so you have an opinion about my mastectomy

Maybe I brought it up. Maybe you asked. Maybe you know I’m thinking about it. And you have an opinion about my mastectomy. You want to share it, and while you have an inkling you have no idea what you’re talking about,  you share anyway. Sometimes you preface your opinion with the reason why you see yourself qualified to offer said opinion, and your reasons range from “i have children therefore i know” to “i have been thinking about this a lot” to “i just don’t want you to have to deal with this again.” Unless your reason for sharing your opinion is “i had a mastectomy,” your inkling about not knowing very much about mastectomy is probably so completely, totally right.

Now don’t get all worried if you’ve over-shared your opinions with me. I’m writing about this to describe how it feels to be showered with other tons and tons of other peoples’ opinions when the vast majority of those opinions are totally unhinged from what it is actually like to consider mastectomy. I’m writing about this because I am thinking about it quite a bit right now. I still love you lots, and I’m probably not even thinking of you when I write these things, and actually, if it were just you who shared your opinions, that would have been totally fine. What’s disconcerting is the onslaught of opinions.

First of all, its masTectomy, not masectomy. Now, that we know how to say masTectomy, let’s move to the second thing.

It’s not a boob job. That comparison is really awful. And it’s also totally technically wrong: a boob job involves inserting silicone implants underneath breast tissue so that the breasts look larger. A mastectomy involves removing all of that breast tissue and, if there is a reconstruction involved, inserting silicone (or fat from another part of the body) right under the skin. There is no natural or functional tissue left in the breast. The look, feel, and reason for having a mastectomy are entirely and completely different from a boob job.

There are precious few people in the world who understand mastectomy. There are of course, doctors. They get it. They have a boat-load of research in their brains when they recommend this and that, and for every person out there telling me I should have a double mastectomy, I want you to know that the surgeon recommended I have only a lumpectomy + radiation, the radiologist is loathe to radiate me for concern of radiations’ 20, 30, and 40 year side effects and so recommended mastectomy, the plastic surgeon reminds me at every appointment that a bilateral mastectomy will not improve my survival, and the oncologist nods her head and says this is a horrific decision to have to make and that any of my options- lumpectomy, unilateral or bilateral mastectomy- would be a fine decision. Did you get that? A bilateral mastectomy will not improve my survival rates.  Now, that doesn’t mean I shouldn’t have one. All it means is that the reason for having one should not be “to make sure I never get this again.”

I like to consider myself quite informed. I have read many, many documents about my options, and had many, many conversations with doctors about my treatment. However, there isn’t consensus on what I should do generally in the medical community—and much is left to me to decide. Given this situation, it always suprises me that in both popular culture and in my personal relationships, there is major policing over this decision. In the public eye, bilateral mastectomy is an unnecessary decision, one that women should basically never make. This is especially interesting to me, because most people around me emphatically explain to me why I should have a bilateral mastectomy, even though they say in the same breath that they don’t understand all the complexities of the decision.

It’s all policing, regardless of which side of the coin you fall on, I think. Folks want to warn me not to be drastic, and also, to be drastic enough that this won’t happen to me again. As if having a double mastectomy is going to prevent this from happening again. The risk of metastatic breast cancer— breast cancer showing up in my liver or bones— is much higher risk than getting a contralateral cancer in the other breast. And yet, each time I hear people tell me to have a bilateral mastectomy, the subtext is if you don’t have a bilateral mastectomy, and you get breast cancer again, it’s going to be your fault for not having had the bilateral mastectomy. This is probably not what anyone is thinking, but it is certainly what I am hearing and it is how the words are shaped and formed. Words have histories that are invoked when we speak them, whether we mean to imply those histories or not.

Mostly, what I hear about mastectomies is practically everyone telling me their opinions, what they think I should do, what they would do, and how I should make a mastectomy decision. Sometimes I want to remind people I am an adult with a f*ckload of research skills and I can probably decide what I want to do in a fairly methodical, very data-informed manner. Sometimes all this uninformed advice makes me want to whither away into a thousand “idontknowidontknowidontknowidontknows” and never come out from underneath the thickest, heaviest, darkest blankets.

It’s horrible to consider cutting your body parts off. Horrible. I hope none of you ever have to do it, and I hope the only way you ever know about this particular horror is through me. The horror goes far beyond the medical, and stretches into all kinds of spaces that before, I wouldn’t have thought about in relation to mastectomy.

There’s the simple fact that chopping off both breasts destroys many layers of “what I would have done” in my life, if it were not for breast cancer. Sam and I were getting ready to have kids. I would have breastfed them. Now, that option is contingent on a particular kind of surgery. I know lots of people don’t breastfeed, and I know their children turn out just fine, and I also know that’s not the issue, at all.

The issue, rather, is that my options are scrambled. The issue is that I would have done something I now cannot do, and my not doing it is out of my control. Moreover, that something I wanted to do is related to something even bigger: something I wanted that looks absolutely nothing like it would have, pre-cancer: babies. Our entire baby-plan, a smaller part of our life-plan,  has been spun way beyond out of control. It’s not like I didn’t want to breastfeed, or like I couldn’t, or didn’t like it, or like I struggled too much. It’s that I didn’t even get to struggle, decide I didn’t like it, or make another decision. It might not be an option at all, or it might be, if I have a unilateral mastectomy. Lots of people have had opinions about my mastectomy decision in relation to breastfeeding, and while sometimes part of me wants to hear those opinions, most of me wants to tell everyone telling me babies will be fine without breastfeeding to shove it. What that comment articulates to me is that my sadness/concern/anger is wildly misunderstood. I’m not angry someone else decided not to breastfeed, I’m angry I don’t get that choice.

There’s also this: no sensation. None, even in nipple-sparing reconstruction. Most of the women I know who have mastectomies really hate this part. And those who have had reconstruction complain about how their breasts feel like silicone bags with skin over them: literally, that is what they are: silicone bags with skin over them. There are some coolish surgeons in the states who are attempting nipple-sparing mastectomy without sensation-loss, but I currently am insured in Canada. Loss of all nipple-sensation on both sides is pretty hard to swallow, given I intend on being a totally sexual being for many decades to come.

And so I am trying to decide for myself. Trying to weigh the risks. Trying to weigh the feelings. Trying to weigh what I want in life. Trying to stare into a crystal ball and imagine a future. Playing with fate. Women don’t die from cancer the first time around. I suppose, that a second cancer in the other breast wouldn’t kill me, what would kill me is a metastatic recurrence from this cancer or the fictional second cancer. And also, I never ever ever ever ever want to go through chemotherapy again. And I do mean, never.

I’m not ready to give up the sensation in either breast, I’m not ready to forgo my option to breastfeed hypothetical children who don’t even exist yet. I’m not thrilled about having the left breast hacked off, but I’m down to live well into my nineties, so that’s what we’re looking at. I am beginning to feel rather grounded in the idea I have concocted with my multi-disciplinary medical team: have a unilateral mastectomy, and in a couple of years, have the other mastectomy on the other side. The second mastectomy will be post-babies, or it will be the result of realizing I no longer want to live with the worry- and it really is a worry more than anything- of cancer in the other breast. Hopefully, at that point in time I’ll be living somewhere where I can access the surgeons who can do nipple-sensation-sparing mastectomy. And if I’m not living near and covered by one of these surgeons, hopefully by then I have found the gold at the end of the rainbow and I can afford that sort of surgery.

I feel grounded in this plan because my oncologist suggested I could have yearly MRIs. My earlier plan to do both breasts was related to the fact that mammogram is a totally failed technology, especially in young women. Mammogram already failed to detect my current cancer: yep, that’s right, I had a negative mammogram. And so, I could hardly move myself to trust a screening device to find a new cancer that has already failed to detect my current cancer. But the MRI option sways me. I feel OK with a yearly MRI. MRIs detect everything, but have a very high sensitivity so often lead to unnecessary biopsies. Biopsies freaking suck. But they suck WAY LESS than cancer. Probably, if I have very many- or maybe, any- need for a biopsy, I will opt at that point for the second mastectomy.

Sometimes this ordeal makes me feel like my body is crawling with tourists. Everyone wants to check in about it. I want to tell everyone, and I want to tell no one, and I feel both of those ways at once. I’m bursting at the seams to discuss it and I’m exhausted at recounting all the details. It’s challenging to center myself in what we want for our future- not what someone else wants for theirs- when we go about making these decisions.

And so I go about my life chatting about this when it comes up, and giving myself permission to shut down the conversation. I’m dying to talk about it with my cancer buddies, because even the ones who have other cancers immediately grasp the gravity and their own not-knowing. I talk about it with my plastic surgeon in the locker room at yoga when I see her there, and I listen to the stories of my twitter-cancer-buddies, which are all over the breast surgery and reconstruction map. I am coming to my decision. Slowly. Carefully. Grounded only in what I know to be true for me, for my body, for right now. What a strange sensation, to only listen to my gut.

This may the most pronounced time I have had a situation in which I really need to make a decision only for me. Only what I want. I am suddenly wildly aware that no one else feels like this inside their bodies, that the onslaught of advice can be wiped away, that it really does not matter at all what everyone else thinks. At all.  As a woman, this is profound. When do women make decisions where it doesn’t matter what others think? I mean, really, when did you last make a decision where you didn’t consider everyone else? I can’t remember when I last did that. Maybe I never have. Except now. Now is the time to detach from everyone else. To ignore what people think. To decide for me, and for my body, alone. Because really, this is only happening in my body, and only from inside of my body can I ever really know.

I’ll let you know what I decide. And in the meanwhile, I’ll keep the plastic surgeon jumping changing my mind every other day. And I’ll keep telling her about in the yoga locker room, which I’m sure she adores. And maybe I’ll wear some purple hair while I’m at it.

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mammogram study madness

If you’ve been paying attention to the breast health and/or breast cancer world, you’ve noticed that recently there has been a flurry of activity around mammograms. The debate is summarized by the New York Times here, where basically the issue is that a Canadian study found that mammograms don’t, on balance, save lives from breast cancer death, though they do in fact detect more breast cancer.

Here’s the link to the actual study, which is a 25 year follow up to the original study. American entities-including the American College of Radiology are hot to discredit the studies based on all kind of issues. Probably the best critique is summed up here— she outlines why and when mammograms do and don’t work, and why she thinks the study is flawed, and what she— a breast cancer surgeon herself0 would recommend. One critiques include that the data is old, and current mammogram technology is way better than it was when the data was collected. Another critique is that if mammogram saves even one life, how could we say it was something wrong? People have written personal stories about why they never get mammograms, Ask me? Politicking.

I don’t think this is the right conversation. I think we should be talking about something else, entirely.

I think we should think long and hard about why we are exporting old, tired mammogram machines to the global South.

I think we should think long and hard about why there is no reliable breast cancer screening technique for women under 40.

I think we should think long and hard about why most of the research dollars are not going to metastatic breast cancer, which is what kills.

I think we should think long and hard about the environmental causes of breast cancer.

I think we should think long and hard about how breast cancer activism has been hijacked by companies that produce carcinogens.

So no, I don’t think the whole conversation about whether the Canadian study is methodologically sound is the right conversation. I think there are much more important conversations to be had. I think we need to think about politics, carcinogens, activism, lives. I think we need to think about why its OK to send “old mammogram machines” to the global South but not OK to use data from those same old mammogram machines in a study in the global North. I think we need to think about why no one wants to talk about the women with metastatic breast cancer, and I think we need to think about why there is no screening technique at all for younger women that is in any way reliable. Oh right, there is- MRI- but MRI is such an expensive technology it’s only available after a cancer diagnosis. That’s a win. Or a fail.

Let’s talk about some of the real issues, instead of whether or not these Canadian researchers should be slammed. I mean, really. We all know mammogram isn’t the greatest of technologies: in fact, its horribly flawed. Let’s talk about WHY that is, about the companies behind mammogram, about how Avon and Komen are wrapped in this debate, about where Chevron fits and about activism and environment and the production of plastics.

I just think this flurry of attention is entirely not what we need to talk about. It’s like incessant chatter on entirely the wrong plane.

mammograms

I am totally exhausted. And totally incensed at the pack of pathology reports I requested- and received- from BC Cancer. Certainly, the doctors are awesome. Their reports are complete and full and attentive. I am receiving excellent care.

But WTF, screening technologies. “In particular, the left breast is unremarkable.” “Not seen on mammogram.” “Most likely a benign fibroadenoma.” “Negative mammogram.” “On physical examination, there was no specific discernible palpable mass.” “Mammogram unremarkable.” “Invasive cancer not seen on mammogram.” “She looks well.” “No suspicious enhancing lesion identified in either breast.” “Benign appearing mass.”

So, the incense is twofold. On the one hand, why did my Left Breast cells start morphing, when everyone else’s Left Breast Cells are just as exposed to toxins and plastics and pesticides as mine, at least on a daily basis? But mostly, why all the furor around early detection mammograms? Why’s everyone running around telling me they are going to get mammograms now that I have breast cancer? BECAUSE I HAD A MAMMOGRAM. A NEGATIVE MAMMOGRAM. That’s right. It could have gone like this: feel lump, have mammogram, negative results, go home fine, end up with metastatic breast cancer in a few years, die before 40. That is what would have happened, if I had not insisted on more investigation, even though, as one doc put it, “I’m not concerned.” So don’t go parading around the world like a mammogram is going to save you, or could have saved me, or might save any person in particular, especially if you are under 40. Clearly, early detection mammogram screening is not what is going to get us out of this mess. We need something radically more political.

The only things that got me here was insisting a mammogram was not enough. Which, when you read this section of one oncology report, you, too, will understand why a screening detection system (ie, MAMMOGRAM) that doesn’t work and that isn’t even used to screen young women seems outrageously ridiculous:

“…Given Chelsey’s age and ER positivity, this represents a high risk breast cancer and studies suggest that ER positive breast cancer in young patients represents a unique, more aggressive disease entity compared to their older counterparts. Her risk of recurrence, regardless of axillary node involvement, is high. She will require adjuvant chemotherapy, horomonal therapy with tamoxifen for 10 years…”

It’s an interesting dynamic, because most people think that I know I have breast cancer now- at this young age- because of something like “early detection.” They think I’m a mammogram machine, knowing I already have breast cancer. It is totally random I found that lump, for the record, and multiple doctors said it was not a palpable lump, that that was how normal breast tissue feels. So, I’m never really quite sure what to say to the smile that accompanies the comment, “Well, early detection! Lucky you got it early!” Don’t let age fool you. Don’t let the early-detection-madness fool you. Breast cancer is worse in younger women, like most cancers. Most younger women are diagnosed with more extensive disease than I have, and with the same aggressive markers I have.

If you haven’t checked it out already, please watch PINK RIBBONS, INC.

Tonight, I saw Hunger Games. There are so many parallels. And that post will come, as soon as I grade six more student portfolios from this semesters’ class….