Being diagnosed with breast cancer in October is a double curse: it’s breast cancer awareness month, the time of the year when pink ribbons are trotted out, sob and inspiring stories fill the airwaves and surgeons are paraded on radio and tv to, in effect, market their hospitals. It’s inescapable. And yes, I am very aware.
I am doubly aware of the stupidity of those pink ribbons that will be mothballed in a week or so, meant to make a deadly disease more marketable.
I am aware that, wherever I turn, I am reminded I have cancer and I am not allowed to forget for longer than thirty minutes at a stretch (Amy Schumer has helped in that regard).
I am super aware of people’s ignorance of a disease that has been publicized to death and been reduced to sound bites. For a variety of personal reasons, I know more than most, and I am now realizing how hard it is to dispel myths and misconceptions about breast cancer. I want my friends and family to be comfortable asking me questions, and I certainly don’t blame anyone for not knowing – if anything, I blame the media for cherry picking the information that “sells”.
Among the things I have been asked:
- have you been genetically tested? No, I am not Angelina Jolie and, as much good she has done in coming out publicly and perfectly explaining her (wise) choice, what stuck is that Angelina Jolie had her boobs cut off because of her genes. Women affected by the so-called BRAC 1 gene are a tiny minority of those diagnosed every year, less than 1%. I didn’t get tested because not a single woman in my family, going back three generations, has ever had breast cancer and there is no Eastern European Jewry in my family tree;
- did you feel a lump? No, I didn’t. To this day, all the doctors who have touched me, pricked me, examined me every which way can’t feel a damned thing;
- what stage is it? 2A and grade 1/2 and yes, those are good things because it means it is small but every cancer is different and, as slow-moving as mine is, nobody can give me the certainty one little cell hasn’t taken a hike around my body only to reappear ten years from now;
- couldn’t they tell from your blood tests? No, routine blood tests do not detect cancer (unless it is so advanced white cells will alert a doctor something is wrong). There is no blood test to determine cancer or, at least, there are some in the pipelines, not widely available and not yet reliable on a large-scale;
- did you take hormone replacement therapy for your menopause symptoms? No, I didn’t and yes, they are linked to cancer if taken for long periods of time;
- and then, the one that hangs in the air but not quite uttered? Are you going to die of this? Maybe. I don’t know. Probably not in the short-term. Maybe never. There is no way anyone can tell me in certain terms.
The most difficult aspect of this ordeal is not the shock (it goes away), the acceptance (not much of a choice), the surgery (I am not scared) or the therapy that will follow (it will most likely suck but I can deal). It’s knowing this is forever. Knowing that every mammogram from here on will cause blood pressure raising anxiety, that every sniffle and harmless symptom will take me to THAT place, that this is indelibly imprinted in my makeup. And yes, a large amount of women never ever experience a reoccurrence. But I don’t know and I will never know and I will need to learn to live with this uncertainty, with this utter lack of control.
As I was navigating the meandering bureaucracy of the American health system, and sitting in my primary physician’s waiting room to see her for the needed referral, I yielded to the only pleasure afforded in those waiting rooms: gossip magazines. My dentist has the most current but, here, I had to make do with an oldish copy of People with Jackie Collins (see? inescapable) on the cover: her first interview since she declared she had breast cancer and swiftly died. In an instance of deep perversity, I read the whole thing: how she found a lump five years before being diagnosed; how she chose to ignore it; how she eventually went to the doctor because she had other symptoms; how her cancer had metastasized everywhere and was a whopping stage 4. Jackie Collins was doctor phobic and she had convinced herself her lump was benign. She was at peace with her decision and, as stupid as it sounds, I understand her. Every woman has a choice and should follow her instincts. In her words, she had five wonderful years in which she didn’t have to worry about disease.
Which brings me to what I really wanted to talk about: the new mammogram guidelines just issued by the American Cancer Society (when I say it’s inescapable…): amongst other things, they are suggesting to start screening at 45, rather than 40; to screen every year between 50 and 55, when most women go through menopause, and then every other year (you can read the whole thing here).
I know many of my friends ask me questions to compare and assess their risk based on my story. I am here to tell you there is nothing I could have done differently, I have no reassurance to offer. All I can, and really want to tell you, is that the studies on which the (probably very wise) guidelines are based on are large population studies, from which data is averaged and extrapolated. They don’t, and cannot, speak to you directly.
What you can and should do is discuss your comfort level with your doctor. If your doctor doesn’t seem well-versed, find one who is. Do what feels right to you. Go every year or don’t go at all. Maybe the stress of a potential positive test that will require more tests is something you don’t want to submit to. Fine. Don’t let anyone judge you. But be informed and tune out the soundbites. No one else will do it for you.
My bit of deserved good news is that the MRI I took doesn’t show any further cancer anywhere else in either breast. So, with my surgeon’s blessing, I will be heading to New York this Thursday to join Sue on a Brooklyn sofa. Campari & Sofa takes New York. Stay tuned.
Wall Women by JR