Trying To Be Positive

Although I’ve been silent recently here on Elevated Risk, that doesn’t mean I haven’t been writing and thinking about what it means to live within the context of hereditary breast and ovarian cancer. I’m excited to let you know that my first novel, Trying To Be Positive, is now available.

In Trying To Be Positive, Jill Allen’s comfortable suburban life turns upside down when she learns she might be BRCA positive. Faced with the risk of breast and ovarian cancer as well as unexpected marital challenges, Jill embarks on a journey of self-discovery that takes her from California to Paris and back again.

Jill’s story is not my story. This is definitely fiction, something my real husband especially likes me to emphasize given the bad behavior of Jill’s husband. And it’s not all about BRCA issues, though that certainly presents many of the major plot points. Ovarian cancer is often overshadowed in the BRCA world by the issues of breast cancer and mastectomies and I wanted to shine a light into that area too. And above all I wanted to write an entertaining piece of women’s fiction.

For more, see http://www.amazon.com/Trying-Be-Positive-Linda-Grier/dp/1514276046/ref=sr_1_1?ie=UTF8&qid=1445991738&sr=8-1&keywords=trying+to+be+positive

Apologies for duplication, to those who also received an email about the book or have already heard about it on Facebook. Thanks to all for your support.

The “Bad” Waiting Room

The Breast Center where I get my mammograms (and ultrasounds and breast MRI’s) has two waiting rooms.  Most women never see the second one or know that it exists.  They are directed to go left when they enter the hallway from the reception area, go into the second room on their right, change clothes, have their mammogram, wait until they are told they can leave, and get a letter in the mail several weeks later saying “all was fine, come back next year.”

 

But there is another waiting room as well, to the right rather than the left, down another hallway.  I first discovered and inhabited this secret room maybe 8 years back, when I got a phone several days after my mammogram instead of the expected letter.  They needed me to come back, for another view.  Microcalcifications, which can be suspicious under certain circumstances and which were the harbinger of my mother’s breast cancer detected a few years earlier, meant more pictures were needed.  Then a biopsy, which was thankfully okay.

But I’d been introduced to the other waiting room by then.  Where you go if you are recalled for more scans, or when you have a suspicious lump, or (like me now) if you are BRCA+ or otherwise at high risk for breast cancer.  I’ve spent a lot of time there, waiting for my mammogram to be read and to be called in for my ultrasound, or for the biopsy room to be ready.  And I will likely continue to do so, into the future.  Generally only once a year, because the breast MRI machine is in another part of the building, where I go every June.

 

Not sure what the center employees call the secret, secondary waiting room – but last week, when I was there for my regular December screening appointment, the shaken but chatty woman who sat to my left for a while (never got her name, we’ll call her Alice) called it the “bad” waiting room.  She had a point.

 

And she was very anxious, perhaps contributing to her chattiness.  I’ve been there enough that I am fairly blasé about the experience, on the surface at least.  I still was feeling some butterflies, wondering if this was the time they would see something bad, or at the very least something that MIGHT be bad and require further examination.  This time, happily, was completely fine.  No issues, come back in June for my MRI as planned.

 

But Alice was upset.  She’d said, “So, this is the bad waiting room, huh?” when the receptionist had shown her in.  And she wanted to talk.  I made eye contact and that was all it took.  Alice was a fit, chic 60-something woman, with shiny hair and a tattoo on her wrist.  She’d had her regular mammogram the week before Christmas and – for the first time ever – gotten a call to come back for more views.  “I know false positives are very common.  I know it is probably nothing.  But I really can’t deal with it being something bad, right now…”

 

Her husband had just finished radiation treatment for tongue and throat cancer.  Her daughter has some mental health issues and hadn’t coped well with her father’s illness.  “She was in the hospital for in-patient care for a couple weeks.  She’s just getting a bit better now.  I didn’t tell her about this appointment.  I really need this to be a false alarm.”

 

Several other women came and left during my tenure in that bad waiting room last week.  Most were quietly self-contained, checking their phones or reading a book or magazine, such that their internal feelings remain unknown.  But there was another woman, maybe mid to late 50’s, who was obviously distressed.  Her frosted blond hair pulled up in a ponytail, she clutched an expensive-looking bag (Kate Spade? Birkin? Not my area of expertise…) and spoke hurriedly into her cell phone, sotto voce.  We’ll call her Ann.  And though she spoke softly, that is a small room.  I couldn’t help but hear every word.

 

“I came for my regular appointment, like 3 hours ago.  And they keep doing more pictures.  They seem to be looking at my left breast, over and over.  Now they want to do an ultrasound.”  She was talking to a woman – maybe a mother or sister or friend – and apparently her husband as well, who was stuck in traffic somewhere.  “No, don’t come here now.  I don’t know how long I’ll still be here.  I’ll see you at the house.  I’m just freaking out.  This was supposed to be a quick appointment, I was going to be home hours ago…”

 

Ann was on the phone for a long time, circling back over and over the situation she’d unexpectedly found herself in.  I felt my tension ratchet up as I unavoidably overheard her side of the call.  I was prepared to talk with her, if it looked like it would help, but she never paused long enough between calls for me to try.

I don’t know the end of their stories that day.  Whether they left, like me this time, with an “all-clear and come back for your next regular screening” or if it was the beginning of something more challenging, a biopsy and whatever it might show.  I’ve thought of both Ann and Alice several times since then, sending good thoughts their way, whatever they may be dealing with.  As well as to the subsequent inhabitants of that bad waiting room…

Her BRCA+ Story: Joyce Wadler

Joyce Wadler’s books, “My Breast” and “Cured,” detail her experiences with breast and then ovarian cancer.

With her initial cancer, at age 43, she didn’t know she carried a BRCA mutation.  At that time, in 1991, BRCA1 and BRCA2 genes had not yet even been identified.   By the time she was diagnosed with ovarian cancer 4 years later and went through surgery and chemotherapy, the discoveries had been made and she was tested.  And sure enough, she was positive for a BRCA1 mutation.

These books are well worth reading, whether or not you are personally affected by hereditary breast and ovarian cancer.  Ms. Wadler is a talented writer, having been on staff at the Wall Street Journal for many years, and tells her story with wit and even humor (referring to herself as the Middle-Aged Mutant Jewish Writer, for example.)

Those of us with BRCA mutations each have our own individual story of how our life has been affected by this genetic error, played out in illness or by the knowledge that we harbor it.  Each story is specific and different, but certain echoes of commonality remain.  Ms. Wadler’s story is her own and very different from mine, but I found several parallels and connections.

She got breast and then ovarian cancer, as did my mother.  Ms. Wadler was 47 when she got ovarian cancer and thereafter discovered that she carried a BRCA1 mutation.  I was 47 when my mom got ovarian cancer and we subsequently learned that she and I both have a BRCA2 mutation.  Ms. Wadler has one of the three most common mutations found in persons of Ashkenazi Jewish background, also know as founder’s mutations.  We have a different mutation, but also one of those three.

Some aspects of these books are rooted in the particular time in which they occur.  As she writes in “Cured,” “Things always change in Cancer Land.”  Medical knowledge and practice have changed and progressed since these events occurred, so some of the details are no longer current.  The common practice of using the internet to research medical issues, for example, would have simplified much of her experience.  But these two volumes are not just of historic interest.  They are fresh and compelling and (despite the darkness) funny.

Neither book is completely easy to read (though both are short) in that she details her treatment and her resulting physical and emotional traumas.  But the title of the second book, initially published as a serial in New York Magazine in 1997, gives well-deserved hope – you know she will likely be okay in the end.  And she still is.  I quickly googled her and she is still alive.  18 years after her ovarian cancer diagnosis and 22 after her breast cancer diagnosis.

Joyce Wadler’s BRCA+ story is her own.  I am glad she chose to share it with us in these two memoirs and highly recommend them.

Am I Glad I Know?

With Thanksgiving still resonating, one week out, I find myself pondering matters of gratitude and thankfulness.  In the context of the BRCA mutation and elevated risk, it boils down to this question – “Am I glad I know?”

 

Four years and three months ago, we had no clue that anyone in our family might be affected by hereditary breast and ovarian cancer.   Then my mother (who had already had breast cancer) got ovarian cancer.

 

Fast forward ten months.

 

On a Thursday, I didn’t know that I carried a BRCA2 mutation.  The next day, Friday, I did.

 

So – can I say I am thankful that I know?

To state the obvious: if I could magically repair this mutation, I would do it in a heartbeat.  I am not in any way glad that I and others in my family are BRCA+.   But the genetic error at issue was there – in me, my mother, possibly other family members – from our conception.  That is biology.  And given that fact, I would rather know than not know.  So yes, I am thankful.

 

I am grateful for the scientists and medical doctors who did the research leading to these genetic tests and who continue to explore the implications of these mutations.   The BRCA1 and BRCA2 genes were only discovered 1994 and 1995.  Much has been learned since then but there is still a long way to go.

 

Knowing – for me, for our family – is better than not knowing, here.  Though some days I might be tempted to say the opposite, almost wishing the to be blissfully unaware.  Those moments though, however heartfelt, are brief and fleeting.

 

Because knowledge is power, as Francis Bacon famously wrote way back in 1597.

 

For my mother, knowledge of her BRCA status means that her screening can be appropriate to her risk.  And if she were ever to have a recurrence of ovarian cancer, her treatment plan could take it into account.  Certain drugs, for example various PARP inhibitors currently under study, seem to be especially effective for BRCA+ cancer patients.

 

For myself, this knowledge means that I have been able to take steps that will hopefully mean I will never get some cancer I might have otherwise gotten.  And that I am doing appropriate, intensive screening which may catch any breast cancer, if it does occur, at a very early stage.

 

For the next generations, knowledge means the opportunity to be tested and take appropriate steps, if needed.  With the hope that ongoing research will mean new and better choices than the ones we have had so far.

 

And it is why I suggest that anybody who is concerned about their family’s pattern or history of breast and/or ovarian cancer talk with a genetic counselor and get whatever testing might be recommended.

 

So yes, I am grateful to know that I have a BRCA mutation.

 

Because knowledge is power.

 

Fear & Tamoxifen

“I have a BRCA mutation and haven’t had cancer.  I’m taking tamoxifen preventively – hoping to reduce my risk of getting breast cancer – and it isn’t horrible.”

Those two sentences are true for me as I write them today.  Four months ago, when I was trying to decide whether or not to go a on a five-year course of tamoxifen, I would have loved to read or hear something along those lines.  Now, I hope that my experience with chemoprevention and tamoxifen might be useful for some other woman out there wrestling with the same question.

Obviously, my experience is only that – mine.  Each BRCA+ woman has her own constellation of health status, emotional considerations, and preferences that will all feed into her decisions about preventive and screening measures.  I am not recommending tamoxifen for anybody else.  But for me it was a good choice, one I’m glad I made.  And despite all my fears, so far I feel fine.  Good, even.

I was very hesitant about – no, let’s be honest, I was scared about – taking this medication.  And I could find very little first person experience from women like me, as opposed to those taking tamoxifen as part of their cancer treatment.  And what I read or heard about tamoxifen from the latter group made me very nervous.  Okay, afraid.

But for me, it has been okay.  I don’t feel terrible on tamoxifen.  And I do believe I am helping reduce the chance that I will one day get breast cancer.  There is no guarantee, certainly, but for me it was a good decision.

Three and a half years ago, when I was first identified as BRCA+, the genetic experts I consulted with brought up the possibility of chemoprevention with tamoxifen.  But they didn’t argue for it strongly and I had other more pressing issues to deal with at the time: scheduling surgery to remove my ovaries and fallopian tubes, which meant premature menopause was coming, plus deciding whether to do prophylactic mastectomies or (my ultimate decision) high risk, enhanced breast screening (MRI and mammogram/ ultrasound).

The paperwork from those initial medical visits mentions the potential use of tamoxifen, but I set the question aside for then.  I needed to triage.

Nearly three years later, the U.S. Preventive Services Task Force came out with new recommendations supporting the potential use of tamoxifen and similar drugs for reducing the risk of breast cancer in high-risk women.

http://www.uspreventiveservicestaskforce.org/uspstf13/breastcanmeds/breastcanmedsrs.htm

It was covered in the media (see http://www.nytimes.com/2013/04/16/health/breast-cancer-drugs-urged-for-healthy-high-risk-women.html?ref=preventiveservicestaskforce) as well as in breast cancer blogs and facebook groups, etc.  So I couldn’t help but again confront the question – should I take tamoxifen?

Now fear comes back into the story.  I did a little research and found a lot of information about women having bad experiences with tamoxifen – hot flashes and vaginal dryness, to start – plus a daunting list of serious potential side effects, including an elevated risk of blood clots, strokes, cataracts and endometrial cancer.

I was worried about all that, but those new recommendations left me wanting to at least explore the question.  So I made an appointment to talk with Dr. K, the one with expertise in managing high risk patients.  I was shaky when I hung up the phone after talking with the scheduler.  But I was just going to talk to Dr. K.  I wasn’t committing to take any action beyond that.

Fast forward to the appointment.  I didn’t cancel it, though I’d considered doing so, several times.

Dr. K was pretty clear.  For me, the potential benefits of tamoxifen outweighed the risks.  She recommended that I do it.

It is a very individual matter, weighing the costs and benefits, both objectively as far as the patient’s particular health issues and also subjectively as far as the patient’s comfort with the medication.  Obviously, if you are wondering about your particular situation you will need to consult with a physician.  It is a balancing act.  My balance wouldn’t necessarily be the same as yours.

On the benefit side of the coin for me, with a BRCA2 mutation I’m at high risk for breast cancer (45% or more) and a five-year course of tamoxifen might reduce that risk by 1/3 to ½.  That was substantial.  And the risk side was relatively low, given my good health otherwise and my lack of significant risk factors for the various serious health problems which tamoxifen can make more likely.

With respect to experiential side effects – the dreaded hot flashes, etc. – Dr. K assured me there were ways to counteract those issues if I experienced them.  And if I really hated how I felt, I could just stop taking it.  I had an escape plan, if needed.

I couldn’t decide, either way, during that appointment.  So I didn’t.  I went home to think about it.  I was very hesitant (okay, afraid) and that was fine.  I had time to learn more, to think and decide.  I spent a couple of weeks doing more research, pondering, and directing questions to Dr. K by hone or email.

Eventually I decided to do it.

I called my doctor and got the prescription.  I would take 1 pill daily, at the same time each day, for five years.  Presuming I didn’t use the escape plan.

Prescription filled, I read all the associated paperwork, the lengthy package inserts detailing the potential side effects and counter-indications.   Those lists can be extensive for even the most innocuous drug.  For tamoxifen it was rather overwhelming, but I forged through.

And then I didn’t start taking my daily tamoxifen pill for nearly a week.  Intellectually I thought I was ready, but seemingly not enough to take actually the plunge.

Until one day I just was.  I had processed the decision in the way that I needed to, I guess.  And after all the concern and the fear, it has been fine.  I noticed an increase in hot flashes, early on, but since then things have settled down.  I feel just about the same as I did before.

Except maybe a bit more hopeful – that every tamoxifen pill I take may be helping to reduce my breast cancer risk…

Going for A Walk

I took a walk this morning.  Later on, I’m going to a vinyasa yoga class.

 

I don’t work out because I want to reduce my breast cancer risk.  Until a few weeks ago I hadn’t really thought of exercise in those terms, to be honest.  But recent studies support that potential effect.

 

Three and a half years ago I learned that I have a BRCA2 mutation and thus a 45% or greater chance of breast cancer in my lifetime.  With medical support, I decided (as do the majority of BRCA+ women) to do high-risk surveillance rather than a preventive mastectomy.  Because of good screening tools and treatments for breast cancer, such enhanced surveillance gives a similar survival rate as does prophylactic mastectomy.

 

But with that 45% (or more) figure in my mind, it seemed to me that any lifestyle or environmental impacts on my risk were dwarfed in comparison to the inherited risk that my body naturally harbored.

 

Close surveillance, with mammogram/ ultrasound and breast MRI six months apart, could at best accelerate the detection of any cancer that might arise.  The risk level remained.   (I wasn’t ready then to consider chemoprevention, taking a drug like Tamoxifen to potentially reduce the odds of getting breast cancer, but have since started a five-year course of that medication).

 

I was  very aware however that though exercise hadn’t prevented my mother from getting either breast or ovarian cancer, her pre-illness fitness level made her much better able to cope with both diseases, especially the latter.

 

Mom’s ovarian cancer treatment four years ago started with a major abdominal surgery and she was in the hospital for quite some time, getting her lung capacity and strength back.   She went into the operation in good physical shape – she and my dad take daily walks and she hikes with a group of friends once a week.  If she hadn’t been so strong initially, I cannot imagine how much harder her post-surgical experience would have been.

 

Since that time, I do think about my mother as I get on the elliptical machine or walk the Lady Bird Lake trail.  I exercise at least partially with the goal of being in the best possible shape to cope with whatever illness (or emotional upset or other life challenge) may be in my future.  My Mom was a good role model there, as she is in so many ways.

 

But it seems I may be reducing my breast cancer risk as well.

 

A large American Cancer Society research study recently found that women who walked for at least 7 hours per week (generally 1 hour per day) had a 14% lower risk of developing breast cancer than those who walked less than 3 hours per week.

 

Not only that, but the group of women who worked out longer and more strenuously – 10 hours per week of vigorous exercise – saw an even greater reduction, with a breast cancer risk 25% lower than the least active group.

 

And another study coming from the University of Minnesota suggests a potential mechanism through which exercise might be impacting breast cancer incidence, through changing the ratio of estrogen metabolites.

 

Curious to read more?  see http://cebp.aacrjournals.org/content/22/10/1906.short

http://well.blogs.nytimes.com/2013/10/09/how-walking-may-lower-breast-cancer-risk/?ref=health&_r=0

http://www.bbc.co.uk/news/health-24381469

 

These were studies drawn from the general population, not specifically of women with BRCA mutations.  There is no guarantee that the same results would apply to our specialized tribe.

 

But I appreciate the idea that my walks, and my yoga and gym time, may be reducing my breast cancer risk.  It’s not why I do it, but as a potential side benefit it isn’t bad at all…

And yes, I’m going for a walk again, tomorrow.

 

 

 

 

 

 

Risk Tolerance

My risk tolerance is generally low.  At heart, I’m careful and cautious and would rather play it safe when I can.

 

I do my best to avoid risky situations.  I don’t skydive – the chute might not open.  I don’t go for amazing tropical helicopter rides when I’m in Hawaii – those choppers crash sometimes, you know.  I wait for the walk sign, even when there is absolutely no traffic in sight.

Probably the biggest risk I ever took I did without any real awareness of its truly precarious nature.  My husband and I married very early, while I was still in college, which statistically is certainly a risky business as far as the odds of staying together.  The cautious (or smart?) move would have been to wait, but we were in love and young and somehow just “knew” we would make it work.  We felt invincible, for no really good reason.  Looking back as I’ve gotten older, of course, I’ve realized what a risk we took.  Happily, it worked out – we are coming up on our 31^st anniversary this February.

 

But at the time we got married, I was rather oblivious to the chance we were taking.   Learning that I have a BRCA mutation, with its attendant breast and ovarian cancer risks, I’ve been forced to consider risk and my tolerance for it in my life in a whole new way.  Somewhat to my surprise, I’ve chosen to live with a degree of breast cancer risk that I might not have expected I could tolerate, doing surveillance and chemoprevention rather than preventive mastectomy.

 

Though in many ways I remain risk averse, at least as far as skydiving and helicopter rides and even waiting for the walk sign…

 

Life doesn’t always allow us to do what we would prefer, however.  I’ve been stretched and challenged over the years, pushed outside my cautious comfort zone.  Not long after I had left a well-paying job to stay home with our son, my husband got an opportunity to join a start-up company.  He’d been at a big, solid Silicon Valley firm but this would be a much better fit.  I was incredibly anxious about the risk we were taking with this change – did I mention I was pregnant with our second child at the time?  My natural inclination would have been to say no, to ask him to stick with the safer option.  But he needed to do it and I managed to support him in doing so, despite my difficulty living with that kind of risk.

 

And I guess over the ensuing years I’ve increased my risk tolerance in some areas, perhaps without really being aware of it.  My BRCA+ journey, from July of 2010 until the present, has brought that fact into sharp relief.

 

As a woman with a BRCA2 mutation, I’m at high risk for breast and ovarian cancer.  The ovarian cancer risk is about 11-17%, but there is really no effective screening.  So upon the advice of my doctors, and given that our family was complete, the choice to have my ovaries and fallopian tubes surgically removed was clear — even that relatively low risk was not one I was willing to take, having seen my mother’s experience with ovarian cancer.

 

The breast cancer risk is another matter.  With a BRCA2 mutation, I probably have about a 45% risk of developing breast cancer, though some studies have found higher risks (55-60% or even 85%).  My doctors left it up to me to choose between preventive surgery and high-risk surveillance.  This question, faced by many BRCA+ women, is a very individual decision and the way we each answer it depends upon many factors – age, family history, and that slippery question of “risk tolerance.”

 

Both sides of the coin carry some risk.  If I chose prophylactic bilateral mastectomy or PBM, I would be having one (if not more) major surgeries, none of which would be easy and each of which would carry a risk for complications.  But my risk of breast cancer would plummet, not to zero but to a very negligible figure.  That risk would be minimized.

 

If I chose high-risk surveillance, I would be screened every 6 months, by mammogram/ ultrasound in the winter and breast MRI in the summer.  Unlike with a PBM, I wouldn’t face the certainty of an immediate surgery, but instead the ongoing possibility of a cancer diagnosis and subsequent surgery at a later time.  My breast cancer risk would remain about the same, that 45% or more figure, with the goal of finding it early if it does occur.

 

I chose the latter option, that of enhanced surveillance.  If I can avoid having a mastectomy, a big and challenging surgery, I would like to do so.  And apparently I am willing to live with the attendant risks.  I sort of surprised myself with that one.

 

“Every 6 months” comes around pretty fast.  I’ve had several biopsies and false alarms, but so far all is well.  Though I am well aware that one of those alarms, one day, may not be false.  I have even started taking Tamoxifen, a drug that my doctor thought I was a good candidate for and which may reduce my breast cancer risk, but which also carries the risk of various side effects.  She thought the benefits outweighed the risks, for me, and I took the plunge.  So far, so good.

 

So I’m going forward, risk acknowledged and (I guess) tolerated, to a degree I never would have expected.  These aren’t easy questions or easy answers.  Each woman faced with them will wrestle with them in different ways.  Angelina made her choice for a PBM, as some women do.  Others, like me, are taking the path of surveillance and/or chemoprevention.  And at least part of that decision-making process comes down to that so-elusive issue of “risk tolerance.”

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.

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.

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.

 

 

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.

 

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.

 

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.