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. . . try your luck . . . try your luck . . .
So I've been doing lots of research on my post-lumpectomy diagnosis of lobular carcinoma in situ (LCIS), which is a heavier dose of the atypical lobular hyperplasia (ALH) I was diagnosed with in August. It is not invasive cancer, though its presence increases my risk of that developing. I may never develop invasive cancer. If I do one day, it is almost as likely to pop up in either breast. It could take the form of lobular cancer like my mom has, or the more common ductal cancer. There just hasn't been enough research on this uncommon condition for them to know. And I doubt there will be much more in my lifetime--that's not where the diminishing research money is going to go. There's no telling--it seems to be much more of a wild card than having the BRCA gene, which I thankfully do not have. Hopefully, after I reach saturation on the info, which I think I"m approaching, I'll start getting back more to what passes for normal life and not be all-cancer-all-the-time, but right now it's still all consuming and overwhelming.
I've gotten over being mad at my surgeon for seeming cut-happy to me in not presenting prophylactic bilateral mastectomy as a more aggressive course than is normally recommended, and presenting my odds, my cancer risk, on the high side, when the data is really unreliable. Enter the Cancer Casino. Six month diagnostic monitoring and a regimen of hormone therapy (tamoxifen, Evista, or Arimidex pills) is the usual course for LCIS at present and lowers your risk by more than half. Some women and trans men with my diagnosis do choose the prophylactic bilateral mastectomy option as best for them, which reduces your risk to less than an average woman without risk factors, and if it stopped being recommended for this condition, then they couldn't get it covered by insurance, so it's important that it remains an option as viable for this condition.
But it's not the choice for me right now. Though my odds might be 50/50 in developing cancer, the odds of developing chronic pain from a mastectomy is over 12%, and much, much higher if you choose reconstruction, along with big risks of surgical complications down the road, like 30-65%, and if that happened to me, the pain would be compounded with regret that I had a chance to have not gone through that and maybe never have developed cancer either, and I brought this pain on myself, because that really is how I roll--I know it.
My thoughts on reconstruction surgery come from my liminal spot on the trans and cis spectrum, and my thoughts on cutting one's body to suit cultural concepts of what your gendered body should look like and interrogating your internalized perceptions, including the Hollywood industry's impact on people everywhere on the continuum, so it's complicated. Mastectomy includes the loss of an erogenous zone for me--that is not a negligible thing to this old sex radical--no reconstruction work can return that to you once the nerve connection is severed, not in my life time or the next generation's, I suspect. I value that as an intrinsic part of my bodily existence. Again, this bodily experience isn't universal among women, but my experience is not unique, and it should matter to more women than I see in articles and forums--it should matter to more people discussing mastectomies who supposedly take the sexual experience of women seriously and like to castigate cultures that are not their own for practicing clitoradectomies.
( Read more... )
So I've been doing lots of research on my post-lumpectomy diagnosis of lobular carcinoma in situ (LCIS), which is a heavier dose of the atypical lobular hyperplasia (ALH) I was diagnosed with in August. It is not invasive cancer, though its presence increases my risk of that developing. I may never develop invasive cancer. If I do one day, it is almost as likely to pop up in either breast. It could take the form of lobular cancer like my mom has, or the more common ductal cancer. There just hasn't been enough research on this uncommon condition for them to know. And I doubt there will be much more in my lifetime--that's not where the diminishing research money is going to go. There's no telling--it seems to be much more of a wild card than having the BRCA gene, which I thankfully do not have. Hopefully, after I reach saturation on the info, which I think I"m approaching, I'll start getting back more to what passes for normal life and not be all-cancer-all-the-time, but right now it's still all consuming and overwhelming.
I've gotten over being mad at my surgeon for seeming cut-happy to me in not presenting prophylactic bilateral mastectomy as a more aggressive course than is normally recommended, and presenting my odds, my cancer risk, on the high side, when the data is really unreliable. Enter the Cancer Casino. Six month diagnostic monitoring and a regimen of hormone therapy (tamoxifen, Evista, or Arimidex pills) is the usual course for LCIS at present and lowers your risk by more than half. Some women and trans men with my diagnosis do choose the prophylactic bilateral mastectomy option as best for them, which reduces your risk to less than an average woman without risk factors, and if it stopped being recommended for this condition, then they couldn't get it covered by insurance, so it's important that it remains an option as viable for this condition.
But it's not the choice for me right now. Though my odds might be 50/50 in developing cancer, the odds of developing chronic pain from a mastectomy is over 12%, and much, much higher if you choose reconstruction, along with big risks of surgical complications down the road, like 30-65%, and if that happened to me, the pain would be compounded with regret that I had a chance to have not gone through that and maybe never have developed cancer either, and I brought this pain on myself, because that really is how I roll--I know it.
My thoughts on reconstruction surgery come from my liminal spot on the trans and cis spectrum, and my thoughts on cutting one's body to suit cultural concepts of what your gendered body should look like and interrogating your internalized perceptions, including the Hollywood industry's impact on people everywhere on the continuum, so it's complicated. Mastectomy includes the loss of an erogenous zone for me--that is not a negligible thing to this old sex radical--no reconstruction work can return that to you once the nerve connection is severed, not in my life time or the next generation's, I suspect. I value that as an intrinsic part of my bodily existence. Again, this bodily experience isn't universal among women, but my experience is not unique, and it should matter to more women than I see in articles and forums--it should matter to more people discussing mastectomies who supposedly take the sexual experience of women seriously and like to castigate cultures that are not their own for practicing clitoradectomies.
( Read more... )
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