Tuesday, October 11, 2011

CALCULATING RISK FACTORS


I have read that most women do not properly calculate their risk factors for developing breast cancer.  Most of us think we are at higher risk than the reality of our particular circumstances.


Yesterday, I received an email from Medscape.  I would post the link, but it requires registration to access.  The credentials of the person who posted this chart?


Dr. Katherine Kolor from the Office of Public Health Genomics at the Centers for Disease Control and Prevention (CDC). I am speaking to you as part of the CDC Expert Commentary Series on Medscape.


There is a very powerful line in a movie about a wife suddenly having a very emotional reaction to the antics of her cheating husband.  The premise?  The wife knew about the infidelity for years but as explained by the (not very nice) spouse, it's one thing to know about the cheating and it's quite another to actually read the love letters.  And so it goes with this risk factor chart.


I recently remembered my very first non surgical biopsy and I can still see the note in the doctor's handwriting on my chart.  "Strong ++ FH"  ....  At the time of my diagnosis, my family history (FH) was my mom with a pre-menopausal, under age 50 invasive breast cancer that was already in four lymph nodes by the time she was diagnosed.  It was her first mammography.  She wasn't going to go.  My dad insisted.  It was 1987.


In 2006, I was diagnosed with an invasive breast cancer.  Premenopausal and under age 50.  When my daughter asked me the question that still rings in my ears, "What does this mean for me, mom?" I replied that it was more of an issue for my two sisters than it was for her.  Apparently, I was mistaken.  At that very moment both she, my two sisters AND my two nieces all hit the "strong" box.


With my diagnosis, there were now two "first or second degree relatives" with breast cancer diagnosis, BOTH before age 50.  Technically, only one of us needed to be under 50 for all of these people to hit that box.  Since my diagnosis, my mom developed a second breast cancer in 2007.  My youngest sister, at 42, developed a breast cancer in 2010.  My other sister, for all intents and purposes was simply lucky.  A surgical biopsy got the cells as they were already pre-cancerous and a pretty high grade at that.  


The three of us with definitive cancer diagnosis were BRCA tested.  I was the first one tested and I have mutations on both BRCA1 and BRCA2 but they are of unknown significance.  Because of my results, mom was tested and she sequenced out completely clean-no mutations at all. My youngest sister has a match to one of mine but they are close to classifying that as a "harmless" mutation.


Clearly, something is going on here and I, unlike most women, have tried to err on the side of understating our family risk.  Clearly, I have been mistaken.  Clearly, besides my daughter and my sister's daughter, I see that my brother's daughter is also in the strong category.


I am a scorned woman.  Knowing this was one thing.  Seeing it in print?  I am devastated.  And now I am more determined than I ever was to be the change, to see the change, to be part of the solution, to make a difference.  For D, For N and most especially, for YOU, Stephanie.  I love you.  I love the three of you.  AND, I love all of YOU too for reading and supporting my efforts with your encouraging words.


Yesterday, I publicly acknowledged that it can't stop with me.  In the near future?  It has to stop.  I can't watch this trickle to the next generation.  The thought is very disheartening.


Have you JOINED The Army of Women, yet?  Use the link on the right.  Or grab your phone.  Text the number 46637.  Enter armyofwomen in the text message.  Follow the link in the reply.  My daughter needs you, my nieces need you.  And I thank you.


It's up to us to be the change we wish to see.  It's up to us to shake it up and make it happen.  The status quo sucks.  Yeah, more of the same old, same old?  It just ain't workin' for me any more.   


 

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
  





No comments:

Post a Comment

Something to add? Do Share!