Wednesday, September 26, 2012

I HATE LABELS THAT DRIVE DECISIONS

Hold your horses on the pink stuff.  We aren't quite there yet.  It's still September.  Let's have a little respect.  It's not Pink.  Not Yet.

It is, however an awareness week.  This week is National Hereditary Breast and Ovarian Cancer Awareness Week.   Today, in the middle of the awareness maelstrom of THIS particular week, is “National Previvor Day.”

I have come to learn lots about what it means to be a previvor and how to calculate a proper risk factor.  Last year, when I came upon the chart below, I was troubled.  This year, even more so.

I am part of what is a family cluster of disease.  Although both of my BRCA genes have mutations, they are of unknown significance.  And my mom has no mutations at all.   One of my sisters matched one of mine.  On the genetics front, it certainly seems like my family cluster could be a mutation they have not yet identified.   I have two sisters.  In four first degree relatives, we have what amounts to five breast cancer diagnoses?  Mainly under age fifty, pre-menopausal.  Not really great.

In the past year, I learned much about what it means to have to watch with vigilance.  I had choices.  I had to make decisions.  I also had a cancer diagnosis.  I agonized over my decision.  I hated that I was making a conscious choice to permanently alter my body.  Today, I know it was the right choice but still, it hurts.  Emotionally.  Why?  Who the hell knows.  I can intellectualize and come to a clear, rational and logical place.  Try getting the brain and the heart on the same page?  Some days yes... others, not so much. 

Those with NO diagnosis who are still faced with difficult choices have it far worse.  No disease.  Yet.  Possibly no disease ever but it's a game of russian roulette.  The thing with the previvors?  It's not a single bullet in just one chamber.  It's more like the reverse.  It's bullets in all BUT one chamber.  I have become quite close with some who have been in this most difficult place and my heart aches for them.

I mark today because a label has been placed upon my daughter and upon my nieces, too.  Previvors.  Today is their day.  I don’t WANT them to have a day.  At least not THIS day.  I want them to have birthdays, graduation days, wedding days... not days of potential gloom.  They all fall into the strong box on this chart.  And they will stay in that strong box until research finds the key to unlock whatever mysteries lie just beneath the surface.  Until research finds a way to make prevention a reality.  I have a vested interest in pushing this agenda.  It's the entire next generation.  It's my daughter.

I don't want my heart shattered like my mom's was shattered.  I know mom felt worse than I did when she heard "cancer" -- once, then twice and then barely dodged the third bullet.  Three daughters.  Three "situations."  I don't want to put that shoe on my foot.  So I will continue to push.  There is no other option and it IS just that simple.    


Risk CategoryFamily History*ExampleEffect on Cancer RiskWhat You Can Do
AverageNo first- or second-degree relatives with breast or ovarian cancer

or

Just one second-degree female relative with cancer of onebreast diagnosedafter age 50
Grandmother with breast cancer diagnosed at age 75Typically not increased, similar to the general population risk
  • Mammograms or other breast examslearn more
  • Make choices to reduce your risk learn more
  • Discuss any concerns with your healthcare provider
Genetic testing isnot typically useful for this type of family
ModerateJust one first-degree female relative with cancer of onebreast (diagnosed at any age)

or

Two first- or second-degree relatives (female) with cancer of onebreast diagnosedafter age 50

or

Just one first- or second-degree relative with ovarian cancer
Mother with breast cancer diagnosed at age 68 and maternal aunt (mother's sister) with breast cancer diagnosed at 62

or

Sister with ovarian cancer
Somewhat higher than the general population risk, but most women from these types of families will not develop breast or ovarian cancerTaking action may be of greater benefit for women with a moderate vs average risk family history.
  • Mammograms or other breast examslearn more
  • Make choices to reduce your risk learn more
  • Discuss any concerns with your healthcare provider
Genetic testing isunlikely to be useful for this type of family Exception for families of Jewish ancestry
StrongTwo or more first- or second-degree relatives with breast and/or ovarian cancer,if at least one breast cancer:
  • was diagnosedbefore age 50
  • involvedbothbreasts
  • affected amalerelative
Sister with breast cancer diagnosed at age 40, paternal aunt (father's sister) with breast cancer diagnosed at age 45, paternal grandmother (father's mother) with ovarian cancerNot all women in these families will develop breast or ovarian cancer, but risk is much higher than general population
  • Talk with your healthcare provider about genetic counseling for cancer risk
Genetic testing maybe useful for this type of family.Learn more

This table provides information about average, moderate, and strong family histories of breast and ovarian cancer. This may help you determine if your patient has an increased risk for these cancers based on her family history. Not all families may be found in this table. If you have concerns about your patient's family history of breast or ovarian cancer, please talk to a trained genetic professional.
*First-degree = parents, brothers, sisters, children; second-degree = aunts, uncles, nieces, nephews, grandparents, grandchildren
  

6 comments:

  1. Thanks for posting the table. And thanks for sharing again. You're terrific!

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    1. Thanks, Kathleen.

      I always had a tendency to **understate** the risk factors. I'm so jaded by skewed statistics I didn't give this much thought UNTIL I saw the way they broke things down in a table that is easily understood.

      Upsetting, but easily understood....

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  2. I didn't know the term "previvor" existed until I read this post AnneMarie. But I have thought plenty about the family history my family has. I am one of 8 sisters. Three of us have been diagnosed with breast cancer, all under age 50. I guess that makes my other 5 sisters and 14 nieces previvors with a strong risk of getting breast cancer. This is what motivates me to speak up, to watch where I donate my money, to be a more discerning consumer, to write about the realities of breast cancer, to join in this discussion. Upsetting. Yes. Necessary to motivate our efforts. Yes.

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    1. Oh Lisa, I had NO idea you had a "disease cluster" .... If there is no known BRCA mutation, it would seem you and I are in the same boat. A huge part of what motivates me is my daughter and my nieces. And yes, I will remain motivated and call out every organization that is not being responsible.

      The first time I heard the term was last year on this day. National Previvor Day. It's scary....

      Hugs,
      AnneMarie
      xoxo

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    2. AnneMarie,
      No known mutations have been found in the three of us who had genetic testing. But the thing with genetic mutations is there have only been a small number identified. The best way I have heard it described is that all the mutations are like a big apartment building and we only know what's in a handful of apartments.There is so much more to find out and that is why I get frustrated with pink fluff and wasted money. Onward!

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    3. Yes, Lisa... if I understood correctly.... they had identified about 700 known mutations. Being number challenged, I hate to do this but I have a few friends that I can check with..... I believe there are about 16k possible mutation on EACH gene. In other words.... that is truly in its infancy. This is back from 2006 when I was very much involved with the mutation situation (not an intentional rhyme but....). Science changes at warp speed so I may be completely off base.

      No more pink fluff...... If it's pink, whomever is using it better be doing something to benefit "the cause" ...... I use that word in today's post....We aren't a cause, but women. With a disease.

      Onward.... and I'm right by your side...

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