When you’re in your early twenties, life seems to be everlasting. You cruise through college, your first few jobs, and start deciding who you want to be. When you’re at this stage of life, you can feel almost invincible—like nothing will ever slow you down or stop you from achieving your dreams. But for Allison Marcus, a twenty-five-year-old technology consultant, the ease of her twenties came to a screeching halt when she was diagnosed with breast cancer in April 2017. After learning that she had inherited a BRCA2 mutation, Alli would soon find out that the cancer would not only affect her immediate health, but also her potential to have children after treatment. While Alli had always wanted a family, it wasn’t something she had been actively pursuing prior to treatment; with the cancer diagnosis, however, she knew she had to act quickly. While fighting for her life, Alli also underwent fertility preservation, because chemotherapy could do severe damage to her eggs.
In addition to the stress of cancer treatment and egg freezing, Alli also realized that should she have children after treatment, she would also risk passing on her breast cancer mutation to them. Knowing this, Alli contacted a friend who works at CooperGenomics to find out about preimplantation genetic diagnosis (PGD) and how it could help her avoid passing on the BRCA2 gene. Following their conversation, I sat down with Alli to trace her journey from cancer diagnosis to current treatment state, and get her thoughts about one day having a family through in vitro fertilization (IVF) and preimplantation genetic diagnosis.
H: Tell me a little bit about your journey. When were you diagnosed with breast cancer, and how did you find out?
A: It all started when my mom was diagnosed with breast cancer about four years ago. She had done genetic testing and found out it was BRCA2, and then I got tested as well and was positive. I enrolled myself in a program where I would go in every six months and get exams to be proactive about it, and I was diagnosed when they found a tumor during one of my appointments last April.
H: What sort of treatment did you receive?
A: Last June I had a double mastectomy, and then I started chemotherapy at the end of September, which I finished at the end of January.
H: While you were going through treatment, did someone on your healthcare team speak to you about the possible effects of cancer treatments on your fertility, or did you ask about it first?
A: The first oncologist I saw was the one who first brought egg freezing to my attention, saying, “You’re very young, and we just don’t have any guarantees on what your eggs will be like afterward.” She recommended it once she knew I would be starting chemotherapy, and said she thought it was a good idea if I wanted to preserve my fertility.
H: Sounds like it was. Walk me through the decision-making process. Was it a no-brainer to freeze your eggs?
A: Yes, I would say so. There was kind of a lot going on, so my thinking was if that’s what the doctor thinks is a good idea, then that’s what I think I should do. When I learned more about PGD, I realized that I would end up doing IVF anyway in order to do PGD testing for BRCA2, because I want to guarantee that I won’t pass the mutation on to my kids.
H: What was the timeline from being diagnosed to freezing your eggs?
A: I was diagnosed in April and then after the surgery in June, I recovered for a few weeks. Then they sent part of my tumor to be tested, and I got those results in mid-July. With those results, my doctor ended up recommending chemotherapy for me, and we tried to decide on a start date. She wanted me to start earlier but with the egg freezing, I had to be in the city every day for monitoring, and I couldn’t drink alcohol—I had three friends getting married last summer. I was going to bachelorette parties and I was traveling a lot, so I didn’t end up starting the egg freezing until the beginning of September, just because of timing.
H: It sounds like you were able to keep living your life, at least to some degree, during treatment. I know that can be challenging for those going through fertility treatments, let alone cancer treatments too. So, what was the egg freezing part of your journey like? You had to do daily injections, just like with IVF, right?
A: At the beginning, I was doing two injections a day, every night, and after the first week, they had me add another injection. So, I was doing three a night, and I think the process took about two weeks. Because my tumor was estrogen and progesterone receptive, they also had to put me on an extra medication to keep my estrogen levels as low as they could.
H: Was the IVF center you went to for egg freezing specific to cancer patients, or were there other patients at your center already going through the IVF process? Was it helpful to talk to the doctors at your IVF center?
A: It was a clinic for everyone. Actually, when I decided I wanted to freeze my eggs, my program assigned me to a patient advocate who helped me choose an IVF center. The clinic we chose also accepted donations from Livestrong, which helped me pay for treatment. It was definitely helpful because I got to talk through the process and what it was going to involve.
H: It’s great that you had someone to guide you through that. Is there any advice you would like to give to other young cancer patients about egg freezing?
A: Well, the egg freezing process was a bit more stressful than I thought it was going to be. Giving myself the shots wasn’t all that difficult, but having to do the monitoring every morning was — I lived in Hoboken (New Jersey), and I had to be in the Upper East Side every morning for 7:30am blood draws. That was rough, so I would recommend picking a place that’s close to you and easy to get to.
But from the standpoint of someone who had cancer, it’s a little more difficult because they kind of had a set thing that they would tell everyone, like an orientation for new patients. But they would keep saying “this/that doesn’t apply to you” so it was a bit confusing. There’s not a lot of access to information that applies only to cancer patients because they aren’t going through the typical egg freezing route that other women are. Talking to my cancer doctors was very helpful; I’m not sure if this is specific to my cancer treatment program, but they were also really helpful in getting me resources for that.
H: So did your cancer-treatment doctors and fertility doctors work well together?
A: I would say no since I’m not sure that they were working together at all. My cancer treatment program doesn’t offer egg freezing services, so they could only go as far as making a suggestion for an IVF clinic. It was a little difficult because the doctors in my cancer treatment program are connected and I felt like my entire healthcare team at the cancer center knew me; at the IVF clinic I went to, it seemed so separate as far as knowing my patient history.
H: What did your doctors tell you about PGD?
A: When I was talking to my IVF clinic, they said that genetic testing wasn’t something that they did, and I would have to go to a hospital or some other place that does it. Basically, they said, “We don’t do that or know anything about it, so you’ll have to go somewhere else.”
That’s really how they left it, so I really didn’t know anything about it. I kind of assumed it was something I would do later on. Then my friend at CooperGenomics posted something on Facebook, so I started talking to her about it because I had never heard the term “PGD” before that. But since it’s for during IVF, I found out that it doesn’t really apply to my situation now, though I’m happy I’m aware of it for the future.
H: Knowing there can be a sort of ‘information overload’ during treatment, when do you think it’s appropriate for cancer patients to be informed about PGD?
A: I think that there should at least be a little more information given to patients from whoever is doing the egg freezing to give you an idea of what’s to come in the future. I’m sure that if I was getting ready to actually use my eggs, I would have looked it up, but it’s nice to know that I have the information I need for when that time comes.
H: How has the egg freezing process impacted your finances? Does your current healthcare plan cover both your cancer treatment and egg freezing?
A: When I had done the egg freezing, I had already maxed out of my deductible just from my surgeries and all that stuff, so I didn’t have to pay for any of the lab work and doctor’s visits. My insurance at the time had a max coverage amount for egg freezing and I think I had reached that because of one of the medications I needed. But when it came time for the retrieval, there was a lot of back and forth about what was and wasn’t going to be covered by my insurance, which was very confusing.
H: What advice would you have for other women who have been recently diagnosed with breast cancer?
A: I would definitely say a support system is important, whether it’s a support group or family or something, because sometimes when you speak to people who haven’t personally dealt with it, you kind of feel like they’re still not getting how big of a deal it is. That’s not to say that’s their fault or anything, but they haven’t really experienced it well enough to know. My mom went through it, so it was good for me to have someone that understood what I was going through. It’s so important to find someone you can sort of commiserate with.
After going through treatment, Alli went into remission during January 2018. In March 2018, she underwent a surgery to position breasts implants. Though she is clear of any cancer for the time being, she continues to undergo screenings to monitor the potential growth of cancerous cells. She continues to work as a technology consultant and recently moved to Washington, DC. Alli looks forward to one day starting a family, and when the time comes, she will begin IVF using her frozen eggs. After they are fertilized and become embryos, she plans on testing them through PGD to be sure her future children will not inherit the BRCA2 mutation. We wish Alli the best of luck in her life, career, and in her future family-building journey.