What does it mean to be at a high risk for cancer?

As a woman with a BRCA mutation, there is a lot of focus on breasts and ovaries, since these are the cancers for which we are at highest risk.  For many women, it means prophylactic surgeries – mastectomies to remove our breasts and oophorectromies (and sometimes total hysterectomies) to lower the risk of ovarian and other peritoneal cancers.

I have had all three of these procedures.

When you learn that you have an HBOC (hereditary breast and ovarian cancer) related genetic mutation, a genetic counselor usually tells you that you are also at slightly higher risk for melanoma, so you may be slathering on a lot more sunscreen and wearing a hat in the summer. You may also be aware that your risk of pancreatic cancer is elevated, and depending on your family history, you may have spoken to a gastroenterologist about what to do (if anything) about screening or prevention (I take Vitamin D daily). If you are a man, you may know that you are at high risk for prostate cancer.

If you are aware of these, you may feel you've done due diligence in terms of BRCA.

Yet as genetics technology develops at a rapid pace, so does our understanding of what it means to be BRCA positive.  Studies have linked BRCA mutations to tumors in the appendix, cancer in the salivary gland, and researchers are speculating that BRCA mutations could be connected to Alzheimer's.

When you are BRCA positive, it's hard not to be aware of BRCA in the news and to worry a lot about what part of your body might be affected next.

Yet when I was at the dentist a while back and she asked me if I wanted to have my cheek swabbed to check for mouth cancer, I had to laugh. Mouth cancer?  No. I did not want to be swabbed for mouth cancer.  After going through a year of surgery to prevent ovarian and breast cancer, the last thing I wanted to know is if I might have mouth cancer.

Sometimes, less information feels more empowering.

As someone with a BRCA2 mutation, even though I've had surgeries to lower my chances of developing the cancers for which I was at highest-risk, I still worry a lot when I read about BRCA mutations linked to "cancer of this" and "cancer of that."  So, here are a few things I try to keep in mind:

Studies need to be read carefully. I tend to be reactive and over-emotional when I read a study that seems to imply I should have another part of my body removed.  But when you re-read and really look carefully, evaluate the source and/or the data, you can usually tell if it is data worth acting upon. Ask yourself where the study was done, how many participants were there, and who were they (Are they your age? Do they have your mutation? Are they previvors or survivors?), has the study been replicated, has it been published and by whom?  If you're still unsure, FORCE X-RAYS is an excellent resource where professionals in education and scientific research review current research, translate it into accessible language, and evaluate its relevance and accuracy. And of course, you should always ask your doctor or genetic counselor if you read about something that gives you pause.

2. You can't prophylactically remove every part of your body, certainly not skin or lungs.  And while you could have your appendix removed, weighing risks and benefits is really important.  A mastectomy might make sense if your genetic counselor determines your risk at 85%.  An oophorectomy might make sense if your risk is determined at 40%. Having your appendix prophylactically removed if your risk is 3% higher than the rest of the general population might not be worth it when you consider the basic risks of surgery. Weigh risks and benefits with your doctor and genetic counselor.

3. Spend some time in the shade. I don't just mean that you should protect yourself from melanoma by staying out of the sun.  I mean that you don't have to read every research study or every article that has "BRCA" in the title.  Keep yourself in the know by maybe choosing one resource that you find to be reliable and checking it once a month, but don't buy every book about cancer or genetics.     And, if you'd rather not, you definitely don't have to have your cheek swabbed to check for mouth cancer.

Bryna Siegel Finer tested positive for the BRCA2 mutation at 26 years old and,  after seven years of screenings, a mammogram discovered DCIS in her right breast.  Bryna teaches writing at Indiana University of Pennsylvania and lives in Pittsburgh with her husband, who is BRCA1 positive, and their son.  She is a peer support group co-leader for FORCE Pittsburgh and can be reached at brynaf@facingourrisk.org. 

Read more Diagnosis: Cancer here »