My name is Samantha-Rose and in February 2023, at the age of 26, I was diagnosed with Stage 1A endometrial cancer. My consultant told me that they rarely see women my age in their clinic, and that their treatment was going to be different to what they’d usually suggest to others in order to, hopefully, preserve my fertility options. I hope that by telling my story, I can help others who are diagnosed young, and who don’t have the usual symptoms for this particular cancer.
My periods had never been regular, but they stopped completely in June 2021 after coming off the contraceptive pill. Before then I had occasional one-day heavy bleeds where I’d frequently bleed through pads, clothes and often onto furniture; I had got used to this and eventually just carried on like nothing was wrong. It was when I started a relationship with my now-fiancé David in November 2022, when I realised that if we wanted children further down the line, I needed to have some investigations.
My first appointment with my GP was nerve-wracking – talking about periods and sexual activity feels so awkward but I knew I had to have that conversation. The doctors were so kind (and they’ve heard it all before!) and after some blood tests I was referred for an ultrasound scan, where they discovered I had polycystic ovaries and a thicker than usual womb lining of nearly 25mm. That’s when the wheels really started rolling. I was put onto the two week cancer referral pathway with my local hospital and received an appointment for a hysteroscopy, so that they could have a closer look at what was going on. When I was called at 25 for my first cervical screening, the nurse was unable to even get the speculum inside, so knowing that they were going to be putting a camera inside of me was petrifying. Luckily the doctors were incredibly understanding and gave me the choice to say no to the camera and biopsy, but I fought through the fear and, actually, it ended up not being very painful at all.
I waited just under three weeks to receive the biopsy results back, and it really, really wasn’t the news I wanted to hear. I actually didn’t believe it initially, that somebody my age could have endometrial cancer with none of the usual symptoms, until I was handed a yellow folder with booklets and forms and more information than I could process. I was asked how I was feeling, and I didn’t have any words; I remember laughing that getting my prescriptions for free was at least one perk, but laughing was the only thing I could do to stop myself from falling apart. David recalls not being able to do any work for the remainder of his shift once I told him the news over the phone, and my dad’s first reaction was to ask if they could get rid of it. At that point, I had no idea, and for at least two weeks I was frightened to sleep alone because my head was so overwhelmed with ‘what if’s’. It felt like every advert I saw on TV or on billboards was for cancer awareness or cancer charities, almost like I was being followed by the news I’d received.
All of the information I was given mentioned women who had been through the menopause, not women my age who hadn’t even had children yet; even trying to find personal stories by women my age online with endometrial cancer were few and far between.
After my initial diagnosis, I had two MRI scans and a CT scan in quick succession to stage the cancer, and I was incredibly fortunate that it was caught early at Stage 1A, Grade 1. The MRI scans also flagged a larger than usual appendix, which ended up being caused by an unrelated low-grade appendiceal mucocele neoplasm, found in less than 0.3% of all appendectomy specimens – frustratingly it seemed at the time that I was becoming very good at ‘collecting’ more uncommon medical conditions!
Biopsies followed every three months – my initial treatment was to have a Mirena coil inserted, which gave my body 20mg of progesterone each day to try and reduce the womb lining and the cancer. It wasn’t as effective as the doctors hoped, so I was moved onto Megace tablets – I’ve taken 160mg each day for just over a year to ‘preserve’ my womb and have since received two clear biopsies. There is still some thickness to my womb lining but it doesn’t contain any cancerous cells, and receiving these more ‘normal’ biopsy results has been such a relief.
Nevertheless, David and I know that it isn’t quite as simple as ‘the cancer’s gone’ – I have more biopsies booked, plus a referral to the fertility team at my local hospital so that we can discuss possible pregnancy options once I receive further biopsy results. I know that a hysterectomy is going to be a ‘when’ rather than an ‘if’, but if we are able to have children naturally, or with the help of IVF, that would make the hardest days of the last 18 months much easier to process. We’ve always known that it may not be possible to have children the natural way, but the more important endpoint has always been that I’m healthy, and luckily that is looking more and more likely each day.
Thanks to the wonderful treatment I received from my local hospital, David and I now have a future to look forward to, including our wedding next year. My one piece of advice to those reading my story is, if you think something isn’t right, please go and speak to your doctors and get checked out, even if you’re embarrassed or scared. I’d also encourage talking – even if it’s to your cat or dog! Nobody can deal with all of the thoughts inside their head alone, and just getting the fears out of your head by saying them out loud can do a world of good.
