Sunday, January 30, 2011

I live in a bubble

A BRCA bubble. I know a lot of women with BRCA mutations, and a lot of men too. I spend so much of my life talking with these fellow mutation carriers, doing research and writing, and doing work for FORCE that being a mutation carrier seems to me to be totally normal. But every once in a while I am reminded that to much of the world we are an oddity. Yesterday was one of those days.

We held an LA FORCE outreach meeting at my house with 43 women and two men (my husband and another spouse). As with all of our outreach meetings we had a amazing and powerful group of women. We have a cadre of women who have been regularly attending meetings for many years and who now have connections on many levels. One of these women came yesterday and brought her daughter and very new granddaughter and we were thrilled to be able to celebrate the the birth of this little one as well as the end of the BRCA legacy for her as our friend's daughter has tested negative for the family BRCA mutation.  Her relief that her daughter and new granddaughter do not have to face her high risk of breast cancer is cause for celebration in our group.

Our group is diverse. We have young women in their early 20s some of whom have already chosen preventive mastectomies and others who are managing their risk through the recommended surveillance regimens. Yesterday's meeting brought together women who were long-time breast cancer survivors with women diagnosed with breast cancer within the past 60 days; women who had never attended a support meeting and who had never met other BRCA-positive women with women who are veterans in the BRCA community; women who are contemplating surgical risk-management options with women who were less than two weeks post mastectomy and women who are many years post mastectomy; women who are contemplating surgical menopause with women who have entered surgical menopause as well as women who are ovarian cancer survivors; women who are starting chemotherapy next week with women who are on the other side of their cancer treatment; women who know their BRCA status with women who have not yet been able to face genetic testing, even in the face of strong family and personal history of breast cancer. Our community is a wonderful tapestry of individuals and stories with a depth and richness that can be found in few other places.

I am so enmeshed in this community that I take it for granted, which I should not. Several things happened yesterday that reminded me that I should not take our community or our meetings for granted. We had several newcomers to the meeting who were strongly moved by the experience. We had a woman newly diagnosed with a BRCA mutation whose family (outside of her strongly supportive husband) was not only unsupportive but also mystified as to why she would embark on this BRCA journey. She had not met any other BRCA-positive women before this meeting and was feeling very isolated. She left feeling empowered and connected. We had a woman who had been diagnosed with breast cancer in 1971 when, as she said, not only did the medical community not know anything about BRCA, they didn't really know how to treat a very young woman with very aggressive breast cancer. Her treatment, a radical mastectomy and a lengthy chemotherapy regimin, resulted in her long-term survival but was the kind of treatment that would be considered prehistoric by today's standards. This woman announced that she would be the group "grandmother" and expressed her amazement at this support group and its existence, the likes of which had not existed at the time of her first breast cancer diagnosis in 1971. We had two young women, both diagnosed with breast cancer and BRCA mutations  in the past couple of months for whom the experience of this group was very emotional.  We had two other women who had bilateral mastectomies and breast reconstruction within the past two weeks, they had chosen different reconstruction techniques, one with expanders and one with tissue, and this meeting was the first major outing post surgery for both of them.  Both said that despite the fact that they were recuperating and still in need of a lot of rest, they felt a strong need to be present and be part of this powerful group of women. They spoke about managing their current post surgical physical limitations with humor and grace and the women facing surgery within the next few weeks found they left far less scared of what lies ahead for them.

Seeing our meeting through the eyes of others, especially through the eyes of newcomers, renews my gratitude for FORCE and all that it does.  FORCE was founded 12 years ago by Sue Friedman because of her strong belief that no woman should have to face BRCA alone.  She was right.  We are living proof that she was right and we are all grateful to her for her vision in creating what has become to many a lifeline through the troubled waters of BRCA.

The other thing that renewed my appreciation for FORCE and for our LA Outreach group in particular happened at dinner later in the evening.  My oldest son is a very musical kid and is a member of the marching band, the concert band, the orchestra, the jazz band and the indoor drum line at his high school.   Looking at this list you would probably assume that he is a drummer, but he is not.  His first instrument is the trumpet, which he plays in marching band, and jazz band.  He has split his time in concert band between the trumpet and the French horn although will be dedicating his time wholly to the French horn in concert band from this point on.  He plays she French horn in orchestra and a variety of melodic mallet instruments in indoor drum line (don't ask me which ones as I will surely mess it up).

At dinner I sat next to the mother of another over scheduled music kid that I have known for several years.  She is a local gynecologist and I have long wanted to ask her about whether she has any BRCA patients in her practice.  I had not done so because although I am very open about my BRCA experiences, having written about them in Positive Results and on this blog, I tend to be shy about talking about BRCA to people in other parts of my life.  Last night I finally asked her if she had any BRCA-positive women in her practice.

"No," she said.  "It is pretty rare."

I said nothing.

Then she looked at me and said, "do you have it?"

"Yes," I said, "I do."

She then asked me what I had done to manage my risk and we talked briefly about my surgeries and about FORCE.

What struck me most about this conversation was her comment: "Its pretty rare."  Objectively I know she is right, outside the Askenazi Jewish community only roughly 1 in 500 people carry BRCA mutations.  But I had just spent a day with 45 other mutations carriers sharing stories of our families and our history and to me BRCA does not seem rare, or odd, or unusual.  This is my bubble, where BRCA seems normal.

Thanks goodness for FORCE.  Without it I would not have anywhere where I could feel normal in my BRCA skin.

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  1. Excellent post Joi. This will inspire me to set up a meeting with the newest Gyn in our hospital. Thanks so much to Sue Friedman for creating FORCE.

  2. Thanks Margaret. Hope you are well and thanks for all you do to spread the word.


  3. Chicago FORCE SistersFebruary 1, 2011 at 5:04 PM

    So poignant Joi. Such a mitzvah all of the wonderful support you and your fabulous LA team provide. And hats off again to the beautiful wonderful Sue Friedman who has provided us with this amazing forum to connect and express. Hugs, your Chicago FORCE Sisters

  4. Thanks Chicago FORCE Sisters! And thank you for all of your support/help and for all that you do with your wonderful group.

    I hope you are inside and warm and staying out of The Great Storm today!


  5. Joi, I often feel this same way - I have sooooo many BRCA positive women in my life - they're there every time I turn on my computer - how is it that we're an oddity, or rare? It sure does seem that way in our reality, does it? That's one of the great things about this support group we're all apart of - though we are part of a rare few with the BRCA mutation, we don't feel alone in it. And I think that is pretty cool! :)

  6. Funny, I have no BRCA people in my life. How would one go about trying to build a local support group? I've tried on FORCE, posting my location, with no replies.

  7. I am sorry you have not had any luck so far. While the FORCE message boards can be a great place to connect with other women, that is not always the case. And because many people only feel comfortable participating on message boards (not just the FORCE boards) if they can use a pseudonym and be relatively anonymous, this may make them more reluctant to respond to a post asking for a location.

    Here are my other thoughts:

    FORCE Outreach groups: FORCE has more than 60 local groups that hold face-to-face meeting several times a year. This is a great place to meet other women in your situation who live nearby.

    The FORCE conference, which is coming up June 23-25, 2011. This is a very powerful experience. There is nothing like being in a room with 500 other BRCA-positive women! Both a wonderful way to meet the top BRCA experts from around the world, ask them your questions (they are very accessible and approachable), see every kind of breast reconstruction invented to date, and connect with other women (and men) on every level.

    Ask you genetic counselor if she can put you in touch with other women. Privacy laws prevent her from giving you phone numbers but you can ask her to pass your name and number along to other women who she thinks might be willing to talk with you.

    Finally, Facebook. There are lots of BRCA groups on Facebook, with varying amounts of activity. The FORCE Facebook page gets a lot of traffic as does BRCA Sisterhood, although there are others. And please be sure to join the Positive Results Facebook page too. We try to post a lot of interesting stuff there, more than appears on this blog.

    Good luck,