After my CA125 blood test showed higher than normal levels, I had more tests and was diagnosed with womb cancer. Gemma, on the other hand, was diagnosed with ovarian disease.
- Awareness
- Surgery
- Younger women
If she hadn’t spoken up, I would still think I was fine and that everything was behind me. But my illness would have kept getting worse.
Womb cancer – the blessing in disguise
At Manchester St. Mary’s, doctors found ovarian tumours during an egg retrieval. Two months earlier, I had an HPV Home Test and was diagnosed with womb cancer. I was allowed to store my eggs before having a total hysterectomy.
The nurse noticed I flinched when the camera touched the area with ovarian disease. She asked if my cancer had spread beyond the womb lining, which it hadn’t, and if I knew about the cyst, which I didn’t. She took some pictures, spoke with her team, and referred me for a CA125 blood test because she was concerned.
A photo of Gemma smiling before her diagnosis
The CA125 marker measures the protein level in your blood. If it’s above 35, it can mean something is wrong. My result was over 65.
Cancer had started in my left ovary. The hospital team saw it on my scans but thought it was benign. My GP kept pushing for more tests, and I was told they would do a biopsy on the ovary during my hysterectomy.
Treatment
My first hysterectomy During my first hysterectomy, they removed my womb, fallopian tubes, left ovary, and cervix, but my right ovary was left. The biopsy showed I had stage 1c ovarian cancer. I was 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 of HPV Variant Tests and more examination and biopsy of all my organs for any spread, which I will get the results in three weeks. The care at the Christie was wonderful, and I’ve recovered well.
Gemma during treatment in the hospital
Ovarian disease is very different from womb cancer. Mine was found early, and the tumour they removed was less than a centimetre, but it ruptured during my womb treatment. Because of this, I’ll need chemotherapy even if the biopsies are clear.
My consultant explained that even one leftover cell could cause the cancer to come back in the future. This shows how important early diagnosis is. I almost wasn’t diagnosed at all.
Asymptomatic
What worries me is that I had almost no symptoms. I only had a dull backache, which I thought was from working at home. I’d already had three scans for womb cancer, but nothing was found because it’s hard to diagnose, especially early on.
My cancer was found thanks to the radiologist’s skill and good equipment. Since there’s no good screening and I had no symptoms, I wonder how another woman like me would ever know she had it.
Luckily, it was found, and I was sent for a CA125 test, which helped confirm I had cancer.
Gemma during treatment in the hospital
The emotional and physical impact
This has been a tough time for me, both emotionally and physically. It took two years to get my HPV DNA tested and the variant diagnosed. I went through many exhausting and painful tests because I just felt something wasn’t right.
My GP and I kept pushing for CA125 test referrals to the hospital, even though my symptoms were often blamed on something else. I’m so grateful to my advanced practitioner for her dedication to finding out what was wrong.
Because the surgery was so major, I couldn’t have my eggs retrieved. If we had tried, my cancer might have gotten worse. This means I can’t have children naturally, which is a choice I wish I still had.
Due to the surgery, I’ve also had eThe surgery also caused early menopause, which has been hard. But with my faith and my husband’s support, I feel hopeful about the future.er access and support for diagnosis.
If I hadn’t had the test, I never would have known I had CA125 ovarian cancer. I had no symptoms from the HPV disease, and my hospital team missed it until I was finally tested. This worries me, and I think we need to do more.
We could make progress by improving access to CA125 tests and upgrading ultrasound equipment. Until then, I encourage anyone with concerns to keep pushing for answers and not ignore it if something feels wrong.
I knew something was off because my periods changed, and my CA125 levels were the reason. Noticing this led to my diagnosis, which then led to finding the ovarian cancer.
Even though it’s rare in young women, it can still happen.
Linda’s story
After her diagnosis, she called the support line. Talking to Val helped Linda know what to expect, feel stronger, and have someone to talk to.
- Awareness
- Support
- Surgery
- We all need hope.
I was diagnosed with Stage 4 cancer not long after my 45th birthday. I mostly felt fine, just tired. I thought it was from walking my dog, doing body combat and Zumba, working, and being a mum to a lively two-year-old girl.
When I l,ook back, I feel grateful and lucky, given how serious things were. I was very fortunate to have surgery, and it worked. My treatment seems to be helping, and my CA125 is now normal—it used to be over 2,000. An 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.
But I didn’t always feel this way. Before my diagnosis, I was a mess.
I remember the phone call so clearly. The doctor told me I had a 10cm mass on my right ovary after some tests, and it was suspected to be a fear took over, and my thoughts raced. Deep down, I knew it was cancer because I had more classic symptoms: bloating, needing to pee more often, and feeling full quickly after eating.
The internet vs the support line
The next six weeks were filled with scans and blood tests while I waited for answers. During that time, I hit a really low point as I searched for information.
The internet became my go-to. I didn’t find either.
Linda
I found the Target Disease website and saw the support line number. I’m so glad I called, because Val, one of the charity’s nurse advisors, gave me the reassurance I needed.
She helped calm me down and was great at talking through my fears. I’m scared of the unknown and often imagine the worst. Val taught me about ovarian tumours and pulled me out of my despair.
Once, I spoke 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.
First, a change in my bowel habits made me see the doctor. Then, tiredness and irregular periods took me back a second time. We both thought it was perimenopause. On my third visit, I had abdominal pain, and by the fourth, I found a lump.
Linda
Confident and empowered
At the very least, I would need a total hysterectomy, but my surgeon also said I might need my spleen removed and my bowel resected, which both happened. I was very nervous, but my surgeon held my hand and told me it would be okay. That meant so much to me. She was so caring and confident, and that gave me the strength to go ahead.
Having people like my surgeon, Val, and my husband by my side has helped me feel in control, confident, and empowered.
In April 2022, after I starteIn April 2022, after I started my HPV-related chemotherapy and maintenance treatment, my hair began to fall out. After five days of losing handfuls, it was very thin. This upset me the most, so I asked my husband to get the clippers.in her head.
We shaved my head in a front of our daughters 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. I started wearing turbans and wigs. My best purchase was a fringe wig on a headband—it was perfect for covering my thin eyebrows. It really helped me feel more in control.s when I was waiting for an HPV 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 stay positive, and I believe the CA125 testing helped me. Of course, I still have moments of sadness and fear, but I know these feelings pass. The best medicine for me is cuddles from my little girl and spending time with my husband, family, and friends.
TSH
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