Last week, the Supreme Court ruled against Myriad Genetics who had held the patent on the BRCA genes. The ruling indicated that the gene sequences exist naturally and are therefore unable to be patented. The predicted effect is that the genetic testing for these genes will now become more available and affordable for the general public.
I think this is great news. As always, I say the more knowledge people have, the better. The more you know, the more you can do with that information to ameliorate quality of life and/or longevity. Hopefully, this will also open the doors for other gene sequences to be discovered and tested for to potentially eradicate other risks. It’s my personal hope that with this gene, in particular, there will be significant progress made in the field of genetic modification by multiple institutions. Putting the minds of many to good use in this effort, instead of simply the minds at Myriad.
Yes, this is entirely selfish. I don’t want my kids to have to go through all of these surgeries to mitigate their risks. In 20 years time, they will have to face the decision of whether or not to be tested (I certainly hope they will) and then whether or not they want to undergo the same procedures I have (I hope they don’t even have to considerate it). It is my wish that when they cross that bridge, there are other less-invasive options to implement in order to protect oneself from this unfortunate genetic mutation. It’s not that I think having had the double mastectomy was all that awful. There are so many things in life that are much harder to face (even writing that makes me feel kind of stupid, because this is nothing compared to so many other afflictions or adversities). But as I watch them, carefree, playing in the backyard right now, I see what my mom has been saying to me. It’s hard to imagine watching your child go through several surgeries, no matter what their age.
In regards to the Supreme Court ruling and the future of genetic testing for breast cancer genes, I wonder how it will play out in terms of quality control and/or consistency. Can an individual be tested by every company offering the genetic test? Will they all report the same results? Will they all have the credibility to have their results recognized by doctors and insurance companies as the results from Myriad are considered now? Can someone request a comprehensive testing and receive a report from many different companies all with various risk rates similar to getting your credit checked?
It’s an odd concept to think of. You apply for a loan from a bank and they get the standard credit report: a different, but similar, score from each of the three recognized and reputable companies. Will insurance companies now require the same from patients who want their preventative double mastectomies to be covered? I wonder what all of the companies would report for my genetic test? I’m conflicted. Do I want one of them to report that this has all been a case of false-positive? If two out of three other companies report that I’m actually negative for the BRCA gene, how will I feel? I’ve done this all for naught? Or just grateful that maybe now my kids don’t have to face this after all? Definitely the latter (and I still get to keep the new perky boobs, so whatever).
Yesterday, I had my pre-op appointment for my next surgery (the lipo/fat transfer/new nipple surgery). I had figured this one would be the easiest and hadn’t mentally prepared myself for anything other than a breeze. I guess I was wrong. Although I just want to be done with all of this already (ugh, it feels like this process has just been dragging on and on at this point) and after much deliberation, I decided to postpone this next step until the Fall.
I was supposed to go under next Wednesday and I couldn’t wait to be done. No more ripples in my boobs, no more extra fat in my thighs, no more baggy spots in the middle of my bra cups. What I didn’t realize was that I’d have to wear compression undergarments on my legs 24/7 for the first two weeks and that I’d have to wear them 12-18 hours a day for the following few weeks, etc. In the middle of summer when the big girl is finally making such great progress swimming on her own, the inability to be in a bathing suit would really put a damper on our pool and practice time. We also have a vacation planned which I’d prefer not to be in compression hose in 90 degree heat nor do I want to be bruised and discolored in my bathing suit as well. As I was trying to decide today how to make this decision, my great friend said, “You’ve been through enough, enjoy your summer. This is no longer about health and getting rid of something dangerous inside of you. It’s cosmetic and you have the luxury to choose your timing.” How wise she is.
While I feel a pang of guilt (as always), because I don’t want to change this for everyone who has had it penciled in on their calendars (my doctor, his staff, my parents who will watch the girls, etc), I think everyone will be much better off when I do this later. In the Fall (after the girls have adjusted to their school schedules), I will be able to wear pants over my compression garments and sweaters over my “National Geographic sized nipples” (direct quote from my surgeon). For the first week post-op, I can’t wear anything to cover them. Of course, each week they will reduce in size until they’re just a little candy dot in size, but for the first six weeks or so they’ll be abnormally large. The turkey’s done has nothing on what I’m going to experience. Best not to scare the children at the pool with FemmeBot-like knockers.
Nearly two years ago, my dear friend since the first grade got engaged. I was thrilled to accept the honor of being a bridesmaid and couldn’t wait to be a part of her special day (I am obsessed with weddings). This was all before I had any inkling of what would be coming down the pipeline of my life.
Fast forward to this past Saturday when she walked down the aisle evoking a look reminiscent of Grace Kelly. Her blond hair pulled into a low bun and the sparkles from her accessories and her bridal glow dazzling the guests. Her maids all in a row, we wore floor-length black gowns that seriously flattered every one of our different body types (a near impossible feat). When we had tried on our gowns at the bridal store months earlier, I was in between my first and second surgeries. I had the tissue expanders and wasn’t sure if my measurements with the new implants would fit in the dress. They did, of course, but I was stressing a little bit about what the décolletage would look like in the v-shaped neckline of the gown.
Would my scars show? Would the guests see? Would the rippling where skin drapes over implant show? Will I feel it if my dress moves and my walk down the aisle becomes a Janet Jackson at the Superbowl moment? Fortunately, none of those things happened and my fears were subdued by many mimosas and margaritas throughout the day.
I had wanted my three major surgeries to be done by the time this wedding came. I had thought that I would have the fat transfer from my thighs to my breasts already by this point, but scheduling never seems to work as it is intended. I don’t know if anyone noticed the rippling on my walk down the aisle. I’m not sure if a scar peeked out from under my seamstress’ best attempt to hide them. No one said anything, so I’m going to assume I didn’t give anyone a modern medical lesson as I did my solitary strut (read: ran/walk down that extremely long aisle).
Most of the time, my scars are marks of a time when I’ve felt the strongest in my life. It is an odd way to think about it, I know, but I feel courageous and proactive when I think about my decision to have this preventative double mastectomy. Of course, I’m a normal person and I have times when I’m self conscious about the scars and the rippling that I hope will go away after the fat transfer. Now that Summer seems to be in full swing and I’ve been in a bikini in front of many people, I find myself asking my husband to check often to see if the suit has shifted and if I’m exposed.
Yesterday while we were in the pool with the kids, I felt a stiff breeze and automatically looked down to see if my nipples would have popped out as usual. Of course, there are no nipples to do that anymore and I smiled to myself thinking I never have to be self conscious about that again. I am really looking forward to the fat transfer surgery so I don’t have to worry about the weird rippling anymore either. That and no more cellulite showing on my thighs, I’m looking forward to bikini weather forever more. We might have to move South.
Trust is perhaps the most important element of any relationship. Whether it’s with your spouse, your child, your friends or even your doctors. Without it, the relationship dissolves and everything is questionable.
When I first received my BRCA results, for a moment, I questioned the verdict and wondered if there is a slight possibility that I had a false positive (maybe “hoped” is a better word). Knowing my family history and my dad’s similar result brought me out of that hopeful hallucination as the facts backed up what was now my truth. I trust that the mutation is present and I have never had a second thought about eradicating my risk of breast cancer with the double mastectomy.
I understand that many are not as fortunate as I am. I have a clear answer that indicates my risks. I actually have the facts and figures. “87% chance of having breast cancer,” it was right there on the lab results. However, there are genetic markers yet to be discovered and people who have a strong family history and all of the indications that would be associated with BRCA sometimes test negative. This doesn’t mean that they should be any less vigilant than those with a positive BRCA result. A schedule of frequent mammograms and ultrasounds should be discussed with doctors and insurance companies in order to guarantee the best possible chances for early detection.
Meanwhile, Myriad Genetics (which is the only company that tests for BRCA), also automatically runs tests called BART on any high risk individuals to try to find more genetic markers. They are doing what they can to collect the data and determine more genes that will help people determine their best course of action to protect themselves against disease. I can have a gut feeling about something (like writing a research paper on double mastectomies at age 16), but until I see the facts laid out before me, I can’t even trust myself. Scientific data, facts and figures, as a scientist (in what feels like my former life as an engineer of a billion years ago), these are the things I can trust. They don’t lie.
My inbox is peppered with articles about the BRCA gene these days. The latest was from my mom who saw an article in the New York Times with a personally thought provoking paragraph (below).
“It is also possible for women who are mutation carriers to avoid passing the gene to their children, by undergoing in vitro fertilization and having embryos screened for BRCA genes. Then, only embryos free of mutations can be implanted.”
Now, I have a huge game changing decision ahead of me. Do I explore the world of IVF in order to prevent my third child from the 50% chance it has of inheriting my BRCA1 mutation?
I have been very lucky in that my husband and I have been able to conceive our children naturally. They were intentional. I charted my ovulation and we knew the times of the month when we had the best chances to conceive and fortunately, the fertilized eggs grew into our mostly uneventful pregnancies and the births of our two girls. This is not a privilege lost on me.
So it is with my usual guilt and uncertainty that I face the potential for IVF. If I can conceive naturally without complications, why would I go down the IVF path? I didn’t know of my genetic mutation before I had my girls, so now that I know, is it nearly an obligation to protect my unborn child from this? I don’t feel that my positive BRCA1 result is the ticking time bomb of death that I felt before I had the double mastectomy. I took care of it. Yes, I still have one more major surgery to go, a tattoo (or two) to get and the hysterectomy/oophorectomy in my future, but I feel those are all manageable. But do I want my children to have to go through them? And in 20 years when they actually have to start weighing their options and assessing their own risks, will there be other medical breakthroughs that mitigate their risks less invasively? Are there risks with IVF that could outweigh the benefits in my case? Would I wind up with multiples? (I don’t know what the fuck I would do… I don’t think I’m Mom enough to handle that although I’ve watched several friends and family members be the best, most attentive and caring moms of multiples… I don’t have the bandwidth to even think of it for myself right now.)
As I was discussing this whole new thought process with a friend yesterday at a Memorial Day BBQ (what better place to have an in depth conversation about fertility?), he said, “You work with what you know.” He’s right. I know that I have the potential to pass this damaging gene on to my children, I know now that I have an option to eliminate that risk, but I don’t know what risks/rewards come with IVF. I have so much research to do now with this new option. I’m exhausted and overwhelmed just thinking about it. With that and the headache I just got from too much self-reflection, at least I can rule out conceiving the next kid naturally tonight.
My mother-in-law sent me an article the other day that was published in the New York Times. It was a more scientifically informative piece than what Angelina Jolie had written about preventative double mastectomies. What she did was courageous and will, I believe, have a more positive than negative effect. Yet, I agree with this recent article that her op-ed made the surgical process seem like a walk in the park, at least compared to how it was for me. Maybe she had a nanny for each child? Maybe the skin sparing double mastectomy that she had really lends itself to an easier recovery? Or maybe she just wanted to stay positive? For herself, for her family or for the thousands of people who will now consider this course of action based on what she said?
This process has not been easy and it won’t be easy for anyone who is faced with a positive result from a BRCA test. This is such an individualized experience in every aspect. Each person’s reaction to their test result will vary. The surgeons they choose, the insurance they carry, the support they have from loved ones all make it different. To judge another person’s view of their own experience is unfair. I have said before that I feel lucky to be going through this at 31, because I have the benefit of being young, in shape and in otherwise good health right now. These factors likely make my recovery easier than someone else’s. I imagine that Angelina was in even better shape than I was (did you see her stunts in Salt? I think it’s pretty safe to say she could out bench me at the gym, no?). So, maybe her recovery really was easy or maybe it was just easier than she thought it would be.
Angelina Jolie was obviously more interested in projecting an image of strength and positivity rather than one of being a victim of her circumstance. Although, she may have (hopefully) inadvertently set some unrealistic expectations for women who want to now have the preventative double mastectomy, I commend her for what she’s done. She’s opened the door for dialogue between patients and doctors and she could potential save the lives of unknowing, but at-risk BRCA positive individuals. If early detection is key, then prevention is even better! As Benjamin Franklin said, “An ounce of prevention is worth a pound of cure.”
I’ve always thought that Waiting to Exhale was a pretty dumb title for a movie. I mean, don’t we exhale every time we inhale? Isn’t that the mechanics of breathing? Something so natural and automatic. I never understood what it meant until the other day when the little one’s surgery was over.
It didn’t take long for her to bounce back from the trauma of anesthesia. I think it took me longer to put it all behind us, but then again, it always does. I won’t regale you again with my trips to the seventh layer of hell (the area of the surgery center where the babies come to from anesthesia), I will only say that they all cry as one and seem to join in with each other as their wails reach crescendo in the most excruciating symphony. The procedure for getting tubes in the ears is a simple and quick one (it was only 8 minutes from the time I let the nurse take her away from us until the surgeon came out and said it was done and she did great), the little one recovered so much faster than the big one did last year when she had tubes in and adenoid out (a more involved and invasive procedure that makes recovery much more painful). Thankfully it is now behind us and as she fell asleep in my arms that night, she wasn’t in pain and I felt an enormous sense of relief.
I understood what it meant. I had been holding my breath for so long in anticipation of that day. The anxiety of the unknown is never something I can easily manage. I suppose that’s fairly obvious, considering the double mastectomy. I’m grateful that this ordeal is behind us, that my little one did so well and is already back to herself, and that hopefully she has the best chance to be ear infection free, antibiotic free, pain free… Just free.
One of my defining features has always been my boobs. When people (read: my husband) would tell me that my eyes were the first thing they noticed about me, I’m pretty sure they were talking about the enormous breasts that were staring at them. Similarly, when you hear “breast cancer gene”, you just think of breasts. But part of being BRCA1 positive is also the heightened risk of other cancers, too.
Ovarian cancer can be sneaky and with my up to 40% chance of getting this disease, I have to maintain a schedule of screenings until I can ultimately have my risk eliminated with an oophorectomy (and/or likely a radical hysterectomy). The signs and symptoms of ovarian cancer often don’t appear until the disease is in its more progressive stages. So, every six months, I get an internal ultrasound to ensure there is nothing suspicious going on in there. I also get a blood test called CA-125, which can indicate ovarian cancer (it can also indicate other ailments and sometimes results in a false positive, so there is some debate over its usefulness and is often only recommended to patients with an increased risk). I’m overdue for my biannual test (whoops).
With my little one going in for her own surgical procedure in two days and in between my surgeries and life, in general, I’ve just let this bit of scheduling go. Stupid excuses? Yeah, pretty much. Another one of the things I should be doing to decrease my risk of ovarian cancer is to go on birth control. I have also resisted this and I’m not sure that’s wise either. I don’t think I’m quite done having kids yet, as there may be one little bugger still left to be conceived in my rather ominous ovaries. So I’m not thrilled with the idea of being on hormones before I try to calculate when I’m ovulating, charting that and then figuring out when we should do it, all while consulting with the Chinese Lunar Calendar in order to get that boy. Third time’s a charm?
I remember talking to a fellow BRCA positive friend who was on the fence about whether or not to have a third after her double mastectomy. When we spoke, she was halfway through the process and I hadn’t even begun. She said, “I feel like just getting the oophorectomy now. I just want this to all be behind me.” I really didn’t understand how she could give up on her dream of a third child so easily. I get it now. I felt like breast cancer was looming over me and now that that risk is eliminated, I have the ovarian cancer risk rolling in like a dark cloud in the distance. How fast will that storm move in or will it blow off to shore? Should I roll up the picnic cloth and just pack it in to be safe? Or do I enjoy the time we have until the clouds are a little too close for comfort? I’ve been advised to wait for the oophorectomy and hysterectomy until I’m 35, so I have 3.5 years to decide. I just have to be smarter about scheduling my screenings and either getting knocked up or going on the pill sooner rather than later.
As a person of the Friends generation, I was always Team Aniston. Today, my perspective has changed and despite my fierce loyalty, I’m adding Angelina Jolie to my roster. After reading the mega-star’s op-ed piece in the New York Times this morning, I have a newfound respect for her. She, too, chose to have a preventative double mastectomy after receiving a BRCA1 positive result. It’s one thing for me, the suburban wife and mother, to shed the killer lumps, but for her to do it under the spotlight of the scrutinizing public eye, it’s a bit different.
Angelina’s body is part of her livelihood and has defined her in many ways. Tell me that you don’t see a poster of her as Lara Croft and think “Daaaamn, that’s a hot bod! Check out those knockers!” She is iconic in large part due to her appearance, but today, I believe it’s her courage that is her best feature. Angelina’s natural breasts probably have their own website and certainly shrines around the world. Yet, she was willing to part with them to extend her life, to be with her children, to show them and the world that she would rather be proactive than vain.
I have always believed that a person’s medical information is very private. I choose to write about my journey because it has been cathartic, but also to increase awareness in the hopes that my experience will encourage others to assess their own risks and take action to protect themselves. By sharing her medical choice, Angelina has used her celebrity to do the same, but on a much grander scale and hopefully with a lot more impact. She is going to help women everywhere know that they have a choice. Breasts will droop and beauty will fade, but in this case, your health doesn’t have to.
Similar to Valentine’s, I don’t like to make a big deal of Mother’s Day for myself. I don’t go into it expecting much, but just like Valentine’s, my husband does his best to wrangle the munchkins and do something special. He took them swimming yesterday while I was at a friend’s baby shower and when they came home, the big girl said, “Mommy, we got you something!” He quickly shushed her and then when he wasn’t looking, she looked at me with a conspiratorial smile and put her finger to her lips to let me know that I was supposed to keep that hush hush.
As I might have mentioned, my favorite thing right now is sleep. It’s like when you are on a diet, all you want is cake. Well, all I want is sleep. So with kisses and “Happy Mother’s Day” wishes, the hubs took the little ones downstairs this morning and allowed me to snooze. After a little while, I heard some whining and yelling (nothing unusual) and then a loud bang. I waited and didn’t hear any crying, but figured, I was up and I went downstairs. The big girl came running over to me from the craft area of the playroom and exclaimed, “Daddy said, when you open it, hearts will come popping out!” He and I both laughed as he said, “We aren’t ready for you yet, go back up please.” No one needs to tell me twice to go back into my cozy bed.
It’s funny how I remember spoiling similar surprises for my mom back in the day. I always felt bad after, but she never seemed to mind. I get it now. I love the fact that the big girl is so excited to make me something or give me something. It’s adorable that she can’t wait to tell me! I hope she always wants to tell me everything and can’t stop herself from holding it in. As an over-sharer myself, I can appreciate that quality in her. I know my mom appreciated it in me (until high school and then I was asked to not tell every detail, because apparently I have no filter).
I often think about how I will try to be a mother to my girls like my mother is to me, fostering the same closeness and trust. When children are little, the relationship is so one-sided. The mother constantly providing everything, giving all day, everyday, fueled by unconditional love. As a child grows up, things become more reciprocal. As an adult, it’s a choice whether or not to spend time with your parents. We see our parents because we want to, because of how they make us feel. It’s pretty incredible that my siblings and I always want to be around our parents. They make us feel good about ourselves, about our kids and our lives and choices, in general.
Mom – thank you for making me feel smart, special and like I wasn’t always ruining the good surprises in life. Most of all, thank you for making me feel loved. I will do the same for my daughters! Love you. Happy Mother’s Day!