Becky sez: There’s another dumbass “breast cancer awareness” meme going around on Facebook. I’m not even going to dignify it by talking about it because really, when it comes to breast cancer awareness, FB memes are as useless as they are stupid. To bring some non-stupidity and actual awareness about breast cancer, I invited longtime Harpyness commenter MischiefManager to talk about her experience.
When I was 36, I was diagnosed with breast cancer at the time of my baseline mammogram. At that time, I was a stay at home mom with a three year old son and a two year old daughter. I had no family history or any reason to be concerned; I figured I’d just get a pat on the head and not have to worry about it for another five years. That’s not what happened. It was November 1, 1990.
After the films were taken, I was taken into the radiologist’s office. She told me, to my utter shock, that I had breast cancer and that I should contact a surgeon immediately. She gave me her phone so I could call my primary care doctor and get a referral. Then I got dressed and left.
I felt a mix of complete emotional paralysis and mental hyperactivity. I was too frightened to know what to feel, and my brain was spinning as I tried to take in what the news meant. I believed that my life was in imminent danger. The first thing I did was drive over to my husband’s office and tell him the news. His immediate reaction was to put his arms around me and say, “It doesn’t matter to me what you look like. I will always love you.” We held each other and I cried, then I went to my doctor and set up an appointment with a surgeon.
We didn’t tell anyone until after I saw Dr W (the surgeon) because I didn’t have the answers to all the questions I had. At that time, the web didn’t exist the way it does now, and it was still a time when the C word wasn’t discussed in polite society. I certainly didn’t know any survivors. We were pretty much on our own.
The day I saw Dr W, everything changed. The first thing his nurse said to me was, “Don’t worry, you’re not going to die.” She explained that I had DCIS, ductal carcinoma in situ, which means that there are cancerous seed cells in the milk ducts. But it was very early, so the cells hadn’t coalesced enough to form a lump. They were just scattered throughout the breast.
It happened that lumpectomies had been pioneered in Pittsburgh, where I live, so I knew that I was in a very good place to receive treatment. We have world-class medical facilities here as well as a major med school. If you have to get sick, this is one of the best places in the country to do it.
Dr W was a general surgeon, not a surgical oncologist. But he was one of the most compassionate, most thorough docs I’ve ever had. He always had time for all the questions I had and he made himself available to any family member who wanted to talk to him. He was always respectful of my choices and he encouraged me to get second opinions and take the time I needed to be confident about my decisions.
After he looked at my films and examined me, he confirmed what the nurse had told me. He explained that because the cancerous cells were so diffused, he wouldn’t be able to do a lumpectomy, but that I would need a mastectomy, and that he would remove a sample of lymph nodes from under my arm to biopsy as well. He scheduled me for a fine needle biopsy, which would confirm that the cells in my breast were indeed malignant. We put off discussing post-surgery treatment options and reconstruction until he saw the biopsy results. I went home that day still frightened but knowing that I’d be around at least a little longer to be with my kids, family, and friends.
The hardest thing I had to do was tell my parents. It helped a lot that I was able to reassure them that my cancer was very unlikely to be fatal. They reacted as they did to any other situation-my dad hugged me and worried; my mom got on the phone.
The question of post-surgery treatment was an interesting one. There still weren’t a lot of cases like mine, so there was no standardized medical response. It wasn’t clear whether I needed treatment at all. I was able to get an appointment with the doc who had pioneered lumpectomy, who practiced here. He swept in to the exam room with his acolytes, looked at me for about 3 minutes, then pronounced that he didn’t think I needed any chemo or radiation if there was no spread into the lymph nodes. The guy was a douche, but he gave me the information I wanted, and he was the best. I didn’t need a bff, I needed an expert, and that was what I got.
The night before my surgery, I borrowed a Polaroid from a friend and took a picture of myself. I still have it, and I look at it now and then. I was in the hospital overnight. The surgery was easy, and I had no problems with recovery. I went home with a big dressing around my chest so I didn’t have to look at the site for a while.
The biopsy of my nodes came back negative, so there was no reason for further treatment. I decided against reconstructive surgery. I didn’t want something artificial in my body, and I didn’t want more surgeries. And for me, it was important to confront the reality of my disease. Not everyone wants to go the route I did, and I think women should do what feels best for them. If you want reconstruction, by all means, you should have it!
I went to a support group very briefly. Everyone else in the group was a lot sicker than I was, and I felt like it wasn’t the right place for me. I did like being in a room where all of the scary words could be said aloud and no one would flinch or try to shut you down.
The year after I had my surgery was the first Race for the Cure in Pittsburgh. There were about 300 of us. Breast cancer was just coming out of the closet, as it were, thanks to inspiration from AIDS activists. It was a very inspiring, heartening experience at a time when there was still little public discussion of any kind of cancer. Now, our race gets over 30,000 people and raises a ton of money for research and mammograms for the uninsured. I have a lot of problems with Komen and the pink-ification of breast cancer, but I like seeing the money we raise here stay here.
Some things changed for me after my diagnosis. I stopped shaving under my arms, out of concern about edema. Once you have nodes removed, it’s harder for your body to handle infection in that area, so if you cut yourself shaving, you can end up with permanent swelling in the affected arm. It hasn’t been easy or comfortable, but I’m not going to risk my health because our culture thinks women shouldn’t have hair anywhere but on their heads. I don’t ever take off my bra in an open changing room. Other women don’t need to see my scar. I’m not ashamed of it, but there’s no reason to upset people unnecessarily. I do change in front of our daughter, though. I don’t think she even remembers what I looked like with two breasts.
I was very lucky. I was able to breast-feed both of our kids before my diagnosis—it can be done with one breast but it’s not optimal. I was in the right place at the right time, and I had good insurance. My mammogram was covered at my age where it wouldn’t be now. I had excellent treatment and a ton of support. My big regret is that our daughter now has a family history of breast cancer. This is not the kind of legacy anyone wants to leave to a child.
Sometimes people say that their illnesses have made them better people or that they wouldn’t trade the experience. I don’t know about either of those. I was pretty fond of my breast, and I miss it. But stuff happens and as body parts go, this one was pretty dispensable. The world of breast cancer has changed immensely since I was diagnosed, mostly for the better. We have more accurate diagnostic tools and less toxic treatments. But still, too many women die of this disease. If it’s caught early, it can be cured. We continually get conflicting messages from the medical establishment about how to care for ourselves-are mammograms accurate or not? Should we do self-exam or not? What we need to do is value women’s lives, and whatever will save lives is what we should be doing.
This is so heartfelt and meaningful, MM. Next time any silly meme comes by on FB I’ll just link to this.
Thank you for writing this. I’m linking to this, too.
Those memes make me so angry! How the HELL does posting some piece of minutia help? If all someone does is repost on FB, then guess what, Internets – zie hasn’t done shit except add to their feeling of superiority. How about you get off your butt and DO SOMETHING.
My mother died of metastasized breast cancer in 1994 at age 51, and my sister and I have both already had lumps removed before age 35. We’re both active with Komen because it keeps money HERE, and when the day comes (and it’s coming for BOTH of us), we will need treatment HERE. I’m linking to this post now.
Thank you for sharing your experience MM. You are a wonderful writer!
My aunt (by marriage) had breast cancer way back around 1979. She did not have reconstruction. It was about 7 at the time, and it was a formative experience for me, seeing how she herself and her family dealt with it. She had 2 small children at the time. She has attending breast cancer survivor support groups ever since. She’s now in her late 60′s, and luckily never had a recurrence.
Thank you for this. Those memes never fail to infuriate me. I lost my godmother to breast cancer the year after my wedding that she was too sick to attend. She left two far too young orphans and only got to meet one of her grandchildren. When my father died, the most heartbreaking thing that my mother said to me was that she’d always assumed she would live longer, being younger and healthier than him. But she’d also always assumed that her best friend would be there to move in with her once that happened, and she felt twice as scared without Rebecca.
My family has history of colo-rectal cancer. Once a year since my grandmother’s death my totally Harpy-worthy cousin raises money for research via Facebook and posts somewhat coarse reminders that people need to stick something up their butt and get checked for a cancer that’s still fatal more often than not. That is how you use Facebook to raise awareness of a not-talked-about cancer.
Thanks for all your kind comments!
@Shadow Boxer: if we weren’t talking about breast cancer, there would be no cutesy/suggestive memes. No one does this about prostate cancer, but breasts are always worth a giggle, right?
I’m so sorry to hear about your mom. There are still way too many women who are misdiagnosed, not taken seriously by PCPs, can’t get or afford appropriate care, or are afraid to go see the doc if they find a lump. One thing Komen has done is let women know that they will not be alone if they’re diagnosed with BCA. I’m not fond of the pinkification stuff and I think Komen has made some errors of judgment in its decisions about corporate partners. But the good they have done and continue to do far outweighs those things.
@Ms M: I’m so glad to hear that your aunt is doing well! Support groups can be uniquely strengthening, especially if you’re in treatment over a long period. Patients say things to each other that they can’t even say to their docs, and it’s so important that those things can be said somewhere safe and supportive.
@Av0gadro: Please accept my sincere sympathy on the loss of your godmother and your mom’s beloved friend. I could live with a lot of vulgarity if any of it had one single atom of connection to raising awareness of breast cancer. But it doesn’t.
Thank you for telling your story, MM.
Thank you for sharing with us your story and for articulating for me my unease about the FB breast cancer memes. I agree it seems like breasts are good for a giggle, and it seems fairly insensitive; I am lucky not to have breast cancer- I’ve just been given the all-clear on a lump, but during the waiting period, I obviously had all the fears and uncertainties that one has in this position, and the meme wasn’t cheering me up.
I believe it’s called “slactivism” as it looks good but is wholly ineffective as it involves no effort. I prefer to fundraise.
As the daughter in question, first let me say that I’m very proud of MM for sharing her story and in such an eloquent way! I will confirm her supposition that I don’t remember what she looked like before her operation (or really anything about the whole series of events).
Thinking about this now, I’m sort of realizing that growing up with my mom having had breast cancer has always made the awareness stuff seem a little strange to me. I feel like the way we treat cancer (more so than many other diseases except perhaps HIV in some ways) is very odd, as I honestly don’t think awareness *that it exists* is the problem. (Perhaps in the past this was the case.) People worry about various cancers all the time. I think the bigger problem is that there’s not a lot of knowledge floating around on actual ways to prevent cancers and/or detect them early — it just seems like this mysterious thing that might strike at any time. I think that breast cancer is to some extent an exception to this and that *that’s* how the movement has been successful, by encouraging things like self-exam and mammograms, even though those both have…effectiveness issues. This is turning out very convoluted, but what I mean is that I feel like the facebook memes are sort of the opposite of what’s needed because all they do, if anything, is “raise awareness” that the problem exists, as opposed to educating about action items, so to speak, that people can easily implement in their own lives to help mitigate the problem.
[...] Source: http://www.harpyness.com/2011/09/05/real-breast-cancer-awareness-a-guest-post-by-mischiefmanager/ [...]
@baraqiel: Exactly. Everyone knows that BRCA exists; it seems like every day another celebrity comes out with her diagnosis. The difficulty is convincing women to take the measures that might help them, even with the questions of effectiveness that exist. It seems to be a hard sell to say that we can cure early-stage disease but you will most likely need treatment. The fear of surgery and/or chemo and/or radiation is so powerful that women can be paralyzed by it. I knew of women whose husbands left them after their surgeries, and that scares us too. We don’t know how to prevent completely, only how to contain the damage.
Thanks for sharing your story. That was a great post.
[...] Source: http://www.harpyness.com/2011/09/05/real-breast-cancer-awareness-a-guest-post-by-mischiefmanager/ [...]
thank you for writing this. seriously.
As a 37 year old Pittsburgh transplant whose mother was diagnosed at 38 and dead at 46, I have cringed and bristled with bitterness at the memes announcing your bra color posing as activism and awareness. Thanks, MM, for your candor and reflection. (Dayenu)
Thanks again, all!
Thank you for sharing this. A woman of my acquaintance was just diagnosed at age 37. She has been vocal about being against the pinkwashing and stupid memes. I think this really is the best part of the internet – the ability to hear real stories, from real people, about their real lived experiences.
I know reading stories like yours, and seeing the experience of women close to my age, has convinced me to pursue early screening. That’s a lot more effective than cutesy Facebook games and pink ribbon merchandise.
Thank you, flackette. Please send your acquaintance my wishes for a speedy and complete healing. I’m rooting for her!
Thank you for the story, and I’m glad you’re doing well. I keep wishing I could do something useful, other than start my screenings.(I’m pretty young, but I have a pretty bad familial history, having lost my grandmother and two great aunts to breast cancer.) Don’t get me started about the memes and the pinkwashing. Pink is the most disgusting color ever, and to have it affiliated with just about everthing for breast cancer drives me up the wall.
Shadow Boxer said “Those memes make me so angry! How the HELL does posting some piece of minutia help? If all someone does is repost on FB, then guess what, Internets – zie hasn’t done shit except add to their feeling of superiority. How about you get off your butt and DO SOMETHING.”
I said basically the same thing just today after seeing yet another “If you really care about cancer you’ll re-post this” kind of bulls**t status. They used to just make me roll my eyes but my partner was diagnosed with a rare form of leukemia this week and now I find the FB minutia (love how you put it) somewhat offensive and hurtful. My partner and I agreed that next time we see a status like that we will politely suggest that donating $1 per FB friend to research would be a lot more helpful…if they really care that is…
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