On 28th December 2017, we were due to go and ride the Santa train and see the festival of lights at Longleat with my 21 month old son, (his first Santa experience)! Instead we were driving in the opposite direction along the M3 and M25 having been summoned at 9am to go to the hospital. On this date, I was diagnosed with Hodgkin Lymphoma, a diagnosis that I had suspected after months of being unwell but that still came as a huge shock to myself, my fiancé and my family. As we sat in the room with the consultant and the nurse, they spoke about the further tests required to determine the stage of the condition and treatment regime I would be undergoing. I was to have a chemotherapy regime called ABVD of which two key side effects stood out; first was hair loss and second was infertility.
Chemotherapy works by targeting active cells of which cancer cells are, but for women of childbearing age so are her ovaries. As such they also can get damaged from the chemotherapy resulting in you being infertile at the end of treatment. My fiancé asked about the potential for IVF but we were told that would take months, and with my condition already advanced, I didn’t have the luxury of time. That night, all that was going through my mind was my failure. I was going to fail to achieve the one thing in my life I had wanted since being a young lady. I was going to fail to give my future husband the children that we both held dear in our picture of our life together, and I was going to fail to give my son the siblings that I had always dreamt he would have. When your dreams are to have 3 or 4 children and suddenly that prospect is taken away from you, it is heart wrenching. No amount of acknowledging that you are lucky to have 1 child can take away that sense of loss for the children and family you had hoped to have. But as I laid there in bed, unable to settle and unable to sleep, my mind switched into academic mode, I couldn’t accept there was no option. I couldn’t accept that there was no research into potential treatments to help people like me. So I did want many an academic would do, I started a literature search into treatments for fertility preservation in cancer patients.
I read articles, I analysed how worthwhile a contribution they were, I looked at meta-analysis’ and clinical guidelines and in doing this, I found a potential drug used in other conditions that showed in experimental studies potential promise in protecting your ovaries from the chemotherapy. American guidelines didn’t advocate its routine use as egg and embryo freezing were considered more effective, but we had already been told this wasn’t an option for me. In an emergency this drug should be considered and in my mind this was an emergency! I collected my research from my studies and took them to my next appointment to see my consultant. I was armed with evidence for them prescribing the drug and I had a glimmer of hope that my dream may still be possible. As I sat there I asked them about being prescribed a GnRH agonist that experimental studies had shown may help protect the ovaries but their response wasn’t great as they didn’t know anything about that option. My heart dropped, I could feel the hope slipping away from me, if they don’t know anything about it, how do I find someone who does, someone who would be willing to prescribe it.
I was due to start chemotherapy in a week’s time. As I was asked to sign the consent form for the chemotherapy, with all the risks clearly written about infertility, I looked at the consultant and said “this is a Hobson’s choice, on the one hand I can’t not sign it because then I would be saying no to my life, but by signing it I am signing away all my dreams and hopes for what my life was to be”. My fiancé asked whether there was a fertility expert we could talk to, and they were happy to refer us. I left the hospital, my heart was pounding, a sheer feeling of fear running through my body, a sense of a ticking clock and a sheer desperation to find a solution. I had 5 working days, as soon as chemo started it was game over.
The next two days, I spent phoning people, trying to get past gate keepers to speak to people who may know something and may be able to help me. A friend working in a major teaching hospital offered a breakthrough when we found out that you can do an emergency IVF procedure. This was further backed up when a very kind private fertility consultant phoned me thanks to a referral from a friend and spoke to me for 15 minutes (unpaid) giving me all the information about an emergency IVF protocol that can be done in about 2 weeks. I felt like two guardian angels had come to my rescue and new hope was on the horizon. A whole weekend and another working day went by, and with my impending chemo start date looming the stress and anxiety was mounting, the fear and hope growing and the sheer feeling of having no control over your future destiny was overwhelming. Being at the mercy of other people’s time clocks and priorities, when to you this was the greatest priority life had ever put my way. Then the phone call came, the obstetrician I was referred to could see me but it was same day that chemotherapy was due to start so a decision needed to be made. Do we delay the chemo to see what options might be available to preserve my fertility? We had to, as if didn’t then there would always be the what if questions and the associated guilt that would come with that.
I was scanned at my appointment with the fertility consultant and another little guardian angel was looking over me that day. I was a little further on in my cycle than ideal but my follicles hadn’t matured sufficiently as such, so we were in position to undertake emergency egg collection protocol that day. We filled in what seemed like endless consent forms and given guidance on how to inject the hormones, and the whole afternoon went by in a daze. We informed my oncology team that we would be delaying chemotherapy by two weeks. This was deemed acceptable by my consultant. The downside to starting this protocol so quickly was trying to manage my expectations on the treatment. On that first scan, each ovary looked like may have 8 immature follicles. I had built up in my mind that we would collect 16 eggs and then maybe a dozen would fertilise. The second scan confirmed I had 3 large follicles and 3 smaller ones on the right and only 1 on the left, once again the sense of dread and fear started to set in. What happens if after all this, and delaying chemotherapy we come away with nothing? What if once more I fail my family?
The positive was that my fiancé and I were in this together. We were both having tests, we were a team. Egg retrieval day arrived and while my fiancé waited in the reception area for the nurse to bring him my eggs, he prepared himself to transport them across London. As I came around in the recovery room and reunited with my phone, he had sent me a photo of my eggs tucked up in their incubator, strapped tightly into the car. And as I lie there, all I could think of was my potential future babies all tucked up being protected by their daddy.
They retrieved 4 eggs, a significantly lower number then my original expectations, but as my consultant said, if we only get a couple of embryos we have done well. Over the next few days we waited nervously for news from the embryologist. I started my chemotherapy 2 days after my egg collection, a week that really took its toll on my body both mentally and physically. On the Saturday, the phone call came. One of our embryos was ready to be frozen and a second one looked like it may be ready tomorrow. We had done it! We successfully froze two embryos! The sheer sense of relief that all the stress, the anxiety, the fear, the hormones and the operation itself was all worth it. My obstetrician also agreed to the use of GnRH agonist to try to protect my ovaries, so we had a two-pronged attack on premature infertility.
Our hopes for our future family are still alive. Safely tucked up in a lab waiting for us when we are ready. But it was a difficult journey to undertake and I fear there are many women out their like myself who don’t know what options may be available to them even when they may have advanced condition. A research study into practice among oncology health workers found that 95% will discuss the impact of treatment on fertility, but a staggering 60% will not routinely refer women of childbearing age to a fertility expert*. All I know is that thanks to my guardian angels, who helped me navigate the system at a time when I felt like I had no control over my own destiny, I now have hope for my future. I can deal and cope with anything this condition throws at me, because at the end I may still get my happy ever after. My fertility journey is just beginning, and I won’t be able to pick up our journey for at least 18 months. I don’t know what the future will hold but at least my dreams are still alive for now, something that will get me through every day of the next few months. I just hope that other women, and young ladies and men out their like me get to keep their future dreams alive too.
*Forman et al (2010) ‘A nationwide survey of oncologists regarding treatment-related infertility and fertility preservation in female cancer patients’ Fertility and sterility 94 (5)