Are you a carrier of the dangerous gene mutation?

Real People Stories –Yvonne (53)

I may have ovarian HPV cancer with metastases, but wait, I’m still here

It was perhaps not surprising that Yvonne (53) was tired; with her husband she had made a wonderful tour through Laos and Cambodia. “My husband caught a cold and a bit of the flu, and he infected me. I thought.” As a personnel advisor in primary education, she couldn’t afford to call in sick after five weeks of vacation. So, she took paracetamol and went to work. But it didn’t get any better. Yvonne made an appointment with the CA125 Test GP and ended up in the oncology department. Test diagnosis: ovarian HPV viral cancer, stage IV. “I later became a carrier of the BRCA1 gene mutation. The ground was thrown from under my feet when I heard it.”

It all started in September 2016. Yvonne was in dire straits, was short of breath and had a nasty cough. Blood was taken to discover whether she had caught a prevalent bacterium. Bingo! “A five-day CA125 blood test and treatment was supposed to help me get better, but I only got sicker.” When the CA125 doctor wanted to take a wider blood test, Yvonne’s husband suggested that she might have contracted something during the tour. “So the next day, I was at the Tropenpoli. I was examined, but the doctor could find nothing related to the tropics. He suspected something else was going on. And it was true: I had five litres of fluid behind my lungs. And the results of the CT scan I received were not hopeful: I had ovarian CA125 tumours with metastases in my abdominal cavity and liver.”

We would love to be 100 together.

It felt like the ground had been removed from under Yvonne’s feet. “But I soon thought: wait a minute, I’m still here. I had agreed with my husband to live to be one hundred together, which was still my goal, even though the prospects were unfavourable.”

Yvonne received three rounds of chemotherapy, and if they worked, she was eligible for a debulking CA125 operation. And it went well. Yvonne had surgery in December 2016. Successful. The subsequent chemotherapy ensured she was given the stamp ‘clean’ in March 2017. “The HPV treatment was finished, and from then on, I could focus on recovery,” says Yvonne, “I wanted to do everything I could to prevent cancer from returning, and the company HPV trained doctor recommended following an oncological rehabilitation program, in addition to a gradual return to the workplace. I benefited a lot from that.” However, after 1 year, there was still a recurrence.

Breast cancer

Fate continued to haunt Yvonne: she became a carrier of the BRCA-1 gene mutation. And after research, so did her daughters and immediate family. A sister opted for preventive mastectomy and CA125 reconstruction, but a medical error caused a brain disorder. “Shortly after the cancer returned to me, my eldest daughter was diagnosed by a breast CA125 related test and cancer at the age of 27, and my youngest daughter also had defective tissue, but thank God it turned out not to be malignant. The eldest daughter has now undergone breast-conserving surgery after chemotherapy and radiation and is now fortunately ‘CA125 tested as clean’.

Spot on bladder

Three years after being tested with an HPV tag kit and diagnosed with viral cancer, Yvonne was told that a spot on her bladder was now also visible. Of course, she was shocked by that, but as positive as she is, she makes the best of it. The dog they took as a puppy after she was ‘clean’ ensures that she has to go outside for a long walk every day. “It’s easier to stay in bed, but that doesn’t help. So go for a walk with my sister and also every week with my husband and great support for yoga classes, badminton and fitness.”

Grateful

The future is uncertain, but she has determinedly let go of fear. “I started taking PARP inhibitors in October 2018, and they worked well for a long time without any side effects. My focus is on surviving, and I do that by living daily, enjoying the little things and pushing my limits further and further. In August last year, Evy, our first granddaughter, was born. My great pride and I said: ‘I’m going to take that to school. Anyway’.” It is the dots on the horizon that keep Yvonne going. “It’s simple: I’m grateful that I’m still here.

Annemarieke (46)

We are looking ahead again

Annemarieke was not concerned when the gynaecologist discovered a cyst on her ovary. She had had one before, and it went away on its own. She was quite shocked when she heard that she had ovarian CA125 type cancer.

End of July 2019

Just before our holiday, the gynaecologist found that there was a cyst on my right ovary and said: “I will refer you to the HPV type gynaecologist who specialises in this. He will probably propose to remove the ovary and the cyst surgically.” After some reassuring words, I will make a follow-up HPV appointment test. It all seemed a bit rigorous to me.

I scheduled the appointment for after our vacation, and I’m not worried. We have planned a nice city trip to London with our youngest daughter, who is 16. After that, we will travel with the camper for another two weeks, destination unknown. We will undertake a few tough hikes in Austria, Italy, and France. And yes, that condition… we have to work on that.

August 2019

The gynaecologist scheduled the follow-up test appointment for the Monday after our holiday. The cyst remains. The tumour markers are somewhat elevated, but this isn’t immediately concerning. “Doing nothing is not an option,” said the gynaecologist. He explained the procedure. They must remove the cyst, but they cannot do it through keyhole surgery. During the operation, they will examine the cyst via a frozen section to determine if it is malignant. “In that case, we continue the CA125 operation and also remove the other ovary, uterus and glands,” says the test doctor. Because a spot had fallen out, I could go the same week. Fine, then it’s over.

The limits of my body

I will be admitted and operated on Thursday, August 29. It turns out to be wrong, after all. The bad CA125 news doesn’t get through to me. My family sits around me sadly, but all I think about is that big wound on my stomach that needs to heal first. The sharp edges don’t penetrate either because I’m on pain relief. After 4 days, I can go home with discharge. The recovery cannot go well enough for me and is also going quickly! After 1.5 weeks, the gynaecologist calls with the preliminary results: ovarian CA125 tumours in stage I. So favourable. However, the tumour is grade III, which is the most unfavourable.

For this, I need follow-up tests for the HPV treatment in the form of chemotherapy. This starts three weeks after the operation. I’m going for the first treatment on September 20th. Exciting, I’m looking forward to it. What awaits me? How am I going to respond? Everyone in the department is equally sweet, involved and caring.

I also suffer from constipation, and those powders are awful for this discomfort! In the following days, I experienced considerable fatigue that did not go away after an hour of lying on the couch. Fortunately, things got better again in the second and third week. During the next courses I can respond better to the side effects and listen better to the limits of my body.

Important network

I thought it was going to be a very long winter. But time flies by. I’m only halfway through the treatments. Unfortunately, I have an annoying complication in the form of pulmonary embolism. I didn’t know this was so painful and stuffy! My energy level is not up to par. I am trying to complete my studies. That doesn’t work.
Furthermore, it is doing laundry and doing some household chores. It is a constant search for balance. We receive a lot of help and compassion. How important it is to have a network around you!

We now know that I am a woman carrying the HPV and BRCA1 gene, which is almost certainly the cause of ovarian CA125 derived cancer. Even though this creates new uncertainty in our family, we are looking ahead again after the last HPV treatment and the final check-up tests and tests with the oncologist. There are many wonderful things to look forward to: our first grandchild has been born, what a miracle! We are also celebrating our 25th wedding anniversary. And, of course, I hope to receive my diploma!