What To Expect After A Double Mastectomy: I'm a 32-Year-Old BRCA1 Gene Carrier, And I Went Through The Challenging Process

I tested positive for the BRCA1 gene mutation, also known as the breast cancer gene, in the spring of 2010, when I was 27. I was tested after my parents decided to share the news with me that my father was a carrier — he had been tested because his mother and her two sisters were all diagnosed with breast cancer in their early 30s. His two sisters passed away in their 30s, and my paternal grandmother died in her 40s. As a BRCA1 carrier, I was at a huge risk of facing breast and ovarian cancer myself. On July 30, 2014, I underwent a preventative double mastectomy, and, just six weeks ago on February 9, 2015, I had my implant exchange surgery. This was my final surgery of four in this eight-month process.

In an op-ed for The New York Times in May of 2013, BRCA1-carrier Angelina Jolie wrote about her choice to have a preventative double mastectomy herself, to guard against the 65 percent breast cancer risk that the BRCA1 gene indicates (though new research indicates the above statistic, at the time of her decision making, and mine, the risk was said to be 87 percent). This week, she detailed her recent laparoscopic bilateral salpingo-oophorectomy surgery, in which her ovaries and fallopian tubes were removed in order to guard against the 39 percent ovarian cancer risk (previously indicated at 50 percent) that also comes with being a BRCA1 carrier. Jolie has deservedly received much praise for bravely sharing her story, but, through no fault of hers, much of the response from the media and the general population has been overly simplistic — people are doubting Jolie's sanity, asking if she is being alarmist in taking these measures, and calling her choice fearful.

It's a positive thing that such a high profile person is raising awareness of this health issue and facilitating a discussion on a larger scale. But this topic is not a fleeting celebrity story, and the choice to have parts of one's body removed can't be taken lightly or treated flippantly — it's a choice that should be thoroughly digested by anyone who needs to consider this, and one that must to be treated with respect by the general public. I want to make sure that with this raised awareness comes knowledge and honest conversation.

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Testing positive for BRCA1 sucks, and there is no ideal path of care. The decision to have your breasts removed is not an easy or a pleasant one. People may question the decision, but the alternative, which is getting multiple mammograms and MRIs each year for the rest of your life, sucks too. It means spending time in cancer centers, and basically being treated as a cancer patient yourself. It means seeing what your life will be as a cancer patient if it comes to that. It means spending hours and hours away from work multiple times a year and, for me, it meant spending hours and hours awake at night thinking about my next screening, wondering if and when it would come back irregular. I am an anxiety-prone and action-oriented person, and when my doctors and genetic counselors relayed to me that having a double mastectomy was their ultimate recommendation, and the way to decrease my risk most dramatically, I knew it was the right decision for me. But people need to know that there are no appealing options here.

It's a positive thing that such a high profile person is raising awareness of this health issue and facilitating a discussion on a larger scale. But this topic is not a fleeting celebrity story, and the choice to have parts of one's body removed can't be taken lightly or treated flippantly.

There are so many other things that people need to know about this process, and so many things that people who are considering or have decided to undergo the surgery must to understand and expect. I wish I had known these things eight months ago.

Know that the process will be all-consuming

From the day of my mastectomy until right now, my life has been about this. I had some complications, so my path of care took some unexpected directions along the way, perhaps making my focus on my recovery a little more intense and lengthy than others. That said, I don't see how anyone could go through this and come out of it without it taking an enormous toll, physically and psychologically. You need to be ready to give your life over to this for a while.

Make sure you pick the right doctor

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When choosing your doctors (both a breast surgeon to conduct the mastectomy and a plastic surgeon to work with you throughout the reconstruction process), it's extremely important that you feel completely comfortable with these people. It is definitely a good idea to meet with more than one person, even if you feel comfortable with the first person you meet. However, it's an overwhelming process, so meeting with too many candidates is not ideal either.

Your plastic surgeon is who you will have the longest term relationship with, and with whom you'll spend the majority of your care path interacting. Make sure you push your doctors and ask questions that make you uncomfortable. You need to be certain that your doctor is ready to hear, listen, and respond to you. You're in a partnership with one another through this, and the trust that I had in my plastic surgeon, the amount I've had to rely on him, and the level at which I've needed to communicate with him is unparalleled to anything I've experienced before in a personal or professional setting.

Don't panic if your care path doesn't go according to plan

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I underwent a nipple-sparing bilateral double mastectomy, with tissue expanders placed during surgery. Then, over multiple months, my tissue expanders were filled between 25CCs and 100CCs of saline at a time in order to eventually reach 525 CCs, which is the size of my implants. It's an extremely strange sensation to have your chest filled with fluid. For some women this is painful, though I only experienced tightness and discomfort.

This procedure is considered low-risk by the medical community, and conducted every day by surgeons world-wide. That said, it is important to understand that every case, and every person's body, is its own. In my case, I experienced one of the potential complications that can result from mastectomy, necrosis of the skin. This means a portion of my skin did not recover post-mastectomy. I was successfully treated with hyperbaric oxygen therapy, but I met a few other challenges along the way, which ultimately delayed my reconstruction process.

Thankfully, with the incredible skill and thoughtfulness of my plastic surgeon, and with his insight about how to treat me, my current health is fantastic and I am thrilled with the cosmetic outcome of my breasts since I had my implant exchange surgery on February 9. If you do experience complications, there are ways to redirect the care path that will result in a satisfying — or even wonderful — outcome.

Figure out a plan with your employer

I'm fortunate enough to have had the resources to go through this process in as comfortable a way as I could have imagined. My family and friends have been so supportive and helpful — as has my employer. They were flexible with my hours and flexible about my working from home near the end of my recovery. My company health insurance is excellent, and I was able to arrange in advance to take four weeks of short term disability sick leave immediately following the mastectomy.

My current health is fantastic and I am thrilled with the cosmetic outcome of my breasts.

Though many people may not be as lucky as I am, it's important to have a plan in place in advance for how you want to handle your time away from work (which can be as few as three and as many as six weeks). Speak to your manager about your path, and make sure you know your company's health insurance policies and medical leave protocol. Prepare for your transition back to work. This was not a vacation, you are not rested, and your mind is likely not completely at ease. Your body may be healed, but you have experienced a life changing event and you may need to adjust your expectations of yourself for a while.

Expect surprising everyday things to be different

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You won't be able to wear your own bras. You'll have to figure out what outfits look good over the front-clasp Fruit Of The Loom sports bra you'll wear during recovery. Getting jostled around on the subway will go from a mild annoyance to a truly painful experience. Wearing seatbelts will hurt for a while, as will driving a car in general. You'll feel self-conscious about hugging people when your chest is full of the hard expanders between surgeries. You can't sleep in the same positions as before. Your doctor may say that you'll be able to exercise three to four weeks following surgery, but if your exercise routine, like mine, involves running half marathons and attending vigorous spin and boot camp classes several times a week, it will be a long time before you can return back to normal.

You can be told what this experience looks like and understand how it mechanically works, but to experience what that means on a day-to-day basis is an entirely different beast.

Prepare to watch your body change

The idea of getting a set of perky implants for the rest of your life is fun, but the body you were born with is beautiful, and it is a very sad thing to lose a piece of the body you've grown up with, to lose a piece of your womanhood.

It is a very sad thing to lose a piece of the body you've grown up with, to lose a piece of your womanhood.

You cant imagine an experience where you suddenly no longer have breasts and over months, through multiple procedures, they miraculously return. You don't get to just swap your old breasts for your new ones, and it's a very strange process to watch your body change — to feel your body in clothes, to look in the mirror. Your body is in a different form than the one you've lived with your entire life, and though I'm thrilled with my results, I'm still waiting for my body to get back to something I’m comfortable with and accustomed to.

Prepare for this to affect your romantic life

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I’m single, and I think it would have been easier to go through this with the support of a partner — and it would have been easier to not have to re-enter the dating world with a piece of my body that is unfamiliar to me, let alone to a potential mate.

I didn't date between my mastectomy and my exchange surgery except for a couple blind first dates, and I didn't feel driven to. I'm extremely emotionally vulnerable right now, and that's not really a time when you ever are looking to meet new people, let alone dive into a relationship that could inherently make you more vulnerable. And, during some stages of the process, the physical reality of my body made me feel the least sexual that I could have felt. It will take some time, even after feeling great about my physical appearance again, to really get to know my body, and to feel that level of desirability.

In making this decision, you prioritize your options based on a holistic view of what you think is best for you and your health, and if that involves a different version of your physical body then it is what it is. And today, I think I look great.

I just want other people who are contemplating this decision to be better equipped with information on what to expect. There is no way I could have known going in even a fraction of what this experience would be like, but I know this was the right decision for me.

As told to Julie Alvin