In 2017 I had a recurring abscess down below, which I discovered while in the toilet at work one day. When I first felt it as I was wiping, my stomach flipped. I’d already had cancer once – bowel cancer in 2010 at the age of 22. I also have a genetic condition called Lynch Syndrome, which makes people more likely to get certain types of cancer. So naturally, when I felt the little bump that day, the C word was the first thing that came into my head.
My doctor confirmed it was an abscess. Nothing serious then, but it stuck around for months. Sometimes it would simply come and go without hurting or getting very big at all, but once it got so big I could barely sit down in comfort. After several recurrences and a bit of going around in circles with referrals and feeling lost in the medical system, I was sent for an MRI.
The MRI didn’t pick up anything around the area of my abscess, but it did pick up something in my womb that needed to be checked out, so I was referred to a gynaecologist. Filling defects, the letter said. I had no idea what that meant, and searching on Google brought up nothing of any use. But the abscess was still a problem too, and I wondered if the two things were connected somehow. After all, that was the reason why I had been sent for an MRI.
The gynaecologist gave me an exam which seemed fine, and he looked at my MRI results. He said he didn’t think it was anything to worry about, but I could get a hysteroscopy just to be sure. I said no because I didn’t want to put myself through anything else if it wasn’t necessary, and I went away happy.
However, a few weeks later I received a letter in which the doctor said that he had changed his mind. I had told him about my Lynch syndrome during the appointment, and he didn’t really know anything about it – which was surprising as womb and ovarian cancer are risks with Lynch syndrome. But in the letter, he said that he had been researching the condition and he thought I should get a proper exam just to be on the safe side, so he was referring me to someone else for a hysteroscopy. I had known about the risk of womb cancer, but like an idiot I hadn’t mentioned it and I hadn’t said yes to the hysteroscopy. I was scared of what it might find, and it was much easier to assume that everything was fine. Thank goodness for that gynaecologist, because if I was left to my own devices I could well be dead.
I went for the hysteroscopy and awaited the results. I told them that I was going on holiday soon, so if I needed a follow-up appointment it would have to wait until I got back. Meanwhile, I had also been awaiting my annual post-bowel-cancer gastroscopy appointment. It turned out that the gastroscopy revealed a polyp which was sent for biopsy. It was flat and to be treated as urgent.
Despite telling the receptionist at the hysteroscopy appointment that I would be away for the first two weeks of May, when I arrived home there was an appointment letter waiting for me – and the appointment was for that very day. I got on the phone to explain that I’d only just arrived home and rearranged the appointment for the following Friday. I was worried but I relaxed a little knowing that whatever it was surely wasn’t that urgent, because apparently it could wait seven days.
But that wasn’t the only nasty surprise coming my way. My bowel cancer consultant wanted to see me, and not at his usual outpatient clinic – I had to go and find him on a ward. This was not a good sign. They had found some cancerous cells in the duodenum, which is a small part of the small intestine. They were going to refer me to a hospital in Leicester, where they had specialists who dealt with the small bowel. Surprisingly, I left the hospital in quite good spirits. We knew what was going on. My consultant had made me feel quite at ease and like whatever it was would get sorted out, and everything was going to be okay.
The next day was my appointment with a different gynaecological consultant to get the results of my hysteroscopy. I wasn’t expecting it to be anything too bad, which is why my partner wasn’t there. The last thing I expected to hear was that the lining of my womb was pre-cancerous, with suspicion of early stage cancer.
I could hardly believe it. First the news about my duodenum, and now this? Two diagnoses in as many days. I was going to have another hysteroscopy, this time under general anaesthetic, and an MRI to get more information. She would also refer me and my partner to a fertility specialist in London to talk about options, but I may need to have a hysterectomy. If the cancer was early enough or if it was pre-cancer, we may be able to have a baby or freeze some eggs before any treatment or surgery happened. It was a lot to take in.
The MRI scan and hysteroscopy results came back and soon I had an appointment to see my gynaecologist again. I was worried that it had come back so quickly – was it definitely cancer and not just pre-cancer? Was it worse than early stage? Late stage?
It was indeed cancer and not just pre-cancer – stage 1a. We were told that we could freeze some eggs for later use with a surrogate, and when that had been done I could have my womb and ovaries removed. Ovarian cancer is a risk with Lynch syndrome just like womb cancer is, and one isn’t much use without the other, so there was little point in keeping them. Having my ovaries removed would mean going into early menopause, but that sounded like something I could deal with. I had already thought about this happening. When I saw a genetic counsellor about my Lynch Syndrome back in 2011, we talked about how I should have a hysterectomy by the age of around 35 anyway as a preventative measure, because hopefully I would have had children by then, and that’s the age at which the risk of womb cancer increases. So we already had a timer for when we needed to have children by. We just didn’t expect it to be cut short by five years. But once again, I was feeling fairly optimistic when we left. In fact, I think the gynaecologist and the key worker at the appointment were surprised at my attitude. I said it was really the best possible news I could have gotten that day, which wasn’t completely true, I realised later – it being only pre-cancerous would have been better than early stage, but the outcome might have been the same either way because pre-cancerous cells couldn’t just be left in there. I had been thinking about how bad it could have been – if it was a later stage cancer - and I was relieved when it was slightly better news than the worst thing that my brain could conjure up.
What the fertility specialist told us came as a bit of a surprise. We thought we were there to discuss fertility options – mainly, freezing my eggs for future use with a surrogate. To get this procedure underway I would first need to take medication to make me fertile, which would happen a couple of weeks before egg collection. But he explained that stimulating the eggs also results in stimulation of the lining of the womb. In other words, it would cause the lining of the womb to grow, and this might also make the cancer grow faster. We could still do it, but it was up to me to decide if I wanted to take the risk. I didn’t. Which was good in a way because as he said, when a patient doesn’t want to take any risks it makes the whole decision process easier for everyone, and they can just do whatever is best for the patient. He also presented us with another option – an alternative to surgery. This would be in the form of medication that changes the hormones in the body, and it can work when the cancer has been caused by a hormonal imbalance. But as mine was caused by Lynch syndrome, there wasn’t any evidence as to whether or not it would work for me. And this treatment
would take a year, so at the end of it we’d be a year on and if it hadn’t worked, the cancer might have spread. So that was a risk, too. And leaving the ovaries would put me at risk of ovarian cancer from Lynch syndrome, so we discussed removing them at the same time as removing the womb. My partner and I agreed we didn’t want to take any unnecessary risks. So no risks for us. And no biological children for us. Even if we did opt for IVF, the chances of it working would have been extremely low.
I figured that the concept of not having my own children was something I would deal with later. I felt guilty that I couldn’t give my partner children because I knew he wanted them – probably more than I did. I had never been desperate to be a mother. I always thought that if it happened, then that would be great and I was sure I’d be very excited. But if it didn’t happen, it wouldn’t be the end of the world for me. I wasn’t ready to process it all, anyway, and after already experiencing bowel surgery and the emotional trauma that came long after, I knew that I probably wouldn’t feel the true upset of the situation until much later.
We were looking at two separate operations – the hysterectomy first as it was smaller, and then this second operation once I had recovered from that. The operation for my duodenal cancer was called a Whipple procedure, and it was a very big operation.
Compared to my bowel operation, the hysterectomy wasn’t too bad. My family came to see me every day – though I felt bad that they had travelled so far to see me and I could barely stay awake to talk to them, especially later in the evening. My catheter was taken out on the second day of my stay, which surprised and worried me. It meant I had to get up and go to the toilet now, and that I had to make an effort to walk around and get better. Plus, once we were up and about we were expected to go to the kitchen and sort out our own breakfast. We had toast, cereal, fruit and yoghurt to choose from. I would have much rather had breakfast brought to me at my bed. It was a good thing really, though, because walking around helps to get your bowels working again, and going to the toilet was something of a pre-requisite to leaving the hospital. I had to leave a urine sample in the bathroom to show that I was peeing enough and that I didn’t have a water infection, and I had to have a bowel movement before they let me go. In the small four-bed ward I was in, each of us celebrated when we managed to do each of these things – ticking off requirements that took us closer to going home. And I was certainly keen to get home. Once again I had the problem of finding it difficult to lie on my side, but I found that I could sort of prop myself up with the help of a pillow placed behind my back. I was looking forward to the comfort of my own bed.
Things weren’t easy at home. I had been throwing up in the hospital and my bowel was trying to get over the shock of being moved around. For the first couple of days it was like I’d had my colostomy reversal all over again. I had bad wind pain and acid reflux, and couldn’t face eating very much. My belly hurt and I was too tired to do anything but sit and watch TV. Even picking up my phone to reply to my friends’ messages felt like too much effort. Although the first few weeks were hard, I made progress every day.
My gynae consultant confirmed that I didn’t need any further treatment. I was advised not to go on HRT because of the cancer risk associated with it, so I’ve been lucky that I haven’t experienced much in terms of menopausal symptoms. Two months later, the Whipple surgery for my duodenal cancer took place. It was much harder to recover from but was ultimately a success.
I was very lucky that the first gynae consultant I saw had changed his mind about sending me for a hysteroscopy. I should have said yes to it myself because I knew what the risks were with Lynch syndrome, but I was so scared of what they might find. If I hadn’t had the abscess, I wouldn’t have been sent for an MRI, and I wouldn’t have been referred to that gynaecologist because of what the MRI picked up. And if he hadn’t then sent me for a hysteroscopy, I wouldn’t have had my cancer diagnosis and I might not be here now. It’s just amazing how everything lined up to get me on the right track – even if at the time it felt like a terrible track to be on.
It hasn’t been easy living with the knowledge that we’ll never be able to have biological children. Not long after my hysterectomy a co-worker announced her pregnancy and I remember sitting in the office at lunchtime hearing her talking about babies and pregnancy for what felt like ages. I ended up walking out of the office, down the street and towards the stream, where I sat under a tree and cried. It was too hard to hear about her baby plans and experiences. While I was sat there, I got a call from the MRI department telling me I had to go for another scan because they had forgotten to do part of it when I was there a week or two before. It really highlighted the disparity between our experiences.
It’s just over two years since I had my hysterectomy and Whipple procedure. I’ve been going to checkups regularly (though not quite so regularly during the pandemic) and 7th November 2020 will mark my two year cancerversary. So far, so good. I hope reading my story will help anyone who is facing womb cancer or a hysterectomy, and my Twitter DMs are always open – message me at @writersamr if you’d like to chat.
This blog post was adapted from my currently unpublished memoir, so if you found it interesting and think I should publish my entire story, please do let me know! if you like, you can read more of my musings at writersam.co.uk.