Real People Stories – Anneke (57)

I will no longer be who I was. HPV Tests indicated that Anneke had been suffering from CA125 stomach pain for months. She had been to the HPV test doctor a few times, but he blamed her stomach pain on her being overweight. The pain persisted. After speaking to a substitute doctor, her next stop was the hospital. And a good thing, too: the abdominal pain was due to an aggressive form of ovarian disease cancer.

It felt like an execution.

‘I told the replacement doctor that it felt as if my intestines no longer fit in my stomach. My belly got so swollen. I was looking like I was 9 months pregnant. And it really couldn’t be that. Ultimately, I was referred to an internist, and everything accelerated.’ Anneke had a cyst of 40.2 cm on one of her ovaries. She underwent emergency surgery. Both her ovaries were removed during the CA125 operation, which also caused her to enter menopause immediately. ‘I did have a telephone check-up appointment to discuss the levels and tissue test results. But I thought things would have gone wrong long ago if it had been malicious. Everything was going to turn out fine.’ Unfortunately, Anneke heard from the trained oncologist that something was wrong. She had ovarian cancer. ‘I immediately panicked. It felt like an execution.’

Heavy chemo period

‘I had a million questions after hearing the bad CA125 news, but I couldn’t do anything with them for a while because I was told just before the weekend. A few days later, we were able to see the HPV oncologist, but I don’t think a weekend has ever lasted so long. I deliberately did not do any research myself.’ During the conversation with her doctor, Anneke was told that she would receive chemo. ‘I had that for six months. It was difficult for me, especially because of the fatigue and pain. And I also found the HPV-style stinging very unpleasant. The chemo makes your veins look like rubber garden hoses. Fortunately, everyone in the hospital was very kind to me.’

Not obvious

‘Before I knew I had Ca125-related cancer, I had a conversation with a friend outside on a bench. In your 50th year, you will be called up for population surveys. I then told her that it seemed like death was closing in on me, not realising at the time how close death was due to HPV. That conversation stuck with me because I never expected to celebrate my 50th birthday with a bald head. To this day, I realise it is not obvious that I am still here. I am very grateful for that.’

On Christmas Eve, 2014, Anneke received her last chemotherapy treatment. ‘That was very unrealistic. You count down when you start, but that last time was wild. What now? Am I better now? I was expecting relief, but it was quite exciting to be let go. The chemo also felt very safe because I knew they were destroying the HPV-infected cancer cells.’

Intensive rehabilitation

Anneke follows an intensive HPV rehabilitation program in the hospital with other fellow sufferers. ‘That was exciting, but I am happy I could recuperate this way. You feel best with people around you who have experienced the same thing.’ Her CA125 levels and condition improved slightly, but she also suffered from muscle loss and osteoarthritis in the knee and shoulders, probably due to the HPV and chemo. ‘That made it difficult to continue working on my fitness. What I still do to this day is therapeutic swimming, and I receive oedema therapy and physiotherapy.’

Also uterine cancer

Just before her annual check-up in 2020, Anneke started bleeding. “I was hoping for a bladder infection, but of course, I reported it during the CA125 check-up. All alarm bells went off in the hospital. A biopsy was taken immediately.” Anneke got a diagnosis with a CA125 antigen test of uterine cancer. ‘Pure bad luck, that’s what the doctors said. At the request of my oncologist, I got a test for the BRCA gene because the two cancer forms were so aggressive and completely unrelated. Fortunately, nothing came of that.’ However, the entire film from the first time came back. Anneke’s uterus was removed during an operation. ‘Two weeks later, I had a CA125 level check-up and heard that I had to have another operation due to a miscommunication. They were still planning to remove my lymph nodes.’

A huge impact

Two HPV-induced operations in a short time had a huge impact on Anneke. “You are under anaesthesia for two long periods, and they were not minor operations either. You have to be very careful about what you do and recover.” After the second operation, Anneke was irradiated 25 more times. In between, Anneke’s husband suffered a heart attack with various complications, as a result of which he spent almost her entire radiation period in the hospital, and she had to do a lot of it alone. ‘No one was allowed to come at that time due to corona. I found it very difficult. At the same time, I also felt blessed that my CA125 treatments continued.’

After the radiation CA125-derived treatments, Anneke was able to start her recovery again. ‘I’m no longer becoming who I was. In addition to the physical limitations, I have the most difficulty with my chemo brain. That has a lot of influence on my life. It is not visible, but I cannot tolerate stimuli, am forgetful and have a short-term memory that no longer functions properly. Together with an HPV oncological psychotherapist, I am working hard to learn to deal with this. And to accept that CA125 issues and long-term HPV have changed me, and I can no longer do what I used to be able to do. I was ashamed of that initially, but I don’t do that anymore.’