Co-Founder of Adia (now Parla), Rose Acton, shares her experience of being diagnosed with a brain tumour and Lynch Syndrome and how this has impacted her fertility choices.
As soon as I got diagnosed with cancer, I immediately thought about the impact on my fertility. I already knew that fertility was complex, and until you’ve had a healthy birth, nothing is for sure. Lina, CEO of Parla, taught me that. She experienced a miscarriage, stillbirth and subfertility. But add cancer to the mix, I knew things were going to be complicated. And they were — and still are…
Egg freezing
Wind back to the start of my journey and it was already at the front of my mind. I asked the Oncology Consultant on the day of the diagnosis — will it impact my fertility? Can I freeze my eggs? The Consultant referred me to the Fertility Clinic to explore the possibility of freezing my eggs. Unfortunately, they said — at best — the fertility freezing would take at least 2 weeks – and sometimes longer. But with a grade 4 glioblastoma brain tumour (GBM4), time is of the essence.
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After discussing my fertility the Consultant strongly advised prioritising on my health and my treatment plan – and had actually pre-booked a range of appointments — a mask fitting (for radiotherapy), my height and weight measured, bloods taken and an MRI scan that afternoon — so that was the end of that! I felt stressed, overwhelmed and sad — but I knew that my health was top of the priority list.
Lynch syndrome — another diagnosis
A few months ago — during my treatment — I was referred to a genetics clinic for genetic testing. This was a result of both my grandparents (paternal and maternal) having died of a brain tumour both in their 40s. This alerted my Consultant to the possibility of a genetic link and arranged a referral to the clinic. Results day confirmed I had Lynch Syndrome, and they had identified the genetic component MSH6.
Essentially, the genes involved in Lynch Syndrome usually repair damage to our cells – all our genes come in pairs as we get one copy from our mother and one from our father. The genes involved in Lynch Syndrome usually repair damage to our cells. By doing this, they protect us against developing cancer. In people with Lynch Syndrome, one of the mismatch repair genes is altered, so it cannot do its job properly.
This condition leads to an increased risk of bowel, endometrial, stomach and ovarian cancer – between 50% to 60%. However, it is also thought to lead to around a 1 to 4% per chance of developing a brain tumour, compared to a general population risk of less than 1%. Around 1 in 440 individuals are thought to have Lynch Syndrome (so it’s not common!).
Fertility and Lynch syndrome
Children will have a 50% chance of inheriting the altered gene – and unfortunately I am one! It means that to have children, I’ll choose to have IVF. This is because in IVF they can screen out “mismatch repair genes” — meaning none of my children will inherit the Lynch Syndrome. On the positive side it means Lynch Syndrome stops with me.
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Before IVF they investigate the number and quality of eggs. They do this by measuring anti-mullerian hormone (AMH) and follicle-stimulating hormone (FSH) or by counting the number of eggs-containing follicles. They also check your general hormone health, whether you are ovulating regularly and much more (read more about it here).
The consultant said that with my specific chemotherapy drugs the significant impact on my fertility is low and most patients of my age on this regime retain near normal menstrual cycles and fertility or amenorrhea. I currently have amenorrhea – missed periods. We’ll have to wait until I’ve finished treatment to find out if my menstrual cycle comes back. If the eggs have not been damaged through my treatment and I have enough of them – then IVF is feasible. I’m 28, and not yet thinking about children, but this has given pause for thought. It’s life’s goal posts, moved around a little bit, but until we have a healthy birth we just don’t know – as is the same with everyone else.