Telling All of Our Stories

This is not the blog post I was planning to write this week.  But Monday morning my Facebook newsfeed was full of links to a wonderful Time.com piece featuring the portraits and stories of 15 women, BRCA-positive previvors and survivors, as part of their Breast Cancer Awareness Month (BCAM) coverage.   See it at http://healthland.time.com/2013/10/28/before-angelina-the-women-who-outplayed-cancer/photo/timewomen-19503-3/

Bringing attention to issues around hereditary breast and ovarian cancer and BRCA mutations – and supporting affected people and families – is one of my passions.  It’s why I volunteer for and donate to the national non-profit group FORCE, Facing Our Risk of Cancer Empowered.  And it’s a big part of why I write this blog.   So I was thrilled to see the Time.com piece.  The individual pictures and narratives were compelling and inspiring.  But looking through the gallery, I couldn’t help but realize that not every BRCA story was included.  And it is important to tell all of our stories.

My story was missing, as well as that of any previvor (BRCA carrier who hasn’t yet had cancer) who has chosen something other than mastectomy to deal with her heightened breast cancer risk.  (With the Breast Cancer Awareness Month emphasis, they didn’t focus on BRCA+ women like my mother who have had ovarian cancer or like me who have had our ovaries removed.  Perhaps that could be another story, another month.  I will focus here on breast cancer as well.)

All the featured women had done prophylactic bilateral mastectomies (PBM).

Do all BRCA+ women have mastectomies to reduce their risk?  If so, the piece would be representative.  Is it our only medically supported option?  If so, the story’s focus would make sense.

But the answer to both those questions is “No.”  Many women, the majority in fact, do not have a PBM but instead choose enhanced, high risk breast surveillance (often mammogram and breast MRI, alternately, every 6 months.)  Some women also choose chemoprevention with Tamoxifen or other drugs.  It is an individual choice, as Angelina Jolie said so eloquently in her piece about “My Medical Choice.”  And many women make medically valid choices to do something other than a PBM.  But their stories were not included in the otherwise impressive Time.com article.

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I am BRCA+ and am doing enhanced screening for my breast cancer risk.  (I had my ovaries and fallopian tubes removed, to reduce my ovarian cancer risk, because there is currently no good screening for ovarian cancer and I was done having children.)  But my story – and that of many, many women like me – was missing.

It appears, from researching various sources, that perhaps about 25-30% of BRCA+ women who haven’t yet had cancer choose to have a PBM.  Which would mean, obviously, that 70-75% of them don’t.  Regardless of the exact number, that is a lot of stories that were left out.

Comments on the Time.com piece on their website called out some other missing perspectives, noting that it didn’t include any women of color or any men.  Good points.  We want to include everyone’s story, of all colors and both genders.

BRCA-positive men, especially those with a BRCA2 mutation, have an increased risk of breast cancer as compared with the general population, with about a 6% risk of getting the disease.  (They face some other increased risks as well – prostate cancer, for example, but this story was focused on breast cancer so I am as well.)  It would have been great to have a man with breast cancer included in the gallery.

Several of the featured women were pictured with their daughters, with the implicit understanding that these daughters were potentially at increased risk because of their genetic heritage.   Daughters of  BRCA+ parents have a 50/50 chance of having their parent’s mutation.  But men can be BRCA+ too, and can pass their mutation down to their children.  For example, I have three sons.  They also have a 50/50 chance of inheriting my BRCA mutation.

So it was a wonderful article.  But it didn’t include all of the stories of those affected by hereditary breast and ovarian cancer.  And we can do better.

Why does it matter?  Why is it important?

First, humans share a need to be seen and understood.  We need to include everyone in the BRCA community in such a story.  We don’t want anyone to feel excluded, left out, or somehow “wrong.”

Secondly, we need to make sure that women with a family history suggesting hereditary breast and ovarian cancer, but who haven’t yet been tested for a BRCA mutation, know that they have options.  Choosing to be tested doesn’t mean that you must automatically have a mastectomy.  We don’t want women who know in advance that they wouldn’t want to have a PBM to feel that therefore there is no point for them to be tested.

Thirdly, we don’t want women to feel pressured to choose a PBM, overwhelmed by the weight of the media attention to that choice.  Both choices are medically appropriate and it is a very individualized decision, dependent on many personal factors.

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The experience of high-risk breast screening is not as media-genic or dramatic as is prophylactic mastectomy.  Having a PBM involves a limited time period and a certain number of defined events.  Surveillance is a long, continuing string of undramatic moments – for me, it is mammogram and ultrasound in December, breast MRI in June, with occasional false (so-far) positive findings and attendant follow-up biopsies.  Every year, into the future.  And chemoprevention for me is taking a Tamoxifen pill every day.  Not as dramatic as a PBM, but I am a previvor too, and part of the BRCA community as are the many others who have not chosen mastectomy.

Let’s tell all of our stories.  Perhaps we need a sequel…

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Previvor Guilt

“I had breast cancer almost twenty years ago.  And I have some survivor guilt – I know a lot of women who have died from this illness.  But I lived.”  A new acquaintance said something along those lines to me a few weeks back, at a lovely outdoor music event here in Austin.  Walking home later through the busy city streets, I felt an upwelling of emotion.  But it wasn’t survivor guilt I was feeling.

 

It was Previvor Guilt.  And certainly not for the first time.

 

“Previvor” is a term coined by the non-profit group FORCE (Facing Our Risk of Cancer Empowered) to mean a person who is living with an inherited predisposition to cancer, but has not been diagnosed with cancer.

 

I am a previvor.  I have a BRCA2 mutation and have not (up to this point) had to hear the words, “You have cancer.”  I’ve never had chemo or radiation or surgery to remove a malignant growth.

 

And yes, I do have some Previvor Guilt.

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I feel a guilty sadness that my mother was born with the identical DNA sequencing error on the same gene, but that it has had such a relatively different impact for her.   First breast, and then ovarian, cancer.  Didn’t know about the BRCA mutation until afterwards.  I feel so sorry – and so grateful – that her cancers led to her genetic testing and to mine as well, and thus to the knowledge that enables me to take steps to reduce and monitor my risk.  Previvor Guilt.

 

I feel terrible that I may have passed this mutation down to any of my three sons. (Because yes, men can carry and pass on a BRCA mutation.  And BRCA2 mutations bring some cancer risk to men, though not at the same level as they do to women.)  Of course I don’t blame my mom in any way for giving me the mutation — but  somehow feel guilt myself for possibly doing the very same thing.  I didn’t say this Previvor Guilt thing was rational…

 

I feel so bad for my friends and acquaintances who have experienced breast and/or ovarian cancer firsthand.  Most cancer isn’t hereditary but is instead sporadic.  They generally didn’t have the chance that I’ve had, to take preventive action and to be closely monitored.  It isn’t fair.  And I feel Previvor Guilt.

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It is Breast Cancer Awareness Month, of course, so stories of survivors are everywhere.   And I feel guilty to be a previvor instead.

 

Which is one reason I have been found my involvement with FORCE and other BRCA groups (those Facebook groups again – see “Help Wanted” below) to be so empowering and encouraging.  There I’ve connected with many women who are in the same situation that I am.   But even so, many women learn about their BRCA status and come into the BRCA community after receiving a cancer diagnosis – like my mom.   And I feel Previvor Guilt.

 

So I’m working through my guilt.  I’m trying to let it go.  It doesn’t serve any good purpose, I know.   As I said, this really isn’t a matter of rational thought.  For me, yoga helps.  And walking the Town Lake Trail.

 

And I can work through my Previvor Guilt by supporting cancer patients and survivors.  Both in their individual journeys with cancer, and more globally by supporting research to understand the causes of cancer and to find better diagnostics and treatments.  And finally, by doing my best to help spread the word about hereditary breast and ovarian cancer and BRCA mutations, so more affected persons can become previvors too.

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