The Unexpected Pressure of Making Fertility Decisions After Diagnosis

Being a control freak all my life, when my husband and I decided to try to get pregnant, I wanted to do everything perfectly “by the book.” I had already stopped my hormonal birth control a few years prior. I went to my family doctor to get my pre-conception bloodwork screening and vaccination titres to ensure I was healthy. In November when I turned 35, I go the “clear” from the doctor. Soon after, during a self-breast examination in December, I found a lump. I put all plans to conceive on hold while I was investigating it.

Within a few months, in March 2020, I heard the dreaded words: “You have triple negative breast cancer.” As I cried in the examination room, by myself due to COVID-19 protocols in place, the doctor discussed surgery that would take place within a week and systemic therapy I’d have to go through.

When she finished her spiel, she asked if I had any questions. “Will I lose my hair?”, which she replied yes to; followed by “Will I be infertile?” – she paused and said “Possibly.” I thought my heart couldn’t break more, but it did. At this point, I was offered referral to a fertility specialist. For anyone going through a similar experience, I’d advise them to always advocate for yourself and ask questions, because the doctor may not know what your priorities are.

“I had barely ‘accepted’ the fact that I had cancer, and then I find myself planning for a family when my own future is so uncertain.“

The following day, I was being bombarded with information: egg collection, embryos, IVF, hormones… It was extremely overwhelming, and suddenly I was on a short timeline to make a decision that would impact my entire future and relationship. Given that my cancer was triple negative, my oncologist was okay with me pursuing a cycle of IVF before the start of chemo. We opted for embryo freezing. The cancer agency set us up with a social worker who informed us of programs that could help us financially with the cost of IVF as a cancer patient. The actual process of injecting yourself multiple times per day was very difficult – it was an additional roller coaster of emotions on top of the cancer roller coaster: mood swings, boob pain, bloating. I was not emotionally ready for any of this, but I was grateful to have this option. After a week or so of injections, serial blood tests and ultrasound determined my eggs were ready.

During this entire process I felt that my mind and body were in two separate phases. My body was rapidly undergoing all of these procedures and changes, but my mind couldn’t catch up to make sense of any of it. I had barely “accepted” the fact that I had cancer, and then I find myself planning for a family when my own future is so uncertain. Having to sign paperwork where I decide what will happen to our embryos in case of my death when you are truly facing your own mortality, it’s daunting to say the least. I constantly found myself unable to make decisions – I was too emotional to be able to rationalize anything. Thankfully, my husband would break down the tasks and simplify the process to help me during this time. “Do you want to go through IVF?” “No, I don’t want to bombard my body with external hormones” “Do you want to have a family one day” “Yes” “Would you do IVF if that meant a possibility of a biological family?” “Yes.” Breaking down conversation helped me understand my fears and also see the logic in things. At every obstacle on the path (and there were many), I would find myself thinking “I can’t do this.” But somehow, I did it and the next day, whenever I felt that I couldn’t do it, I just looked back to yesterday and saw that I had done it, even though I didn’t think I could. This was encouraging.

On April 30th, I arrived to the clinic – this was the happiest I had been since my cancer diagnosis. I took pictures of myself and imagined the day I’d show it to my kid and say that was the day it all started. I finally had hope again. The procedure itself wasn’t comfortable, but it was exciting to watch my eggs getting collected on a screen. They managed to get 14 eggs (the goal the doctor set for me was 12-15). The doctor was hopeful that with this number, I’d likely have about 3-5 embryos by the end.

I went home with the worst cramp of my life. I was afraid to exercise and have ovarian torsion. We started getting daily calls updating about our embryos: from the 14 eggs, 10 got fertilized, and five embryos made it to the freezing stage. I couldn’t be happier. At this point I was just thinking “What are we going to do with five embryos?! We only want a couple of children!” We then opted to have genetic testing done on the embryo, but that would take a few weeks.

“I didn’t think that the post-cancer phase would be as hard as it is.”

I started my chemotherapy as planned two weeks later. The day after my first chemo I get a call from my fertility doctor saying, “Hi, I’m so sorry to tell you this, but none of your embryos are genetically normal.” My heart broke yet again. The doctor explained their mismatched chromosomes, explained we could still keep them and try to get pregnant with them, but that usually they would end up in a miscarriage anyways. All I managed to ask the doctor was “Why?” “Unlucky,” he said. That was an understatement. My husband and I didn’t make the decision to discard these 5 embryos for another 4 months – it was just too difficult to deal with it. They said I could try again after my chemo, but I am not sure I ever want to try IVF again.

I received a monthly deposit hormone during my chemotherapy, to hopefully downregulate my ovaries so that less eggs would be killed by chemo, with the goal to preserve my fertility. There are no definite studies that prove this works, but I was willing to try. I took four months of these painful intramuscular injections. Once chemo finished, my period resumed after five months and my menopause symptoms subsided. My oncologist gave me the go-ahead to try to conceive whenever I feel ready. That will be the only way to know if I’m fertile or not – if nothing happens within six months of trying, they can do additional testing to determine my fertility status. Feeling ready for a family was already something that took me 10 years in my relationship to get to. Feeling ready again after cancer almost seems impossible – what if the cancer comes back? What if I can’t do my mammograms or follow up diagnostics because of pregnancy/breast feeding and they miss an early recurrence? What if the pregnancy hormones trigger something? What if I can’t naturally conceive? Anxiety just holds my hand and takes me for a wild ride, which I have to consciously and constantly try to rationalize my way out of back into reality. It feels that now the decision is on me, and no longer a “medical” decision, making it even harder. I don’t feel recovered from cancer enough to embark on an unknown trying-to-conceive journey, but I know the clock is ticking.

It is so difficult to be intimate between the nausea, the fatigue, the hot flashes, the body aches. Also, shifting roles from husband and wife to caregiver and patient is truly a non-aphrodisiac! Having regular counselling sessions with the cancer agency (for myself and for my husband) has helped us understand this temporary shift in our relationship. We are learning the different faces that intimacy can have and find comfort in knowing that it will get better eventually. Being able to openly discuss this with my husband and feeling supported decreases my anxiety around this and gives me hope in navigating our relationship post-cancer. I didn’t think that the post-cancer phase would be as hard as it is. Even though my body has recovered, my mind is still trying to deal with the trauma – trying to put the pieces back together. I am happy that I tried IVF even though it didn’t work. I put myself out there and gave it my best shot, given all of the circumstances. Unfortunately, that wasn’t in the books for me. I don’t know what the future holds for me and my husband and our plans for a family. It’s still a long road ahead and constant work in-progress. We are not giving up our dream to have a family, in whichever way that might end up happening. — Julie Nunes