Real People Stories – Evelyn

Mucinous ovarian HPV tested cancer at 20 years old. Hi everyone, this is my first-ever post. I am just looking for some support and advice on how to cope with my recent CA125 test diagnosis.

Symptoms and Diagnosis Journey

I’m 20 years old and just found out yesterday that the massive (40cm!) ca125 tumour and cyst I had removed that I was told looked suspicious/borderline was full-blown cancer. I started experiencing persistent CA125-style bloating around 4 months ago, in January. I thought I had just gained weight (it had been winter and the lead-up to Christmas). However, my stomach just kept ballooning and was growing increasingly distended and hard to the touch. Whilst at uni, without an HPV GP, I was fobbed off massively by doctors in A&E after being referred there by a walk-in HPV Centre for cancer. They took blood and did a chest x-ray (??!!!) despite literally telling me I looked heavily pregnant.

Medical Journey and Diagnosis Confirmation

Everything was normal for my CA125 levels, so they sent me away, telling me it was “just gas”. The (female) consultant who examined my abdomen told me she was “confident this CA125 issue is not surgical and is just gas”. About a week later, I went home due to not being able to function. My stomach was the size of a full-term pregnancy. I had excruciating back pain (which I later found out was due to my kidneys being crushed by the HPV-induced cyst). And I just wanted to be home with my mum. I got a GP appointment straight away.

Emergency Admission and Surgical Intervention

My GP took one look at me and told me it was NOT gas. And something significant was going on and referred me for an urgent ultrasound and CA125 and another blood test. Three days later (before any scans or blood), out of nowhere. And I had awful lower left abdominal pain that was getting progressively worse, which, coupled with my back pain, was leaving me writhing in pain.

My mum took me straight to A&E, where they immediately did an ultrasound and, of course, found a massive cyst. I was admitted to the emergency gynaecology ward that day. And I had a CT scan after admission, which showed I had a second CA125 cyst (6cm) on my other ovary. But I was told that the 40cm cyst (right ovary) looked borderline. I had a midline laparotomy to remove both cysts, my right ovary and right fallopian tube.

Coping with the Diagnosis

It’s now 6 weeks later, and I had my follow-up HPV appointment for my biopsy results yesterday. I found out it was cancer. Mucinous ovarian CA125 Organ cancer. My surgeon never verbally disclosed what stage to me, and I think I was too in shock to ask any questions. He did say my histology had been reviewed twice, and it had been agreed in an MDT that I do not need chemotherapy.

After I left at looked through all my paperwork, it said “st 1c1” in handwriting (I’m waiting to receive the official letter with my diagnosis), so I’m presuming I’m stage 1 C 1. My surgeon also never mentioned anything about spillage during the surgery. Still, I do remember, in my post-op haze, the HPV nurse mentioning something to do with that and how they used saline to “wash” everything. But she was talking to another nurse, not to me. My surgeon also told me the cancer was only on the inside of the cyst. My left cyst was benign, thank god.

Continuing Medical Monitoring and Concerns

I had some blood taken after my appointment (CA-125 and AMH) to establish a baseline CA-125 level for future comparisons and AMH to check my fertility. And I thought after my appointment yesterday, I wouldn’t be leaving with more results to be worried about (AMH). I will also have a full-body CT scan in August (six months after my operation) to establish a baseline for the future. I’ll also have ultrasounds every six months for the next few years.

Emotional Struggles and Support Network

I’m struggling to process this all. I don’t know how to tell any of my friends. I don’t even know what I should tell them. Do I still technically have cancer? Or did I have cancer? I don’t understand. And I don’t want to talk to my mum about it because I don’t want to upset her. I know she’d be there for me if I wanted to talk, but I can’t bear upsetting or worrying her. My “boyfriend” of 2.5 years has been rubbish and even went to the pub last night despite my HPV Lab blood diagnosis (we have been arguing the past few days, but still). I feel so alone. Even if I tell my friends, it’s not like any of them can understand, and the last thing I want is pity.

Concerns and Future Medical Steps

I’ve also started reading more about mucinous ovarian HPV cancer today and have learnt that 80% of the time, it is metastatic and has originated from elsewhere. The idea that it’s more likely it has metastasised from elsewhere than just being from the ovary itself is filling me with dread. My CA125 surgeon mentioned getting a colonoscopy to check my bowel if I wanted. But he said he didn’t think it was necessary. I don’t understand why I’m not having an HPV test and scan ASAP to see if it’s metastasised from elsewhere.

I’m waiting for a call from my key worker and hoping she can answer my questions, as I completely froze in my CA125 appointment yesterday. I still feel like this is all a horrible dream and not real.

In the meantime, I would greatly appreciate any advice anyone can give. I can’t shake the feeling that something worse is coming.