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Genetic betrayal
Dec. 20th, 2005 06:02 pmMy mother is a breast cancer survivor. She was diagnosed at the age of 49, had surgery, then had both chemo and radiation, plus Tamoxifen after. She has been in remission for years now. I have also had one great-aunt on each side of the family get diagnosed with breast cancer. My sister and I, however, have an only slightly elevated risk for breast cancer. It is unlikely to be genetic, though my doctor always reminds me to do my self-exams and tells me that I should start having mammograms at the age of 40, which is earlier then usually recommended, just as a precaution. My mother has not bothered with genetic testing*, and I don't want her to.
I remember the day of my mother's surgery more clearly then anything else about the early days of her diagnosis. My dad was out of town on business; my mother insisted that he go, that he not miss work for this. My sister and I stayed at home; my mother wouldn't let us take her to the hospital. She went in only knowing that the biopsy came back "cancer". The doctor didn't know whether it had spread or whether they would be doing a lumpectomy or something more.
My sister and I didn't talk much that day. We pretty much sat and watched TV all morning, waiting for the phone call about the results. I answered the phone when the doctor called. My mother's breast had been removed. Some of the lymph nodes had been taken too; they thought they'd gotten it all now, but there would be some further treatments, just in case. We could visit that evening. We did; I don't remember what we talked about, only that it looked like Mom had been crying.
Russ stayed over that night; the first time his parents gave him permission to sleep over that wasn't crashing after a party. I don't remember if we talked at all. I remember that he held me for a long time. When we cuddle, we always end up in the same position: on our sides, Russ behind me with his top arm snuggled across my body, cupping my breast in his hand. That night, I lay in his arms, taking comfort in his presence, and wondered what it would be like to not have that breast anymore.
This has all come up for me again because of some recent developments in Russ' family. This past summer, Russ' grandmother on his mother's side was diagnosed with breast cancer. It was caught early. There was surgery and she is going to have radiation treatments. This month, Russ' aunt, his mother's sister, was diagnosed. Her cancer was moving fast, and she had surgery immediately. There will probably be chemo and radiation. This is in addition to a great-aunt with breast cancer in their family's history as well.
That's a lot of women with the same kind of cancer in two generations. There just aren't that many women in that family. Russ' mother only has the one sister, and then there's the two "kids": Russ' sister and their female cousin. Everyone is scared for their grandmother, for their aunt, for themselves. Russ' sister is convinced that she's going to get breast cancer.
They are probably good candidates for the genetic testing, but would knowing be better then wondering? The testing isn't good enough to tell the women that they are going to get cancer, only whether or not they have a genetic risk. But if the results say that they are genetically predisposed to breast cancer, then what choices do those women face? They can get tested more frequently, change their lifestyles, and consider prophylactic surgery. None of these things are guaranteed to prevent breast cancer. But testing positive for altered genes does not predict cancer with 100% accuracy either, so extreme measures (removing breasts as a preventative measure seems pretty extreme, but may be necessary in some cases) may be taken for no reason or benefit.
How do you decide whether or not you get the genetic testing? The results don't just impact you, but also impact your family members, who may not have consented to the test. How much would you want to know about the future? Would you want to know what, barring accident or violence, was most likely to try to kill you one day?
*If you want more information about the genetic testing for breast cancer, including what it can and cannot actually tell someone, the National Cancer Institute's article seems like a good basic resource.
I remember the day of my mother's surgery more clearly then anything else about the early days of her diagnosis. My dad was out of town on business; my mother insisted that he go, that he not miss work for this. My sister and I stayed at home; my mother wouldn't let us take her to the hospital. She went in only knowing that the biopsy came back "cancer". The doctor didn't know whether it had spread or whether they would be doing a lumpectomy or something more.
My sister and I didn't talk much that day. We pretty much sat and watched TV all morning, waiting for the phone call about the results. I answered the phone when the doctor called. My mother's breast had been removed. Some of the lymph nodes had been taken too; they thought they'd gotten it all now, but there would be some further treatments, just in case. We could visit that evening. We did; I don't remember what we talked about, only that it looked like Mom had been crying.
Russ stayed over that night; the first time his parents gave him permission to sleep over that wasn't crashing after a party. I don't remember if we talked at all. I remember that he held me for a long time. When we cuddle, we always end up in the same position: on our sides, Russ behind me with his top arm snuggled across my body, cupping my breast in his hand. That night, I lay in his arms, taking comfort in his presence, and wondered what it would be like to not have that breast anymore.
This has all come up for me again because of some recent developments in Russ' family. This past summer, Russ' grandmother on his mother's side was diagnosed with breast cancer. It was caught early. There was surgery and she is going to have radiation treatments. This month, Russ' aunt, his mother's sister, was diagnosed. Her cancer was moving fast, and she had surgery immediately. There will probably be chemo and radiation. This is in addition to a great-aunt with breast cancer in their family's history as well.
That's a lot of women with the same kind of cancer in two generations. There just aren't that many women in that family. Russ' mother only has the one sister, and then there's the two "kids": Russ' sister and their female cousin. Everyone is scared for their grandmother, for their aunt, for themselves. Russ' sister is convinced that she's going to get breast cancer.
They are probably good candidates for the genetic testing, but would knowing be better then wondering? The testing isn't good enough to tell the women that they are going to get cancer, only whether or not they have a genetic risk. But if the results say that they are genetically predisposed to breast cancer, then what choices do those women face? They can get tested more frequently, change their lifestyles, and consider prophylactic surgery. None of these things are guaranteed to prevent breast cancer. But testing positive for altered genes does not predict cancer with 100% accuracy either, so extreme measures (removing breasts as a preventative measure seems pretty extreme, but may be necessary in some cases) may be taken for no reason or benefit.
How do you decide whether or not you get the genetic testing? The results don't just impact you, but also impact your family members, who may not have consented to the test. How much would you want to know about the future? Would you want to know what, barring accident or violence, was most likely to try to kill you one day?
*If you want more information about the genetic testing for breast cancer, including what it can and cannot actually tell someone, the National Cancer Institute's article seems like a good basic resource.
