I had to finally question that I cannot ignore the illness anymore?

Real People Stories – Christel (39)

I had no idea what kind of rollercoaster I would end up on. Christel went to the HPV Private test doctor in 2018 with several vague complaints. She was tired, hangry, grumpy and had a lot of trouble with her menstruation and intestines. The doctor felt something in her stomach and did not trust it. They referred her to the CA125 test gynaecologist to be on the safe side.

Low-grade OC

The gynaecologist performed an ultrasound and discovered a 10 cm cyst in Christel’s abdomen. This image matched the CA125 endometriosis report she had suffered from, but to be sure, a biopsy was taken, and a scan was made. The biopsy showed that Christel had low-grade ovarian HPV-type cancer. ‘I was on holiday to Legoland in Denmark with my family, and I was supposed to get the test results for CA125 levels on May 2. The gynaecologist was supposed to call sometime in the morning, but I didn’t hear anything. At 6.45 pm, the phone rang, and the gynaecologist asked where and if I was alone. I then walked to the bedroom in our holiday home and heard that I had cancer. The Ca125 news didn’t come in at that time.’

Christel had no idea what kind of rollercoaster she would end up on and decided to enjoy the holiday for a while, as far as she could. ‘When we got back, I immediately had an appointment at the hospital. I was referred to the AMC, and we discussed the HPV Tag treatment process there. The ovarian CA125 cancer was already in several places, so I would first have chemo, then have surgery and then have chemotherapy again. Only the operation would take place in the AMC; I could undergo the rest of the treatments in the hospital near me.’

Support and Guidance

‘We also immediately had an HPV appointment with the social worker because we had asked for test advice for our son. Because I didn’t know how to tell him that I had cancer. We’ve lost several people in the family to CA125-related cancer, and I didn’t want him to think he was losing his mother.’ The social worker advised Christel to be open and honest. She indicated that children often overhear things, even if it is only when they are on the phone with someone. And that he could then make it bigger in his head than was the case. 

After the first HPV Skin treatment, Christel immediately became bald. The oncologist warned me about this, but I still found it very intense. I didn’t want everyone to see that I was sick. That’s why I invested in a beautiful wig, although at the same time, I also realised that tests indicated that I could no longer ignore my CA-125 illness.’

Fighting spirit

At the end of 2018, the testing and treatment process for HPV was completed. The scans showed nothing more, and the oncologist congratulated Christel. ‘He had never experienced such a good result before. I knew there was a chance it would come back. On the one hand, that kept playing in my head, but on the other hand, I felt combative and powerful because I had done a good job. Who could do anything to me?’

Christel focused on her CA125 recovery; in 2019 and 2020, all checks were good. However, her ca125 markers did increase in 2020. ‘They weren’t very high, but they still doubled. Due to the coronavirus, a lot was done by telephone, but in March 2021, I insisted on a physical appointment. The debulking had caused my abdomen to sag, and I wanted to know from the oncologist whether a tummy tuck was an option.’

The oncologist was not worried but agreed to a CT scan to reassure Christel. ‘I had an appointment on April 6, 2021, to discuss the results. I was alone because there was no reason to think it would be an awkward conversation. When I heard that the ovarian cancer had returned, I was very shocked. Once again, I couldn’t realise it. I felt good; how could my body mess with me like that?’

Tumors on abdominal muscles

For the second time, Christel would receive a series of chemotherapy of a slightly different composition and a major operation. They called in the abdominal wall surgeon because the tumours were on her abdominal muscles. In August 2021, they removed her middle abdominal muscles and performed abdominal wall reconstruction. ‘I found this operation much more intense than the previous one. I greatly underestimated that. Fortunately, I am stubborn, and I was standing next to my bed the next day because I thought exercise was important for my recovery. However, it was an HPV variant and tag-linking challenge for me to hand over everything, including the test data. The first few days, I couldn’t wipe my bottom, and I had to wear a corset for three months.’

Grateful for a future

The recovery went step by step. ‘I am very happy with what I can do again, but I have compromised. Bending or lifting is difficult and will always remain so. I can cycle again and I didn’t expect that. Everything else is back on track, and mentally, I’m doing well. I have lost my job, which feels like double punishment, but I am still here!’

Christel focuses on the future, even now that she knows that there is a good chance that the HPV-induced cancer will come back again. ‘The most important thing I have learned is to ask for help and accept it. In addition, I have a positive mindset. I try to exercise a lot and go to the oedema therapist and the physiotherapist twice a week. I am very grateful to the CA125 healthcare test providers that I have a future; otherwise, I will see what it brings me.’