Tag: breast cancer

Outside the Stats

I recently attended a breast cancer conference, intended mostly for medical professionals, but patients and caregivers were welcome too. Many aspects of this event warrant posts, but I’m going to start with an issue covered at the conference that is out of my area of experience. I know it is covered by many bloggers who are far more knowledgeable than I, having actual real life experience in the matter, whereas I am writing about something I did not do. I hope everyone understands that I am empathizing here, and hope no one thinks I do not have the right to discuss this topic.

I am talking here about women who choose to have a preventative bilateral mastectomy, for whatever reason—but especially for those who do it when statistics indicate the same cancer is unlikely to return.

At this conference I listened to an oncologist argue passionately against the increase in unnecessary mastectomies. She repeated evidence I’m familiar with, stats I’m not going to put here because I am sure readers know them; that bilateral mastectomies performed on women with no gene mutations, just a single, simple tumor in one breast, do not increase survivability rates. I could totally agree with this doctor. If you’ve read my About page and other posts you know that I opted for lumpectomy without reconstruction (pictures on the page called Fables of the Reconstruction). I did not get this so-called unnecessary surgery—I cannot handle anesthesia and avoid surgery as much as possible. Mastectomy in place of radiation was not presented as an option for me (I read other bloggers who went with bilateral mastectomy to avoid radiation), so my thought process was: get the least amount of cutting possible.

Surgical-Scalpel-Blade_93051-360x480

But where this doctor—and other doctors, and number crunchers—screw up is in the apparent failure to understand the reason women ignore this information: not fear of death, but fear of cancer, and fear of being the exception to the stats. Because even though I chose not to have “unnecessary surgery”, I understand all too well that it may seem not so unnecessary.

In the Q&A session the doctor was asked how she could or would convince a woman determined to have the mastectomy or a bilateral mastectomy when a lumpectomy would do. She stuttered a bit, and returned to the importance of having a deep, long conversation with the patient about treatment plans. I try not to judge this doctor; she is dedicated to making it clear that women no longer have to get the severe mastectomies that were once the norm. Surgery, technology—it all gets better all the time, so yes, treatment can make it possible that most of the breast is conserved, and it makes it less likely that the same cancer will return in the other breast.

That’s great, stats are great. But let’s think about to whom we are speaking. Most women think cancer could never happen to them (not the small percent of BRCA mutations positives, obviously). So when it does, how can they ever be convinced that it won’t happen again? Was the patient:

  • Diagnosed under the age 40—she’s outside the stats
  • Diagnosed with triple negative, or maybe just HER2+ (as in NOT EP+, the most common breast cancer)—she’s outside the stats
  • Fit/healthy/vegan/non-drinking/non-smoking—she’s the kind of person who has decreased the risk of getting breast cancer, according to nearly every piece of advice out there, and contrary to the OVERLY studied and reported stats, she got cancer anyway
  • A mother, who gave birth before age 30 (or whatever the magic age is for decreasing cancer risk)—she’s not in that group of women who delayed childbirth, another apparent cause of cancer, and she got cancer anyway
  • Diagnosed after getting a false negative mammogram—she’s heeded the advertisements that say early detection via mammogram is the best defense currently in use, and later, when the lump started to become more apparent that other tests were warranted, she got a rude awakening that the mammogram did not detect her cancer after all, in fact her detection is now late, not early—she’s outside the stats

So please don’t use stats showing the low likelihood of recurrence, or the low likelihood of dying from said recurrence, as an argument against mastectomy…on someone who fell outside the stats. Because a woman might be thinking, “yeah, so what, I’ll be in that low percentage that just gets the same cancer in the other breast.”

Even though I went the recommended way…this makes sense to me.

I know doctors have much on their plates and sometimes cannot think outside of the box. When my treatment was complete, my oncologist wanted to put me on the standard mammogram-every-six-months plan. When I asked to alternate with MRIs he started in with the stats, the standard care plans, blah blah blah, until I had to remind him that hey—mammograms are nice if they work. My first one ever did not. Why on earth should I trust them ever again? So, no thanks, I do not want to follow the recommendations or plans that these hallowed stats would indicate are best for the average breast cancer patient. Are any of us really average anyway?

Am I encouraging women to consider preventative bilateral mastectomies? NO. Am I suggesting women ignore the stats totally? NO. Do I think women should opt for the least invasive surgery possible? Absolutely. Do I support women who get this so-called unnecessary surgery? Unequivocally.

All I am asking for here is a little more consideration, and I’m suggesting there may be more to the picture than fear of death, fear of cancer. Yes, it seems some medical professionals and number crunchers are starting to get it…hey they aren’t just afraid of dying, but of getting cancer again, because hey, having cancer really sucks. Falling outside of stats is one of the many things that suck. It just seems with all the new pieces I am seeing in the news—about genetics being able to predict an individualized response to treatment, to maybe in the future develop treatments specifically for an individual—that recognition that not all cancers are alike, that many women are INDIVIDUALS who fell outside of the stats, should be more obvious.

Is this what women who opt for preventative (unnecessary in some minds, not mine) mastectomy think? If so, what kind of conversation needs to happen to alleviate the fears, to convince us all that we won’t fall into that freak percent of women who fall outside the stats….AGAIN?

I’m asking these questions—I do NOT know the answers and hope maybe people will talk about it. I’d like to be convinced myself…because right now I’m not. Help me believe. Help us believe.

P. S. I would also like to remind the doctors and number crunchers that while surviving cancer is great, certainly a worthy goal (yes, I am being snippy and sarcastic), not getting cancer is good too. Some articles I read only address the likelihood of survivability in the conversation about unnecessary mastectomies, all I can say is this: yes surviving a recurrence is great, but not getting a recurrence at all is better. Please keep that mind.

Found this NOT on a cancer-centric website!

From Utne magazine’s tumblr:

Not Just a Pretty Face

Best things about this:

1-Again, NOT on a website devoted to cancer or breast cancer info, in other words, maybe other people will pay some attention, rather than this kind of info being constantly “preached to the choir”. 

2-This quote, first page of article: “Breast cancer rates are much higher in industrialized countries, such as North America and northern Europe, than in developing countries. People who move to industrialized countries from countries with lower breast cancer rates soon develop the higher rates of their new country.”

Punk Rock (Breast) Cancer

Author’s Note- Dave Grohl’s SXSW Festival Keynote Address took place a couple of weeks ago, but due to ongoing internet connectivity issues, and just the insanity of life, I only managed to hear it recently, on NPR’s Fresh Air, then I managed to watch it on YouTube. I’ve listened to it–numerous times–since then. Even if you aren’t a fan, it is still worth a listen, but be warned, he’s pretty foul-mouthed (kind of like my blog, but much much worse). There are many references in this post to the keynote address, and I basically modeled the post on his speech. But, you don’t HAVE to listen to his address to get my point. -anotheronewiththecancer aka cancer curmudgeon

"I hope I still look like a rock star," Dave Grohl gives the keynote address during the South By Southwest Music Festival at the Austin Convention Center on March 14, 2013 in Austin, Texas.pic by Gary Miller/FilmMagic
“I hope I still look like a rock star,” Dave Grohl gives the keynote address during the South By Southwest Music Festival at the Austin Convention Center on March 14, 2013 in Austin, Texas.pic by Gary Miller/FilmMagic

Dear Dave,

Your keynote address at the recent SXSW Music Festival was one of the best speeches I’ve ever heard. One of your main themes, finding your own voice, resonated with me, as I am sure it is doing with many others.

So this is what MY voice wants to say.

One two three four. **

Several years ago I made a poor professional choice that resulted in my being surrounded by a few people I wish I never met. I lost not only my voice, but my way, maybe even myself. I spent too much time trying to please others, changing myself, trying to fit in, something I have never done very well. It impacted me in terrible ways…I failed at the effort, and I was miserable. I was preparing to remove myself from these harmful influences when I got a breast cancer diagnosis.

I stupidly bought into what I call the “cancer is magic” way of thinking. I thought I would get a spiritual, emotional, everything-but-the-kitchen-sink awakening, and things would change. I would be better at everything, life would be awesome, when it was all over. Oh how quickly I learned that cancer does not change anything…a person with cancer, everyone they know, and all life situations, are still the same. One of my many mottoes is, cancer only makes it more so. Everything I was before, I am now, but more so. My tolerance and patience-already not my strong points-all but disappeared. All the problems I had before my special news were simply magnified.

Two of the most hurtful criticisms I took repeatedly in the past 7 or so years were 1) I am immature and 2) I am a bad writer. And there were many, many more criticisms–to the point I am not sure I will ever regain the level of confidence I once had. I was in a bad place, and cancer became an extra horrible obstacle in an already intolerable situation.

Barely a month after completing active treatment, I said “fuck it”. It was messy, walking away so abruptly, but it was the best thing I’ve ever done. I don’t regret it, not even a single second. Cancer didn’t give me a lesson that life is short, I already knew that (because cancer is NOT magic, it is not an awakening for everyone). But I knew my life might actually be or get shorter. Translation: don’t waste a single fucking second of time being miserable.

So what did I do, finally free of the voices whispering in my ear that I was not good enough? I got, what you in your keynote called religion. I turned a side project into a business that allowed me to spend lots of time driving. While driving, I sang (screamed) along to old songs I loved when I was in my teens, twenties, even my thirties, up to present day. “Sonic reducer, ain’t no loser” (“Sonic Reducer”-Dead Boys), “Fuck you, I won’t do what you tell me” (“Killing In the Name Of”-Rage Against the Machine), “Twenty-twenty-twenty four hours to goooo I wanna be sedated” (“I Wanna Be Sedated”-The Ramones), “We jumped up on the table and shouted anarchy,” (Punk Rock Girl”-Dead Milkmen) and of course, “No, I cannot forgive you yet” (I think you know that one). I all but hung my head out the window like a dog while screaming that shit at the top of my lungs. Like your first punk rock club experience, it was heaven.

All these songs were the ones that got me through my misguided youth. I was right back to being immature, or so I thought. Turns out, all that chipping away at me those people did, telling me I was immature, made me even more immature…in the company of these jerks I felt like was 11 or 12 again, and my emotional reactions reflected that. Unfortunately, this was my state of mind during diagnosis and treatment. I had to grow up all over again, to re-grow my confidence, and the best way to do that was to embrace that immaturity…to be a brat and regain my punky snot-nosed self that entered adulthood, and I did it through music. Eventually, I got a little confidence back. I realized there was nothing wrong with who I am–people calling me immature, well that is their opinion, and I no longer give a damn–because I know I am not immature, and my opinion is the one that matters here.

Obstacle 1: cleared

On to the next thing.

During diagnosis and treatment, I longed for guidance on how to “do cancer”, because I suspected I was doing it wrong. I could not deal with the Pinkness expected of breast cancer patients. I was far from the Livestrong “hero” shit. I screamed and cried and was scared, quite often. I looked and looked…to the point I once Googled the phrase “punks with cancer” or something like that, just because I wanted an alternate way of doing cancer. What is offered is “The Idiot’s Guide to Breast Cancer”, when what I needed was “The Asshole’s Guide to Cancer”, with chapters like “You Don’t Have to Wear Heels and a Pink Feather Boa to Infusion to Show Strength” or “(You Gotta) Fight For Your Right (Treatment Plan)”. What is prevalent is Komen and Livestrong–promoting a single ideal of how to behave if you have cancer, with shiny, happy celebrity patients. The only good thing I found to read during my final rounds of chemo was a biography of Joey Ramone written by his brother (which includes Joey’s final days with Lymphoma). I read and cherished it. I continued looking for ways to cope after treatment, as I slowly emerged from the drug and exhaustion induced haze over my brain. Of course, I was dealing with a nasty bout of post-treatment depression, which is common, but rarely spoken of in the cancer warrior culture.

Finally, I found blogs, which you compare to the zines of our old days. I had regained a little confidence so, I decided to add MY dissenting voice to that realm.

You said, “It’s YOUR VOICE. Cherish it. Respect it. Nurture it. Challenge it. Stretch it and scream until it’s fucking gone. Because everyone is blessed with at least that, and who knows how long it will last . . .”
That is what I’m doing. Am I doing it well? Who knows. But it is, as you say, “MY VOICE.” I’m not internet famous, or blog famous, or whatever defines a popular, well read blog. But the readers who’ve reached out to me seem to like what I say…even tho’ I’m what Kurt called a negative creep. Hell, if it were not breast cancer I was bitching about, I assure you, I’d have found some other topic–I could name a few now–but this is what I have the bad luck to know best.

There is no right or wrong way to do my blog, because it is all mine…to paraphrase you.

Obstacle 2: diverted

***********************

I have conquered much in the past year. Reconnecting with who I was to get back to where I need to be, getting my first tattoo at 41 years old–a tattoo that is a band logo no less–to cover my surgical scar, rather than reconstruction. This would be considered immature by those I used to know, I would not have told them I was going to do it–hell, I probably wouldn’t do it all. My voice, my choice.

I did not have the good luck to be left to my own devices, I had to sever ties and declare my independence from the ones who would stifle my voice. But that didn’t mean I was totally alone. I had people giving me food, taking me places. But what was better was the emotional support system of another breast cancer patient and two ovarian cancer patients, who gave me all the courage I so desperately needed to have my own little Independence Day–they don’t stifle. They coaxed the voice out of hiding. For them I have nothing but love and gratitude.

***********************
In your speech you said, “I was possessed and empowered and inspired and enraged and so in love with life and so in love with music that it had the power to incite a fucking riot, or an emotion, or to start a revolution, or just to save a young boy’s life.”

I dislike the hyperbole in cancer warrior culture–the warrior-fight-battle language is a bit over dramatic; I prefer to only use hyperbole for sarcastic or comedic effect. “Hope”, “battling” and a positive attitude (which I lack anyway) did not save my life, better living through chemistry did that. So I’m not gonna say you or your music “saved my life”. Instead, you, your music from Nirvana to now, did something better. It helped me endure and thrive, and kept me sane. Your speech helped me see that all those nights listening to weird music my friends hated while I was in high school, created the inner strength I needed all along–to face all the suckage of cancer. I know this much is true when I’m in the MRI machine and instead of hearing the awful noises it makes, I hear Ministry and Public Enemy songs in all that clicking. I know this is true in those rare moments I reflect on my funky-tattoo-over-reconstruction decision, which flies right in the face of our boobies-obsessed culture.

***********************

You talk about having heroes, wanting to be a hero, hoping your daughters become heroes too. I don’t believe in having idols/heroes; celebrities, family members or otherwise. That is one little bit of the punk rock ethic that I will never shake off–look at who society sets up for worship–those suckers are NOT better than me. And on the flip side, I cannot imagine anyone would want the pressure and scrutiny of being a hero. So it is with some reluctance I dub thee my hero. And not because I think you are perfect, on the contrary, you’ve been fairly open and honest in showing your faults. When you wrote/sang, “There goes my hero, he’s ordinary,” you meant someone else, but for me, it is you–you are my Beatles, my Rock Against Reagan Concert, my Bad Brains, my Edgar Winter. So, in my eyes, according to your address, you’ve done what you set out to do all those decades ago.

These days, I still listen to the songs representative of my so-called immaturity, so I don’t lose my voice again. And I’m not always aggro-woman. I also sing along to Bob–“Oh my Little sister,don’t she’d no tears…ev’rything’s gonna be alright, ev’rything’s gonna be alright.” And whaddya know, I don’t not cry anymore, and it is alright now.

**All hail The Ramones

Pendulum

I wrote recently that I think in the world of breast cancer the pendulum swung too far the other way from the days when breast cancer was not mentioned publicly to now in which it has become almost a rite of passage and we can not only speak openly about it, it is damn near an unavoidable topic at certain times of the year. That would imply that breast cancer is a normal thing, like menopause, when in truth it is not.

And I dislike the effort to normalize it.

It is not that I actively look for the dark side of every issue, I swear. Some up and coming actor that I used to think was promising–but I am quickly losing admiration for–said something about being an optimist. Nothing wrong with that, it was the follow up sentence that troubled me. He said there is much darkness and pain in the world and that we could choose to see it or see the joy. The quote ends with the “advice” that time is better spent responding positively to the world.

I believe it is possible to respond positively to the darkness in the world. But you gotta see it first, for Pete’s sake. Frankly, we all need to see both. To only see the darkness leads a soul to despair. To only see the joy is to deny the existence of the darkness and how the hell does that help?

I believe the way to fight the darkness is to shine a light on it. If there is a problem, speak up about it and suggest solutions, or see if others have solutions.
I am sure it seems that my blogs tend to be lots of complaints…full of the darkness. Yes, I spend much energy (in cancerland, not always in other aspects of my life, mind you) pointing out the things I think are wrong. The reason for this is simple: I want them fixed, I want to help fix it.

I know there is dark and light in the world, in life–the yin and the yang, the sun and the moon, and all that crap (I know it, maybe someone should enlighten the actor I refer to above). But the point is, there should be balance in world. In cancerland, especially in breast cancer, the pendulum has just swung too far to a point of a forced positivism, that fails to acknowledge the dark…at all.

Yeah, maybe I am like Kurt Cobain–a “Negative Creep” here in breast cancer world. I am only trying to center the pendulum.

Take the Mythical Image of the Strong Warrior Breast Cancer Survivor And Bury HER Once & For All

Author’s note:

If you are a breast cancer “survivor” who embraces that ideal image–the pink products, the racing for the cure, etc.– I am truly happy for you. I mean that sincerely, without my usual dose of sarcasm. And just as sincerely, I beg you to stop reading this post, you will probably find it offensive. As nearly always, there will be foul language, because that is how I speak.

This post is for the ones who got breast cancer, and went into it doubting, or maybe at first embracing, what I shall henceforth refer to as The Image. It is for those of us who at some point realized we could not live up to The Image. And for those patients lost and unsure, feeling set adrift, away from the pink anchor. This post is for them–you–us. -anotheronewiththecancer, AKA cancer curmudgeon

Why do I propose this burial? Because I think this mythical image is dangerous. I’m tired of hearing or reading about women who feel they cannot live up to The Image; becoming depressed, maybe suicidal, because of the way this pressure made them feel. I’ve encountered this sort of despair a few times recently, and enough is enough.

I’ve used this comparison before, I think. Let’s say a gun is pointed at your head. Maybe you get shot. There will be blood, there will be pain, and you might die. At the most basic level, cancer is just like that, a gun pointed at the head. You get cancer, you will bleed, you will have pain, and you might die. Most people, when having a gun pointed at the head, would shit themselves. Breast cancer patients however, are expected to run a race, smile, and fight, fight, fight! Like a good little girl. Whoops did I just say that? So when these women cannot live up to the expectations, not only do they feel awful because they have cancer, but they feel like they are letting EVERYONE down, especially those who’ve supported them, but also the world at large that expects certain behavior from the breast cancer she-ro.THIS IS WRONG.

I get it, there is a desire to fit in, to find support somewhere, and the smiling pink parades look inviting. Some women find solace in the support of a sisterhood. (BIG ALERT: I’m an only child and glad of it, so the notion of sisterhood baffles me.) We all want to belong. One of the many problems is, The Image pretends to invite everyone, but it does not; it is actually quite exclusive–I’ll stop short of using the d-word. Dissenters and doubters with breast cancer are ostracized. Don’t believe me? Read Barbara Ehrenreich’s Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America. The first chapter is Ehrenreich’s description of her breast cancer experience, called “Smile or Die: the Bright Side of Cancer”. Some of the incidents she described were all too familiar (hint: a breast cancer patient suggested Ehrenreich get professional help for her “bad attitude” I got similar advice while making what I think is a valid point on Huffington Post). In my humble opinion, it should be required reading for ALL newly diagnosed breast cancer patients.

And notice I only mentioned breast cancer patients. But even not all breast cancer patients are invited, I’ve learned by reading blogs. I’ve read some ugly stories about the ones with Stage IV getting shut out of the “support system.” But of course, they are the awful reminder that breast cancer is not totally beatable, as we’ve been led to believe. “They” can never fit into the The Image. *I use they in quotes not to reflect how I feel about those with mets, but to reflect how I believe The Image machine views those with mets.

Guess who else is not invited to the pink party? Patients with ANY OTHER KIND OF CANCER. I hate that. Why are they excluded? That is a can of worms to open on another day, another post. I will offer this thought to ponder: is it because we just expect them to die, and by that I also mean get out of our sight, as an embarrassment like the mets breast cancer patients, because they cannot beat cancer and fulfill that stupid warrior stereotype? Ask your nearest ovarian or pancreatic cancer patient, they can tell you what’s up, in language you may not want to hear.

I knew pretty much from the get-go that I would not live up to The Image. For those who’ve read some of my other posts, it is pretty clear I was never the cheerleader-joiner type. So of course I’d be the glowering dissenter in the corner. Honestly, I did try to be a good patient (not just a good breast cancer patient). I followed orders, took tests, showed up at appointed times, eventually joined a support group. As treatment progressed I learned some hard lessons about following doctor’s orders, like the need to challenge medical proclamations handed to me, because mistakes were made, but that is another post.

I think I rejected the Pinktober stuff even before I was diagnosed. As an alt-punk Gen-Xer, I hate it when I am being sold to, and tend to look for the lies beneath all shiny images, and I knew The Image, along with the pink crap, was being SOLD to me. These days, as a breast cancer patient, the Pink just infuriates me, rather than simply annoying me on an intellectual level.

When some acquaintances walked in a pink event in my name, I was gracious, I love the little pink rubber- duckie they gave me, and I will never forget their kindness. But I won’t EVER walk or run, I won’t buy pink crap. I don’t need to go into the reasons why walk/runs are not effective fundraisers, nor need I explain that cancer simply cannot be shopped away. Other bloggers have done that, and if you’re still reading this post, you already know this.

That said, this post is not me saying, “Oooo look at me, I’m so clever and strong to have rejected The Image without ever falling into the trap”. On the contrary, the marketing, the peer pressure, in cancer communities is so prevalent, it is amazing anyone ever questions anything. No, this is me defending the ones–us–who don’t want to, or cannot fit into this distorted ideal, The Image. I mean that with more conviction than nearly anything I’ve ever said in my life.

I’m not going to go into how The Image developed, there are some good books out there about that. I am aware the advocacy movement started as a way to support women’s health, bring breast cancer out from the whispering shadows, so women could demand better treatment. This is a good thing. But in a few decades, the pendulum swung completely to the other side, to the point that we shout about breast cancer from the rooftops, and there seems to be subtle pressure to be damn near proud of having it while sporting pink clothes and bald heads.

Of course I’m glad breast cancer is out of the shadows, but in keeping with the insane American ideal of “if a little of something is good, a lot of it is better”, now it has gone over to the ridiculous. We need to bring the pendulum back. We need to slow down, find the middle ground. No more ideals, no more she-roes, survivors, warriors, no more hollow “you’re so brave” compliments. I’m no she-ro. I am no warrior. I am not brave, I screamed and cried raged often enough I assure you. I am simply a woman who found out she had a life-threatening illness, made logical, somewhat informed decisions to eliminate that threat, and tried to deal with all the emotional crap that came with it. I made these choices because I wanted to live, not die. It is that simple. Don’t ascribe these words and their hollow meanings to me and my experience, it is not your right to do so.

So to those breast cancer patients, or survivors or whatever you call yourself, who are struggling because you don’t think you are “doing cancer right”, I doubt this silly post will ease your pain. I can’t remove the pressure of The Image from your back, and maybe no one can do that but you. You will need to be the one to take this mass delusional Image and chuck her out the window, where she belongs. The only way The Image will cease to exist is if enough of us ignore her.

I am sorry if I come off harsh. A lifetime of being unable to conform to much has made me a bit rough around the edges at times. The cool kids or the mainstream (in breast cancer, in life) tend to be intolerant of “the other”, and since I usually fall into that category, I cannot help but be a bit snide about being an “outsider” all the time. I tried not to criticize or judge, but at times I feel criticized and judged by the mainstream pink community and it is hard not to reciprocate. I am ashamed of that because I am truly trying to be a better person.

I do not have any proposals on how to solve what I think is a problem (and yes, it is a problem if someone goes through cancer treatment successfully, and then wants to commit suicide for being unable to live up to The Image–no matter how you spin it). As usual, I am the jackass in the corner pointing out what is wrong without much of a constructive suggestion. I don’t have a degree in Sociology or Anthropology, which is probably what is required to understand the nature of the cancer subculture. If I could lead an army of like-minded folks down the highway in October, destroying every hint of pink I saw, I would do it, but I doubt that will ever happen. All I can think of to do is reject it for myself, and offer a helping hand to anyone else who wants to do the same.

Former Grunge Girl Attempts to Redefine the Idea of Beautiful Breasts Part 1

As I’ve said before (see Why I Did Not Do Reconstruction), for a number of reasons, I opted to not go with reconstruction. Things like lack of money and fear of surgery factor heavily, as does an overwhelming sense of “it just does not seem right for me”. It’s not like reconstruction would erase all that has happened to me and my body, the scar would still be there, and the created nipple would be there only to make me appear normal to others (men). It will never again be a source of stimulation that women unharmed by breast cancer still have. Why should I try to make it look like it did before? It isn’t, and no amount of cosmetic surgery will make it so.

In some ways, I think I just rebelled against all those save the ta-tas ads, which I believe to be misleading. I hate the boobies/ta-tas culture associated with breast cancer, because ultimately it cheapens and makes light of breast cancer. Judging by some of the reactions to objections about the campaigns—“but breasts are beautiful and they sell/bring awareness”—it almost seems as if people don’t get it: if one gets breast cancer, detected by the ad-recommend mammogram, there is a strong possibility that the afflicted breasts will wind up wrecked. For all the talk of awareness, I think most people who have not actually had breast cancer just don’t understand this—they are UNaware.

Reconstruction, to my punk rock/grunge girl-from-the-90s sensibilities, just seems fake. The culture of the punk/alternative (they aren’t the same but I can be both) rebels against all that fakeness. As a huge fan of this music I embraced this rebellion against all things fake. In addition, being a strong woman back then did not mean dressing like Beyonce; jeans and flannel were OK (dressing like Beyonce and proclaiming female strength is a whole other post, ugh). Sometimes I miss a few aspects of the political correctness and Riot Grrls that were a part of the early 90s. Just sayin’.

I still have these sensibilities, and they probably inform my current opinions about breast cancer culture and my own experience more than I even know. I recognize it enough, however, to know that it is why I reject the reconstruction notion. All this rambling here really boils down to: it just isn’t right for me.

I wanted to do what a few women are now opting to do, to be real and/or express themselves artfully after surgery. By now everyone interested in breast cancer issues has no doubt seen the video or photos of Jill Brzezinski-Conley, and know of the recent fuss on Facebook involving the photo of Inga Duncan Thornell, who tattooed over her mastectomy scars, photos of which are in the book Bodies of Subversion: A Secret History of Women and Tattoo. I did not find much of this stuff while I was in active treatment (despite Bodies of Subversion apparently being written in 2001 or so), and considering reconstruction. In fact it was really difficult to find pictures of women with lumpectomies or mastectomies that mirrored what my body looked like. Everything only showed nearly finished or finished reconstruction. I did not like what I saw. It was not until late in the game I found the SCAR Project and blogging. I found a few bloggers posted pictures of their breast(s) saying they too found it difficult to find pictures. But even with the discoveries of these blogs, there are still NOT lots of pics of what I look like. And still, most pictures I find are women going through the reconstruction process, trying to return to “normal”.

I am still debating, as I write this, whether I will join the ranks of those who post their pictures. Probably will. But I will explain what I’ve done and why, in future posts.

The 2020 Deadline Debate

I finally read the editorial in Nature magazine called Misguided Cancer Goal, and listened to the audio of Fran Visco’s rebuttal.

I admit I understand the writer’s general point that the public trust must not be risked, and I especially understand his comment about discovery not heeding deadlines. I think that latter point I understood anyway, and in some ways I do not expect complete eradication of breast cancer even within my lifetime. So while I agree that scientific discoveries cannot be forced, it is the small details of this editorial, and some of the comments, that raised my ire.

The first thing that bugs me is the challenge that NBCC’s blueprint does not have scientific information, and the explanation of how and why cancer is complex that follows a few sentences later. There are a lot of condescending “quote marks” (note so self, stop using them so I don’t look like this editorial’s author) criticizing the blueprint for lack of scientific information, as if it were written by children. Look, those of us with cancer have a better understanding than most that this disease is too complex for the one simple cure ignorantly demanded in slogans. Even if the actual complexities are too difficult for the non-scientist to comprehend, please respect cancer patients enough to know that we do grasp the difficulties, but we are the ones facing death, that might be why we come off as demanding or impatient and wanting a deadline. According to Fran Visco’s rebuttal, it does not sound like the deadline document was written by scientists, but by those impacted by cancer, so the point of view is creating an overall plan to get scientists to do the work. Is not the deadline asking for the scientific work, not presenting it?

About the seventh paragraph in, the writer discusses National Breast Cancer Coalition’s argument that research is not motivated by sufficient urgency, and the writer argues that researchers indeed all feel the urgency, but only for goals possible of being reached. This disturbs me quite a bit, because I do agree with NBCC, I think research is motivated more by money than urgency, as in pharmaceuticals that can treat—for a prolonged period of time, and for a price—rather than prevent. Fran Visco mentions that when the goal was being created some scientists seem to think that cancer patients were ungrateful for what has already been done. The way she says this implies that the attitude is similar to some of the general public’s weariness of pink ribbon culture, in which it has been whispered that enough has been done for breast cancer already, and those of us complaining should just back off. I hesitate to get into that right now, but I will say this: breast cancer still kills many, and makes many more very ill and impacts lives in a big way. When you are the one being impacted, yeah, you’re going to demand more and it is hurtful to be told that enough has been done for you already. Couple this with a pink ribbon awareness campaign that has gone on for quite a while, I think it is excusable for the average breast cancer patient to demand better results. Silly ol’ me.

The writer goes on to suggest a few supposedly reasonable goals. I hate to do this, but I object to the suggestion of investing in a plan to encourage human papillomavirus vaccinations as something that NBCC shout carry out. While I believe research and efforts are needed to eradicate ALL cancer, I’m annoyed the writer cannot to stick to the point. What part of National BREAST CANCER Coalition and The BREAST CANCER Deadline is not clear? All cancers, not even just the ones that only affect women, deserve attention and a fight. I just think if one wishes to argue with a group about their goal, then stick to said goal, don’t suggest a new one that has nothing to do with that for which the group was developed! Sounds like the writer agrees with the general discontent that enough has been done for breast cancer, and breast cancer patients and researchers somehow owe attention to other diseases. As a breast cancer patient who has benefited from all the attention, I see the point. But that is for me, a breast cancer patient, to decide, not for one who has not had it. That may seem harsh, but I am too impatient with researchers right now to care about that.

Finally, my last gripe has little to do with the editorial’s author, just with the overall perception of breast cancer. The very first comment brings up Komen and pinkwashing, (with which NBCC has nothing to do), and the usual criticism of breast cancer donating being a “feel-good” activity. It is so hard to remember all the good that Komen and the pink crap achieved in light of the current annoyances they inflict on the breast cancer world.  Say “breast cancer” and automatically people think Komen, pink, and good will. The person commenting might understand that NBCC are separate and do not deal in “hope” without a plan of attack, but probably not (small kudos to the editorial’s author for acknowledging in the first paragraph that hope is not a good strategy for preventing/treating disease). The curse of breast cancer and the awareness campaign is that the slogans muddled the real story, so battling it now is like a brand new fight, one far from over.

Yes I am uncomfortable with some of the aspects of the deadline. For example, NBCC’s emphasis on a vaccine, that seems a little too lucrative/attractive for Big Pharma. Personally, I’d like more attention paid to crap in everyday products that cause cancer, and I’d like the removal of said crap. Toxic product removal would not take a long clinical trial as would a new drug, which was another point of contention for the writer (the length of a clinical trial apparently makes the 2020 deadline out of reach). Again, I do not expect complete eradication of breast cancer even within my lifetime. What I do expect, and believe National Breast Cancer Coalition delivers, is a change in the direction of research and how cancer is currently being tackled.  I believe NBCC has already changed the direction and the conversation surrounding breast cancer, and thus have a better shot of making some kind of progress against breast cancer than anyone else. The editorial’s author and scientists who seem to have already thrown in the towel cannot say the same.

Some Updates

In the past few weeks I posted pieces on why I blog, and why I’m doing it now rather than when I was going through treatment. I guess the last part should be an explanation of why I am a self-proclaimed cancer curmudgeon. I’ve updated my “About” section to shine a light on my current philosophical stance toward (breast) cancer and the American medical industry (the curmudgeon part). And what follows below is an expansion on that

Above all, I’d like everyone to know that I am grateful for staying alive during cancer, for the drugs (made possible by research dollars from the pink ribbon behemoth) and health care team that keep me that way, and all the support I got and still get. But I do not think being grateful means that I, or anyone, should stop asking for improvements in cancer care and prevention. I demand of science more concrete cancer prevention methods than the “eat right, exercise, don’t drink or smoke” mantra that also helps prevent practically every damn human disease. I think it is ridiculous that the recommended action for a woman with an increased likelihood (like a gene mutation) of getting a gynecological cancer is removal of woman parts. I mean, if I had a gene mutation making me likely to get brain cancer, should I remove my brain? An absurd extreme, yes, but see my point? I realize that cancer is a complex, difficult to understand illness, but after thousands of years of knowledge of a malady we now call “cancer”, science should be further along in the understanding of it all.

*Note: Dude, I’m not even going to follow a thought about how often prostate or testicle removal is performed in comparison to female reproductive organ removal FOR PREVENTATIVE REASONS, because I know it will involve a lot of figures about which cancer occurs more often, and numbers about why science researches one over the other, women’s vs. men’s health issues, blah, blah, blah, so I went with brain cancer in my example—cancer has got to stop dividing men from women, we already feel the healthy-from-the-sick division too much.

I know things like gene testing and radical surgery are the only tools in the box the medical industry has to use against cancer right now, and the industry, as well as patients, want to be proactive….testing and surgery give the illusion of “doing something.” So I understand why the test is sold as something that can provide more info for people like myself, who like to gather as many facts as possible before making decisions. But transparency is in order…like if an oncologist recommends Tamoxifen for 10 years, up from the current recommended 5, to a patient, the patient has a right to know that the study that recommends this was funded by AstraZeneca, makers of Tamoxifen (full disclosure, since I was EP negative, I have no self interest in the Tamoxifen debate, just a personal one, as I researched it on behalf of my IRL cancer buddies, because I want to fight to make sure my friends get the best breast/ovarian/female cancer care available). Women who plan to take the BRCA test need to know how rare gene mutations are, and need to know that the mutations only increase risk of getting cancer, the mutations are not the cause (only if they combine with a bunch of other stuff, like environmental factors, which hurt and cause cancer in everyone, not just those with gene mutations).

All I’m saying, is how can I help add tools to the cancer-fighting toolbox? Other than donating money, because cancer has all my money now.

Thanks For The Inspiring Comments!

I’ve received a few inspiring comments on recent posts. In the event that other readers have not commented, don’t read comments, and have some similar thoughts, I thought I’d better put a quick post up about a couple of things.

I was sent a couple of links to stories about Ms. Rose, the Miss America contestant who is getting the bilateral mastectomy. I did not, and probably will not investigate her case too much. I simply heard her story and passing and let it inspire me to continue my reflections on the decisions I made in my personal experiences. Ms. Rose is not the first minor celebrity to do this (did we not just witness something similar with Sharon Osbourne—I’m fuzzy on her medical facts; I am more interested in the human nature aspect; as in her actions and the media reported reaction), and I doubt she is the last. However, for those paying more attention, the two measly articles I read implied Ms. Rose did not have the BRCA gene, which is impossible, everyone has the gene, the key is in the mutation. I urge everyone to get facts about this from reputable resources. It is possible the articles were engaging in a kind of verbal shorthand, much in the way that retail or movie theater employees ask us for donations to support breast or childhood cancer. Who the hell “supports cancer?” What they really mean is to support research or the fight against cancer, but we as a society get lazy and cut out a few words. Hey I worked in retail for about 20 years; I know how tiresome it gets to ask, for the millionth time in a day, for more money from a customer…while they give you money. It sucks. But now as a person with an up close and personal knowledge of cancer, it annoys me. I would never “support cancer”, and I think it is important to be clear and use proper language when talking about cancer.

Speaking of being clear—I am worried that some might think I am not grateful for how lucky I am in my cancer outcomes. Believe me or not, I am. I know it could’ve been worse, I have personal experience with friends of “worse”, but I do not feel the need to use their stories to quantify my gratitude, it is too private to me and to them. I hope readers can be ok with that.

I will have a little more about gratitude and how it relates to my views in future posts.

How to Swindle a Breast Cancer Patient Parts 2 & 2.5

Part 2:

My previous post wound up as a (self) education piece on whether or not anyone should bother getting BRCA testing, since positive results are so rare. I’ve been kicking myself for not doing the research prior to having the test. I trusted the people around me who urged me to have it done. But I cannot fault those who urged me to get the test too much; with the strong family history, it really is surprising that I am negative (unless it is a false negative). I was so relieved with my result, I wonder if the testing counselor was a bit baffled when we discussed the news; I think she expected a positive result as well.

This may just be my interpretation of how the BRCA testing is presented; it just seems with all the attention and discussion BRCA gets (at least in my cancer experience), all the percent numbers (how many women actually have the mutation, how many women with strong family histories have it) should be higher. And does the mutation cause the cancer—or is this more of a case of: no mutation=you might get breast cancer, and mutation=you will probably get breast cancer? I for one am still more interested in the cause and prevention, and while I am sure genetic research is important, how is it helping anyone outside of the few that have the mutation NOT get cancer? And why is breast/ovary removal the recommended prevention method for those with the mutation? Uh, something better please?

When I started the previous post, I explained I took the test so I could use the information as a factor in making my decision about prophylactic surgery. If the results were positive, would I have gone through with it? According to the testing counselor, a positive gives some women clarity to decide in favor of surgery. I think I was using the negative as an excuse to NOT have it.

What brought me back to this train of my thought about BRCA testing was the news about the Miss America or USA contestant, or whatever she is (I don’t follow beauty pageants), and her impending bilateral mastectomy, which she is choosing to do because she has this gene mutation.

I cannot and will not fault any woman for the decision to have this preventative surgery. In fact I wrote in defense of the decision in comments on a Huffington Post article that implied women were opting for too much surgery. What that article’s author did not consider is the sheer horror of having cancer; the author instead focused on the rates of surgery in relation to surviving cancer, not just having it. That is one of the discussion points of cancer that just makes me hopping mad. Of course we want to survive. But when will the number crunchers get it through their thick skulls that we’d like to not have any cancer in the first place, thank you very much.

Sometimes I do wish I’d had the bilateral mastectomy; perhaps it would cut down on the ever-present fear of more cancer. But ultimately for me, I think the horrors of cancer were all equal; the disease, the treatment, the side effects, and yes the surgery. I am not sure I’d want to experience one horror (removal of breasts) to alleviate the threat of the other horrors. For me right now my fear of cancer’s return is that it will make an appearance some other place—lung, stomach, brain—in addition to my breast, so removing them won’t really rid me of much of my fear. So, I cannot say with any certainty that if I’d had a positive result I would have gone through with surgery. And that is why, what with no children, no desire for surgery, and the knowledge that BRCA mutations are really not a cause of cancer, I just wish I had not bothered with the test.

Part 2.5

Thanks to ridingthebcrollercoaster’s comment to my previous post, I was reminded of a factoid I failed to mention before. While the BRCA gene mutation is rare in the general population, there is a higher incidence in women of Ashkenazi Jewish heritage. According to Five Lessons I Didn’t Learn from Breast Cancer (and One Big One I Did) by Shelley Lewis, “because scientists have isolated the part of the gene that needs to be tested on those women…their cost of being tested is much less.” So, if you are reading this and are a woman of Ashkenazi Jewish heritage considering having the test done, I urge you to mention this cost issue in your discussions before getting the test. I hope this helps!