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.