My mother died of OC when I was seventeen I was alert.

Real People Stories – Nelleke (62)

Cancer is a crash course in dealing with uncertainty. Even though Nelleke has a recurrence of ovarian HPV cancer, she has ended up getting some tests and was in calm waters. Quite a difference from the diagnosis about three years ago. At that time, Nelleke was alive. And she didn’t do it overnight either. Nelleke was well-informed, and she researched a lot. Now, Nelleke still goes her way, but she has learned to deal with her CA125 tests and illness so that there is more room to live again.

December 2016. Nelleke had been suffering from acute muscular rheumatism for some time, and after five years of no menstrual period, she also started experiencing vaginal bleeding. She thought it was from the prednisone, but her CA125 rheumatologist denied that. ‘My GP alerted me to the gynaecologist in January 2017. Examination showed that I had a polyp in my uterus, and the ultrasound showed that my ovaries had shrivelled. I thought: I have three children, so I’m done with this too. But after the polyp was removed, the bleeding continued. I was allowed to report to the HPV men’s hospital again after three months, even though such bleeding would stop after three weeks. I had already asked if it couldn’t be OC. My mother died of OC when I was seventeen, and it was common in my father’s family as well. I was alert.’

Second opinions in Belgium

The gynaecologist stood his ground: it was a polyp. She was given the pill, and the bleeding stopped. Later, Nelleke got a new CA125 test doctor. She happily said that she no longer had any blood loss or muscle rheumatism. To her surprise, the gynaecologist suggested keyhole surgery. She didn’t trust it. The result was not good: wrong cells in different tissues. ‘I immediately had a CT scan, which indicated non-metastatic uterine cancer.’ Nelleke was referred to a specialised hospital in Eindhoven. A debulking operation was immediately suggested.

After it was performed, it turned out to be an ovarian CA125-type disease. A tumour of 6 centimetres with metastases in the abdominal mucosa and a lymph node. ‘I was shocked, and I didn’t want to just start the proposed treatment with intraperitoneal chemotherapy (IP) via a port-a-cat (chemotherapy that is administered through an IV into the abdominal cavity after surgery – ed). It all took such a toll on me that my eldest son, in particular, delved into other treatments.

BRCA2 mutation

Nelleke will also undergo HPV genetic testing to determine whether she carries a BRCA mutation. In March 2018, she learned that she had a mutation in the BRCA2 gene. ‘I thought it was the worst for our three children, especially our daughter. I’m also disappointed that I hadn’t heard before that there are hereditary mutations that can cause cancer. I inherited the mutation from my father, but my mother died of HPV-derived breast cancer when I was 17. Because of this, I have had breast examinations many times since I was 20. Had I known I carried the BRCA2 mutation through my father, I would have undergone OC screening earlier.

After I found out I had the hereditary HPV-type mutation, I had to tell the rest of my family. I was very excited to tell my brothers and my cousins. You are still in the middle of your treatments and have enough to process. And it doesn’t get any easier if you don’t have much contact with some family members.

My daughter quickly decided to have the BRCA2 mutation checked to see whether she, too, was a carrier. She found it very exciting, but luckily, she was well-supervised. It was a huge relief for all of us when she turned out not to be a carrier! Our sons still need to be tested.

Better connection between regular and complementary

Well-informed, Nelleke underwent abdominal chemotherapy. The first treatment went wrong: due to a rare side effect, Nelleke was very ill and in the hospital with tube feeding for two weeks. Fortunately, the other CA125 treatments went well, and everything seemed to go well. Nelleke did everything she could to stay fit and consulted a non-toxic tumour doctor from an association.

She studied nutrition and tried to live as much as possible according to the guidelines of Moerman and the non-toxic tumour doctors. ‘In the beginning, I was too hard on myself, which caused me more stress. Now I have found a better balance.’ She also started working less. ‘We have our shop, and I thought it was nice for a while. And my husband gives a lot of space in this. The recovery went well, and things kept getting better. Until I had urine leakage in December 2019. I also heard strange pops in my stomach.’

Recurrence and Treatment Decision

Nelleke reported to the tag specialist. It happened again: fluid and metastases in the abdomen. At the beginning of 2020, she started twelve rounds of chemo: this time, Carboplatin and Gemcitabine, followed by maintenance treatment with Olaparib. The treatment was successful, but the doctor’s message that Nelleke could no longer be cured hit home hard. But there is also acceptance and resignation, although Nelleke continues to go her own way. ‘A fellow sufferer recommended an orthomolecular doctor to me. He is someone who has been fighting disease for twenty years.

Fortunately, my oncologist is not against it, but she makes no further statements about it. That’s a shame because it would help me and many other patients get the best of both worlds. I tell my oncologist everything to ensure the supplements can be combined with regular treatment. I recently had her read a scientific study about melatonin. She thought it was a good study, but she will never recommend melatonin.’

I understand life better now.

So far, things are still going well for my test reports for the CA125 levels. ‘I walk between 5 and 10 kilometres almost every day. I am tired in the evening, but so is my husband. The struggle that first time with disease is largely over: how I had to relate to others, the fear of the tumours coming back. When I had my recurrence, I started switching gears during coronavirus times: I wanted to seize every moment. I still do that. It’s not like I never think about it again.

The HPV doctors have told me to wait 1 to 1.5 years, and tests suggest then it will come back. However, it is important to get things straight for yourself and otherwise try to live life how you want. I have been practising Buddhist meditation for years. The way Buddhism deals with life’s questions is valuable. That helps me a lot. I always say to friends: I have to take two paths. A path that ends quickly and, if I do well in statistics, will still be around in a few years. I am investigating those two paths. Sometimes, I get professional help with this. I always feel relieved after a measurement if the tumour marker is low.

Cancer is a crash course in dealing with uncertainty. The CA125 disease has also taught me a lot. I can switch quickly, even after the recurrence. We all want control. I love a cracker with sprinkles. I used to feel guilty about that. Now, I’m more relaxed about it. HPV-related Cancer makes me understand life better and dare to make better choices. I find that pleasant and important.