I was diagnosed with womb cancer at 36 in 2023. A cancer diagnosis is devastating at the best of times but we were in the midst of trying for a baby, and womb cancer was the last thing I expected.
I was so desperate to have a baby, I perhaps overlooked symptoms that might have seemed suspicious otherwise. When you are trying for a baby, you start focusing on any changes to your body, and I barely remembered what was normal for me before our journey started. I was also told that the new symptoms I was getting – very heavy periods and mid-cycle spotting – were likely to be due to the miscarriages we were having.
We had undertaken a first round of IVF in December 2022, but something they spotted during my scans led my clinic to recommend undertaking a hysteroscopy before using one of the embryos we had created. They suspected I had some polyps in my womb – suddenly the symptoms I had been having, as well as the early miscarriages, started to make sense. You rarely get definitive answers in a fertility journey, but I was hopeful as I thought we had found the reason for why it hadn’t happened yet.
I’ll always remember getting the call from the fertility clinic in February 2023 – I was told they needed to speak to me urgently and that my husband should be with me. In the biopsy they had taken during my hysteroscopy, they had found grade 1 endometrial cancer and my tumour tested positive for lynch, a faulty gene that makes it more likely to develop a number of different cancers.
I spent weeks in absolute turmoil. I was transferred in to the NHS for a further hysteroscopy and MRI. This came back to suggest that I had grade 1 / stage 1a cancer and thankfully it didn’t look like it had spread. Based on this early diagnosis, we were given the option of trying progesterone treatment (a Mirena coil), in an attempt to delay the hysterectomy I would ultimately need. If it worked, there was still a chance I could become pregnant.
I was so desperate for it to work. In fact my symptoms disappeared. My periods were light again and I got no mid-cycle spotting so I was cautiously optimistic it was working. Sadly, that was not to be the case. In July 2023, I had a further hysteroscopy and they found grade 2 endometrial cancer. I was told there was no other option than to have a complete hysterectomy, including removing my ovaries and fallopian tubes. I was referred to the regional cancer team for a final review as they were hoping I might be able to keep my ovaries and avoid the surgical menopause. However, a subsequent MRI and PET-CT scan indicated it also might have spread to my pelvic lymph nodes so that wasn’t going to be possible.
We went on holiday just before my surgery to try and give ourselves something positive to focus on for the coming months. I couldn’t bare to feel like I lost my fertility on an operating table, so we had a little moment while on an epic hike in the Pyrenees where we tried to honour my womb, as silly as that sounds! I wanted to feel like I could control when and how I lost my fertility, even though it was ultimately taken out of my hands. Whenever I think about all that we’ve lost as a result of my surgery, I try and think of that amazing view, on that beautiful day in the mountains. It somehow makes it slightly more bearable!
Recovery from the hysterectomy was incredibly tough, emotionally and physically. But I held on to the hope that this might be it and we could try to move on once I recovered. Sadly, my cancer had other plans. The biopsy from surgery showed that it had spread to my lymph nodes and that some cancer was also found in my back. I went from having stage 1/grade 1 in February 2023 and stage 4/grade 2 in October 2023. Once again, we were in disbelief.. Thankfully, my cancer was operable and everything came out in surgery but I was advised to throw everything at it to try and stop it coming back.
In November, I started a 5 week course of chemo-radiation, where you have chemotherapy alongside radiotherapy. I didn’t even know that was a thing! It was tough, and incredibly emotional. I couldn’t stop crying in the last week of treatment, so desperate for it to be over. I then had 6 weeks off to recover, and then I started a further 4 rounds of chemotherapy. I lost my hair and I really struggled to stay positive. Many days were a struggle but with the love and support of my husband, friends, family (and dog!), I got through it! I also channelled my inner granny, and embarked on a embroidery project, which gave me a sense of achievement when I could barely get off the sofa!
My doctor had also secured me access to a newly approved immunotherapy – which I know Peaches had a huge role in making happen for patients up and down the country. Instead of finishing my treatment with chemotherapy, I am back in clinic every 6 weeks (potentially for the next 2-3 years). Part of me finds it tough to be back so frequently, a reminder of everything I have been through. But at the same time I recognise I am fortunate to still be on treatment, doing everything I possibly can to stop the cancer coming back.
We are now trying to rebuild our lives even if life will never be the same again. Although I always will have to look over my shoulder, fearful about cancer for the rest of my life as a result of my Lynch diagnosis, I’m thankful I now know about it, and can be on surveillance.
I’m also passionate to turn my devastating diagnosis in to something positive. I want to do all I can to raise awareness of womb cancer and share experiences about the life altering changes as a result of it, whether that is going through the menopause or losing your fertility. I also want to give back to the charities that have helped me over the past year – later this month (Sept 2024), my friends and family are attempting to walk over 1,000km in the Peak District to raise money for Peaches Trust and Eve Appeal…and I hope to do more in future.
