Another part of the story

Besides a minor mention here and there, I have never really written about fertility and cancer — specifically, my fertility and my cancer. I’ve had numerous reasons why I didn’t want to write about it: feeling that it was too personal and private, something only to be discussed by me and my husband, or worrying about friends who are moms or soon-to-be-moms feeling they can’t talk about anything baby-related in front of me. But I’ve come to realize that by not writing about it, it sometimes puts me in uncomfortable or awkward situations, which other people likely aren’t even aware of. And why should they be? I don’t talk about it, so their ignorance is really my own doing. I also know that a lot of people read my blog as a way to educate themselves about how it feels to have cancer, especially as a young person, and by not broaching the very important issue of cancer and fertility, I’m not doing a really great job as cancer teacher.

So, here we are. And I am ready to talk about it. Or at least, some of it.

When I was first diagnosed with breast cancer at the age of 28, one of the first things my doctor told me was that she wanted me to see a fertility specialist immediately, since certain cancer treatments can have a negative effect on one’s fertility. This is one of the very major issues facing young adult cancer patients, and unfortunately, it is often overlooked. I have heard countless stories of young men and women who were thrust into cancer treatment, without their fertility being discussed. This is a huge problem, and one I think all young people and all doctors should be aware of. So in that regard, I was very fortunate that both my family doctor and oncologist had discussions with me about how my treatment might impact the potential for me to have children.

Learning that my ability to have children might be compromised on the same day as learning that I had cancer was a major double whammy. It was a tough pill to swallow, when I was already considering the possibility that I might not even live long enough to start a family in the first place. Most people who get cancer are quite a bit older, and don’t have to deal with such things. But unfortunately for me, and for my husband, we had to deal with it, and fast.

The same week that I was meeting with breast surgeons, trying to decide if I should remove one breast or two, I was also meeting with a fertility specialist to discuss my options. To say I was a bit overwhelmed would be a wild understatement. I had tons of information coming at me from every angle, and very little time to make decisions that would greatly affect my future. It was kind of a shitty week, you might say.

The fertility specialist did various tests and exams, where my husband and I learned that, yep, we were indeed fertile. Yippee. Too bad I was about to shoot my body full of drugs that could potentially ruin all that.

There are specific chemotherapy drugs that are known to have a damaging effect on fertility. Unfortunately, I had to get one of them. This was not an option. You can’t get pregnant if you’re not alive (lesson of the day!), so staying alive was my first priority, above and beyond everything else. And sadly, in the world of cancer, the best proven method of doing this is often by poisoning yourself.

We were given the option of retrieving embryos, which we could then “store” for  the future, if needed. At first, this seemed like a good solution. An insurance policy, in case the worst case scenario became a reality. (A very, very expensive insurance policy, mind you, as these procedures aren’t covered in Ontario for cancer patients.) With barely any time to think about it, it seemed like the smart thing to do. I got a bunch of prescriptions for shots I would need to give myself and a million consent forms that needed to be signed, and we were off to the races. At least, that was the initial plan.

As I began doing more research about the hormones I would have to take, despite some limited studies showing it was safe, I started to feel uncomfortable by the idea of messing with my hormones, especially when I have a hormone-sensitive type of cancer. It felt risky, especially when knowing that a) we might not even need the embryos and b) if we did need them, there’s not even any guarantee that the procedure would work. In many cases, it doesn’t.

I was also presented with the option of joining a clinical trial, where I could potentially receive a drug that could benefit me, targeting my specific type of cancer. If I chose to do the fertility preservation, there was a good chance the start of my chemo would have to be pushed, and I might not qualify for the trial.

To top it off, the thought of injecting myself with hormones and dealing with potential side effects from that and having to undergo the egg retrieval, at the same time as being in tremendous pain from my double mastectomy with immediate reconstruction and gearing up to start chemo… well, it became less and less appealing.

One night, I was filling out the form where we had to decide what to do with the embryos if we ended up not needing them. Would we donate them to another couple? Give them to research? Have them destroyed?

Suddenly, it all just felt like too much. It felt like I was doing what I thought I should do, rather than what my gut was really telling me to do.

After expressing my concerns to my husband, he admitted to having the same concerns too. We discussed it some more, and then came to our final decision that we were going to put the brakes on the preservation process, and have faith that things would work out for us. Dealing with the cancer felt like more than enough for us to have on our plate at that time. So with that, we put 100% of our focus into making me healthy. I joined the trial, began my treatment, and tried to push thoughts of babies and pregnancy far out of my mind.

None of this has been easy. I remember being so angry that I had to make such hideous choices. I shed a lot of tears, cursing cancer for destroying my dreams. I have wanted to have children since I was a child myself. Anyone who knows me knows this fact about me. We had hoped to have a mini S or mini J pretty much… right now. But cancer decided to show up and derailed the plans and the future we had envisioned for ourselves. At least for now.

So where does that leave me now? I am not quite sure. It is not really possible to tell what effects the chemo had on my fertility, since I’m taking a drug which messes with my hormones. And, to top it all off, I am not allowed to be pregnant while taking said drug… which I am supposed to be taking for a minimum of 5 years, and possibly 10. Or, I have the (not medically-approved) option of coming off of it early, which there are NO good studies to support, and possibly increase my risk of having the cancer come back and not surviving. So my big decisions are not over. Not even close.

It is hard seeing people around me getting pregnant and having their babies turn into toddlers. It is hard seeing photos posted at every hour of the day. I’m fairly certain anyone who has wrestled with any type of fertility issues can relate on that one. We live in a very baby-centric world, especially when you are my age. It ain’t easy. (Although I make myself feel better constantly by thinking of the vacations and nights out my husband and I can take whenever we please, and our ability to sleep in on the weekends as late as we wish. We often say “If we had a kid right now, we couldn’t be doing x,y, or z.” It makes me feel better… for a moment, at least.) If anything, this whole ordeal has made me much more sensitive and empathetic toward couples who are experiencing infertility problems.

I do have a lot of hope for our future, and our family. I know, regardless of fertility issues, there are options. I like to think that all of this sad stuff will eventually lead to somewhere happy. I need that hope, and I hang on to it.

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15 thoughts on “Another part of the story

  1. i’m glad you posted this. my husband had cancer as a child which affected his fertility. i also have issues of my own which has left it impossible for us to have children of our “own”. i only wanted to say this to state that i understand some of the thoughts and feelings you’re having (and you’re not alone). so many people tried to interject their opinion and often said hurtful things even though they meant well. do what’s best for you and hang in there. things have a beautiful way of working themselves out.

  2. Wow. What a crazy crazy rollercoaster that you had to ride full of questions and no easy answers. Thank you for sharing something so personal but so important for any women in your shoes or about to wear those shoes. I hope so much that your journey does end how you , thinking of you x

  3. Thank you for sharing your story. I had no idea before that IVF could be so complicated and risky cancer-wise. Also, I deeply commend you for pointing out that many doctors don’t discuss fertility issues before patients go into treatment. I’m really happy for you that your doctors didn’t fail you in that regard. None of my doctors ever discussed it with me. On the one hand, I don’t mind so much because I had no time but to jump into treatment at the time of diagnosis, so it was one less thing to worry about. But on the other hand, I feel cheated that the topic has never been broached over one and a half years since then, and that I had to learn about the fertility implications all from my own research. And as you said, for a young adult, this topic is *huge*.

    Overall, as always, thank you for your candour. I think it’s very brave and generous of you to share your feelings and experience.

  4. Thanks for sharing this Steph. Stories like yours are really important for clinicians and others in your situation to hear. I really enjoy your blog. I shared this post with some colleagues, who like me, are PhD students interested in women’s reproduction, particularly in/fertility and the implications of fertility treatments.
    Cheers,
    Lesley

  5. A lot of people know about the technical side of cancer – the treatment, the surgeries, etc, but a lot of people don’t understand the human side – all those little but monumental decisions that build up to where you are now. My single mom is a cancer survivor and I was 12 at the time she was undergoing treatment, and I’ll never forget all those nights she cried wondering what to do next or what she might have to do. People see the treatment and its effects, but they don’t think about all those moments in-between, which maybe matter even more, so I appreciate your telling of them and I think it’s really important that they are told.

  6. Hi Steph. I know it must have been really difficult for you to share something this personal but I’m sure you’re helping someone out there by doing so. As much as fertility issues suck, the alternative sucks way more. As you said “you can’t get pregnant if you’re not alive.” I’m keeping you in my prayers and sending the best of wishes to you and your family.

    Hugs,

    Donna

  7. oh Steph….. I did it the other way around. I was infertile first and then had cancer. heck, I probably kicked my cancer into high gear with all the hormones I injected through 4 cycles of invitro. I know it’s not the same, but the feelings and the fears with regards to motherhood, they are the same. if you EVER want to talk, reach out to me on FB. I’m the proud mom of 2 great girls who were born to other mothers in China and honestly, I wouldn’t have it any other way. But I’ve explored all the options, I blogged it all back in the day. I’m here if you ever want to talk

    • Thank you! I probably will take you up on that talk. I have heard of many similar stories of women having BC after doing IVF… the studies show it is “safe” yet it’s so hard to know, when you hear of so many stories. That’s part of the reason I’m a bit nervous about all that stuff, with my recent cancer history and whatnot. I’m sure you’ve wondered about it a lot yourself, the same way I wonder “why” I have my cancer. There is no way to really know, is there? Just one of those things we have to learn to move past and accept, I suppose.
      Thanks for your comment :) And hope you’re feeling better!

  8. Steph, I pray for you all the time and although I cannot even to begin to imagine what you have gone through thus far, I believe in my heart of hearts that things are going to work out in your favor. Candy

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