Living Well

Real Money: Genetic testing and a life-changing discovery (Part 2)

Last time, I shared my experience of being diagnosed with a BRCA1 mutation -- a genetic condition that makes me more susceptible to breast and ovarian cancer. The doctors I spoke with recommended prophylactic surgery to remove my breasts, ovaries and Fallopian tubes.

Until I get the surgeries, I'm supposed to get a blood test, vaginal ultrasound and breast MRI every six months. The cost of these screening tools can be expensive, especially if you have a high-deductible health plan (HDHP) like I currently do. The average cost of an MRI is $2,000, whereas the ultrasound is several hundred dollars. Even the CA-125 blood test can cost $200.

I didn't have to worry about the cost of the procedures immediately. My husband and I somehow qualified for reduced expenses through our medical insurance, so everything from the consultations to the MRIs would be covered for now. But I also knew we had plans to move out of state in a few months, meaning I'd lose that affordable coverage.

Even before I found out my BRCA results, I knew I would want to get the preventative surgeries as soon as possible. I'm an anxious person by nature, so the idea of cancer hanging over my head was enough to give me panic attacks.

Some women are comfortable with surveillance and regular screening, but not me. Every doctor I spoke to recommended surgery as soon as possible since I'm not interested in having kids.

A major life decision

Not all women go that route. Many are scared of having surgery and believe they can detect cancer early enough. That may be true for most breast cancers, but ovarian cancer is different. Symptoms of ovarian cancer are vague and can be confused with PMS or stomach problems. I don't like the idea of freaking out every time I'm bloated or feel discomfort in my abdomen.

Of course my HSA should be there to help. Right now I'm maxing out the family contribution limit of $6,900. We have an HDHP right now, but plan to sign up for a gold plan next year with lower premiums. And it's the right move for us today -- we'll save approximately $4,000 by doing so, but it means we won't be able to contribute to an HSA. That's why I'm planning to save as much as possible this year.

I also won't be able to open an FSA because my husband and I are both self-employed. Currently we are a partnership according to the IRS and plan to transition to an S-corp next year. Neither of those is eligible for an FSA. If I were able to open an FSA, then I would contribute to that account as well to pay for any other outstanding costs that insurance wouldn't cover.

Right now I'm hoping my HSA will have enough money in it to cover the costs of surgery. There might even be some left over in case I need follow-up appointments the year after.

If I wasn't getting surgery next year, I would keep my high-deductible plan and save more money in my HSA to pay for the costs of screening. There are no right answers when it comes to this situation, but approaching the financial side with a level head has helped me to feel more confident for the future.

No one can ever be emotionally prepared for this news, not even someone who's researched so much about breast and ovarian cancer. Some days I still wake up angry at my diagnosis. Some days I think maybe screening is better than surgery. But I always come back to my decision.

Thankfully, the financial aspect of BRCA is easier to swallow. Setting up my budgeting for success means I'll only have to worry about recovery and not how I'm going to pay the hospital bill.

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Whether you budget week-to-week, or plan to use your FSA for bigger things, our weekly Real Money column will help you maximize your flex spending dollars. Look for it exclusively on the FSAstore.com Learning Center. And for the latest info about your health and financial wellness, be sure to follow us on Facebook, Instagram and Twitter.

Living Well

Real Money: Genetic testing and a life-changing discovery (Part 1)

Gene research is at the cutting edge of medical science. Researchers are realizing that genes can tell a lot about your body - from the most effective ways to exercise, to the best way to manage your diet, to which diseases and conditions you're more likely to develop.

With that in mind, I decided to take a test in 2017 to determine whether or not I had a mutation on the BRCA gene. In short, such a mutation would put me at a severely increased risk for certain types of cancers. Shortly after submitting the test, I received a positive result.

Here's my story: How I found out, what I did to address it, and how I plan to pay for it all.

How I found out

Almost a year ago, I read an article in the New York Times about the BRCA gene, which is responsible for suppressing tumors that can cause breast and ovarian cancer. If you think you've heard of it before, it was probably in 2013 when Angelina Jolie wrote an essay about her decision to have a preventive double mastectomy because of her BRCA mutation. When I tell people I have a BRCA mutation, I usually preface it by asking if they remember Jolie's decision.

The Times article said that Jewish women had a one in 40 chance of having a mutation on the BRCA gene, and therefore being more susceptible to these types of cancers. I'm Jewish on both sides of my family, and the news hit home for one important reason - my grandmother died of ovarian cancer at 42.

I also used to work at a cancer agency. I learned how deadly ovarian cancer can be, and how difficult it was to go through treatment for even comparatively "mild" types of cancer. Every day I saw people suffering physically, mentally and financially, with no assurance that things would ever get better.

After reading the article, I asked my doctor about getting tested for the mutation. She didn't think I had enough family history to qualify, despite coming from a Jewish background, so she denied my request for a referral. I have very little family history to begin with, so this distinction seemed odd to me even at the time.

One testing option...

A few months later I discovered Color, an at-home DNA testing kit similar to 23andMe. Color offered a BRCA specific test for only $100. I'm a frugal person by nature and hated the idea of spending $100 out of pocket. Because my doctor didn't recommend the test, I couldn't even use tax-free funds to pay for it.

Providers only consider DNA tests as qualified medical expenses if a doctor recommends them. Usually, if the doctor suggests a BRCA test, it has to be done at their office. They can also write a letter of medical necessity if you want to purchase a DNA test for home use using FSA funds.

A few weeks after submitting my saliva sample to Color, I got my results: I had a mutation on my BRCA1 gene. In short, that means I have an 81% lifetime risk for breast cancer and 54% lifetime risk for ovarian cancer.

My head started spinning and my stomach sank. Thankfully, I was on the phone with one of Color's professional genetic counselors. She told me my next steps were an appointment with a clinical geneticist, who would then refer me to an OB-GYN and breast surgeon.

She also said I'd need a breast MRI, vaginal ultrasound and a specific blood test every six months until I got my surgeries. Most BRCA-positive women get their ovaries and Fallopian tubes out once they're finished having kids, or before age 35.

That may sound extreme, but ovarian cancer currently has no effective screening method. A vaginal ultrasound will usually only pick up cancer once it's advanced, and the blood test has a high false-positive and false-negative rate. In short, by the time you get diagnosed it might be more severe than expected.

Next steps...

The testing was only the beginning of my BRCA journey. Next, I had to figure out how to pay for all the additional tests I would need - and especially how to cover the cost of surgery. Be sure to check back to see how this journey is affecting my health and financial planning for the next year.

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Whether you budget week-to-week, or plan to use your FSA for bigger things, our Real Money column will help you maximize your flex spending dollars. Look for it every Tuesday, exclusively on the FSAstore.com Learning Center. And for the latest info about your health and financial wellness, be sure to follow us on Facebook, Instagram and Twitter.