Living with BRCA - Why Get BRCA Tested?

Why Get BRCA Tested

Today's writing will be completed by AJ, the middle daughter.

I found out I was BRCA positive when I was 28.  For me, I didn’t hesitate.  The moment my sister told me she had breast cancer, I started looking into getting tested.  Then, once I had documentation saying that she was positive, with the coding for our particular mutation, I called my gynecologist to start the process to get me tested.  There was no debate; I had lost my best friend to cancer and I wanted to know exactly what my chances were for the same thing happen to me.  That was one of the hardest, if not the hardest, experiences of my life and I did not want to pass that burden onto someone else, if I could prevent it.

For others, though, the decision doesn’t come that easy.  I understand that this knowledge is, by itself, its own burden to carry.  From talking to others, I’ve heard several reasons as to why someone is completely avoiding or putting off the test, but I’m hoping to show that in this case, there are more reasons to get tested than not.

Before I begin, I want to make sure I mention an important point: if you know one of your parents is BRCA positive, your chances are 50%.  This means, for most people being BRCA tested out there, the chances of it being negative is just as likely as it being positive.

Let’s break those reasons apart:

Lack of Risk Awareness

There is so many falsehoods that are repeated regularly about BRCA that I’ve already written an article about them.  If you have read it, you’ll see some of them may affect your desire to get tested.  For example, I spoke of people believing they can’t be positive because their parent never had cancer.  It’s an easy mistake to make, but that kind of ignorance can also cause a false sense of security.  If you haven’t, I suggest you go and read it first (it’s a quick one, really!) to make sure that there isn’t something that isn’t factual that is holding you back.

Life Insurance Coverage

Fact is, unfortunately, you can be discriminated against for having the BRCA mutation when you buy life insurance.  However, that doesn’t mean every company and policy out there is the same.  I was able to get life insurance without any incidents.  They never asked me if I was BRCA positive and, while I was honest about my strong family history of breast cancer, I was able to also tell them that I got regular screenings at the time.  Some companies care more about how you take care of yourself with what you can control than others.  If you’re holding back on getting tested because you’re afraid of a positive result making you uninsurable, take the time to research various companies to see if this is really a problem for them.  If you don’t know where to begin, you can always talk to an agent.

Another solution is to do a longer-term term-life insurance before you get BRCA tested.  If you’re 25 and get a 40-year policy, that should take you to retirement age.  In other words, through the years where a loss of income would have the greatest effect on your loved ones.  If you did your research, read all the paperwork, and talked to an agent, you should be able to have assurance that if you get those positive results later, it won’t affect coverage for the long run.  So get the insurance, then get tested, then start making plans.  And, bonus, you pay the same amount the whole time, as inflation keeps going up, so it basically gets cheaper every year.  Please, keep in mind, if you wait too long, and cancer does come, you’ll have even more problems getting insured.

Health Insurance 

Unlike with life insurance, it is illegal to discriminate against genetic information with health insurance.  If you really think about it, don’t all people carry some genes that will cost health insurance at some point in their lives?  The law is really helping to protect all of us in one form or another.

However, here’s a bigger problem for the long-term care of a BRCA positive person: screeners and surgeries.  Once you know you’re BRCA positive, your care team will discuss putting you on a schedule for screeners, surgeries, or both.  Basically, screeners doesn’t lower your chances of getting cancer, but it can lower your chances of dying from cancer or having long term problems from it.  This comes in the form of mammograms, ultrasounds, MRIs, physical exams, blood tests, etc.  If you do them regularly, then you have a much greater chance of having to treat Stage 0 cancer than Stage 4.  Stage 0 cancer involves much less invasive treatments than Stage 4.  Surgeries involve removing the tissues that are most at risk, so they actually lower your chance of cancer.  Whether screeners or surgery, or a schedule for both, is better for you is to be discussed with your doctor.  The problem?  The cost.

When I was 29, my work changed insurance companies.  My old insurance was great at covering all screeners, never once giving me a problem.  Once they knew I was BRCA positive, we were good to go.  So, I called up the new insurance company, hoping to hear the same thing.  “So, here’s the deal, I have a mammogram scheduled in April and I will be having an MRI in the fall.  I just want to know if there’s any paperwork I need to fill out to make sure they will both be covered,” was the beginning to a long, tedious conversation with someone who clearly didn’t know what BRCA positive meant.  “We only start mammograms at 30 if and only if you have a strong family history.  No MRIs.”  Apparently BRCA positive does not indicate a strong family history.  I ended up going up the chain and refusing to talk to anyone unless they said yes to, “Do you know what it means to be BRCA positive?”

As much of a headache as that was, I couldn’t imagine how much worse it would’ve been if I didn’t know I was BRCA positive.  I don’t have the luxury of thinking, “Cancer is a thing that may or may not happen,” and therefore the normal screeners that every other woman does is enough.  Instead, my thoughts are, “Cancer is actively trying to find me and I need to make it fail.”  More aggressive screeners and surgeries are the best way to make that happen.  I didn’t have enough disposable income to go through all those without insurance, as I imagine most, if not all, of you can relate.  So, basically, you want to get tested early to get insurance coverage lined up to begin your fight ASAP.

Family Planning

I once talked to a BRCA positive woman who was adopted.  She had no idea what her family history was, so she did the test just in case.  Her husband’s family had a long history of cancer, so he was tested as well.  Once his came back positive, they made the choice to adopt.  They still wanted to be parents; it was something they had talked about many times over the years.  They just changed their plans from some biological and some adopted to all adopted.

I didn’t make that choice.  I have a biological son.  He is only 3 now, but my husband and I already agreed that we are going to be open and honest with him about what BRCA means to our family.  When he’s older and more mature, he can make the choice for himself if and when he gets tested.  For now, he is a kid, and he gets to live as a kid without this weight on his shoulders.  Because of him, I decided to do screeners until I was done producing milk.  He drank my milk until he was 13 months old (from a bottle, long story there) and I got my preventive mastectomy when he was 21 months old.

Even though we made different choices, and other BRCA positive people may make other choices as well, knowing our genetic history helped shape our family in more ways than one.  The earlier you find out if you're BRCA positive, the sooner you can start having these discussions with your doctors to find the path that is right for you.

Make no mistake, I am not talking only to a small subset out there (for example, people of child bearing age and their partners).  This is important for everyone.  If you are already done having children, so you feel like a BRCA test seems pointless, I want you to consider this: the more genetic history you can provide your children and other descendants, the more chances and choices you are giving them.  When or if your children are adults, they may want to get tested themselves at some point, but may need insurance to pay for the testing.  This process is much easier if you have the paperwork for a direct-line relative.  The closer the relation the better, in fact.  For me, having a BRCA positive sister and dad gave me an instant yes from my insurance company.

Even if you don’t have children, it may help your aunts, uncles, nieces, nephews, siblings, any relative really, if they can know exactly where everyone in the family tree sits on the positive/negative side for the purpose of testing.  Notice I said the process is easiest with a direct line relative, but having lots of information will still help make it easier than having none.  In this case, the more information the better.

Lifestyle Choices

Why do you live where you live?  How much do you drink?  What’s your typical diet?  Do you use tobacco products?  If so, how often?  What college should you go to?  Should you join the military?  What career or job should you have?  Should you take that promotion?  If you knew you had a 90% chance of getting a cancer, would you change any of these choices?  Would you work out more?

Sometimes seemingly inconsequential choices can actually have a bigger impact on your life than you thought.  When you add in a higher risk of cancer, you’ll find yourself analyzing these choices more.

That house that’s four hours from the nearest mammogram center may not be doable anymore or it may just need a little more planning.  You may look at sick leave and benefits more when looking at jobs.  I know teachers who quit once they knew they were BRCA positive for this reason.  Speaking as someone who was single when I got my results, it changes dating when looking at potential long-term relationships.

Knowing this will probably make some people think it’d be better not knowing.  “I want to live my best life and not let fear of cancer hold me back.”  The thing is that your chances aren’t altered by your knowledge of them or not.  But, by knowing the results and making choices based on them, you can give your self a longer, healthier life.  It’s not a matter of being held back, it’s a matter of having the power to choose to fight giving cancer the ability to hold you back.

Think about it this way: There are two ways to get to work.  One way is dangerous and has several accidents a year on it, many of them with fatalities.  The other one is much safer and only has a few accidents a year with far fewer fatalities.  Which would you take?  Obviously, route 2.  Having that knowledge empowered you, not stifled you.  If you hadn’t known, it wouldn’t have made the first route safer, so you’d be leaving home without the data to make an informed decision.

Financial Choices

I’m just going to come out and say it: Cancer is expensive.  There.  There’s no way to say that in a cleaner or nicer way.  Treatments cost money, taking time off work will likely cost money, and buying everything you need for it costs money.  Then, if that’s not enough, it can cost you more in the long run.  Life insurance companies may not cover you or may charge you more.  You may miss promotions or raises because of the time you took off for treatment.

There are ways to keep the costs down, but they all require you knowing if you’re BRCA positive or not.  For example, paying into short and long-term disability because you know you have surgeries coming up may save you money over the long run.  An alternative may be putting more money into savings or short-term investments.  Being able to buy things on sale or second hand that you’ll need during recovery can provide huge savings.  For example, I bought a recliner to use after my mastectomy.  It was not cheap.  Your choices with health insurance can be influenced by this knowledge and save you money in the long run.

On top of all that, if you’re able to know you have a high chance of cancer and you’re able to get preventative surgeries done, then you will take your chances of ever having to worry about paying for certain cancers down to a less than 5% chance.  It takes the burden of suddenly having a ton of bills all at once out of your mind.  While I still had to pay for my mastectomy, it was planned and saved for.  While it was expensive, it was cheaper than the same cost plus paying for cancer treatment.

At the end of the day, there are so many reasons to get the test, to know what battle you have, what your future holds. However, for those who are considering getting tested, it’s a personal choice.  Keep in mind, in most cases, you are just as likely to hear you are BRCA negative as you are BRCA positive.  You are just as likely to hear your cancer risks are the same as most people as you are to hear they are increased.  I can’t tell you what you should do or even what you ought to do; I just know that me knowing was one of the greatest gifts I could give myself.