A Scarf of Fine Silk

Let it be torn, let it be broken, it is still a scarf of fine silk. ~ an Assamese proverb.

I’ve been thinking about beautiful things, about fine scarves, about Angelina Jolie.

How could I not? It’s impossible to escape. I spent the past month in India, mostly in remote rural areas, mostly completely cut off from the outside world. And yet, I knew about Angelina’s breasts. The moment I arrived in an airport (and had access to the internet again), breasts threatened to eclipse terror, border disputes, and unemployment. In the days since I’ve been home and struggling to get over my jet lag, I’ve been playing catch-up with all the comments and commentary.

I, of course, have been shocked by all the second-guessing of her decision – especially by people who have never had to make an impossible choice like that. Anyone who has had to enter this universe of cancer knows that, once you’re here, there are no good choices. All options suck! She’s a woman, she had breasts, she had information, she made the best decision for her – of all bad choices.

But it does raise topics that should be discussed.

* She had a clear family history that made the genetic testing appropriate. The BRCA test is not for everyone. It’s not an appropriate test for everyone who’s ever been nervous about getting breast cancer. I’ve had the test. I had it done to help me make some choices about my treatment, and to give my beloved nieces more information. Because their aunt had cancer in her 30s, they are forever at a higher risk. I wanted to give them as much information as possible about that risk.

* It’s expensive. Insurance doesn’t necessarily cover testing (it did in my case). She can afford a $3000 test; a whole lot of women and men who could use the information gained from that test cannot.

* She had access to great medical care and careful, thorough counseling. This, unfortunately, is not true for a whole lot of people in this country. Counseling is a vital component in the BRCA test. There is very little in the results that is totally clear. If you are positive – that’s clear. But if you are negative, that doesn’t mean the rest of your family is negative, just you. And there are often other genetic markers that show up in the results. Researchers recognize some anomaly, but they don’t yet know what it means. The results are complicated. It is so important to have a good counselor who can explain it all and answer all your questions. But even with the best counseling, there is usually a very big grey area.

So Ms. Jolie got good counseling. I remember another news story about BRCA testing from a few years ago. I listened in horror to a story about a woman who was so traumatized by watching her mother-in-law die of breast cancer that she had genetic testing done. The results came back; she was negative, but she did have a number of other unclear markers. Based on that result, she had a bi-lateral mastectomy, and (if I remember correctly) had her ovaries removed as well. In addition, she was trying to convince her teenage and college-age daughters to do the same. Everyone should, but not everyone does have access to careful, thorough counseling and medical care.

In my case, I was negative, but there were some markers of unknown significance. Because my counselor had spent a lot of time with me before the test and after I had the results, I was able to make good use of the results. Because I was negative and therefore did not have a higher risk of ovarian cancer, I chose to keep my ovaries intact. My nieces are not at even higher risk for developing breast cancer, but they still know they must be vigilant.

* Making a decision to remove part of your body is a big decision – and it should be. No one makes it lightly. Yes, we are so much more than our breasts. Yes, we can and do go on and live vibrant, happy, productive lives (if we want). Yes, we are like a scarf of fine silk. But having body parts cut off is a big deal. And it continues to be a big deal. It’s a big deal for the rest of our lives.

* All surgeries have consequences. We have mastectomies because we must, or we should, or we’ve decided it’s our best option. But there are risks. It’s major surgery. Because of the type of reconstruction I chose, my surgery was 10 hours. That’s a long time to be under anesthesia and the knife. After, we may be at higher risk for lymphedema – swelling of the arm or trunk for which there is no cure. We may suffer loss of feeling, stiffness, frozen shoulder, tightness, loss of range of motion, weakness, and pain. Some of these things can get better with work and with time, but they don’t really go away completely. (that’s why I put so much emphasis on upper body work, especially the shoulders and upper back)

And those are the successful surgeries. There are very many surgeries that do not go so well – failures, infections, ruptures, more surgeries, more, more. I know of too many difficult, painful failures.

Some of the discussion of Ms. Jolie’s choice sounds like she had a mole removed. It’s so much more than that.

I had no choice. I cannot really imagine having to make the choice that she did. It seems like an impossibly difficult one. I wish the very best for her, and for anyone in that position. I am sure she made the best decision for her and her family. I wish that everyone could be given the tools to make as good a decision.

Julie

This entry was posted in brca gene, breast cancer, genetic testing, mastectomy. Bookmark the permalink.

2 Responses to A Scarf of Fine Silk

  1. Racn4acure says:

    Well said Julie. It must have been a very difficult choice for her. My sister in law had breast cancer and ovarian cancer before she was 40, and learned a decade plus later that she has the BRCA-2 gene. Stay well. Art

  2. gillian says:

    Once again a thoughtful and thought-provoking post. Thanks.

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