The Cancer Casino, Patriarchy, Prophylactic Mastectomies, and Me

[lavendertook]

. . . 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.


And the loss of chest padding is not insignificant--it's not as if the lobbing off of a breast leaves you with the chest padding you had prepubescently. Without reconstruction, you are without chest padding. My mom, who has had one breast removed, fell against a table a couple of months ago and cracked her ribs due to no padding, instead of having a bruised breast. Surgery is always risky, and good recovery never guaranteed. I watched my dad die in the hospital after a failed surgery several years ago, granted far more risky than this one, but one he should have lived through. Also, if I am fated to develop an invasive cancer or DCIS down the road, the odds really are very good we'll catch it at stage 1, and I can get the mastectomy then and avoid chemo and radiation, and the longer I wait, the more improvements there will be in surgical techniques; what I'm reading about now about the complications and lasting pain from any kind of reconstruction is dreadful. And lastly, at 51, I finally fucking found an affordable bra this fall that gives more support than a sports bra and is comfortable to wear all day, and I damn well plan on wearing it out. It could lift and separate better, yeah, but it's an improvement.

I'm seeing a number of blogs by women who have chosen prophylactic bilateral mastectomies to reporting and defend their choices--and it is a good thing they are writing. It's needed to make sure stupid insurance in the uncivilized US still covers this option--many have had to fight for their choice. However, I'm seeing a lack of women at high risk like I am who do not choose this option writing about their choices, and from what I have seen and heard since grappling with my diagnoses the last few months, and the amount of "I'd lob them off" or "my best friend just did" I've heard from other women has made me feel some pressure to defend my choice, and spend a lot more time thinking about an option I had taken off the table for myself at this point. I don't want to disrespect the individual and very hard made choices of other women, but I think there is no way I can express these concerns without it impinging on them, and I have to raise them because I think it is important.

The culture I live in hates womens' bodies, and especially our breasts--that's the nature of the male gaze and the patriarchy that informs it. Women with small breasts are made to feel inadequate for not having big ones. And women with medium to large breasts feel inadequate because they droop in ways that ideal breasts are not supposed to. The male gaze forces us to be self conscious about our breasts no matter what amount of self love we may attain. As stated above, it's hard to find comfortable bras for many of us, and many women endure wearing all kinds of uncomfortable bras because they feel better about how they look in them, or feel they will break an uncrossable taboo by not wearing them. And some of us considering comfort prime have a hard time finding bras that anchor our breasts comfortably for the movements we need to make. And this only scratches the surface of the unhappy relationships most women, from a cisgendered perspective alone, have with this part of our bodies.

In the articles I'm finding about mastectomies, there is much written about the loss of breasts as loss of femininity, and how she looks to her (always male) partner, and how that affects her sexuality--heterosexuality is assumed. I feel like I've been plopped back in the 1950's and consciousness raising groups never happened, let alone lesbians--there's so little questioning of the internalized male gaze. Very little is written about the loss of sexual sensation, even though many of us do experience a connection between nipples and clitoris. How a woman feels in her own body for her own physical sensations alone is deemed so unimportant it's hardly ever a concern raised. And I can't help but think this sense of alienation and internalized misogyny directed at our bodies may be adding to the high number of women, mostly white according to one article I read, and largely USian, and who may not have Angelina Jolie's resources and connections to the best surgeons, choosing to go for the prophylactic mastectomy instead of learning to live with the possibility that they may get some form of cancer, as well as the possibility that they may never get cancer; or if they do, they will be able to act then and not go through all the chemo and early deaths like other women they knew. I'm not talking about the women diagnosed with stage 1 invasive cancer, or the more complicated DCIS diagnosis, or worse--I'm strictly talking about the prophylactic bilateral mastectomies due to genetic testing and precancerous conditions like mine.

Because finding the research on how risky breast reconstruction is, and how much additional surgeries it requires is not hard to find. The chances that you will have a long, involved relationship with the medical community if you go the diagnostic route is a big reason why many women choose bilat mastectomies (bmx) instead, but the chances that you will still have a long involved relationship with the medical community after bmx exists without reconstruction, and is very high if you choose any variety of reconstruction, even if you just want a little chest padding like an average male breast. I do not think it's fear of the word cancer alone that is making so many smart women want to risk such a major surgery when they have a 30% - 80% chance of never developing cancer, and have a very good chance of detecting it before it spreads and not dying from it. I can't help thinking there is a lack of love for one's own body involving the cultural undervaluing of the female body that might be informing the growth of this choice. And for women who have not entered the Cancer Casino, I think this may factor into how readily they think they would choose bmx, even when they might not opt for bmx when actually in the place where I am standing right now. But I'm angry, and that's informing my perception.

My thoughts could be coming out of not having done enough research yet to have found more voices coming from where I am and the defensiveness I have developed because of it. I shall continue to research this and am open to other view points. Again, I know there are women who have been in the opposite position--who have chosen pbmx and have had a hard time finding surgeons and support, and it is vital they do keep speaking up. My bottom line is that I'm not getting the support I need right now and I'm trying to make it myself the best I can--so what's new. Sucks at "musical chairs" is my byline. Expect a new Dreamwidth LCIS-centered, or lobular cancer in general community in the near future, where I'll be hoping someone else with ALH or LCIS joins.

I've known my breast cancer risk is higher than average since my mom developed cancer 13 years ago and have approached all the waits for my mammogram reports with some anxiety for many years, but it hadn't dominated my life. If I'm lucky enough not to have any call backs in the next couple of years, I'll hopefully just be dealing with that usual level of anxiety for many years to come, unless I get squashed like a bug by something else out of the blue--always possible. For me, it's better to deal with the 50/50 cancer risk, because I could die tomorrow in a car crash instead, and mortality is risk, period, and life is such an unsure, unfriendly thing and I know so many who have died too young. The future is unknowable, and the past, too, changes: a thought a few days ago made me stop thinking how unfortunately ironic it was that all this turned up the one damned year I missed a mammogram due to joblessness (I hadn't found the free social service of the MammoVan yet.) But then I realized it's possible that if I had insurance and went to the same diagnostic practice I've been going to for years instead, they may not have found any of this. They might not have as good equipment or skilled workers as the university hospital that runs the MammoVan has. Maybe they downright sucked, and I would still not know unless something bigger develops later. On the other hand, if nothing bigger develops, not knowing would have been nice and I'd be living free of this worry. Ah, if I'm very lucky, one day I will rue having gone anywhere else but that old radiology clinic. Hope on that future for me. Only time will tell, not the stupid risk factors.

And that's the whole thing with the Cancer Casino. As soon as you enter the world of cancer diagnoses, you get handed a figurative set of cards called "cancer risk factors." The main scale they seem to be going by for now for breast cancer is the Gail Model, and of course there's controversy over its prognostic accuracy. By the Gail Model alone, my risk of developing something more cancerous than my LCIS is 43%, except that the uncommon conditions ALH and LCIS can't be factored onto the scale, so it's fuck all for reading my status altogether. My surgeon said that makes my risk higher and more like 50%, but the truth is, she can't know that. It's not a cumulative thing. She seemed a little stopped in her tracks when I reminded her I did not have the BRCA gene. And how genes express themselves is still very controversial as well. They just don't really know enough, and I'm not going to sit shaking in my boots believing these untrustworthy stats. I am a tried, true, and orthodox agnostic, mostly, and there's too much casting of runes in all this flighty science--it's still in its infancy. They just don't know enough yet, and I do not want to play with their one-breasted bandits. And I'm certainly not going to chew off one of my body parts at the chance of a coin flip--my odds of not getting out of this trap need to be much higher before I do that.

So Friday I go see an oncologist, and I need all your best wishes that she turns out to be a good one for me and it's evident on first meeting. That would be the best thing that could happen to me right now, because the oncologist is the person who should be the point person for all my future care, not the surgeon. I need one I feel really good about--confident about her knowledge and approaches and who works well with me. It would be good for me to not have to keep hunting. I'm not counting on it, and am prepared to have to go through a period of assessment with her before trusting (like Dr C who is a vet I feel good with now) or have to hunt for more, but it sure would be nice to find someone I felt safe with now. We'll need to discuss which medicine is best for me, and then if I find one that does not give me bad side effects, I'll be taking it for 5 years, and it should halve my risk factor, if you're in a gambling mood. And I go to see my psych in 3 weeks, just in case we decide tamoxifen is the best hormone drug for me, because then I will need to discuss changing my anxiety/depression drugs, and will have to play Russian Roulette with that for a while before I can get on the hormone therapy. But unless I or the doctor find a lump in 6 months, I'm free from mammograms and MRI's for a year, and that's a good thing.

If I keep getting suspicious spots that need biopsies year after year, and I am filled with the anxiety I experienced these last 6 months, then I may need to revisit the mastectomy option. But future biopsies should be much better than my last ones because I found radiology doctors with much better pain management skills where I had my lumpectomy done. And I'm hoping they will have better support in their breast MRI's which is a much worse experience than mammograms--there's no reason you should be positioned so that so much of your weight is supported by a narrow bar under your breastbone. And I'm going to demand alternative diagnostic methods and, if necessary, a period of waiting instead of going through an MRI-guided biopsy again, because that was really horrible. So I'm hoping I can thrive better on this management route. And odds for the gambler are with me that if anything worse crops up, it will be found at Stage 0 or 1, and I will have some choices then. For many women and trans men, there are no choices, and things are far worse. So I do have some luck with me. We'll see where it takes me next.

BTW, if you know of anyone dealing with LCIS or ALH, please send them my way--we are few and far between.

I'm making this post flocked right now, but I might decide to open it up later, or reformulate the parts I want to make public in another post if I decide it has more value than I can tell in my current mood with my newbie cancer community critic status--not sure yet, so just a heads up if you comment.

ETA: I decided to unflock--warp drive ahead.

Addendum: Here's a link to a good article on bilateral mastectomy risks and problems:

http://jco.ascopubs.org/content/29/16/2132.long

Comments

[wordweaverlynn]

You are approaching this so sensibly. I admire that. Which doesn't mean you don't get to cry.

Sending you much, much love.

[lavendertook]

Thank you, hon. Riding on the anger has been feeling better than crying, so I'm going with it, while trying not to be too prickly to hug.

*hugs*

[zana16]

This is important stuff to talk about, so thank you for putting your thoughts into words. My mother died of breast cancer so the medical community never fails to remind me to be hypervigilant about everything relating to my breasts. I did not realize that mastectomy removed the sensation -- how terrible!

[lavendertook]

Thank you, bb--I'm glad to know it has value for you. I did not know that is how you lost your mom. *hugs* I think the trick is to keep up with all their diagnostics--the part of the whole technology that has improved in our lifetime--without getting caught up in their risk factor prognostications. And yeah, that's why I'm so angry that so much of the rhetoric is focused on how breast reconstruction looks and whether it can make a woman feel sexy (as object) with little of the conversation about the loss of sexual and comfort sensations that breasts have for many of us.

[spiralsheep]

the odds really are very good we'll catch it at stage 1

This is exactly what I was thinking from the beginning of your post.

If I keep getting suspicious spots that need biopsies year after year, and I am filled with the anxiety I experienced these last 6 months, then I may need to revisit the mastectomy option.

And that was my second reaction too.

I've have bits chopped off to excise cancers. My breasts have never been anything to me other than lumps of fat that get in the way sometimes. Despite both those facts, if I suddenly found myself in your current position, I still wouldn't choose preventative mastectomy. May you find your path signposted by competent professionals armed with high quality science and decent human compassion. ::supportive::

Good luck, bb!

[lavendertook]

Yes, your first and second reaction are why the article I linked above--need to make another post about it--asks some good questions: what is the med community doing wrong that more and more women are rushing into pbmx when early detection really has improved? I have several thoughts on that.

I'm sorry you've dealt with multiple cancers. That's a lot of stuff to go through. <3 What are your reasons for why you wouldn't choose preventative mastectomy, or do you have ones I haven't mentioned?

Thank you, hon. Those professionals aren't easy to find in these parts. *feels your support*

[spiralsheep]

Sorry about the grammar fail in my previous comment. I'm glad you worked it out, heh.

I think your reasoning in the original post is sound. Some preventative actions are worth it for some people sometimes, but the equally valid opposite is that some aren't worth it for some people sometimes. I rly don't have anything to add. Except maybe that some people opt for overdoing "preventative" strategies because they want to feel more in control and I understand that urge but, for me, evidence-based medical care is my idea of best practice. /Ms Logical

Those professionals aren't easy to find

Too true, bb! I could wish you competent professionals armed with high quality science and offer you some decent human compassion myself? ::gentle hugs and internet hot beverages::

[lavendertook]

Yup, looking for the evidence.

Thank you, bb. *sknishes*

[monkey5s]

I wish you the very best in your oncologist search, may this Friday's doc be a good fit for you!

I am always amazed at how the Cancer Casino starts trumping up the odds as if you have to react differently. My mother's cancer of the larynx could have been treated with surgery, with chemo and radiation, or just radiation. She asked her oncologist what she would do if it were her, would she get the surgery? And her oncologist said no. My mom ignored the statistics and went with the least awful option (radiation only). She did not enjoy the inevitable aftereffects, but she knew she would have been miserable had she opted for surgery.

Her brother developed the same cancer a couple of years later, got the surgery, wasn't healing well, and ended up dying in the hospital from a stroke. She visited him once, and was horrified. And she was brave enough to admit that it was because she had a strong sense of "that could have been me, if I'd listened to the surgeon rather than the oncologist!"

For the record, she had no other cancer after that, and died of congestive heart failure (which was in a race with kidney failure for which would take her).

You are doing important work with your words here. I hope you find people to support you as you need. I wish you all the strength in the world!

[lavendertook]

Thank you, bb!

The Cancer Casino is the med establishments attempt to gain some control over a condition they have a long way to go before having the science and technology to treat well, and I think to pressure people into using the part of the technology they have made advances in--early detection. And the med profession needs to find ways to make med care more humane--then they wouldn't need to put on the pressure and people wouldn't be avoiding their diagnostics so hard. But that's not going to happen in our increasingly stratified society where the nurses and lower level med staff are paid so little and work too long hours.

I'm glad your mom didn't go for the surgery. People often don't realize how risky it is.

Thank you for your support. *hugs*

[verangel.livejournal.com]

I definitly will be sending good thoughts that this dr and you click in a way that gives you good positive energy and guidance. You have been through so much and the information you provided is so thought provoking and well put. I want you safe, happy, and smiling. I am going to google some of this too to educate myself more. Much love. V

[lavendertook.livejournal.com]

Thank you, bb. I'm glad the info is food for thought. Because of your comment, I linked one of the best articles I found of stats on complications with breast recon vs. diagnostic care. <3

[addie71.livejournal.com]

So Friday I go see an oncologist, and I need all your best wishes that she turns out to be a good one for me and it's evident on first meeting.

I will be sending lots of best wishes and keeping my fingers crossed as well. *hugs tight*

[lavendertook.livejournal.com]

Thank you! *snugs*

[claudia603.livejournal.com]

I'm sending you all the best wishes in the world...and all the love and luck possible! *hugs you*

[lavendertook.livejournal.com]

Bofur wishes! (-: Thank you, hon! *hugses*

[mews1945.livejournal.com]

My thoughts will be with you, and I hope that you will find the oncologist is right for you and the two of you will work well together to protect your health. Finding the right drug, or combination is a process, but I hope it won't take too long or cause you too much discomfort with side effects.

[lavendertook.livejournal.com]

Thank you, dear. You never know how the drug Russian roulette is going to go until you start it. *takes deep breath*

[ancalime8301]

****HUGS**** Good luck with the oncologist on Friday! I'm unfamiliar with this whole world of breast cancer concerns and treatments, but what you say makes sense and I hope you can find others in similar situations who can offer encouragement. ♥

[lavendertook.livejournal.com]

Thank you, bb! *snugs* The problem with an uncommon condition is finding local support. At least there are online places.

[baranduin.livejournal.com]

I hope so much that you click with the oncologist when you see her this week. ♥

[lavendertook.livejournal.com]

Thank you, bb. *hugs*

[voontah.livejournal.com]

I'm sending you my very best thoughts. *hugs*

[lavendertook.livejournal.com]

Thank you, hon! *snugs*

[hanarobi.livejournal.com]

I am trying to take in all that you are sorting through and it is just overwhelming. I am so sorry that you are having to deal with so much. Decisions are difficult, fickle things that torment us before and after. And there is just no way to know. So I wish you peace with your decision, whatever you decide. You are informed and sensible. And the correct decision, according to some schools of thought, is whatever an informed and sensible person decides. Consequences cannot be the sole factor. You made the right decision by trying to make the right decision.

But, gads, you are having to process so much crucial information. I do hope that the appointment with the oncologist goes well. Having someone you click with, who has a handle on information, would be a wonderful boon for you right now.

My good wishes are with you, as always.

[lavendertook.livejournal.com]

Thank you for the empathetic support. *hugs* One never thinks they are developing research skills so they will be able to do research to save their own life, but yeah, I guess I shouldn't say the research isn't hard to find--it probably is very challenging to find for those without a knack for it. Guess I need to keep speaking up about what I find.

[browngirl.livejournal.com]

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.

Word.

I am thinking of you, with admiration and hope and love.

[lavendertook.livejournal.com]

Thank you, dear one. *hugs*

[shirebound]

So much to think about and decide! I hope you and doctor can communicate well.

[lavendertook.livejournal.com]

My road is mostly clear to me for now--who I get for an oncologist and how my body reacts to the drugs I will have to try will determine the twists and turns this year.

[febobe.livejournal.com]

*hugs* Oh sweetie. I wish I had some words of wisdom for you. Hugs and prayers that things go well with the dr.

Love,
Febobe

[lavendertook.livejournal.com]

Thank you, bb! *snugs* I know you have much more hard won knowledge or working with the cancer community and the med community in general, so your thoughts will be always welcome.

[strangemuses.livejournal.com]

*HUGS*

I respect the way that you are dealing with this frightening diagnosis. I think you're doing exactly the right thing by finding a good oncologist to talk to. Ultimately they will always push the decision making back on you for purely legal reasons, so it's important to find a doctor who will listen to you and give you good advice.

[lavendertook.livejournal.com]

*snugs* Thank you, bb.