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"There is a mixture of emotions, much like with anything in life, but I never for one second regret it."
Megan Guerin was 30 years old when she decided to have a preventative double mastectomy and oophorectomy to remove her breasts and ovaries due to a family history of cancer. She now looks back on her experiences and what lead her to make her decision:
Did you notice any patterns in your family’s health history before getting any kind of genetic testing?The short answer is yes. My mother had ovarian cancer when she was 42, and my father’s mother passed away from ovarian cancer at the age of 39. When my mother was diagnosed, I was a senior in high school, and news about BRCA was ostensibly just coming to light. I remember seeing BRCA everywhere after I found out what it was, and I even read a book, “Pretty is What Changes” by Jessica Queller; she was a young woman with the BRCA 1 mutation, and facing a lot of the same decisions I eventually had to face. A lot of the information I was seeing, in my limited year 2000 research, was that the BRCA mutation mainly effected the Ashkenazi Jewish population. Being Irish-Catholic, I kind of put all things BRCA on the back burner. I did; however, ask my doctor at the time to have the test. Since I had no clue of the extensive family history of breast, ovarian, and prostate cancer that runs rampant on my mother’s side, the test was not covered by my insurance. I remember the only lab processing the tests at the time calling me telling me the test would not be covered by my insurance, but I could set up a payment plan to cover the cost. I was only 18, and was working part-time, I said thanks, but no thanks. Reflecting back on that time, I am so thankful I did not know about the extensive history on my mother’s side. I got the news at 30, and my world was rocked, I don’t even want to think about what 18 year-old me would have done with that grenade of knowledge.
What brought you to NorthShore and the Center for Personalized Medicine? I have always been a patient at NorthShore, even before it was NorthShore-NorthShore, I was going to Skokie Hospital. When the hospitals merged to become NorthShore University, I thought, “Cool, more options.” That was all I thought at the time. Fast forward a few years, and my aunt (my mom’s sister) was diagnosed with stage 1 breast cancer. She was relatively young when diagnosed, very early 50’s, so she started piecing together the puzzle. My aunt was actually the one who received the genetic counseling first with Dr. Hulick. When she described to me the rich family history of cancer, my jaw hit the floor. Just because I had put BRCA on the back burner, didn’t mean I forgot about it. If there was an article on the internet or a news story about the mutation, I would still pay attention. When my aunt got tested with Dr. Hulick, for some reason I had this notion in my head that if she was negative for the BRCA mutation, that would automatically mean I was negative. I had already made my appointment with Dr. Hulick, but it was like this weight was lifted off my shoulders. Then came my first appointment with Dr. Hulick.How did you feel after your consultations with Dr. Hulick about genetic testing and your results? After the first appointment my jaw was on the floor again. I am a very visual person, so I tend to respond to visuals more than words; I was lucky enough that Dr. Hulick already had all the information from my mom’s side of the family, I just had to provide my dad’s side. I went to the one person who would hold all the answers - my Aunt Maureen. When I told her I was getting tested she was so happy, not that I could have this horrible mutation, but because she had a gut feeling something was going on, and this was without her knowing my mom’s extensive history. I picked up her perfectly handwritten family tree of death, and I was off. My dad’s side of the family doesn’t have the longevity in life that my mom’s does, but it also doesn’t have the cancer like my mom’s does. While I was waiting for Dr. Hulick in the little office, I was reading my aunt’s notes. Once again I thought, “I am going to be SO negative.” Dr. Hulick and my counselor walked in, they took a look at my aunt’s note, added it to the paperwork they had, gave it back to me, and that’s when I saw it for the first time. My mother’s side of the family tree looked like a morbid game of tic-tac-toe, a circle for everyone who has had cancer, and an “x” for anyone who had subsequently died from the cancer. Dr. Hulick had said something along the lines of, “If it is not BRCA, it’s something else, and we’ll keep searching until we find it.” After seeing and hearing that, I remember signing some paperwork, taking the elevator up a few floors, getting my blood drawn, and sitting in my car thinking, “What just happened?” Oh, I wanted to be tested and was 100% behind that decision, but it was like someone hit me upside the head with some sort of perverted cancer bat, and knocked me back into reality. The blood test itself takes two weeks to process, and I had made a phone appointment with Dr. Hulick to go over my results. Two weeks is a really long time when waiting for information of this magnitude, so it was a little stressful, but I remember feeling fine. I would say a good 90% of the time, I still thought there was no way I could have this mutation that only 2% of the population has, and of that, 2% most women and men were of Ashkenazi Jewish decent. I was at work, and I reserved a small conference room to take the phone call in. I brought one of those small legal pads of paper to take all my notes on how negative I was. Dr. Hulick, in his very calm and relaxing voice, told me very evenly that I was positive for the BRCA 1 mutation. There is a difference between BRCA 1 and BRCA 2. I once again thanked the amazing Dr. Hulick, and started heading back to my desk. I am in customer service, and when I got back to my desk, I sat down, looked at the small legal pad, and the only thing I wrote down was the word “positive.” I started crying hysterically and had to go home. On my way home, I saw a deer, living its best life, and I just looked at it, and said “F you deer.” I have been apologizing to the deer community ever since.It was another two weeks until I would see Dr. Hulick for the last time on this crazy adventure. This appointment was like one of those situations where you see someone and you don’t really remember how you left things with, you know it wasn’t bad, but you’re not sure it was great. As soon as I saw Dr. Hulick, that self-imposed awkwardness went away, he was patient and kind and understanding, all of the things he had always been, but now I got to see it without my rose-colored glasses. He asked if I had thought about what I was going to do, and gave me all the information I needed on the next steps of this process. He was incredible and professional, he invited me to be a part of this greater conversation. For that alone, I will always be indebted to him. Never once did I feel pressured to make this decision, there isn’t a certain period of time you have to give saying this is what I have decided. There is no anything period, one could take this information and throw out the window of their life. I gave myself two weeks. During those two weeks, I was so distracted by this decision, but it was a decision I do not regret for one second. Getting pre-emptive surgery for both breast and ovarian cancer is an incredibly big, especially in your 30’s what factored into your decision to go forward with surgery?When young people say, “That was hardest decision of my life,” I tend to think, you have not been alive long enough to look back, reflect and make a statement like that. I was dumb. This was the hardest decision of my life. I was single and 30, although I have a strong sense of who I am as a woman, I turned into a shell of myself. I was questioning everything: If I get a mastectomy, and reconstruction, what will I look like? Will any guy still want to be with me? Although I always knew I didn’t want kids, I was questioning everything. I did all the research I could possibly do, I have a friend that works for an infertility doctor, and she was able to set up a consultation with him. During this time, I had the ability to look at everything and weigh my options. Information is a wonderful thing; however, I was also getting tests done just as the next step of the process, while meeting my care team for the first time. For me personally, going for the tests was starting to wear me down. It seemed like every day was a blood test, a mammogram, an MRI, an ultrasound, or something else. I was going to these tests and appointments alone, and for anyone at any age, going to these appointments can make the sanest person a little crazy. The whole thing started to play mind games with me, instead of looking for a silver lining, I started guessing when I would be told I had cancer. I knew the only way I could do that was through surgery. It was not an easy decision by any means, but for me, the testing and wondering was harder. I would have to get screened every six months, something I just could not see myself doing for any length of time. Since I still have my ovaries, I still have to see my gynecological oncologist, Dr. Elena Moore, every six months. About three weeks before the appointment, I get anxious, but it is not nearly as bad as it was. I also plan on getting my ovaries out at the end of the year, which will reduce my risk to almost 0% for breast and ovarian cancer. You had quite a big care team! How did they make the NorthShore experience for you? If there was some awesome, magic machine that could combine the insane power of the Michael Jordan-lead Olympic Dream Team, The Avengers, Oprah and Ellen DeGeneres that wouldn’t even halfway describe how my care team empowered me through this process. I use the word empower, because every single step of the way, each doctor not only respected my decision, but supported my decision. For me, being 30 years old and facing this crazy magic carpet ride of choices, surgeries and tests, that single piece, the fact that they ALL made me feel empowered was awesome. After the surgery, the nursing staff and I had become so close. I had some complications after surgery, and I was in the hospital for New Year’s Eve, and my nurse came in at midnight and celebrated with me. It was time for a pain killer, and she brought me a can of ginger ale. As corny as this sounds, that has been my favorite NYE celebrations to date, at the very least my most memorable. NorthShore kind of slipped into my life. My NorthShore care team has become like winter in Chicago for me; I curse up and down when I have to drive through the snow, shovel 23 inches, or have to wear 34 layers, but there is nothing like seeing fresh snow line the Chicago streets, or the fun of Michigan Avenue during the holiday season, or experiencing the snow for the time through a child’s eyes. I dread some of my appointments, because it could be really really bad, but once I am in there with any member of my care team, it’s like I grabbed a blanket, a book, and I am watching the snow outside, knowing there is nowhere I would rather be. Once again, thank you to Dr. Diaz-Moore, Dr. Yao, Dr. Sisco, and the countless other staff at NorthShore that helped me through this. I know it is your job, but it was not your job to take a frightened 30 year old and make her feel okay. Was there anything in particular that kept you going during your busy surgery schedule? What kind of support system did you have throughout the process? I wish there were bigger words than "thank you", because there are countless people who deserve it. My family, especially Mack, my younger brother who became my personal chauffer after surgery. He was 24 at the time; what kid would want to just sit at the hospital with his sister? He did, forever grateful. My mom, who helped with my wound care when I got home. My best friend Charli, whomade me laugh; this list could go on and on, but I am sure people don’t want to read my Oscar’s acceptance speech.For me, personally, mental health is just as important as physical health. My therapist would regularly text me and call me just to make sure I was okay. Through her, I was able to express the fears and negative thoughts I felt I could not share with anyone else. This also made the process of decision making and executing those decisions easier. I still see my mental health care team, and again I owe them SO MUCH. No words can explain how grateful I am.During this time, I also got involved in a fantastic non-profit called Bright Pink. They are the only national non-profit that works on early intervention and prevention in young women. I started to go to their outreach programs for high risk young women, and I made some of the best friends of my life. I was able to sit with other people my age, who were high risk. Some of them were not tested for mutations, but had a strong family history of breast and ovarian cancer. I got first-hand accounts of a lot of topics I was worried about. Through Bright Pink, I made some great friends, and also gained a future sister in law!!! I figured Mack, my rock through everything, deserved to be set up with a spectacular young woman who worked for the organization. They got engaged this past 4th of July.There was also reading, I love love love to read. I get lost in books, and love every type there is, except maybe romance. I read so many amazing books while recovering. Sure, it was a bit of escapism, but that was exactly what I needed at the time.