Community Voices for Health

By: Martianne Stanger

By the time my eldest sister was my age, she had already survived an aggressive bout with cancer and been tested to determine if she had a BRCA mutation (basically a gene mutation which makes one more likely to get breast and/or ovarian cancer).  She did:   BRCA2.

This meant that the “breast cancer gene” mutation runs in our family.  Yet, the question remained: Where and in which branches of the family?

Based on the fact that my paternal grandmother had suffered breast cancer, too, it seemed likely that the gene came down from my father’s side, so my dad elected to get a BRCA test.  He did and the BRCA2 gene mutation was found in him, too.  This meant that each of siblings and I all have a 50% chance of carrying the gene mutation, too.  And, since our sister and father had both tested positive for the gene, it was likely (but not definite) that our insurances would cover the test for us.

With this information, one of my siblings immediately opted to have the test.  That sibling was anxious about it, but met with good news: no mutation.  To date, my other sibling has opted not to get the test.  However, that sibling may choose to do so in time for the benefit of my nieces’ and nephew’s knowledge.

As for me, I gathered facts, weighed options and discussed things with my husband, parents and siblings:

The Facts – Facts I took into account were:

• I have a strong family history of breast cancer.
• The gene runs in my family.
• Regardless of if I tested positive or negative for the “breast cancer gene” I may or may not get breast or ovarian cancer.
• If I tested positive, it could help ensure better screening in the future for both breast and ovarian cancers.
• If I tested positive, my children would have the opportunity to be tested later in their lives, when cancer research may open up new avenues for prevention and treatment.
• The test is simple – a single blood draw.
• A positive result on the test would not affect future chances at getting life insurance, disability insurance or long-term health insurance due to the Genetic Information Nondiscrimination Act of 2008 (GINA).

Options – To Have or Not to Have the BRCA Test

With these facts in mind, my husband and I watched a video which my parents had loaned to me from my Dad’s cancer specialist and then did some online research.  I also spent some solo time in thought and prayer.

There were many options suggested for my consideration, but to me, it all boiled down to three things:

If I opted for the BRCA test:

1. I would have to wait several anxious-filled weeks to discover the results, but I would then have a clearer picture of my chances of getting breast and ovarian cancer as well what courses of actions I might take for improved screening and prevention.
2. I would rule the gene in or out of my branch of the family, thus knowing if my children should one day be tested (That is I would rule the gene in or out from my blood line, at least.  My children could still carry the gene from their father’s side.)

If I did not get the BRCA test:

1.  I’d be left wondering… and my children would not benefit from knowing if I had the gene.

As a woman who feels my main call in life is that of Mother, the decision then became a no-brainer for me:  Get the test!

With the results in hand, I could make more informed decisions about my own health care as well as offer my children a clearer picture of their family health history.  (Mind you, if I were single or childless, I would have likely opted for not getting the test.  The pre-marriage-and-kids me would not have wanted to deal with the extra concern a positive result may have added to my life.  I truly feel the BRCA test decision is not only different for different people, but may also be different depending on one’s age and stage in life.)

With my BRCA test decision deemed a no-brainer, I was ready to move forward.  That is, until I discovered it was not a no “buck”er.

Insurance Puts a Halt on Things

Of course, once I decided to go ahead with the BRCA test, I called my insurance to see if they would allow it.  With my family history and my physician’s order, they said they would.

Done.

I went to a drawing station, had my blood drawn and, then, began waiting the weeks it would take for the results to come as my blood was sent out to Utah, where the one lab in the country that actually runs the test would do its piece, I was a bit shocked, then, when that lab called me earlier than expected.  Was I okay?  Did they need a new sample?  Did they find some other weird mutation in my blood?  My head spun with questions as I listened to a brief message from the lab and called them back.

As things turned out, none of the crazy scenarios I had running in my head held any merit.  Rather, the lab is just a very thorough one that keeps all aspects of its clients’ needs in mind.  Before running the test, which costs hundreds to thousands of dollars, they had double-checked with my insurance.  My insurance, in turn, had denied coverage.  So, the lab wanted to know if I would rather pay out of pocket for the test or to abort it altogether.

I was sure there had been some miscommunication with my insurance company, which I had spent ample time speaking to before even going in for my blood draw, so I asked the lab if I could call back with my decision.  Then, I promptly called my insurance.  As things turned out, “yes” they would pay for the blood draw for the test.  “No,” they would not pay for the actual lab work of the test.

Who knew you had to clarify all that when making initial calls?  (Thank goodness, the lab did!)  The test cost a lot of money that my husband and I did not have in our budget.

So, I called my physician’s office.  My physician confirmed that with or without positive results from the test, he intended to order mammograms and/or MRI’s for me once every six months to screen for breast cancer due to my family history.  This planned course of action made the test seem less urgent to me.  (I neglected the ovarian cancer risk part then.)

I spoke with my husband and we decided that since we knew that I would be having increased breast cancer screening even without the test and since our insurance would be changing soon, we would wait on the test.  As long as we did it before our children were of age to decide if they wanted it, that would suffice.

A Second BRCA Draw

Not someone who likes to wait long periods of time for anything, once our new insurance was in place, I called to find out of they would cover both the blood draw and the actual lab part of the test:  Yes they would. . . with a co-pay.  We budgeted for the co-pay and asked my doctor to order the test again.

Reminding me about the ovarian cancer implications that I had previously overlooked, my doctor agreed to order the test, but suggested that I see a cancer specialist for genetic counseling first.

I did so.  She was supportive, real and ready whenever I was to go with my decision.

So, my blood was drawn again and an appointment was set to receive the results.

An Unexpected Response

On the day of that appointment, my husband had to work, so my parents offered that one of them could watch my children while the other accompanied me to hear my BRCA test results.  I thanked them for their support, affirmed that I was not really that concerned about if the results were positive or negative and asked them to simply enjoy some time together at a local park with my children while I popped over to the hospital for my results.

Truth be told, I somehow expected the results to be positive, but was not phased by this thought as I headed to the appointment.  I thought I was ready to take the paperwork in hand, saying, “Thank you.  What’s the next step?”

As things turned out, my instincts were correct, but my intentions went awry.  When the actual positive resulted was related to me, I was okay.  I even chatted with the doctor a bit about next steps.  But, as I made my way out to the car to pick up my children, an unexpected burst of sorrow came over me.

I carry the gene.  My chances of cancer are higher.  My kids may have the gene.

Tearfully, I called my mum to let her know I’d be a few minutes, before going to collect my children afterall.  I needed to pull myself together.  She offered words of support that only my mother could and told me to take as much time as I needed.

The Aftermath  — A Family Affair

 A good cry, a prayer, a drink of cold water and I was off.  I released fear and guilt and realized nothing had really changed for the worse.  The gene mutation was always in me and with the information I now had I could move forward with a better informed health care regime.  Know (and love, if possible) thy enemy.

For my dad, the mourning, so to speak, was longer.  Silly me had not even thought about how it would affect him to know that his baby carried a gene mutation from his family lone.

After supporting his eldest through cancer it broke my father’s heart to imagine that he might one day find himself doing the same for me.  He also expressed a sense of sorrow, and even guilt, that he had passed the gene onto me.  I assured him that it was not his fault and that he also passed much good onto me, in nature as well as nurture.  I assured him I love him and know he loves me and that love stronger than any silly gene.    He was somewhat comforted, I think.  However, even now, I sense his angst whenever BRCA or cancer comes up.

My husband also went through an unexpected period of emotion upon receiving my results.  The prospect of raising our children without me loomed in his imagination.  “Please,” I told him, “don’t write me off yet.  I have a gene mutation, not cancer.  I am perfectly healthy and now can do even more to ensure that I stay that way or, at least, catch any cancer early on.”

And my children?  Well, they don’t know anything about the BRCA test yet, but they will one day.  On that day, I hope they feel empowered by knowledge, faith and their ability to choose a course of action that is in the best interest of their own health protocols.  I also pray that one day when research has moved us a little further along in fighting the worst of cancer, the BRCA decision won’t loom so largely in folk’s minds.  It will be a routine step toward a complete – and usually successful – health care regime.

Next Steps

So where am I now?

Due to a surprise pregnancy and, then, a year of nursing, I have not received the breast screening I was supposed to, but have it scheduled.

I have, however, faced a decision to describe another day:  What to do about my increased risk of ovarian cancer.

I have also continued to believe in three things that played largely into my BRCA test decision:  faith, family and the idea that “knowledge is power.”

If you or someone in your family has questions about a BRCA test decision, I encourage you to seek facts and weigh your options.  Talk to your physician, a cancer specialist, and/pr a genetic counselor.  Reach out to other women, like me, who have made the decision before.  Do research.  Then, rest in your decision.

Wishing peace and health to all!