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…

Two and a Half Hours

I spent an hour and a half last week watching “Project Runway.”  As an unapologetic fan, that was a good use of my time.  Really, it was.  My husband and I also watched the most recent hour-long episode of “Grey’s Anatomy.”  Yes, I still love it.  And he likes it enough to stick with it (and me).

 

But for some reason, I was at first reticent about watching the following two videos on my computer, in part due to the fact that they together total about 2 ½ hours in running time.  Who has enough time for that?  Luckily, as it turns out, I do.  And these videos will undoubtedly stick with me much longer than will either of those guilty pleasure TV shows…

 

First, a symposium at New York’s Central Synagogue, ably moderated by Barbara Walters, about hereditary breast and ovarian cancer in the Jewish community  (http://www.youtube.com/watch?v=eQIr6B3UcjA&feature=youtu.be&desktop_uri=%2Fwatch%3Fv%3DeQIr6B3UcjA%26feature%3Dyoutu.be&app=desktop).  It is longer, at 2 hours.  But it went by quickly.  And the messages are valuable for everyone, not just persons with Jewish heritage.

 

Secondly, a Breast Cancer Awareness Month (BCAM) interview with Gayle Sulik, Dr. Susan Love and Lisa Bonchek Adams on “The Stream” on Al Jazeera America, focused primarily on pink marketing, or the marketing of merchandise with a percentage somehow “going to fight breast cancer.” https://thinkorbit.app.box.com/thestream101113

 

Watching these videos, two women made a big impression on me.  Barbara Walters gracefully moderated the “Knowing Saves Lives” panel with her calm, informed, interested presence.  And she has a personal stake in the matter.  Her sister had breast cancer and ovarian cancer, dying from the latter over 20 years ago, and she herself had her ovaries removed to decrease her risk of ovarian cancer. (She didn’t say whether or not she has had BRCA testing.)

 

But the most powerfully resonant moments of all 180 were spent listening to Lisa Bonchek Adams on The Stream interview.  About 6 years ago, she was a young mother of 3 recently diagnosed with breast cancer.   Last year she learned it has metastasized to her bones and lymph nodes.  She has stage IV cancer.  But she has continued writing and speaking.  I felt lucky to hear her.  In this setting, she spoke for the 30% of patients whose breast cancer metastasizes.  Her stake couldn’t be higher.

 

What can people do to be supportive and “aware”?  Lisa suggested ways other than giving money.  She suggested being up to date on your vaccination and flu shots.  Helping the immunocompromised by not being around them when sick.  Donating blood and platelets, always needed by people in cancer treatment and not just those who have suffered trauma.  Following blogs and staying informed.

 

Breast Cancer Awareness Month at its best.

 

And 2 ½ hours well spent.

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Here’s a few take-home messages, from my viewing.  There’s a lot more there – 2 ½ hours between the two, after all, but this may whet your appetite to watch either or both yourself.  And if you don’t have the requisite 180 minutes, you’ll at least get a taste.

 

Central Synagogue Symposium with Barbara Walters — “Knowing Saves Lives”

  • More women lose their lives to ovarian cancer than to any other gynecological cancer.
  • The rate of BRCA mutations is the general population is 1/400 – 1/600.  In people of Ashkenazi Jewish heritage, the rate is 1/40.
  • Anybody with ovarian cancer is now considered a good candidate for BRCA genetic testing.
  • 1/3 of ovarian cancer patients of Jewish heritage carry a BRCA mutation.
  • BRCA+ women who take oral contraceptives may reduce their risk of ovarian cancer.
  • Only 25-30% of BRCA+ women in the US who have never had cancer (often called “previvors”) have a prophylactic bilateral mastectomy (PBM) to reduce their breast cancer risk.  This rate is higher than in the rest of the world.
  • The alternative to PBM for previvors is enhanced screening, with annual mammograms and breast MRI’s, often on an every 6 month schedule.
  • The choice between enhanced screening or PBM by a particular woman depends on individual factors, including risk tolerance.
  • Previvors who have completed their families and reach about age 40 should consider surgery to remove their ovaries and fallopian tubes, which will reduce their risk for both ovarian and breast cancer.

 

The Stream Interview – with Gayle Sulik (author of “Pink Ribbon Blues” and founder of the Breast Cancer Consortium), Dr. Susan Love, and Lisa Bonchek Adams (blogger at http://lisabadams.com/ who is living with metastatic breast cancer)

  • Pink marketing is often really just visibility of the breast cancer/ pink brand without any real consciousness-raising.
  • The often-celebratory mood of Breast Cancer Awareness Month (BCAM) emphasizes survival and “winning the battle” with breast cancer.  Reality is more complex.
  • Lisa – awareness should be education, not just pink commercialism.  Many don’t know the facts.  Even if breast cancer is found early, it can metastasize.  A patient can do everything “right” and still have their cancer metastasize.  30% of breast cancers become metastatic.  This reality is lost in the pink, in the focus on positive outcomes and survival and moving forward.
  • Dr. Love – there are collateral damages from breast cancer treatment.  Chemo brain, numb toes, pain from surgery, lymphedema.  Even if the patient is cured, there is a huge price.
  • Gayle – companies often jump onto the pink marketing bandwagon.  Some donate part of the profits from pink merchandise, but often the profit margin is much higher and they benefit more than the charities.
  • Questions to ask before buying a pink/ breast cancer related product – where is the $ going, what % is donated, and how will the money be used.
  • Lisa – instead of buying these pink products, you can take your money and give it directly to good organizations doing important research.
  • Gayle – breast cancer as culturally perceived proxy – by supporting the effort against breast cancer, it is seen as supporting women’s health.  But other important issues can be overshadowed.  Ovarian cancer, for example, is very significant for women’s death rates.  And both heart disease and lung disease kill more women than does breast cancer.  And we need to remember that  men can also get breast cancer..
  • Dr. Love – Currently, we have better treatments and people are living longer than in the past, both with breast cancer generally and with metastatic disease.  We’re learning about the biology of breast cancer.  Finding a cause would be the ultimate home run…

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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Help Wanted

Learning that I carry a BRCA mutation, and thus subsequently am at high risk for both breast and ovarian cancer, brought a maelstrom of emotional baggage along with it.  Shock and confusion, in the early days.  Being me, I plunged into research, tying to learn everything I could about this topic.  Books, websites, materials from the genetic counselor…  That in turn resulted in emotional and mental overload.  I often fell into the dreaded downward Google spiral, overwhelmed by too much information flowing over me to properly process what I read.   Turning off the computer, the statistics and questions still ricocheted through my exhausted brain.

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Looking back from my perspective now, three years later, what helped me get through that challenging time?  Other than the obvious (and very important) support of family and friends, that is.

First, talking with a genetic counselor was crucial and saved me from myself.  When I needed a respite from my over-active mind, I focused on their words and advice.

The genetics counselors said that for me – then 47– surgery to remove my ovaries and fallopian tubes (BSO) was the immediate priority.  So, focus on getting that organized and the rest could come with time.   Having just accompanied my mother on her wrenching ovarian cancer journey, seeing first hand the rigors of her treatment and recovery, they didn’t have to say much to convince me.

For my breast cancer risk, I had choices.  Either a prophylactic bilateral mastectomy (PBM) or a high-risk screening program.  Both were medically valid.  Both had pros and cons.  (More about the details of this decision to follow in a later post.)  I decided to do enhanced surveillance (breast MRI in June and mammogram/ultrasound in December.)  The genetics team also mentioned the possibility of chemoprevention, with tamoxifen or a similar drug, but I put that to the side for the time being.

Secondly, the genetics team referred me to two tremendous sources of support – a therapist who had experience working with BRCA issues, and FORCE (the national non-profit that supports individuals and families affected by hereditary breast and ovarian cancer.)

I met weekly with the therapist over about a five-month period.  I’d never had any therapy previously – perhaps I could have benefitted from it at times, but had never actually made it happen.  My experience was so positive that I would not hesitate to access similar help in the future when I feel the need.  Getting professional help and taking the time to process all the issues that come with a BRCA+ test result was tremendously empowering.

And last but not least, FORCE…  The website at http://www.facingourrisk.org/ provided a wealth of information.   To this day I refer to it often.  There are message boards where people share their questions and stories and support one another (though in the early days I found I could only dip my toe into those waters – if I went too far or too long it was overwhelming for me).  There are local FORCE support groups.  I signed up to get emails from the San Francisco Bay Area group, though with our relocation to Austin I never ended up connecting with them in person.  Several years later I attended the FORCE national conference with my husband, where I learned an incredible amount about state-of–the-art research results as well as connecting with many women facing similar issues.

Several years later into my BRCA journey, I discovered Facebook groups where I have found virtual – but very real – support.   I am grateful for groups like BRCA Sisterhood, Previvors, Beyond the Pink Moon, Learn About HBOC, and BRCA Advanced 101 & 102.

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Now, three years and three months after getting the paperwork stating that I carry a “deleterious BRCA mutation,” I am far from the constant state of mental and emotional overload that I once inhabited.  Concerns and issues still arise, certainly, and this aspect of our genetic heritage will continue to affect me and my family into the future.   But I have made it through the initial days of wondering how – and whether – I could cope.

I know many women are out there, walking a similar path.  But sometimes the voices of those doing high-risk breast surveillance get lost in the shuffle, overshadowed by the complicated issues presented by the PBM option.  And sometimes the key issue of ovarian cancer risk is forgotten by the media, in discussions of this “breast cancer gene.”   So now I hope to provide the same support and informational help to others that I have benefitted from, in this land of “Elevated Risk.”

Timing is Everything

This is National Hereditary Breast and Ovarian Cancer (HBOC) Week, from September 29 – October 5, a bridge between the lesser-known role of September as Ovarian Cancer Awareness Month and October’s well-established position as Breast Cancer Awareness Month.

And, totally coincidentally, this week also marks my first blog post here at Elevated Risk.  I didn’t plan it that way – nothing so organized, it’s just when I got things ready to go – but it is almost eerily appropriate that these two events coincide.  Because if it weren’t for HBOC touching my family, I wouldn’t be writing these words.

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Timing, it seems, is everything.  In more ways than one.

We learned about our familial BRCA mutation because at age 69 my mother got breast cancer – early stage and small, treated with lumpectomy and radiation – in October of 2004.  Five years later, at age 74, she was diagnosed with stage IIIC ovarian cancer.  Mom had a massive abdominal surgery followed by six chemo sessions.  (Thankfully, and amazingly, she has been in remission since the conclusion of that treatment.)

As a small family we had no other cases to go on but those two cancers in one patient were enough of a red flag to get her tested for a BRCA mutation, after we pushed her doctor to do so.

In the early summer of 2010 she was identified as BRCA2+.

But that knowledge came too late for her in many ways – she’d already gotten two cancers.  Her medical care and screening going forward could be informed by the knowledge of her BRCA status, but so much damage had already been done.

My timing was luckier.

In July 2010, age 47, I learned that I too was BRCA+, having inherited Mom’s mutation.  But I was in a completely different position than she had been.  I was a previvor, a term coined by FORCE (the national non-profit that supports families and individuals affected by HBOC) to mean people living with a high risk of cancer but not yet diagnosed with it.

I would give anything to be able go back in time to 1982 – the year my mom was 47 – and warn her, head off the medical storm that was brewing inside her genes.

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I could take proactive steps in a way that my mom was never able to do.  I got my ovaries and fallopian tubes removed right away.  There is no good screening test for ovarian cancer and I was finished having kids.  My pathology report found a precancerous spot on one of my ovaries, but it never got a chance to develop into anything more.   And I had choices about how to handle the risk that I would develop breast cancer: either prophylactic mastectomy (PBM) or enhanced screening.

I chose the latter, so I get a mammogram every December and a breast MRI every June.  It is not prevention, but any breast cancer I get will hopefully be early stage and treatable.  Today, many scans and several biopsies later, so far no cancer.

The BRCA1 gene was discovered in 1990 and BRCA2 in 1994.  So even just 20 years ago, there was no BRCA test for somebody concerned about a possible inherited cancer risk.   My unknown ancestors or yours might well have noticed a disquieting pattern of breast and/or ovarian cancer but had no way to learn more.  We do.  And my children and potential future grandchildren – and yours – will benefit from all the advances yet to come.

It’s really all about the timing.