WHY YOU SHOULD NEVER IGNORE YOUR FAMILY’S HEALTH HISTORY + WHY I’M CELEBRATING TODAY
I debated sharing this because to be honest, I didn’t know if any of you would actually care about reading something like this. Today’s post is a little different from what I normally write about, but I think this is far more important than anything I normally write about. Today I’m talking about your health, and why you should never, ever, ignore your family’s health history. Brace yourself because this is a long one, but I think it’s so important.
Those who are close to me in real life or know my family would know that back when I was a freshman in college (nine years ago now…..how is that possible? eeeeeek…), at the young age of 41, my mom was diagnosed with breast cancer. It came as a huge shock to us all, and seemingly came out of nowhere. She seemed to be healthy, felt fine, and there didn’t appear to be too many warning signs (other than feeling the lump). After a long road of chemotherapy, a double mastectomy, and reconstructive surgery, she was in a lot of pain, and didn’t feel quite like herself, but was well on her way to recovery. I can happily say that today, nine years later, things are still going well and she’s been a breast cancer survivor for a while now.
When my mom became diagnosed with breast cancer, it encouraged her siblings and the rest of the family to go to the doctor, as it does in many families. As it turned out, her sister (my aunt), also had cancer cells found in her breast tissue. She did a round of radiation and is doing great today. Their grandmother (my great-grandmother) also had breast cancer in her lower 40’s. I often wonder that if it weren’t for my mom finding out she had breast cancer, would my aunt have ever known or been checked before the recommended age? It’s chilling to think about, but what matters is that all are healthy today.
As you can imagine, since then, I’ve spent an unhealthy amount of time throughout the years worrying about if I will get this horrible disease, or if others in my family will. When three people on your mom’s side have all had breast cancer in their 40’s, it starts to feel less like a coincidence, and more like it’s in your genes. I won’t even get into all of the numerous people on my mom’s side of the family that have had different types of cancer. To be honest, I couldn’t even list them all, but it’s a scary amount.
I’ve always been someone who’s gone to the doctor regularly for check ups (not so much the dentist lately… shhh…. 😉 ). If you go pretty regularly, or see a new doctor, then you know the drill… they always ask about your family history. When seeing a doctor, I’ve always been very open and honest about my family history. At every doctor’s appointment in the past nine years, I’ve always brought up my mom’s past with cancer. And guess what… EVERY single doctor until this past year has told me in less or more words, “Don’t worry about it sweetie, you’re young.” Those who know me know how stubborn I am, and to me, this just didn’t sit right. Hearing doctor after doctor tell you for almost the past ten years to not worry about something that seems like more than a coincidence is scary, annoying, and downright frustrating. I can’t tell you how many times I wondered why I was worried if my own doctors didn’t even seem worried. Was I being a worrier? Dramatic? Stupid?
Rewind to a couple years ago when I finally found a doctor in the Boston area I love and that fits into my insurance network (those of you who also just got off your parents’ health insurance know the struggle is so real). I truly love my doctor and feel that she’s extremely patient, understanding, and caring. After bringing up my concerns to her, she recommended I see a genetic counselor. I’ll be honest, I had no idea what a genetic counselor was. However, on my own, I researched and realized that they basically map out your family history of a particular disease (for my family it’s cancer), and decide if you’re at risk and what age is appropriate for any extra screening (if necessary).
I spent the next year trying to find a genetic counselor that was in my insurance network. To my frustration and dismay, not even a single genetic counselor was in my network within a 250 mile radius. To say I was devastated and frustrated was an understatement. In a perfect world I could spend thousands of dollars on a genetic counselor that was out of my network and everything would be fine, but financially, it wasn’t an option for me.
By the grace of God, after searching once a week for literally a year, I finally found that the original genetic counselor that my doctor recommended to begin with was now in my network this past May. A huge relief. After making the appointment, I finally met with the counselor. If you ever meet with a genetic counselor or are just curious about what the process is like, what’s typical is that you give your entire family tree. The genetic counselor goes through the tree with you person by person and you say whether they’re living, about how old they are, and their connection to you. It’s a bit overwhelming, especially if you have a large family, or if you have distant family members you’re not as close to and don’t know their health history. After writing down just half of my family history she told me, “I’m so glad you came in.” It’s at that moment that I mentally said “I told you so,” to all of my past doctors who thought my concerns were crazy. Mature, I know 😉 , but I think we know ourselves better than anyone else.
After going through the rest of my family tree and filling out as much as we could, the genetic counselor puts some of my information into a computer algorithm that can predict the likelihood of you getting breast cancer based on family history and a few other factors such as height, weight, etc. Thirty percent. While most might be crying, the genetic counselor explained to me that in the grand scheme of things, this was good news because it then gave me access to more advanced screenings such as a breast MRI.
I was then handed a pamphlet with known genetic mutations that can cause breast cancer. Since medicine has come so far, there are many more known genetic mutations than there were nine years ago when my mom first had genetic testing done. Perhaps the most well known genetic mutations are BRCA1 and BRCA2. We knew that these were both negative going in because of past genetic testing (thank goodness), but the list of twenty or so other genes wasn’t making me feel any better.
A genetic mutation that the genetic counselor thought this whole fiasco could possibly be – TP53. I had never heard of it until my appointment, and even after all the research I did, I still didn’t quite understand. Of course, when looking at the pamphlet in front of me, I notice that it’s the only genetic mutation on the entire sheet that puts you at risk for up to ten cancers. I shudder but try not to think about it.
During the appointment, things don’t seem so bad. It felt empowering to finally feel like I was in control of my health and was taking the necessary steps to remain healthy. After I leave and talk to my family and Geoff is when things start to sink in and I really start to worry. My first mistake? Googling the genetic mutation. My mind goes through every single “what-if” and everything that could go wrong. Would I need to get preventative surgery? What if something’s already there? Since I have siblings, my genetic counselor recommended that my mom be the one to update her genetic testing and be the one to find out if any of the more recently found genetic mutations are present. It took my mom three months to be able to get in to her doctor to have the genetic testing updated, then another thirty days to get the results back. I barely slept for a month. I worried non stop, felt anxious, and felt sick to my stomach.
Today, I’m happy to share that my mom’s genetic testing results came back with ZERO known genetic mutations. I can’t tell you what a huge relief this is to me. While it doesn’t put me completely in the clear (I still have to get breast MRI’s and still have about a 30% chance of getting breast cancer), it’s definitely eased my mind a bit. I thought it was important to share my story in case any of you have had similar worries about your own health or have a large family history of a particular disease.
While I don’t feel comfortable sharing the specific health recommendations she made for me (I’m not a doctor, people), I would encourage you to make a genetic counseling appointment if you have a strong family history of a particular disease in your family. While it’s scary to think about the “what if’s,” it’s scarier to do nothing about it! If you feel that your doctor isn’t taking your health concerns seriously, CHANGE DOCTORS! While this whole experience was frustrating at times between trying to find doctors that would fit into my health network, contacting my insurance company to find out what would be covered and what wouldn’t, and trying to get referrals, trust me when I say that your health is worth the temporary annoyance.
If anyone wants to chat further or if you’re located in Boston and want the name of the genetic counselor I saw, you can email me at email@example.com