At the end of December in 2019 I started having some abnormal bleeding, my periods were always regular every month, so I knew that this bleeding wasn’t normal for me. I also had this really severe itching in my groin, and a watery, smelly discharge. I just thought ‘It’s been going on long enough, I need to get myself to the doctor now and get it sorted’.
I had an appointment with my GP on the 11th of January, in the end the doctor wasn’t there so I saw the nurse. She said she could see where the bleeding was coming from and that there was something on the side of my cervix, about the size of a 5p. She was amazing and put me straight onto a two-week referral for testing and investigations.
So later in January 2020, I was called in for a colposcopy. The gynaecologist had a look around and said that she thought everything looked normal, then just as she was coming out of my vagina with the camera, she thought she could see something. She took five biopsies and assured me that it was very unlikely to be anything serious. She said that the chances of it being cervical cancer were very small as my smear had come back normal just the year before. And that was it. I went away and had to wait.
I was so anxious, I just know myself and my body, and something wasn’t right. Then at the end of January last year, I got the call from the gynaecologist’s reception ‘Can you come in because the doctor wants to see you? And bring someone with you’. We just knew from then that it was cancer. My parents drove me and my husband down, as we knew it wasn’t going to be good news. She said the biopsies had come back as vaginal cancer. I remember her telling me that she was really shocked as well, and that she honestly didn’t think it was going to be that. We hadn’t even heard of vaginal cancer before, and I only found out about it when I was being told that I had it.
As you can imagine, I had 100 questions at once, how did it happen? Why me? How much was there? What stage?
She told me that vaginal cancer normally grows down from the cervix, but mine had just stayed there. She said that was even more rare, and that I would have to have surgery, chemotherapy and radiotherapy. She told me the Clinical Nurse Specialists would call me on Monday, which they did.
Then after that, we didn’t hear anything for about two weeks. We kept chasing them up and they kept saying that the letter is in the oncologist’s tray but he hasn’t looked at it yet. In the meantime, I had all of the scans I needed, a pelvic MRI and a PET scan. Then we didn’t hear anything back from these scans, they kept reassuring me that I was being discussing in the multi-disciplinary meeting and they would be in touch. It was awful waiting, not knowing what stage I was at.
When they called, they said that my cancer was stage 1 and only in that one place, and that they weren’t quite sure what to do with it. In my next meeting with my gynaecologist, he said he was going to remove the tumour with surgery and that I wouldn’t be able to have any more children. I already have three children and had been sterilised eight years ago, so that all okay with me. He also said that I would be put into an early menopause by damage to the ovaries from the radiotherapy. He told me that chemo and radiotherapy work really well together and that he really wanted me on this treatment plan so that I could go on to live my life.
It is so hard being diagnosed with cancer when you are young, and a parent of young children. I remember picking up my eight year old from football, I was just waiting for him in the car crying, and thinking that I have to pick him up and tell him now.
My operation was due the first week of the first lockdown, and I was anxious it would be postponed. Luckily, it went ahead as planned, we were so fortunate. Before my surgery he said he would need to put a pack in my vagina overnight and leave the wound open. But it turned out that my tumour was so small I only needed three stitches, and the surgery went well.
We were planning to go on holiday but they said I would definitely be in treatment by then and to cancel, and on the 5th of May I started chemo. I was also having radiotherapy Monday to Friday for five weeks. It’s just something you never think you have to go through, it was a very strong chemo and made me feel really sick for five weeks. Then I did start to feel normal again once the treatment died down.
I kept seeing my nurse regularly to check whether the radio had burnt me, which luckily it didn’t.
I did ask my cancer team about sex, I am still young and this was something I was really worried about. When I had the meeting with my doctor at the end of October, he said that I hadn’t lost the elacisticy in my vagina, he remembered where the tumour was and said that all felt fine in the area, which was great.
My scan also showed that I was all clear!
So that is where I am at the moment, I have my appointment on the 7th of April to see how things are, and he will rerun another pelvic MRI in September and we will just hope everything is still going in right the direction.
I would urge anyone reading this to not leave any symptoms they are worried about, everything not normal must get investigated. You never think it is going to be you, but it could be anyone. I am so young to get vaginal cancer, it’s really rare under 40 and I was 38 when I was diagnosed, so it happens. So it is always worth getting checked, just in case.