or maybe Jody "Fine Print" Knower.
You see, it's also generally true that you don't treat a breast-cancer patient with radiation if she's had a mastectomy. Surgery and radiation are both "local control" treatments (unlike chemotherapy, which is a systemic treatment). Since a mastectomy removes virtually all breast tissue, radiation is not typically indicated unless the patient has a large tumor or more than a certain number of positive lymph nodes.
Except, you know, in my case.
My original tumor wasn't particularly large (1.5 cm), and I had only two positive lymph nodes (which fell under the threshold). However, the cancer was considered aggressive, I was considered young, and the tumor was situated so close to my chest wall that it was impossible to get widely clear margins. (The margin in my case was less than 1mm—in other words, very small.) Given all of that, the consensus among the two doctors we consulted was that I should have the radiation treatment as an extra measure of insurance. So I did.
And I tolerated it pretty well, all things considered. (Even if I didn't get to finish knitting that scarf.)
So here I am, five years down the road, the exception to another general rule: that the chances of having a second breast cancer after a mastectomy on the same side are south of 2 percent. Less if you factor in the chemotherapy I had. And the radiation. And the four years of Tamoxifen (an estrogen-blocking drug that helps prevent breast cancer and recurrences of breast cancer).
But I digress.
The reason we're getting a third, out-of-state opinion on the question of radiation treatment is that the two opinions we've gotten so far have been completely divergent. And the major difference revolves around the fact that there's a lifetime maximum on the amount of radiation one can (or should) receive.
The first opinion, from my own radiation oncologist, is that while it's rare to re-irradiate someone, doing so would offer me some benefit despite the potentially serious long- and short-term side effects. The hitch is that I couldn't be treated with a full dose of radiation because that would put me over the lifetime maximum. But my doctor feels that she could still give me what she termed a "meaningful" (albeit partial) dose without exceeding that maxiumum. She'd still need to do a lot of measuring and calculating to make sure that she could treat me while sufficiently protecting things like my heart and lungs and brachial plexus (a group of nerves that affect the shoulder, arm, and hand), but she's optimistic on that front. Even so, I'd still be at extremely high risk for lymphedema, and I could, in a worst-case scenario, lose the use of my arm. Makes you want to sign right up, doesn't it?
The second opinion is from a more experienced radiation oncologist at a different hospital—the same doctor who gave us a second opinion five years ago. This doctor (we learned) doesn't believe in partial doses—she's an all-or-nothing kind of gal. Therefore, she recommended—unequivocally—against another round of treatment. We took issue with some of the other things she said (more on that in another post), but I don't think they affected her bottom-line recommendation.
My fantabulous surgeon is predisposed against radiation. My oh-so-wonderful oncologist and the radiation oncologist at his hospital are predisposed in favor of it.
A clear-cut answer does not seem to be in the cards.
Hence the trip to Boston, to see an even-more-experienced radiation oncologist (aka the wizard) at yet another hospital.
Stay tuned.
Generally speaking, radiation treatment for a specific part of the body is a once-and-for-all thing—there's not a lot of repeat business. In fact, when I went through radiation five years ago, I'm pretty sure I was told that there was no repeat business.
Turns out there are exceptions to that general rule.
I'm starting to think I should change my name to Jody "Exception" Knower. Or Jody "Asterisk" Knower. Or maybe Jody "Fine Print" Knower.
You see, it's also generally true that you don't treat a breast-cancer patient with radiation if she's had a mastectomy. Surgery and radiation are both "local control" treatments (unlike chemotherapy, which is a systemic treatment). Since a mastectomy removes virtually all breast tissue, radiation is not typically indicated unless the patient has a large tumor or more than a certain number of positive lymph nodes.
Except, you know, in my case.
My original tumor wasn't particularly large (1.5 cm), and I had only two positive lymph nodes (which fell under the threshold). However, the cancer was considered aggressive, I was considered young, and the tumor was situated so close to my chest wall that it was impossible to get widely clear margins. (The margin in my case was less than 1mm—in other words, very small.) Given all of that, the consensus among the two doctors we consulted was that I should have the radiation treatment as an extra measure of insurance. So I did.
And I tolerated it pretty well, all things considered. (Even if I didn't get to finish knitting that scarf.)
So here I am, five years down the road, the exception to another general rule: that the chances of having a second breast cancer after a mastectomy on the same side are south of 2 percent. Less if you factor in the chemotherapy I had. And the radiation. And the four years of Tamoxifen (an estrogen-blocking drug that helps prevent breast cancer and recurrences of breast cancer).
But I digress.
The reason we're getting a third, out-of-state opinion on the question of radiation treatment is that the two opinions we've gotten so far have been completely divergent. And the major difference revolves around the fact that there's a lifetime maximum on the amount of radiation one can (or should) receive.
The first opinion, from my own radiation oncologist, is that while it's rare to re-irradiate someone, doing so would offer me some benefit despite the potentially serious long- and short-term side effects. The hitch is that I couldn't be treated with a full dose of radiation because that would put me over the lifetime maximum. But my doctor feels that she could still give me what she termed a "meaningful" (albeit partial) dose without exceeding that maxiumum. She'd still need to do a lot of measuring and calculating to make sure that she could treat me while sufficiently protecting things like my heart and lungs and brachial plexus (a group of nerves that affect the shoulder, arm, and hand), but she's optimistic on that front. Even so, I'd still be at extremely high risk for lymphedema, and I could, in a worst-case scenario, lose the use of my arm. Makes you want to sign right up, doesn't it?
The second opinion is from a more experienced radiation oncologist at a different hospital—the same doctor who gave us a second opinion five years ago. This doctor (we learned) doesn't believe in partial doses—she's an all-or-nothing kind of gal. Therefore, she recommended—unequivocally—against another round of treatment. We took issue with some of the other things she said (more on that in another post), but I don't think they affected her bottom-line recommendation.
My fantabulous surgeon is predisposed against radiation. My oh-so-wonderful oncologist and the radiation oncologist at his hospital are predisposed in favor of it.
A clear-cut answer does not seem to be in the cards.
Hence the trip to Boston, to see an even-more-experienced radiation oncologist (aka the wizard) at yet another hospital.
Stay tuned.
posted by Jody Rosen Knower at 9:53 PM
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