another truth
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.
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:
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.”
Chrissy Amphlett “I Touch Myself” Singer, Dead At 53
Thank you Rolling Stone magazine for an honest (finally) headline.
true.
You’re still going to get criticized, so you might as well do whatever the fuck you want.— Kathleen Hanna
Researchers Identify Genetic Profile That Predicts Cancer Survival After Chemotherapy
Thoughts:
1-great another way for insurance companies to say don’t pay for this treatment, it won’t work on her anyway
2-science can identify this tiny ass detail, but not more absolute causes of cancer (except demon alcohol of course)? Puh-leezee!
The D Word
A/N I started this post a week or two ago, but thought it would be taken as offensive. But I read a couple of things since, including Nancy’s Point and some horrible comments on Huffington Post that have renewed my desire to speak out to explain why, for me, sugarcoating death is so repugnant. Please click the link and read Nancy’s post, as well as the other post she links by Dr. Wosnick. Those are much nicer, more eloquent thoughts than the ones I express here. What I’ve written here still is a bit offensive, I even offend myself with it, but I think the topic is worth discussing.
The d-word….
No I do not mean dirty words like the f-word or the b-word (you know I have no problem just putting those actual words in here). But I meant death/dead/die.
It is strange that we avoid saying dead or died, yet, at least here in this rural area in which I live, some mourn quite publicly for a long time, perhaps morbidly so. On any given day I drive down a road and see at least one car with one of those “In loving memory” stickers, complete with date of birth and date of death. Or I see those tiny imitation grave sites that develop at the site of a car crash, off to the side of the road, complete with flowers, pictures and other kinds of things one puts at a tombstone (I assume other trinkets are also at a grave site) . So, those who engage in this very public mourning and memorializing are acknowledging quite obviously that the loved one is dead…yet in conversations many would say “so & so passed away”? In the example of the stickers on cars, it looks like an advertisement that the person is dead, but no one will actually say “so & so died”.
Why do we avoid saying “so & so died”? We say we lost someone, or they went to the light, into that good night or—hell I’m guilty of it too, I once said right here on this blog someone was “gone”—as if he just went to the store for milk or something. See how quickly my mind changed about the euphemisms? Lost is the one that really disturbs me, because in my literal mind, I may know that the person is dead, and I immediately assume the body was misplaced.
I find these euphemisms silly, and annoying. I especially hate them in Cancer World, where there are combined with the warrior/military language. Given the fact that both here on my blog and in real life I’ve been called “honest”, “candid”, and “direct”, is it really any surprise that I say any of this?
Or is it just in Cancer Land that the battle phrase is used? I’m not sure I’ve ever heard anyone say their friend/loved one “lost their battle” to heart disease, to stroke, to complications from surgery, to old age (although many of us wage war on that one, don’t we, with our make-up, night creams, etc.?). Although I will say I often hear someone had a heart attack. “Is he ok?”, “No, he passed.” See, no d-word again.
But of course, the battle language of cancer must be upheld, and it is all part of the blame-the-patient package. The patients must be responsible for all aspects of their special cancer…their poor diet/drinking/not having kids caused cancer in the first place, and in the event of death, it is NOT due to the treatments not being effective enough, oh no, it must be because the patient had a bad attitude and/or did not fight hard enough, therefore making him/her a loser.
The reason I insist we need to say the d-words is because it needs to be up-front-and-in-your- face that cancer kills, in an active, personal away. To say one of us lost the battle, like we are bad soldiers, is an insult. It has been said before and I simply parrot it here: I’m NOT a soldier although I suspect my body is a battlefield in which cancer and treatment fought one another bitterly. I was just kind of…there, getting the environmental impacts, like a scarred landscape for instance.
Like Nancy’s mother I do not want the obituary to say I passed away after the battle with cancer (although I do not presume to know why she said that or what she wanted instead). If I die of cancer before I reach the average age at which American women die, then it is cancer that killed me and I want that known. I want it known that cancer killed me, that medicine and lack of research into prevention failed me, I did not fail in the war.
So for me, no passing away, no losing of any battles, no raging against the dying of the light. Death from cancer is not the time for poetic language, if I’m the one doing the dying.
Can’t Flush, Er, Don’t Touch This
The only thing I miss about the cancer treatment center–everything automatic in the bathroom. I never had to push a handle to flush the toilet. I got soap and water simply by holding my hands out under the dispensers. Heat for drying turned on by holding my hands under the nozzle, or I could get a paper towel simply by waving my hands under the last towel poking out from the dispenser. It’s all there to avoid spreading germs. I like that.
I run into so many women who miss, absolutely miss, being in the treatment world. They miss the doctors and nurses, the care and the support. And I know it is a comfort to be in that care, because I know the paranoia of even the slightest ache or scratch being an early indicator……it’s back.
I do miss one of my infusion nurses. I miss her as a person, but I do NOT miss being in that chair. I like my oncologist, but I only want to see him every six months. Part of this is because I am not very sentimental. Part of it may be because of the Herceptin. I was stuck going there every 3 weeks for a whole year. I was pretty sick of it by the time I finished. And I never felt like I was leaving anyone’s care. These days I dislike going in the building, even for support group meetings, but especially for the six month check ups. I long for the day many years from now, when I no longer need ever enter that building again, if I can manage to stay tumor free.
But I do miss those bathroom conveniences. Every time I use a bathroom in a school, at the movies, the mall, ANYWHERE, I miss that cancer center bathroom.
Former Grunge Girl, Yada Yada, Part 3
Author’s note: I did not want to put the NSFW pictures of my tattoo in this post. Click on the page called at the top called The Right Choice For Me – No Reconstruction.
Former Grunge Girl Attempts to Redefine the Idea of Beautiful Breasts Part 1
Punk Rock (Breast) Cancer
Former Grunge Girl Attempts to Redefine the Idea of Beautiful Breasts Part 2
So I had an idea for a cool tattoo to do instead of reconstruction + fake-ass nipple. Now what? I needed to do research to see if it was even feasible, and to find out if anyone in my area could or even would do such a thing.
Bear in mind, I was looking into this project last fall before this story appeared on Huffington Post, (and everywhere else) and before I got a board (an account, or before I joined…what is the proper Internet speak here?) Pinterest . So I was going into this blind. I did see a few pictures, and bought one stupid book called “Tit Tats”, which had absolutely NOOOO tattoo ideas or suggestions. Mostly what I found were designs of flowers, birds, and that ghastly pink ribbon (gag). But I found useful information too, like, the suggestion that writing over a scar, or using solid color over a scar, were not recommended tattoo options.
Yikes, that is what I wanted to do!
But at the same time, I found an artist in a near-by city that did this sort of work–cosmetic tattoos, this type of thing is called. All the local oncologists/surgeons refer their reconstruction cases to him.
I met Eric in late summer, if I recall correctly. I told him what I thought I wanted, and also disclosed what I’d learned in research–that the solid color and the quote might not be a good idea for covering a scar. Maybe I should just go with flowers or something–what should I do?
Not at all, he assured me. Not only would my design idea be ok, he thought it was cool.
Finally, the first time in this whole breast cancer mess–shuffling in and out of sterile medical rooms (and make no mistake, places where one gets a tattoo are not what we see on TV shows, which is what I pictured–it’s actually alarmingly like a doctor’s office), talking to various members of my cancer care/treatment team-I felt like I had some control in the situation.
Yes, yes, yes….the medical system is set up now to make sure the cancer patient feels in control, feels as though he or she has a say in the treatment decisions. But it is a false sense of power. Cancer patients are handed the most horrendous news they may ever hear, and simultaneously given a ton of information about disease that requires some medical knowledge to comprehend. So yes, it is nice I was “empowered”. Capable of making an intelligent decision? Not always. In fact, I was talked out of my very first decision by the surgeon who diagnosed me. When told the tumor was so big it occupied nearly the whole breast I said “Cut this thing out of me NOW…I need cancer out of my body NOW”.
“We can do that now if you want, but here is my suggestion.” She proceeded to explain that the tumor was so large that the mastectomy would be quite severe, and getting the skin to cover the area that would be removed…well, that would have to come from another part of my body, so even more scars would ensue. So, I was urged to decide that I should do chemo first, to shrink the tumor. What do you know, the doctors, the ones me and the insurance company pay for the “advice”, were right.
Sigh, is nothing ever simple? In the end, despite all the “it is your treatment decision” talk, I was in no position to make any call. The fact I have a B.A. in Literature, not in anything remotely medical or science-y, probably had something to do with that. That is not to say I was a complete moron about what was going on, or a submissive little patient all along. It is just a difficult time to learn all one needs to know to make informed decisions, especially when one thinks they need to be made quickly. But all this is another post.
So, full steam ahead! I was still hemming and hawing about the quote. I would continue to do that for the next several months…while dealing with the holidays (which for me start in October, because Halloween is my favorite), my mother’s health scare, and the dreaded six month check-up activities (blood, mammogram, and that stressful meeting with the oncologist).
During all of that I decided, yes go with my gut, stick with the Churchill quote. I called Eric back, during all of this he’d been kind enought to draw a draft of the idea. The deed would be done in February.
Up soon, the semi-conclusion of this tale.
Former Grunge Girl Attempts to Redefine the Idea of Beautiful Breasts Part 2
What I look forward to is continued immaturity followed by death.
–Dave Barry
(Source: around—the–world)
Author’s note: I did not want to put the NSFW pictures of my tattoo in this post. Click on the page at the top called The Right Choice For Me – No Reconstruction.
In Part 1 I explained why I rejected the notion of reconstruction. Now I will explain how I arrived at the decision to get a decorative, NOT a reconstruction based, tattoo.
In my recent post Punk Rock (Breast) Cancer, I went into detail about my struggles with being perceived as immature, and how I got over that, as I also beat down my post-treatment depression. In short, it involved listening to many bands I loved when I was much younger, but not so immature as I’d been led to believe. While spending many a day revisiting all my old favorite bands and their music, I had the classic light-bulb moment.
Now, as I’ve said before, I’m one of the few who did not get a tattoo in the 90s like everyone else did to “express individuality” (ha ha, it’s ok to be different as long as we are all different in the same way). Until a few weeks ago, my only tattoos were the ones marking my body for radiation.
Despite what the abbreivated playlist the previous post would indicate, (or what the nature and language of most of my posts would indicate), I have a bit of a conservative streak. Or maybe it is the nature of one who never gambles, and over-thinks it too much. Or maybe it is just my inability to committ to anything (no I’m not married, and yes the fear of committment is a part of that). In 1992, the first time I went to Lollapalooza and the first time I saw the Red Hot Chili Peppers, it was great, but my 20 year old self figured I would grow up, get old, stop liking this silly rock music, no longer be a member of what was then called the Alternative Nation. Did I really want any of those tribal tattoos permantely etched on my skin? Bleh, no. I mean, how would that look on a 40, 60, or 80-year-old body?
Cancer has a way of aging a person, and sometimes a decision that seemed mature and forward thinking back in the day just seems stupid now. I looked at my 40-year-old, tattoo-free, yet scarred and damaged body. What on earth was I so worried about back then?
At a support group session, sitting on the beach on a perfect evening, a random joke about getting a tattoo over the scar instead of reconstruction ceased to be silly, or a joke. I mean, when the nipples are replaced, the coloring is essentially a tattoo. Is there a difference?
The answer is no. The answer is, life it short, who knows if I’ll even see 60, who cares.
The rest came so easy, too easy. Like I said, I over-think it all the time.
My first gut reaction was, what band have I seen more than any other, in fact, what band did I just see a couple of months earlier, in a “Done-with-treatment-done-with-bullshit-in-my-life” celebration? The Red Hot Chili Peppers. They’d just been inducted into the Rock And Roll Hall of Fame in April of 2012. I’ve seen tons of bands, some more than once, but RHCP I’ve seen four times in a 20 year span. I kept explaining that to some young people in the hotel lobby after the show–“20 years, folks, I’m OLD”. But the cool thing about RHCP, while I may have been an elder in attendance that night, the youngest concert-goer I saw was still in diapers. Babies know a good groove when they hear it, and RHCP brings the funk.
My tattoo choice was a no-brainer. I always admired the band members’ various tattoos. Lead singer Anthony Kiedis has the band logo on the inside of his right wrist. Inspired by seeing that time and again, I realized what I wanted. I’d get that logo…hell it kind of looks like a substitute nipple! And maybe instead of their name, I’d get a cool quote around the logo.
The quote aspect posed a problem many times in the process for me. My first idea was the quote “If you’re going through hell, keep going”, often attributed to Winston Churchill. The fact that it could not be definitvely attributed him made me teeter totter a bit.
Here are a few other ideas I had:
“I’m a survivor, at least that’s what everyone tells me.” – Courtney Love
“I don’t think anyone ever gets over anything in life; they merely get used to it.” – Douglas Coupland
“Do what’s right for you, as long as it don’t hurt no one.” -Elvis Presley
“To the dumb question, why me? The cosmos barely bothers to return the reply: ‘Why not.'” Christopher Hitchens
“Scientists now believe that the primary biological function of breasts is to make males stupid.” -Dave Barry
Plus, the quote at the start of this post.
Some were silly, yes, but what the hell? Courtney Love’s brutal statement, Dave Barry’s stilly ones, reflect how I still feel now about the survivor language in breast cancer, about boobies-obsessed culture, and just how I felt period. But did I want any of those sentiments tattooed on me?
The alledged Churchill quote is a bit more nobel than I would normally go for, but it seemed to fit me for so many reasons. Plus it was my first, knee-jerk, gut idea. Always go with my gut. Even now, I forget to do that.
And so, my research began.
To Be Continued…
anotheronewiththecancer 