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I have tremendous respect for both of these women. They are quite accomplished, each a brilliant writer and both living with a breast cancer diagnosis or two.
Last week, Peggy Orenstein wrote an OpEd for the NY Times, The Wrong Approach to Breast Cancer and offered further elaboration on her personal blog which includes the link to the original article. After Peggy’s piece appeared, Elaine Schattner wrote a piece for Forbes. It’s Not Just About Survival: Why Some Breast Cancer Patients Opt For Surgery On Both Sides.
Because I refuse to purchase a subscription to the paper, I must admit I may have only read an abbreviated free version of the article. I don’t think that is going to make much of a difference. My point is not to pick apart the article or to attempt to pull out phrases.
This is old news and I’m late to the conversation. Yet, I’m compelled to write a commentary of my own. There is no shortage of blogs and follow up articles after the OpEd appeared in the NYT. I also understand from what was written by Karuna Jaggar, there was quite a discussion on Breast Cancer Action’s Facebook page. It’s safe to say, this was one of those lightning rod things with Peggy Orenstein flying the kite with the key attached to it.
What do I think? Do you even care? I try to read in much the same way I hope I listen when others have something to say. It’s how I learn. Here is my take-away.
Peggy Orenstein wrote a factual piece based upon the scientific evidence that applies to most of the population. It seems clear, at least it does to me, that her message was this. When someone is newly diagnosed, it is incumbent upon the medical community and those of us who fancy ourselves as some sort of a voice within our community, to make sure a woman is making a decision with accurate information.
And yes, that was my entire take away from her article.
Our doctors have an obligation. Those who have big voices have a responsibility. It’s up to all of us to start the conversation by sharing: Here’s the evidence, backed by a ton of science. Sift through it. Do lots of talking, reflect, think about every aspect and then, and ONLY THEN, make your best decision based upon the information available at the time.
We are all different and what works for one of us may not be the right choice for another. I did not read Peggy’s article as a dig at those who chose to remove a healthy breast. I did not read Elaine’s article as a dig at Peggy. There are intangibles and there are other things to take into consideration when making such a drastic choice. I made that drastic choice in 2006.
It was the most difficult personal decision I have ever made. EVER. Bar None. Among some of the things that went through my head? My mom’s diagnosis in her 40’s. My own inconclusive BRCA results, not once, but twice, same test. Yes, BRCA1 and BRCA2 both returned variants of unknown significance in what I frequently refer to as a waste of perfectly good blood; blood, I might add, I can ill afford to lose given this anemia thing I was born with.
My cancer did not present as a lump. It was the astute eye of a skilled radiologist who saw a density. Yet, the density wasn’t his area of concern. There were three calcifications that looked highly suspicious. I’ve often wondered how long it might have been before my cancer was diagnosed if not for those calcifications. The calcifications had to be removed. His words? “I’m sure a breast surgeon would want these out to make sure it’s not cancer.” The density was an afterthought, a shadow, something that was playing hide and seek on three different sonograms by two different radiologists, an area that likely would have been monitored for change, except that I was already going for a biopsy. As long as I was already having one area checked, the decision was made to check both. The density was cancerous. The calcifications were insignificant.
The cancer was lobular in nature which means it was a slow growing cancer that tends to be sneaky. The prominent surgeon’s words would replay in my head as I pondered my choices. “We never catch these things this early.” An accidental finding and a cancer that, unlike ductal, does travel from one breast to the other, according to 2006 information, in 30% of the cases. Another piece of information to consider.
Radiation. If there was a second cancer in the same breast at any point in my future, the cancerous breast would have to be removed. I knew if I had to remove anything, something was being put in its place. Reconstruction for me, would be essential to my emotional well being. I learned how difficult it could be (again, using 2006 information) to reconstruct radiated skin. Remove one? Remove both? I went from zero to 95% certain that my choice would be to remove both breasts.
However, I recall with great clarity how I agonized to fill in those final five points and push my decision to one of certainty. Would I freak ever