I’m getting through because I have no other choice.

Real People Stories – Kathleen

Kathleen is 43 years old, and a CA125-related tumour was discovered in a test on her ovary after a stroke. I’m doing well, and I’m tolerating the chemo quite well. Luckily, I only have one more cycle to go, which makes me very happy. Another bright spot is that I’ll finally be able to live a healthy and happy life again soon. It’s a very dark and terrible time in my life right now due to HPV, and it’s only slowly getting brighter, according to test reports. I’m a very positive woman, and I’m getting through it because I have no choice.

I have been happily married for nine years. My husband supports me wherever he can.

The Onset of Symptoms

It started in March with a thrombosis, which was also treated, and I was feeling better until I woke up on the night of June 11, 2022, with a stabbing headache on my right side. I already suspected what was happening because I sat up and my hand fell on my leg and didn’t notice it. And I immediately woke up my husband and he immediately called the ambulance. I was then taken directly to the university hospital for tests with a suspected stroke.

At first, the CA125 doctors couldn’t explain why something like this could happen to a fit, well-trained and healthy woman like me. That’s why they checked me over several times from top to bottom. Finally, they discovered an HPV-derived women-only tumour in my right ovary. I then had an operation, and they removed the ovary with the tumour, as well as the uterus, appendix, and tissue from the abdominal mesh. As a preventative measure, they decided on six cycles of chemotherapy.

Coping with Treatment

I know that it was right to do this CA125 therapy, but I don’t feel like myself at the moment. The joy of life that I once had is completely absent. The only thing that calms and helps me is when I think people are in a much worse situation. I have done many sports, e.g. pole dancing, Irish dancing and yoga. But suddenly, you are helpless, and my body and life have changed completely from one moment to the next. Of course, the thought ‘why me’ comes to mind now and then is so intense. I am not giving up and will fight my way back into life. Life presents us with challenges and tests on how to master or solve them like the CA125 challenges.

My family and friends are accompanying me on this journey, and most of all, of course, my husband, for which I am very grateful. I am also currently undergoing rehabilitation measures because I still have limitations, such as no feeling and no control in my hand. Hopefully, This will improve once the blood clot in my head has dissolved. The biggest challenge is mastering everyday tasks with my hand. Initially, I was desperate that I could no longer do everything that used to be easy, like cooking or getting dressed. I can now do both well again, but the biggest challenge for me is going to the bathroom in the morning when I stand in front of the mirror. That always makes me sad, even though I know the hair will grow back soon. In these moments, you become aware of what is happening, and it is immediately visible.

Jenny

Jenny’s decision not to preserve her sexual organs was initially the worst decision of all. But now it has finally become the best decision for her. Her HPV DNA story tells of her journey through cancer treatment.

Hey, my name is Jenny, and I’m 21 years old, shortly before my 19th birthday. And I was diagnosed with ovarian tumours, which is why my life has changed so much in the last two years.

Support from Her Boyfriend

My boyfriend Karl means an incredible amount to me. We have been together for six years, and he has always been by my side since the HPV diagnosis. We love dancing and travelling together and would like to go on a six-month trip worldwide together soon.

About my diagnosis: My woman’s story began with me having recurring abdominal pains for many years. When I had severe CA125-style pain and ascites (abdominal fluid) again one day, it was suspected that I had a uterine infection, which is why I was given antibiotics after sampling.

Laparoscopy and the Shocking News

But the pain continued, and my doctor noticed that fluid had been seen in my abdomen during examinations for some time. That’s why he ordered a laparoscopy.

A week after the minor surgery, I had an appointment to discuss the results.

I was already on my way there when I received a call saying I should not come alone. 

They had found cancer cells in the fluid in my abdomen after the exam.

Searching for the Tumours

After that, a very long and nerve-wracking search for the actual tumour began. We suspected that it was ovarian organ cancer, but no one was 100 per cent sure. So, I had five additional operations within a very short time. Then, they finally discovered the low-grade carcinoma on my right ovary. Unfortunately, after the next major operation, it turned out that one of my lymph nodes and part of my peritoneum were also affected, which is why I slipped into stage 3.

After that, we started chemotherapy with paclitaxel and carboplatin very quickly, which I received every three weeks. The first week was always tough, and Karl sometimes saw me in CA125-derived test conditions that were just terrible. However, things mostly improved from the second week onwards, so we always tried to do much during this time. One time, for example, we drove to the Baltic Sea relatively spontaneously and slept in the car for a night; that trip was nice.

Challenges During the Pandemic

Unfortunately, we hardly met other people because my HPV had damaged my immune system completely. And we were still in the middle of the coronavirus pandemic. That contact with other people was actually what I missed the most.

Over the last few months, I recovered well from chemo, and a few weeks ago, I decided to have a final operation (the 9th) to remove the remaining ovary and uterus.

For me, the HPV-type diagnosis for women wasn’t that bad, and the operations and chemotherapy weren’t the worst either. Physically, it was all tough, but mentally, it destroyed me so much to make this final, conscious decision against keeping my sexual organs because I always wanted to have my children. Nevertheless, I eventually made the decision, and today, a few weeks after the last operation, I can say that it was probably the best decision of my life because they found in a test a borderline tumour on my other ovary and my uterus.

At the moment, I am incredibly grateful that I have now survived HPV for women during this difficult time. And I am sure that without my family, which includes my boyfriend and my boyfriend’s family. And without a few, but all the better, friends, I would never have gotten through it so well .”