When I moved abroad after high school, my biggest fear was that some big medical emergency would happen in my family, and I wouldn’t be able to get home on time. When I shared that fear with my parents, my mom told me in so many words that she would try to keep such things from me as much as possible so that I wouldn’t worry too much. Clearly, I was unpleased by this response. I made my parents promise that even though I live 7000 miles away, there would be full disclosure between us on the important topics, and the non important things in between.
Aside from a few incidents with my grandma and my uncle, both of whom are healthy now *knock on wood* , the past nearly six years since I left home have been remarkably quiet and healthy. Then, a couple of months ago, I got a call from my mom. I had just gotten out of the shower after a run, and was in the process of getting ready for an afternoon shift at work. I distinctly remember feeling like this was a really inconvenient time for a phone call, but we had been playing phone tag for two days, so I answered. She started out by making sure that now was an okay time to talk, and I said it’s fine as I wrapped my towel back around me and sat down wet on the bed.
“So I went to the doctor a few weeks ago, and she told me that I have to get checked for the BRCA gene given my dad and aunt both passed away from pancreatic cancer. As it turns out, I’m a carrier of the BRCA1 gene mutation. The doctor told me I would have to get my ovaries and fallopian tubes removed as soon as possible. Since I am a carrier, you and your sister will need to be checked, too,” she told me.
Let’s back up for a minute. The BRCA gene is a gene that raises the chances of getting breast, ovarian, and pancreatic cancer. The mutation that my mom has means that she has a very high risk of getting ovarian cancer, as well as breast cancer, and an elevated risk of getting pancreatic cancer. My mother is a perfectly healthy woman. She goes to the gynecologist once a year, get’s her regular tests, as well as yearly mammograms. But now, she was telling me that since she is the carrier of this gene, she will need to go through surgery to lower her risk of getting sick. Moreover, I, a perfectly healthy and fit 24 year old, now needed to be tested for this gene, so that I can take the necessary measures to keep cancer at bay as long as possible. Not only that, but I live abroad, and I had no idea how I could even go about this in the medical bureaucracy here.
I asked her if she was healthy now, she said yes. I asked her what the risks the surgery (for those wondering, it's called a salpingo-oophorectomy) were, and she told me that the procedure was laparoscopic and common, and that I had nothing to worry about.
My mom, in general, is remarkably selfless when it comes to my sister and me. She won’t show her fears as not to worry us. Still, I was worried for her. Not because I was overly worried about the surgery, as I know and trust her doctor. More for my mom’s mental and emotional states. There is a scary complex about longevity of the women on my mom’s side of the family, since both her mother and aunt passed away before reaching 70. So, I couldn’t even begin to imagine the emotional repercussions of my mother finding out that she had a high risk of getting cancer.
After asking my questions and promising to do some research about the process of getting genetic testing in this country, I made a joke about how my mom gave me the fat knee gene and I’m dealing with it just fine, so I can deal with anything else that is thrown at me. I’m known as the funny one in the family, so I felt the obligation to get a laugh in before hanging up from the call I had hoped would never come.
Yes, my mom was still healthy, and everything she had to do from here on out was as a precaution. But it was still difficult for me to grasp because, frankly, I wasn’t 100% positive what it meant. It’s also difficult to have these kinds of conversations over the phone because I can’t gauge my mom’s emotions over the phone as easily and I can in person.
At work, I was distracted, so I opened up Google in order to get some answers about the testing process in Israel. After a number of calls to my insurance company, I finally got on the phone with a kind woman, who took the time to explain the process to me. From there, I made an appointment with my primary physician for the following week.
I have been living in Israel for nearly six years, and my Hebrew is perfectly fluent, but when it comes to medical terms, I always feel more comfortable speaking with a doctor in English. I always feel the need to completely understand every single word, because I am always afraid that I will misunderstand something important. If there is one thing I have walked away from this process knowing, it’s that fully understanding everything in a language that makes perfect sense to me is the most crucial part of receiving medical care.
So, I went to my appointment at my primary physician, and she explained to me, in English, that I would need to make a special appointment at a genetics and oncology clinic through the insurance company in order to meet with a geneticist. I was also told that getting an appointment can take up to six months, because my insurance company only has three such clinics in the country, and each only has one geneticist. I sent my faxes and made my calls, and in the end got an appointment for the middle of June, six months away.
After that, I put the issue out of my head. I focused on the fact that I was healthy, training for a marathon, enjoying some time to relax while working shifts at a hotel. Up until one Tuesday morning when I got a call asking if I wanted to push my appointment up to the next day. Not surprisingly, I was available, and I agreed. I immediately called my mom and received all of her test results and family history, and began mentally preparing for the next day.
I can only describe my time with the geneticist as strange and eye opening. After taking a thorough account of genetic family tree, she sat back and asked me (in English), “Why do you want to get tested now?” It was the million dollar question. She explained to me that I am young, healthy, and unmarried, so why am I coming in to get this test now? She also explained that this test has much larger emotional repercussions than I am taking into consideration.
“Let’s say you’re a carrier. What will you do about it? Will you get a double mastectomy in order to prevent breast cancer? Ovarian cancer won’t be an issue until age 35 at the earliest, but will you start planning your life around a hysterectomy that you’ll have in 25 years from now? Let’s say you’re in a serious relationship and you tell your partner that you’re a carrier. Will he be willing to build a life with you knowing full well that you have a very high risk of getting cancer? Why do you want to know now, when most of the risks aren’t relevant for quite a few years, and the risks that are relevant can be kept in check without you being tested?
Over the next hour or so, the doctor and I discussed these questions. Truth be told, I don’t have a plan in place if I am a carrier of the gene. However, I am the kind of person who needs to have all of the information in order to feel in control. I want to be able to have a rational plan in response to whatever the outcome may be. If I am a carrier, I want to know now instead of having the possibility hang over my head for the next five to ten years until I am ready to get married and start a family. I want to do everything in my power to reduce my risk, and in order to do so rationally, I need to know what my risk is.
After a long conversation, the doctor agreed to draw my blood, and told me that within six weeks I would either receive a letter in the mail saying that I am not a carrier, or I will be called in for another appointment and planning session.
The whole experience made me think about watching 90201 a few years back when I had weekends home alone. In the fourth season, Erin Silver gets tested for the BRCA gene, and begins a downward spiral ending in her trying to coerce her friends to donate their sperm so that she could have a baby right away, and then get her ovaries and breasts removed. At the time, I didn’t really follow and I was sure that she already had some terrible disease. Turns out she just had a very uninformative doctor. When I think back about her reaction to being a carrier of a gene that elevates her risk of getting ovarian cancer after age 35, elevates her risk of getting breast cancer at some point in her life, I practically laugh. The fact that her fictional doctor on the fictional show told her that she needs to have kids now and she needs to get her ovaries and breasts removed now makes me understand that this is an issue among young women that is not being addressed properly. Young women will watch this show and think that Erin Silver’s reaction is the rational one. Well, ladies, I urge you to speak with a real life doctor before doing anything rash. Talk to you mothers, they often times hold more answers than you think.
I recently received the test results, and by some stroke of luck I am not a carrier. However, I am still glad that I got tested, because otherwise I would have never known. It makes me feel in control of my life and my fate, which is a rare feeling in this day in age. If I were a carrier, I know that I would have a supportive doctor behind me to help navigate the risks and outcomes. As I am not a carrier, I feel like there is one less question mark hanging over my head.
Here is what I learned from the experience:
Have a good relationship with your mom, and your entire family. They serve as a backbone and point of reference, especially in situations like this.
Always make sure you understand every word your doctor says, in every situation. It’s completely acceptable to ask your doctor one thousand questions, and to ask him or her to repeat themselves in simpler terms. If they get annoyed by that, you should find a new doctor!
Share your feelings with your significant other. When I talked to my partner about this process, I found that he saw the whole thing very differently than I did. It helped me ground my thoughts, and made me feel good to have someone who cares about me in the loop.
Don’t avoid doctors, they are actually really knowledgable and their job is to help you. As much as I don’t love going to the doctor, I am so grateful that I got over myself and went in to see one.
If you feel like your doctor is not a good fit, you should switch doctors. I know, easier said than done, but the people you should feel most comfortable with are first yourself, then your mom, then your doctor.
Sit down with your parents to get a family history at some point. You never know when it can come in handy.
Tell your family members that you love them every time you speak, because other people will come and go in your life, but family is forever.