Guest Post: Female Buyer Beware

By Lola Cook

Lola Cook, a board-certified genetic counselor, currently works as a prenatal genetic counselor at a private hospital in Indianapolis. Previously, she worked in pediatric and adult genetics for 11 years at Indiana University Medical Center. She is the Project Director of a Maternal-Fetal Medicine and Genetics Maternal Child Health grant funded by the Indiana State Department of Health.

This past week, I was skimming my Journal of Genetic Counseling when my attention was drawn to the article by Tamara Somers and her co-authors about women’s interest in cancer genetic services, even when they do not have a significant family history. Part of the interest seemed related to their cancer distress. I am not surprised, for it mirrors my own level of interest or, should I say truthfully, anxiety about breast cancer. Added to my background worry, is the fact that my colleague who is the same age as I, in her 40’s, was recently diagnosed with stage III breast cancer following a normal screening Myriad BRAC Admammogram a year before and a limited family history. And then there are the new Myriad direct-consumer ads about BRCA gene testing finding their way into our own homes!

The National Cancer Institute estimates that currently the lifetime risk for a woman to develop breast cancer is 12.7%, which translates into 1 out of 8 women.  They go on to state:

These probabilities are averages for the whole population. An individual woman’s breast cancer risk may be higher or lower, depending on a number of factors, including her family history, reproductive history, race/ethnicity, and other factors that are not yet fully understood.”

To be honest, it blows my mind that not more is done to offer and provide breast cancer risk assessment to women when you consider the background risk and so many mitigating factors. In addition, some of us are worriers, and not necessarily objective ones.

I was lucky (or just a worrier with resources). I knew to call the cancer genetic counselor where I work, when my cancer distress was increasing.  She suggested a general breast cancer risk assessment clinic in our hospital, not the cancer genetics clinic, since I did not “qualify” with my mere late-onset breast cancer mother. It took a few contortions to get into this clinic for breast cancer risk assessment, and then it was found I qualified for yearly MRI breast examinations based on my personal and family histories. I was high risk. In fact, the radiologist reluctantly admitted after my mammogram this year “that with your dense tissue, the detection rate of the mammogram is probably a little better than 60%. It’s good you are having an MRI”. How many years had I obediently done my annual mammogram with no specifics provided or context given to the results, just assuming I was in the clear zone? Those of us interested and yes, even anxious, can not assume basic and individualized breast cancer risk assessments and/or referrals will happen during our 15-minute primary doctors’ visits or even by our local breast centers!

As a genetic counselor and as a female, I suggest that we get the word out to our friends, families, and patients with limited family history about the option of breast cancer risk assessment in a formal setting, whether it is like the clinic I attended or a specialty genetics clinic. As health care providers, the more difficult task is to figure out how to make breast cancer risk assessment services more readily accessible to all women. At a time when we are faced with direct consumer ads in our own living rooms, women can not be fooled that screening and testing are enough. Cancer risk assessment services can do much to adjust risk perceptions, reduce anxiety, plan truly useful and individualized screening and testing protocols, and coordinate care. Based on this small study, we know the likely response, if we just take the time to ask and refer.

3 Comments

Filed under Guest Blogger

3 responses to “Guest Post: Female Buyer Beware

  1. Emily

    This is an informative article that I previously had no idea about. As an average citizen with no medical knowledge, I assumed the regular doctor check-up was as much as I needed done to determine my risk.
    But as a young woman, with no health insurance, and no legislative decisions in near sight, how can I have risk assessment done without going broke?

  2. S. Bonnie Liebers

    Emily,

    Many medical centers have state funded genetic counseling programs, that may accept medicaid patients, if you are eligible for such.

    Otherwise, if you have a close relative (within the same line of descent as your relative(s) with cancer) who is insured, you might consider making an appointment together. If you are indicated for testing, a genetic counselor may be able to help you to identify a source of funding, although these opportunities are limited.

    Be persistent, and if you are unsuccessful in accessing service now, revisit your opportunities again in a few months, keeping in touch with a genetic counselor.

  3. Informed Medical Decisions, Inc. is the only nationwide network of independent genetic counselors. Using state-of-the-art telephone and internet technology, we bring genetic counseling to patients anywhere. Women (and some men, based on their family history) can schedule confidential risk assessment appointments through our convenient 24/7 online scheduling in the patient portal on our website or call 1-800-975-4819 or send an email request to patientcare@informedDNA.com. We offer a flexible appointment schedule (all time Eastern time zone); Mon – Fri: 9 am to 11 pm, Sat: 9 am to 3 pm and Sun: 1 pm to 7 pm. Informed also accepts most major commerical insurance.

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