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 Category	Family History*	Example	Effect on Cancer Risk	What You Can Do
Average	No 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 75	Typically 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
Moderate	Just 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 cancer	Taking 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†
Strong	Two‡ 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 cancer	Not 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