first, how the fuck is this blog still about cancer, even a little bit, almost 14 years after my original diagnosis? i'm feeling a little resentful of that fact, as i typically do after my annual oncology appointments, which began with a 9 hour marathon at stanford yesterday.
actually, it really began a pamf, seeing dr. bates for my second post-op appointment. (i'm feeling too punky to photograph myself today, but i will tomorrow as it has been exactly two months since my reconstruction. in the meantime, have some fun with your own foobs and a flashlight, as danny and i did with mine last week. a nurse friend told me that this works with all implants, but since i have no pesky breast tissue to block the light, it works very well with mine. fair warming, it's a bit startling to see *all* the veins under your skin.) dr. bates is very very pleased with my final result, as am i. the right side is a little tighter in its pocket still and so i've been instructed to massage more vigorously. he asked again if i want to do anything about my nipples (or lack thereof i suppose). apparently i have enough aureola skin to reconstruct out of that but i told him i think i'll pass, at least for now. anyway, i see him in another six months.
i was a little nervous about seeing my oncologists at stanford because, as you'll recall, i completely circumvented them when i decided to do my mastectomy. i intentionally went to a breast oncologist who knew nothing of me except what she read in my (extensive) records. i was tired of being treated like a hysterical/hypochondriacal teen, instead of a well-educated woman. so, i got my bmx and scheduled my annual stuff at stanford for after everything was done. surprise! anyway, i unexpectedly had a chance to spent about 20 minutes with dr. link yesterday (he's the onc that treated me for hodgkins, but not the one who follows my long term progress). it was incredibly, incredibly cathartic and validating for me. the nurse put me in a conference room where i rubbernecked until he happened to walk by. i caught his glance and he said 'hey, what are you doing here?' waiting to talk to you. he gave me a most sincere bear hug and then stood back and said 'i heard you had sort of a big summer?' to which i am certain i winced. what followed felt how i imagine it feels to have an overbearing father tell you he loves you and is proud of you, on his deathbed, after years of trying for nothing more than to please him. 'incredible, you're ahead of the curve. you made an incredibly tough and smart decision to take control of your risk. i'm impressed. you're very strong.'
in other words, he completely validated my decision to have a prophylactic mastectomy, after i decided i didn't need or want his validation. and it felt, at least momentarily, amazing. his most recent study (and that of an oncologisy at st. judes) demonstrates that the breast cancer rates among female hodgkins survivors are almost identical to those of women with the BRCA1 gene. *jaw* that data is more discouraging than the data that i based my decision on. sadly, that means that the 'kinder gentler treatment' i received didn't really improve cure rates, or long term outcomes for hodgkins lymphoma patients. radiation is radiation and even in lower doses, (25 Gy in my case) it's both a cure and a curse. i'm posting this article in it's entirety so i can find it later. dr. link is quoted in the second half.
June 4, 2012 (Chicago) By Charlene Laino Girls treated with radiation for childhood cancers are at elevated risk of developing breast cancer in mid-life -- even if the radiation dose was relatively low, researchers say. "We were surprised to find that women treated with radiation to the chest during childhood have a risk of developing breast cancer that is comparable to that of women who are carriers of the hereditary BRCA mutations," says Chaya Moskowitz, MD, of Memorial Sloan-Kettering Cancer Center in New York City. Moskowitz and colleagues analyzed data from more than 1,200 women treated with radiation for childhood cancers and found that by age 50, 24% had been diagnosed with breast cancer. Among survivors of Hodgkin lymphoma -- who were treated with high doses of radiation that are no longer used -- the rate was 30%. By comparison, about 31% of women who carry a mutation in the BRCA1 gene, which most doctors recognize as a known risk factor, are diagnosed with the disease by age 50, she says. Among women in the general population, the rate is 4%. Previous studies have shown that women treated with radiation to the chest as children are at increased risk for breast cancer, Moskowitz says. But this is the first study to show that risk is comparable to carrying BRCA mutations, she tells WebMD. It has also not been clear how lower levels of radiation used to treat pediatric cancers other than Hodgkin's disease affect breast cancer risk, Moskowitz says. She notes that guidelines developed by the National Cancer Institute-sponsored Children's Oncology Group recommend that women treated with 20 grays -- a dosage measurement -- or more radiation to the chest begin annual mammograms and breast MRI scans at age 25, younger than recommended for average-risk women. But the study showed that women exposed to between 10 and 19 grays are also at heightened risk and therefore may benefit from early breast cancer screens, Moskowitz says. Approximately 50,000 women in the U.S. have been treated with 20 grays or higher, and an additional 7,000 to 9,000 have been exposed to 10 to 19 grays. The findings were presented here at the annual meeting of the American Society of Clinical Oncology (ASCO). 12 Million Cancer Survivors "These are rather striking data," says Nicholas Vogelzang, MD, of the Comprehensive Cancer Centers of Nevada in Las Vegas and US Oncology. He was not part of the study. "We have an obligation to those many thousands and thousands of young women we treated years ago. Hopefully this will increase our awareness of [the] need for mammogram screening of this population," he says. ASCO President Michael P. Link, MD, says that once active cancer treatment ends, survivors typically receive ongoing follow-up care from their primary care doctors. "Patients should empower themselves and bring a summary of treatment they have received to their doctors," says Link, the Lydia J. Lee professor in pediatric cancer at Stanford University School of Medicine. He notes there are nearly 12 million cancer survivors in the U.S., up from three million in the 1970s. The work was supported by grants from the National Cancer Institute.