Supporting One Another

18Dec09

In my post about reconstruction, I didn’t get into the so-called controversy of prophylactic breast mastectomy (PBM). Well, after running across enough of comments from people who question a women’s decision to do PBM, I gotta vent some.

Here’s a common case: A woman decides to go public with her PBM to raise awareness of BRCA and breast cancer. The media puts out the story for public comment. A few people post some nicely thought out comments and many others post simply inane comments. Here’s a categorization of typical but real comments made to Lizzie Stark‘s interview of why she did a PBM:

Inane comment type 1: Breast cancer in BRCA carriers can be avoided by simple lifestyle choices aka “genes don’t matter!”

It is heartbreaking to see someone take such a drastic step. There is a mistaken belief that if a gene runs in your family it is written in stone that you will become the victim of that affliction. It doesn’t have to be that way. There is so much a person can do to prevent such an event from occuring. There are excellent methods of detoxing and nourishing the body (ie juicing with organic vegetable juice is just one of the many approaches) which can help to prevent
negative outcomes. It is also important to realize that most of us inherit the lifestyle of our family, a lifestyle (ie diet, exercise) that could be contibuting to poor health. I encourage this woman to see a naturopath or holistic nutritionist to explore her options before making her decision.

Inane comment type 2: Medical science is a lie, and gurus with baseless theories of health (and selling them for big bucks) can cure whatever ails you.

Yes we may be geneticly pre-disposed to have a certain condition, however the mind and soul are very powerful things, as well as our body has a chemical balance which we can modify by diet. I have heard that Cancer Cells will not survive in and Alkaline evironment. I have also heard most of us in todays society have bodies that are more acid, than alkaline (this probably due to our modern diet) and understand how certain green foods can make us more alkaline.

Inane comment type 3: I can give you the best medical advice even though I am not a doctor and know nothing about health care policies.

Unless she lives in Canada where such devices are not available to Canadians she could have a once a year PT/CT scan which would detect any cancer at a very, very early stage – certainly years before it could ever be detected by a mamogram. Then if necessary deal with it. With such an early warning method available on practically a walk-in basis at a cost of maybe $2000 a year and with next day or same day results the gamble may be the better deal.

I believe there are many more inane comment types, but perhaps I can save them for another day when I need a good laugh. Or maybe readers can contribute some of their favourites.

But to be a bit more serious, hearing these inane comments from family and friends is not funny at all. In a study of how women make decisions about handling their increased risk from BRCA, I found this sad note about a women considering PBM:

When she shared information about [PBM] with her sisters and her mother, she said they were “shocked” that she would seriously consider such a “severe choice.” One sister stated that she had heard horror stories from women who had gone through this surgery. The participant concluded that if she decided to have [PBM], she would not be able to tell her family about her decision until after the surgery.

Why can’t family members just support one another? As if the decision and surgery isn’t hard enough to deal with already. I can understand there are valid concerns from family members that their loved one is making an informed decision. But there’s a big difference between checking in with someone and making an unsolicited judgment of a person’s character or decisions. The former is something like: “How are you feeling about this?” Comments like “Why in the world would you do something like that?!” would fall into the latter category.

Honestly, I haven’t talked to many people about my concerns with BRCA because of this exact problem. I got enough to think about already and I really don’t want to add to that stress hearing someone tell me that “you shouldn’t feel…” or “what you need to do…” I sure hope the women’s family eventually came around after the surgery. We all need some support in times like these.

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One Response to “Supporting One Another”

  1. Hi, I’m reading through your blog now; much of it really strikes a chord with me, and this post especially. I remember reading the comments to this article a few months ago and getting SO MAD. I’ve had many friends tell me about the latest study they heard about the diet that prevents you from getting cancer or suggested lifestyles (and these are people who KNOW that I’m vegetarian and work out 6-7 days a week, though neither of those things particularly for health reasons), or I’ve heard “I have a family history of xxx disease, it’s not a big deal, you just need to be careful” (um, I have a family history of other chronic diseases, too, but that’s NOT the same level of risk as a BRCA mutation!), and someone actually told my mother that people like me who are getting mammograms and MRIs at such a young age are the ones at fault for our rising medical costs (my mother was so mad that she wants nothing to do with this person anymore). Her justification was that she has a family history of bc, too (um, her mother got bc in her 70s, not the same thing) and she’s not stressing about it.

    Like you said, what has happened to non-judgmental support? That’s all any of us can look for from someone who doesn’t know what it’s like to have a BRCA mutation. I don’t blame people for not entirely understanding my position, but I do fault them for making snap judgments.


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