Jon sat across from me before drinking his morning coffee, trying to accumulate enough spit to fill a large vial.
"Ew, what are you doing?"
"It's the 23andme genetic test I ordered online, remember? You're doing it next."
I made a face. I was feeding our 15-month-old daughter, Edie, her morning oatmeal, and I was a bit delirious from being up several times the night before breastfeeding our newborn, Cooper.
"Seriously?" I protested. It wasn't until the following day that I gave in and filled my vial too.
Jon thought it would be a cool thing to do. His Twitter friends were all abuzz on "world DNA day" about 23andme, the company Sergey Brin's wife started. He got a good deal on the tests and was eager to send off our spit. The only problem: You can't send spit in the mail in New York. Luckily my parents were visiting from Connecticut over the weekend and happily agreed to mail in our spit samples for us.
I had no idea what the test would tell us or even what it was testing for. By the time my six-week post-birth checkup came around I had completely forgotten about the test altogether. I asked my OB/GYN whether I should get tested for the breast cancer gene now that my sister was just finishing up a horrible year fighting breast cancer with chemotherapy, a lumpectomy and radiation. My sister tested negative for the BRCA1 gene and my mother was negative too. We didn't have any grandmothers or aunts with breast cancer in our family. My sister's cancer was "random" and therefore my doctor said there was no need for me to be tested. I would just need to get mammograms.
The very next day Jon called me from work to tell me he got my 23andme test results via email and I was BRCA1 positive. I was shocked that I was the one with the gene and yet my sister was the one with the cancer. I would learn later that there is a correlation between BRCA1 and prostate cancer in men, which means my father must have been the parental carrier who passed down the gene mutation to me. My father had prostate cancer 15 years ago and is 100 percent cancer free and healthy today.
Jon asked if I was okay after hearing the news, and I was. I felt fine. I assumed this meant I would need to have more vigilant breast screenings from now on, maybe MRIs too. In the days that followed Jon vigorously Googled everything related to BRCA1. That was typical for Jon. It took me many more days to even address the issue at hand. That was typical for me.
I casually told my best friend in an email that I was BRCA1, which suddenly felt like my new identity. She quickly called me back sounding alarmed. She knew people who were BRCA1 positive like me and who had had prophylactic double mastectomies.
"Well that's a little drastic, don't you think?" I couldn't believe what she was telling me.
That's when I started tuning in to what Jon was telling me about his research findings. Having the BRCA1 genetic mutation meant my chances of getting breast cancer were above 80 percent over my lifetime. I had a hard time grasping that breast cancer was genetically fated for me. The more that I learned, the less crazy a double mastectomy sounded. It's the only way to eradicate your chance of getting breast cancer when you are BRCA1 positive. Not doing the mastectomy would mean a lifetime of worrying as I waited for early detection of cancer. And then what? I am not as strong as my older sister, and it was hard enough watching her battle breast cancer. I couldn't put myself through what she went through at some future time, especially with two babies to consider.
One week later we met with a genetic counselor and had the test redone. I had already made up my mind about my breasts, but Jon and I were still secretly hoping this was all somehow a big mistake or that Jon's online findings were somehow inaccurate. But genetic counseling confirmed the research and my decision. I would have my double mastectomy within the year while my children were still babies, and I would have my ovaries removed in four years when I turned 35, because BRCA1 mutations also increases your risk of ovarian cancer.
Surprisingly, the decision to have my breasts removed wasn't difficult to make. I didn't struggle with the decision the way other women do. I felt that I had no other option and I didn't need to postpone the surgery since I was done having babies. Jon and I never planned to have our kids so close together but now knowing my situation we are thankful Cooper, our second, came when he did, just 14 months after our first, Edie. He was a miracle baby who arrived just in time so that I could take care of what needed to be done and then go on with the rest of my life worry-free about breast cancer.
The difficult decision for me was whether to do reconstruction with the typical implants or do the more drastic FLAP procedure using tissue, fat and skin from my stomach to recreate my breasts. I didn't like the idea of having foreign objects placed in my body that would require maintenance every 10 years, but on the other hand I was hesitant about having a 10-hour surgery and having a longer hospital stay. I didn't like either option. I went back and forth a few times until I decided on the DIEP FLAP. I wanted my chest to be natural. I wanted it to be me. Plus, with the FLAP procedure I got the added bonus of having a super duper tummy tuck.
My small breasts finally worked in my favor for once; after two pregnancies I had enough stomach flab to recreate about 80 percent of my chest. And even though my plastic surgeon said it made no difference whether or not I gained any weight before surgery, I ate cheeseburgers and fries almost daily to maintain my flabby stomach. I am probably the only mother who tried not to lose her baby weight.
My surgery was scheduled for the end of September, less than four months from when I originally received the 23andme results. It sounds like a short period of time in retrospect, but I was an emotional wreck most of the summer -- making the time go by much more slowly. I cried all the time and felt sorry for myself. I had to get it over with. I loved my surgeons, my mother could take time off and I had childcare in place. I had to get it over with.
It was scary going into surgery, and it was even more awful when I woke up. I was in the hospital a total of eight days. On the morning following my surgery I had to go back into the operating room because of a kink in one of the blood vessels that had been reattached when it was moved from my stomach to my chest. I spent most of my recovery in a step-down room with four beds and a nurse's station next to me. Nurses and doctors checked on my constantly. I couldn't sleep at night, I could barely move, and I was in agony. I pushed my morphine button more than 240 times one night in desperation even though medicine could only be dispensed every 10 minutes. My hospital experience was way worse and much longer than I anticipated. I missed my children terribly.
At the end of my hospital stay, I was in my own room and had a nice little medication cocktail thanks to the pain management team. With help from a nurse was able to take a shower. I had five drains coming out of my body. I had stitches on each breast mound, from hip to hip, and around my belly button (which had to be moved).
When I went home from the hospital I had trouble looking in the mirror. Jon, who couldn't have been more loving and supportive, wasn't fazed by my appearance, but it would take me some time to get used to this new look. I had no nipples. I had a hard mass of tissue on the left breast, which made me look uneven, but mostly my chest was flat. I hated my scars. I was bruised and stiff. I couldn't lift my arms up to the side, and I couldn't lift my babies. It was tough but I was happy to be home. I was on the other side.
My body healed quickly and by week four, post surgery, I could raise my arms to my ears. I was able to sit on the floor and play with the kids and keep up with their routines at about 70 percent. I was tired and anxious to get back to my old self even though I knew I was making great progress.
Everyday gets a little easier and I am sure I'll feel totally great just in time to schedule my remaining surgeries. I am going to do minor surgeries in the months to come to add volume and create nipples. In time, my scars will fade, I'll get back to doing yoga and running around at the park with Edie without someone helping me out. In time, BRCA1 won't be my identity.
Jacqueline Kravette: BRCA: 'I Won't Be a Statistic': My Decision to Get BRCA Tested
Dina Roth Port: 'Previvors': The Fight of Those at High Risk for Cancer
BRCA1 - breast cancer 1, early onset - Genetics Home Reference
Breast Cancer (BRCA) Gene Test
A wonderful article, written by Mark Hyman, MD: http://www.huffingtonpost.com/dr-mark-hyman/cancer-new-science-on-how_b_779936.html
-- from http://jnci.oxfordjournals.org/content/96/14/1094.full
That was ten years ago. Now she is a happy mom of a year old boy.
Another of my friends, my husband'd best friend in the world, had a prostate cancer. It got diagnosed just about the time he found out that his wife is cheating on him. He also refused treatment, instead he divorced his wife, quit his corporate job and went back to pottery, which is his passion. He also changed his diet to raw foods. That was eleven years ago, now he is a happy and healthy husband to a wonderful woman.
Nothing changed in her life however, she remain as unhappy, as judgmental and as angry as ever. The cancer came back year later and, despite chemo and all sorts of other treatments, she died.
I know those people, I did not read about them in a book, or on a website, I live with them. And I see in them a beautiful example of what can happen when a person truly takes responsibility for her life, and for his body. this is why I am leaving the comments I am leaving on this forum.
The thought of spending the rest of my life going back to the emotional worry of history repeating itself does not appeal to me. Through a detailed family history of both sides, a gynocological oncologist revealed additional risk factors, and recommended a full hysterectomy, incuding my pelvic lining, which can often be the site of "ovarian" cancer even after the ovaries are removed. I whole heartedly believe it is the right thing to do, and will be completing the surgery in 2 weeks. Whether or not cancer is found doesn't really matter. What does matter is that thru viligent monitoring and a skilled and seasoned doctor, I will have a different fate than that of my mom. Should I test BRCA+, I would also consider a mastectomy in the future. I would make your choice in a New York minute, and applaud you for your candor and resolve in taking power and control over your body. Anyone who judges you or others for making those difficult decisions, should walk one day in your shoes. My emotional wellbeing could not be preserved if I had to spend the rest of my life worrying about breast or ovarian cancer. Yes, we all will die of something. But I'll be damned if it will be caused by either one of those 2 diseases. Those of us with wonderful, supportive family (like your Jon) are the lucky ones! Best of luck and good health to you and your family.
So sorry to hear all this, I truly hope your surgery goes well. Ovarian cancer is so hard to detect...our doctors reiterated that several times. I hope your surgery goes smoothly and that your recovery is as bearable as possible....our thoughts are with you.
It frustrates me to see so many comments about relying on a healthy diet & lifestyle to somehow counteract a genetic mutation that is part of every single cell in our body. I'm angered by the suggestion that BRCA+ carriers are better off managing risk through surveillance. Do you, as someone who suggests that, understand how emotionally difficult it is to have ultrasounds, MRIs & biopsies every three months until the doctor finally says, "you have breast cancer"? With a BRCA mutation, there is nearly a 90% chance that you’ll hear those words someday. Yes, early detection is important & yes, surveillance makes sense for the general population, but a different set of rules applies to BRCA mutation carriers.
I inherited BRCA2 from my mother, who was 34 when she was diagnosed. I watched helplessly as cancer destroyed her body and robbed 3 young children of their mother. Seven months ago, I learned that I was BRCA+. I evaluated the options my doctors presented: surveillance, chemoprevention, & preventative mastectomy. I’m 31 & single & was absolutely terrified of having my breasts removed. Five months ago today, I did it. I can say now without reservation that it was absolutely, 100% the right choice. Someone commented above that preventative mastectomy is drastic and unnecessary. Breast cancer is drastic. Doing everything one can
This preventive procedure might have reduced the risk of breast cancer but it does not reduce the risk of other cancers, illnesses, infections, accidents, all the many things that can kill us. And that will kill us, eventually.
This procedure does not guarantee that the patient will not die, it does not guarantee that the patient will have no cancer, it does not guarantee that the patient will live for another 20 years, 20 months, 20 weeks, 20 days even.
This procedure merely reduces the risk of contracting this one, particular illness. It doesn't even remove the risk entirely, only reduces it.
Is it really worth it then, cutting off parts of ones body, for that?
Also risk even high risk, isn't certainty. She might have gotten cancer, but she might not have. The procedure might have prevented cancer - but it might not have. That's hypothetical.
But all that aside - I agree with you, everyone makes their own choices about what's best for them.
The best course is a healthy lifestyle with surveillance. My mother had post menopausal cancer and still lived a healthy 20 years and died from another cause. It is NOT a death sentence.
Please read this FAQ sheet from the National Cancer Institute that explains the gene and what they recommend in detail.
http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA
Also, it is a myth that breast implants require "maintenance". My doctor is one of the best in the nation and he said that is BS to for making money. Mine are 25 years old and going strong. He said anyone with breast implants that still look and feel good should never have any kind of replacement surgery they can last for life.
What is relevant is that prophylactic surgery has been shown to reduce the risk by 90%. This option might not be your choice, but it is, in fact, the most effective way to prevent the disease.
I also should have mentioned that my cousin who just had the surgery last month learned from the path reports that precancerous cells were in her left breast.
She alerted all of her cousins -- male and female -- and now we're making our own decisions about the genetic testing.
Thank you for writing this.
Incidentally, I had my surgery done in Costa Rica and the total cost including travel and hotels was just 20% of what it would have cost me here in the US. The care was excellent.