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.

                                   photo

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.

                            IMG_0773

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.

Advertisements

20 thoughts on “Timing is Everything

  1. Linda,

    Congratulations on your blog and on the first, exceedingly well-timed post!

    I’m struck that some of our BRCA journey details are so similar and others, not so much.

    Although I don’t blog exclusively about BRCA, I have told much of my story at http://www.janethewriter.com.

    Good luck with the blog…I look forward to reading more from you,

    ~ Jane.

    • Thank you Jane! I recently started following you by email subscription and yes, though the specifics of our paths are different we also have commonalities. Looking forward to further sharing our journeys via the blogosphere. Jealous that you got to attend the symposium with Barbara Walters.

  2. Linda,
    Thank you for including me in your list of recipients.
    Your blog is short and to the point – which is important in a world where timing seems to be everything. Your message is poignant. You and your family are fortunate that you took the time (there it is again) and courage to get tested to better understand your familial risks.

  3. Pingback: Weekly Round Up – The Pinktober Edition | Journeying Beyond Breast Cancer

  4. Hi Linda,
    Welcome to the blogosphere! It seems you and I have a few things in common. My mom didn’t learn about her BRCA2 mutation until after her cancer diagnosis either. I was in the thinking about getting tested stage when my diagnosis came. I thought I had a bit more time to think on things, but cancer doesn’t always allow us that time does it? So yes, timing is everything. Good for you for being a previvor and I’m glad your mom is doing well.

    • Thanks Nancy for the welcome. Your posts have always been thought-provoking and encouraging as I work through things and process this new stage of my life and all its implications. Sorry you didn’t have the time that you thought you might have, pre-diagnosis. And thanks for the thinking of my mom — if you had told us four years ago that she would be doing so well now, we never would have believed it. Of course we don’t know what is coming around the corner for her, but this period is a real gift.

  5. Congratulations on your new blog and your first post. It’s good to hear how BRCA testing helped you with your timing – as I’m sure it does many, many, women – and to be reminded that this test didn’t always exist. Research did that, and I hope it does much more in the years to come. ~Catherine

    • Thanks Catherine for the welcome and encouragement with this new project. Yes, I have come to realize very personally and powerfully the importance of medical and scientific research. My mom and I have both taken part in several research studies, hoping that we can help contribute in that way.

    • Thanks Marcy. Yes, for me that was a clear choice, given my age and stage of life. Quickly entering menopause was not ideal but well worth what I gained. I feel very lucky to have had that choice and sorry that my mother did not. Sorry also that many others, like you, are living with ovarian cancer. I appreciate your concept of “livingly dying” and look forward to reading more of it.

  6. Loved reading your first entry….concise and well-written. A real testimony about being educated, wise and proactive. Proud of you, Linda!!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s