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?”

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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?

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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.

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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?

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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.

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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…

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.

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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 31st 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.

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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.

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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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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.