“Are these realistic decisions or not?” asks Dr. Todd Tuttle, cancer surgery chief at the University of Minnesota, who led the study after more women sought the option in his own hospital. … “I’m afraid that women believe having their opposite breast removed is somehow going to improve their breast cancer survival. In fact, it probably will not affect their survival,” he said.” More Breast Cancer Patients Opt for Double Mastectomies
The Point of View (POV) concept is so crucial in thinking about cancer. One’s relation to cancer so significantly determines how the world of cancer is read, written and interpreted. But not all folks who exist in an intimate relationship with cancer articulate the significance of POV.
“More Breast Cancer Patients Opt for Double Mastectomies” reads a headline today from an article in the Wall Street Journal that reports research from the Journal of Clinical Oncology. In a nutshell, Dr. Tuttle and his colleagues report a 150% increase, since 1998, of women getting double mastectomy surgeries where one of the two breasts removed was apparently healthy. The study shows that women who opt for this surgery tend to be younger, and that the choice was not affected by the severity of the tumour itself.
My own choice for the immediate treatment of breast cancer was just like that reported by Tuttle’s project. It appeared that I had one healthy and one cancerous breast, and I opted to have both removed – one, prophylactically. This decision has, at times, been agonizing to live with. There’s lots of middle-of-the-night 20/20 hindsight. And then there are my social mirrors. Every time that I have to explain my scenario to a new doctor, as was the case last week with a gastroenterologist, there is the same reaction – passionate consternation. They get a look of extreme agitation, and invariably ask, immediately, “WHY the aggressive surgery?”.
It has been interesting to me to review my diagnostic reports as I prepare for my 2nd. opinion consultation next week. I had never, for example, seen my breast MRI report. It turns out that I had a large, secondary area of DCIS (cancer) in my right breast, close to the chest wall, that had not been identified by the gazillion mammograms I had prior to the MRI, which was done just days before my surgery. This area was never biopsied. If I had chosen the route of a lumpectomy, no one would have known about the other area of DCIS. The pathology report on my left breast showed significant areas of cellular abnormality — apocrine metaplasia — which is a precursor to the development of invasive cancer.
So, all things considered, and with the pattern in my familial history of bilateral invasive breast cancer, did I make the correct decision or was it “overly aggressive”?. I think it’s interesting that a cancer researcher, like Tuttle, could actually make the claim that women living with cancer are somehow deluded about how removal of the apparently healthy breast will “affect survival”. For Tuttle, there is no impact on survival. For this group of medical researchers, it’s about an empirical relationship between various surgical options, and years of life. In this project they don’t discriminate between ‘years of survival’ and ‘years of disease-free survival’. However, even in the case of his research, data clearly show that removal of the healthy breast reduces likelihood of a recurrence. So how could that not be a significant difference? Surely just the fact that I don’t have to worry ongoingly about a mammogram failing to identify cancer in the other breast “affects my survival”! And similarly about treatment options. For Tuttle, it is paradoxical that women would choose prophylactic breast removal to reduce recurrence, rather than tomoxifen, which would reduce recurrence hormonally, by blocking the uptake of estrogen. For me, that one is a no-brainer. Do I want to enter into immediate chemical menopause, or live without my left breast? Gosh. I wonder why it seems to clear to me, and so odd to the medical researchers. POV.
I am grateful to the activists from Breast Cancer Action (and others) who lobbied doctors and the medical establishment in order to steer them away from what used to be the standard of care for all breast cancers — radical mastectomy. However, an approach that aims to “save the breast” no matter what the effect on the quality of life for women living with breast cancer is also problematic.
October 23, 2007 at 6:16 am
This is good timing for me. Serendipitous, even. Twice, I have written a long long comment. Then deleted each of them. Just too much to say and feel. But so much agreement and understanding settles in my heart and head. Your writings are a real source of clarity and comfort. Somehow you make the questions and the insane curiosities easier to deal with.
October 23, 2007 at 2:38 pm
What a lovely comment to read first thing in the morning! Next time, though, leave the long long comment. ok? I love to read.
October 23, 2007 at 3:43 pm
I can’t really tell anyone else how to live their life. But I can tell people what I would do in a situation. And I would have done exactly what you did.
Of course there’s also sorts of meaning and identity attached to our bodies. But ultimately I’m more interested in me than any particular parts of me. Even (ooh here’s Y chromosome heresy) my balls. Live another 60 years ballless versus another 5 with ‘em? Buh-bye, buh-balls!
Our minds and spirits have the ability to second guess even the most clear and obvious decisions–let alone something huge like a double mastectomy.
October 24, 2007 at 12:34 am
Gee, do you think it’s a coincidence that the doctor who was the focus of the WSJ article is a man and is thus highly unlikely to ever be faced with the “remove one breast or two” decision?? Or that the female doctor featured in the story concludes it by saying, “I can’t recall a single patient who tells me they regret that decision”??? OF COURSE male doctors are freaked out by this decision — they value breasts more than life itself, as GUYS!!! And OF COURSE most female doctors are freaked out as well, for the same reason that they perseverate about reconstruction — they have been socialized into the Patriarchal Society of Physicians and adopt male attitudes about women’s bodies just to survive!
Sorry, I just had to rant — it’s been a BAAAAAD week all around….anyway, that’s my two cents. You did the right thing, Mary, absolutely positively, and don’t let anyone convince you otherwise.
October 24, 2007 at 4:47 pm
I think it’s great to rant about these matters. Is it Audre Lorde who wrote about the political and scholarly value of anger as a mode of knowing under conditions of marginalization… the uses of anger….?
October 27, 2007 at 10:02 pm
I think that ultimately, it’s about the patient having the power to choose. For me, I spread out all the facts about my previous history, my genetic info, my family’s history, and consulted 5 different specialists, and 4 of them said they weren’t comfortable with radiation alone, for the breast affected, or that the health of the breast that would have remained.
“Overly aggressive”…interesting term for a male researcher to use. I’m definitely noting a trend where the gut reactions are usually from males.
And what’s this little thing called peace of mind when you get to keep yer boobs, right?
November 18, 2007 at 3:24 pm
I had an incredibly well respected female oncologist express her (almost) horror that I had opted for mastectomy versus lumpectomy with radiation. She was actually pissed at the surgeon who did the “overly aggresive” proceedure. Yes, I had relatively large breasts at 38DD but removing a 3.2 cm chunk out of one of them would in no way have saved that breast. The surgeon, also female, did present me with all of options but in my mind the only thing that made any sense was to get rid of the whole thing and not need to worry about recurance in that particular area of my body. My only regret is that I didn’t have the bilateral done. My babies have been fed, my husband loves me, not my parts and honestly, I think even if I wasn’t able to make those statements my choice would have been the same. Babies survive quite nicely on formula and husbands need to deal with their own issues (sometimes on their own!). Hopefully we will never need to deal with such a diagnosis again but if there is a recurrance in the other breast…. Your writing is inspirational.