There’s a saying that goes: “You can’t choose your parents, but you can choose how you deal with them.” I would add, “You can’t choose the genes you get from your parents, but you can choose how you deal with them.”

In an article I wrote recently, I spoke about testing positive for the BRCA gene and my unpopular decision to forgo a double preventative mastectomy. What I didn’t really touch upon was my increased risk of getting ovarian cancer (up to 23 percent in my lifetime versus less than 1 percent for everyone else) and what implications that has on my future potential or non-potential for motherhood. So this week, let me take you on a journey across the bottom half of my body. (Get your minds out of the gutter, boys.)

When I first found out I was BRCA positive, the only thing I knew about the gene was that I had an increased chance of getting breast cancer in my life. I (and probably you) know of it as the “breast cancer gene,” or the thing that made Angelina Jolie get a double preventative mastectomy. What no one seems to remember is that the reason she even got tested for the gene was that her mother died of ovarian cancer. So you can imagine my shock when I started hearing from doctor after doctor that breast cancer was not my biggest problem. Really? An 85 percent lifetime chance of getting breast cancer is not my biggest problem here? “Can you repeat that please?”

“Can you repeat that please?” is a phrase I’ve used a lot in the last two years staring at the faces of doctors, trying to digest all the information they were hurtling at me (like Charlie Brown listening to his teacher “wah wah wah”-ing away). Get rid of your breasts… get rid of your ovaries and not your breasts… get rid of your breasts and not your ovaries… take this drug… don’t take this drug… don’t take birth control… do take birth control… freeze your eggs… wait… don’t wait… what? A piece of advice for anyone going through this process: Bring a notebook and pen and/or recording device to every single appointment (I wish I had), because this is school and you will need to remember these things. And it’s not always going to stick because your brain would prefer to forget absolutely everything they are telling you.

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Back to the ovarian curve ball that was thrown at me: With the BRCA gene, I have a greater risk of getting breast cancer, but it is not the most dangerous of the cancers I’m at an increased risk to get. Because, luckily for women everywhere (with or without the BRCA gene), preventative testing for breast cancer has become so advanced now that it is truly possible to find breast cancer at a very early stage.

Unfortunately, this is not the case with the ovaries. The scary thing about ovarian cancer, explained to me by my oncologist James Heaps, MD at UCLA, is that it is extremely hard to detect in early stages and grows quite fast. Even checking every six months, Heaps told me, is not a guarantee that cancer would be found early enough. He recommended that I get a transvaginal ultrasound and CA-125 blood test every three months if I truly wanted to be safe and that I freeze my eggs. 

Kristy Funk, MD, Angelina Jolie’s doctor, actually suggested to me that removing my ovaries was more imperative than removing my breasts because an oophorectomy (ovary removal surgery) would also help lower my breast cancer risk. Removing one’s ovaries reduces the chance of breast cancer by 50 percent because the ovaries produce estrogen and progesterone, both of which are known to contribute to the development of breast cancer. However, removing my ovaries (whether preventatively or if I developed cancer) also meant I would go into premature menopause.

“Can you repeat that please?” I politely ask (again) instead of crying out, “What the f*ck?!” Did you know that your ovaries are the source of the hormones that run your entire menstrual cycle, not to mention where your sweet little eggs are matured monthly? I didn’t. Funk explained that an oophorectomy, along with taking the drug Tamoxifen (an estrogen-blocker that interferes with estrogen’s ability to stimulate the growth of cancer cells), would almost reduce my risk of breast cancer to zero! She also insisted on freezing my eggs as a first step.

Since I had decided not to remove my breasts for now, removing my ovaries seemed like the most logical thing to do. It killed two birds with one stone, and I certainly didn’t have the emotional attachment to my ovaries that I did to my breasts. But going into menopause immediately? If I thought getting rid of my breasts would be an impediment to dating, how about going on that first date and telling the guy: “Well, not only am I barren, but I also get hot flashes, have crazy mood swings and vaginal dryness, and am on a steady weight gain regimen.” Translation: I’m pretty much your mother sitting here in the guise of a 30-year-old, guzzling a glass of wine so that I can get this over with before you run away thinking, “This girl has way too much going on for me to deal with” (someone I dated actually did say that).

Tamoxifen was also out. As I mentioned in my previous article, these decisions must and can only be made by you, factoring in all the life and health concerns that are unique to you. As I continued my research, I found out that the extremely lucrative (to the tune of $500 million a year) pharmaceutical drug Tamoxifen has crazy side effects, two of which happen to be other cancers. It is known for increasing endometrial and uterine cancers as well as blood clots. That may be a possibility for a woman who has had children and plans to get rid of her entire uterus and reproductive organs with a hysterectomy, but seems quite risky for someone at my age, still in her prime childbearing years.

Suddenly, everything I had taken for granted about being a woman was being snatched away from me. I could get rid of my breasts and ovaries, minimizing my chances of getting cancer, but robbing me of my chance to be a mother.

The truth is, having children was never a priority for me. Most little girls play with cute little dolls, futzing around in their dollhouses and creating a magical domestic bliss that foreshadows the lives they will lead 30 years later. I hated dolls as a child and I preferred playing ThunderCats to playing house. When I was about 10 years old, I announced to my mother: “I never want to have children.” You can imagine her shock.

It’s amazing how life challenges you most when you think you’ve got it all figured out. I still don’t know if I want children. But suddenly being faced with the possibility of never being able to have them, I was stopped in my tracks and forced to rethink things a little. At least I want to have the choice.

This led to the one thing my doctors and I could finally agree on: freezing my eggs. Since I had decided not to prophylactically remove my breasts and ovaries (yet), the one thing I could proactively do was make sure I could still have the choice to have children, in case I suddenly got ovarian cancer and had to quickly remove my ovaries.

Do you remember when you first heard about freezing your eggs? Didn’t it sound insane? To me, it still seems like something out of a sci-fi novel from the ’80s. And yet only about a decade since it’s become readily available, I’m willing to bet that most women reading this article have thought about doing it if they haven’t had children. I’m also willing to bet that most women consider egg freezing a luxury: something they really want, but don’t necessarily have to have—an extra perk if the extra up-to-$20,000 happens to be in the bank.

Yes, $20,000. Don’t be fooled. The medicine and everything together will add up. Plan for this amount and if it’s less, feel blessed. This doesn’t include yearly storage and/or the actual fertilization process. Sadly, insurance doesn’t cover it (unless you work for Facebook or Apple), which is especially shameful if you are a woman battling cancer or are BRCA positive, and egg preservation is your only option for having biological children.

After researching different centers and asking around for recommendations, I decided that I would go to Wendy Chang, MD, at Southern Reproductive Center. Recommended by Kristi Funk, Chang really won me over with her blunt, straight-talking style. When I was whimpering about the fact that I was single and didn’t know if I wanted to be a single mom (and wasn’t sure how long I wanted to wait for the right guy to come along), Chang looked straight at me and said: “Why do you want a man? You’re better off without one.” She was dead serious and I loved her for it. When I told Chang that I had the BRCA gene, she very kindly agreed to give me a discount that is normally applied to women who already have cancer. She also pointed me to some organizations that help with the price of the medicine (because this is a separate cost) if you can prove that you are low-income by sending them your tax returns. Without both of these financial aids, I never would have been able to afford it.

At first, I was excited about getting my eggs frozen. I had vaguely considered it for the past few years, but the cost had been prohibitive. Friends of mine had bragged how awesome and easy it was—they would be out on a date and just go to the bathroom, inject themselves with their hormones and then continue along like nothing happened. Many of them were on their second or third times doing it.  Now I could get it done in an affordable fashion and for a good reason.

However, doing my research again, I realized that the hormones I had to take for the process were exactly the hormones I wasn’t supposed to have elevated amounts of (i.e., high doses of estrogen) for my BRCA gene. That put a slight damper on things. So I specifically asked Chang to adapt my medicinal regimen, keeping in mind the fact that I was BRCA positive. This proved more difficult than expected. The dilemma is that without enough hormones, there won’t be enough eggs created, making the process and the expense worthless. It’s truly a fine balance, and in the end, I compromised on both ends—I took smaller hormone dosages, which then created fewer eggs, but still way more hormones than I ever would have thought acceptable in my condition. I also opted out of the preventative antibiotics that they make you think you have to take (to avoid infection complications from the extraction surgery), and I was absolutely fine.

Planning the procedure was tricky because my schedule is always in flux. I had to make sure I didn’t gain weight or have major bloating and water retention (all typical side effects of the hormones) right before a shoot. I also had to ensure I didn’t book a part right in the middle of the process (there is a mini operation involved with anesthesia for which you need to take 24 to 48 hours off to ensure proper healing). I actually had planned everything to start in August, but then I was cast in the musical film The Devil’s Carnival: Alleluia and had to postpone for three months. When I decided to do it in early November, I booked another film, Tales of Halloween (on VOD and in theaters now), so I postponed again—this time to after Thanksgiving.

So, while everyone else was sticking meat thermometers in their turkeys, I was sticking hormone injections into my abdomen twice a day, alone… at home.

I'm not going to lie: The egg-freezing process sucked. Can we talk about those needles? Everyone made it seem like they were so small, but they are nowhere near a little prick. They are long and I kept thinking I was going to puncture my intestine if I didn’t do it right (you have to grab a little piece of extra skin from your tummy and squeeze it together so that the needle even has somewhere to go)!  To put this into perspective, my grandfather was a doctor and I used to ask him to give me injections when I was a child because I thought it was tough and cool (I told you I was weird). I’m not one to fear the needle, but injecting oneself in this manner is somehow unnatural and much more terrifying than I imagined. Moreover, it was the terrible burning sensation (like I was poisoning my body) when I injected the fluid that made the process so difficult. I ended up having to numb my stomach with ice beforehand to make the pain bearable. Not everyone experiences that burning sensation, but it was so bad for me that the nurses decided to change one of my medications mid-cycle, which did help. The replacement hormone shot was also much easier to inject, as it was a pen instead of a syringe.

Writing this now, I still have a hard time remembering much of this period because of how the hormones affected me. For about six weeks, I was walking through life in a daze. I felt incapacitated, weak and sleepy, and my brain was foggy the whole time. I was emotional. In seven years of driving in Los Angeles, the two closest encounters I had accident-wise were in the one-month period during and after freezing my eggs. My boobs exploded (probably the only good thing) and my body felt like it was inflating like a balloon, ready for liftoff.

I’ve heard that because the hormones make your body produce up to 20 eggs per cycle (instead of one), it’s like having 20 PMS’s at once. It may have been a good thing I was single after all! While producing these extra eggs, you take another hormone that tricks your body into thinking it’s pregnant so it doesn’t release the eggs. Talk about mixed messages.

I’ve never looked forward to an operation so much. Get these things out of me! I was so grateful when it was time to get that beautiful sedation and fall into a deep sleep as I underwent my operation and delivered my precious cargo into the arms… OK, hands… OK test tubes… of Chang and into a little freezing container, where it would be safely preserved for… ever?

It was disappointing that the experience was so difficult for me when it’s clearly easier for some others. I had even considered doing another round, but I don’t think I will. I do believe our bodies speak to us if we know how to listen. And something about the hormones didn’t react well with my system. Was it because I’m BRCA positive and shouldn’t be increasing those hormones in my system? It’s a thought. But again, it’s a thought specific to me, my body, my experience and my set of circumstances. For so many other people, it seems to be a walk in the park.

Either way, I’m happy I did it. And I’m grateful that science has given women this opportunity. Considering I never really wanted children in the first place, the process at least gave me an option for having one in the future. With or without a man. With or without my ovaries. And more importantly, when and if the time is right for me.

 

Source:

Cancer.gov: Hormone therapy for breast cancer treatment and prevention