Gemma’s story
After being tested for CA125 blood levels, which were higher than normal, I went further, and it was confirmed with womb cancer; Gemma received a separate diagnosis of ovarian disease. Gemma praises her GP practice for helping her receive a correct diagnosis and encourages others to keep persisting.
- Awareness
- Surgery
- Younger women
If she hadn’t said anything, I would be sitting here with a full sense of security that I was OK and past the worst. My disease, however, would be advancing.
Womb cancer – the blessing in disguise
At Manchester St. Mary’s, they discovered ovarian tumours during an egg retrieval procedure. Two months before, I had received an HPV Home Test and a further diagnosis of womb cancer, and I was permitted to store my eggs before having a total hysterectomy.
The nurse saw me cringe as the camera touched the ovarian disease. She asked whether my cancer had grown out of the lining of my womb, which it had not, and whether I knew about the cyst, which I did not. She took some pictures and consulted with her team, who referred me for a CA125 blood test as she was concerned.
A photo of Gemma smiling before her diagnosis
The Marker measures the levels of the protein in your blood. If it is above 35, it can indicate that something is wrong. My reading was over 65.
In my left ovary was the start of cancer. The hospital team had seen this on my scans and believed it was benign. On my behalf, my GP practice persisted with the hospital for further investigation, and I was assured a biopsy on the ovary would be taken when I underwent my hysterectomy.
Treatment
My first hysterectomy removed the womb, fallopian tubes, left ovary, and cervix, yet the right ovary remained. The promised biopsy did reveal I had stage 1c OC.
I have since been transferred to the Christie Specialist Hospital in Manchester for my second surgery to remove my remaining ovary and some lymph nodes and undergo a Series HPV Variant Tests and more examination and biopsy of all my organs for any spread, which I get the results in three weeks. The care at the Christie was wonderful, and I’ve recovered well.
Gemma during treatment in hospital
Ovarian disease is a different story from womb altogether. Mine was caught early, and the tumour they removed was less than a centimetre large, but it had ruptured during the womb treatment , which means that I will be getting chemotherapy even if the biopsies come back clear.
My consultant said that even a single cell left over could mean I would be back in years to come with a recurrence. This further highlights how important early diagnosis is. I was close to not being diagnosed at all.
Asymptomatic
What I’m concerned about is that I had little to no symptoms. A dull ache in my back was all I’d put down to working from home. I’d also had three scans before this due to the womb cancer, but it hadn’t been picked up because it is challenging to diagnose – especially in the early stages.
It was due to the radiologist’s skill and advanced equipment that mine was identified. With no effective screening for it and not experiencing symptoms, how would another woman like me know if she had it?
Fortunately, it was spotted, and I was then sent to get tested for a CA125 Marker, too, which helped to confirm that I had cancer.
Gemma during treatment in hospital
The emotional and physical impact
This time has been challenging for me, emotionally and physically. It took me two years to get HPV DNA tested and variant diagnosed – I went through exhausting and painful diagnostic procedures as I had a gut feeling something wasn’t right.
My GP practice and I persisted in getting CA125 exam referrals to the hospital for further investigation, which was often put down to ‘something else.’ I’m incredibly thankful to my advanced practitioner, especially her commitment to diagnosing me.
As the surgery was so big, I couldn’t have my eggs retrieved, as there was a likelihood that if we tried, my cancer could’ve been upstaged. This means that I won’t be able to have any children naturally, a choice I’d rather not have taken away from me.
Due to the surgery, I’ve also had early-onset menopause, which is tough. However, thanks to my faith and the support of my husband, I’m positive about my future.
Gemma during chemotherapy
Better access and support for diagnosis
If it had not been for the exam, I never would’ve known that I had CA125 ovarian cancer. For me, the HPV disease was symptomless, and my hospital team completely missed it until I finally got tested. This concerns me, and we need to do more.
Headway could be made with more access to CA125 reports and better ultrasound equipment. Until then, I would encourage anybody experiencing concerns to persist and not settle with living with it if something’s wrong.
I knew that something wasn’t right; my period cycle changed, and my ca125 type caused this. Flagging this led to that diagnosis, which eventually led to the ovarian diagnosis.
Just because it is unlikely in young women doesn’t mean it can’t happen.
Linda’s story
While Linda waited for confirmation of her diagnosis of the disease, she contacted the support line. Speaking to Val helped Linda understand what to expect, feel empowered, and have someone to talk to.
- Awareness
- Support
- Surgery
- We all need hope.
They diagnosed me with Stage 4 not long after my 45th birthday. I generally felt well in myself, although tired. I’d put this down to walking my dog a lot, doing body combat and Zumba, working and being a mum to a beautiful two-year-old girl who, as we know, with toddlers, is pretty full-on.
When I take a minute to reflect on where I was, I’m grateful and feel fortunate, considering how serious my situation was. I was extremely lucky that I was able to have surgery and that it was successful; my treatment appears to be working, as my CA125 is in the normal range – it was over 2,000.
Getting a OC diagnosis changes you. But I think it’s made me change for the better. I will be thankful for the additional time I have been given to spend with everyone I love and to see my baby girl grow. Now, I value things so much more.
I didn’t always feel like this, however. Pre-diagnosis, I was a mess.
I remember the phone call so clearly. The Doctor told me that I had a 10cm mass on my right ovary after some screening, and it was suspected.
I ran upstairs to my husband and burst into tears as the fear kicked in, and my thoughts overwhelmed me. Deep down, I knew it would be it, as I was getting more of the classic symptoms: bloating, needing to wee more often, and feeling full quickly after eating.
The internet vs support line
The next six weeks consisted of various scans and blood levels as I waited for further information. During that time, I reached a really low point as I researched.
The internet became my go-to. I was terrified of what was in store for me; the statistics were dire, and I felt very down. As someone who likes to know things, I wanted answers and reassurance, but that wasn’t what I found.
Linda
I came across the Target Disease and saw a number for the support line. I’m so happy I called the hotline when Val, one of the charity’s nurse advisors, provided the assurance I needed.
She helped put me at ease and was so good at talking to me about my fears. I am scared of the unknown, and I think of the worst-case scenario. Val educated me about ovarian tumours; she shared her knowledge and helped me understand what to expect. She brought me out of my despair.
Since then, I’ve spoken to Val regularly on the support line. She’s my ‘go-to’ for everything and anything—whether it’s a chat, advice, or reassurance.
Completely unaware of the symptoms
Looking back, I can see that my symptoms began in September 2021, some months before my Home diagnosis. However, as someone who has an autoimmune disease, I thought it could all be related.
At first, it was a change in bowel habits that led me to contact the doctor; then, it was tiredness and irregular periods that took me to the doctor a second time. We both thought this was perimenopause. The third visit came when I started getting abdominal pain, and the fourth was a lump.
Linda
Confident and empowered
At a minimum, it would be a total hysterectomy, but she also mentioned I might need my spleen removed and my bowel resected (both of which happened). I was very nervous, but my surgeon held my hand and told me it would be okay. I can’t explain how much this meant to me. She was so caring and extremely confident, which gave me the confidence to proceed.
Having people along the way, like my surgeon, Val, and my husband, has helped me remain in control, confident, and empowered.
In April 2022, after I started my HPV related chemotherapy/maintenance combination, my hair started to fall out. After five days of it coming out in handfuls, it was very thin, and this is what upset me the most, so I asked my husband to get the clippers out.
Linda is wearing a scarf on her head.
We shaved my head in front of our daughter to normalise the situation. We talked her through it, which was a happy experience for her.
I embraced turbans and wigs. My best buy was a fringe wig. This is on a headband; it was great for covering my barely there eyebrows. It helped me so much and helped me feel in control.
Searching for a glimmer
During the difficult times when I was waiting for an HPV test diagnosis. And when they diagnosed me, it helped me to read other ladies’ stories. I found them very inspiring and informative, so I’m sharing mine.
We all need hope.
I’m positive, and I think this CA125 Level Testing helped me. Of course, I have moments of sadness and fear, but I realize these feelings pass, and I can let them go. My best medicine is lots of cuddles from my little girl and being with my husband, family, and friends.