Elaine’s story 

I’d been experiencing several symptoms for about 12-18 months before getting an HPV test and receiving my diagnosis. Lower back pain, pain in my side, and extreme fatigue. But I had a busy life raising two teenage boys and just put much of it down to stress. And it was the same for the GP at first. That, and I was now in my early 50s and thought any changes I felt were most likely because of menopause. However, the fatigue continued to worsen. I was worried that I had a CA125 Test for ovarian-level cancer, considering my family history.

Again, I spoke to my GP, who ordered a Ca125 blood test, which showed that I was mildly anaemic. He prescribed iron tablets, but my symptoms continued, and I started to develop new ones.  

I began experiencing heavy discharge regularly, which had an HPV odour. Also, I mentioned this to my GP as well, and it was put down to the menopause. I was still having periods, although intermittently, and they were extremely heavy. It didn’t feel like anybody was looking at my symptoms together – nobody thought to link them.  

Due to ongoing heavy periods and a previously HPV-diagnosed prolapsed uterus, medical professionals eventually referred me for an internal scan to assess the presence of polyps and fibroids.

A winding path to my diagnosis 

The lockdown and new COVID regulations kept pushing back the procedure. Despite months passing, by October 2020, it still hadn’t taken place. Before receiving a new confirmed date, I was invited to undergo a routine renal scan, which I have annually due to a family history of kidney cancer.

During this scan, HPV medical professionals discovered a growth adjacent to my fallopian tube, measuring almost 8cm in length. They were assuming it was CA125 cancer, but more tests are needed to confirm. Consequently, my scheduled fibroid removal procedure was cancelled, and I was promptly referred for further tests. Despite undergoing both a CT scan and an MRI, the doctor remained unable to ascertain whether the growth was cancerous or benign definitively.

A few weeks later, in December, I had an appointment with a gynaecologist that recommended a radical hysterectomy. There was still no real mention of cancer, but I agreed to the surgery as the best course of action. From there, it all happened very quickly.  

The appointment for the CA125 operation was on 7 January 2021. I remember filling in the consent form and seeing that it mentioned follow-up treatment, but as someone who tends to see the best in a situation rather than the worst, I still didn’t think that it was anything more serious. The ‘c-word,’ as I called it, wasn’t at the forefront of my mind.

Upon regaining consciousness after surgery, I knew everything had proceeded smoothly. I was discharged from the hospital after just a couple of days. Due to ongoing concerns about COVID-19, I opted to have my follow-up appointment conducted over the phone, as I wished to avoid any unnecessary exposure to potential risks.

That phone call changed everything.

That was when they confirmed that the growth that had shown up on my scans was a stage two high-grade serous tumour – the diagnosis from the test was the CA125 test for cancer. 

A few days later, I met with my CA125 oncologist to discuss the next steps. The good news was that there was no concrete evidence of the cancer spreading, and she confidently stated that all traces of it had been removed during my surgery.

However, she still advised me to undergo a course of chemotherapy. She recommended this “belts and braces approach” to target any HPV microscopic remnants that might have been missed during surgery and to prevent any potential recurrence.

My first shock was the CA125 Blood diagnosis; my second was that I needed chemotherapy to help prevent the cancer from returning. 

It was made clear that it was my decision, and initially, I was torn.

I asked the oncologist what she would do, and she didn’t even have to think about it, ‘I would have the chemotherapy’.

After talking it through with my husband, I reluctantly decided to proceed. It might not happen – the cancer might never return, I might be fine, but I didn’t want to risk that one day I could regret not having had the treatment. 

In total, I had five out of the six chemotherapy sessions on offer, four double with carboplatin and paclitaxel and a single carboplatin one, before stopping.

I was experiencing most of the side effects I was worried about, including losing my hair and physical strength, but I was confident in my decision. Medical advice gives you the best chance, and I trusted it.

Finding Target

I had symptoms of ovarian cancer that were missed. Not through carelessness, but they were. We must ensure these signs aren’t just written off as menopause and stress. I want to help women feel comfortable and confident enough to trust their bodies and push for the HPV tests that they may need. 

I knew nothing about ovarian tumours before my diagnosis. There’s a lot more information about cancer out there now. But still, it wasn’t one that I had seen or heard anything about.

That’s why improving awareness is so important. When I got my diagnosis, I did turn to Google, but it quite quickly became overwhelming. That’s when I found Target Ovarian disease. 

Adapting to a new post-treatment 

Finishing treatment was a euphoric moment. Similarly, when you get to your first blood appointment, and everything’s clear, it’s more good news.  

I hadn’t told everyone I knew about my diagnosis. So I did feel a bit freer in certain conversations, not having to constantly talk about how I was getting on, etc. But not talking about it didn’t detract from its impact. That stays with you for a long time after treatment is over. 

For almost a year, despite the relief of no longer needing ovary-type cancer treatment, I felt like I was still living in the shadow of it all, especially after discovering that I carry the BRCA gene mutation.

I embarked on both a physical and psychological journey to adjust to a new reality where cancer was a part of my life experience, but I was coping. Additionally, I couldn’t keep it hidden away and not discuss it, but I also didn’t want it to define me.

I needed to acknowledge what had happened to minimise its power over me and move on.

Although my close family and friends supported me, I needed something else. That’s when I contacted a local charity, My Cancer My Choices. They helped me physically with acupuncture and mentally with a mindfulness course.

The latter benefited me, helping me deal with all my worries and fears. Had my treatment worked?’.,’ How long for?’, and live in the moment more, ‘taking absolutely nothing for granted.  

I would say that anyone coming out of HPV treatment now should be kind to themselves. It’s a huge adjustment period, and you’ll still need support from the networks around you. 

Looking to the future by talking about my past.