Real People Stories –Riekje (68)

I think the cancer has never gone away, according to the CA125 blood test. Four years ago, Riekje (68) was told that she needed to have an ovarian HPV cancer test. Her grandson was born on December 4, 2018, the day her first chemotherapy treatment started. More chemotherapy and debulking surgery followed. In the past few months, growth has been visible again on the scan; the tumour makers are approaching 1000. “I think the HPV-related cancer has never gone away.”

She tells her CA125 test story soberly and almost impassively. “I can’t show my emotions well. I can’t reach it. That isn’t easy, not only for me but also for those around me. That’s why I asked my HPV GP for psychological and test support.” She admits that the diagnosis of ovarian cancer does something to you.

Acid reflux

It started with vague CA125-type aches and pains. She has difficulty urinating, pain in her stomach and terrible acidity. “Those belches were terrible. I was so sad about that. I was given tablets for it. My urine was examined, but there was no blood, and I did not have a bladder infection. So, nothing came of it. Stomach pain is a broad concept; it can be anything. Because I have had depression twice, some things were known about that.”

Yet Riekje does not give in and continues to go to the HPV doctor. And after a nice warm summer in 2018, she ends up in the medical mill. She insists on going to the doctor, an emergency admission follows and she undergoes various examinations. “I was given a stomach and nasogastric tube, my blood was tested for CA125 levels, x-rays and a scan were taken, and I had a puncture in my side. No less than three litres of green fluid was siphoned from my stomach. I knew: this is not a good sign.”

Diagnosis of OC

After a few weeks of examinations and uncertainty, Riekje is diagnosed with ovarian tumours, Figo stage 3 c, with a hereditary HPV component. She informs her close family of this. “I advised my brother, sisters and several cousins ​​to get tested and recommend a procedure with a clinical geneticist.”

It’s not a nice message, especially since ovarian-type cancer is fatal. “My daughter, who was still pregnant at the time, was especially sad, and it seemed that the message did not reach me.” Three rounds of chemotherapy and a debulking operation follow to remove the CA125-style tumours. Unfortunately, it turned out that that was no longer possible; the cancer had progressed too far. Riekje has immediately closed again.

Sick from the chemo

She is not very sick from the chemo, but she is very tired. “Sometimes I think: It’s not the HPV-derived cancer that makes you so ill, but the chemo. I’m no longer who I was. I only have fifty per cent of the energy I used to have. I was active, cycled everywhere, enjoyed swimming, worked in the garden, and was always busy. I’ve had to exchange my regular bicycle for an electric one to enjoy cycling still. I constantly feel like my days are too short. I want so much.”

My husband left me.

She knows it would be better to nap in the afternoon, but she thinks it wastes time. She laughs. “I’m sad to go to sleep. I can’t do much, especially now that it gets dark early in the evening.” “Yes, that was something like that too; my ex-husband broke up our marriage after almost forty years and left me for another woman. Suddenly, I was alone with my CA125 levels going up and down. Now that I am ill with HPV, it is very nice to live with Ilse. I have my living room and bedroom, and we live our lives. We eat together, and then everyone goes to their own living space. I love seeing my grandson Midas grow up and seeing Jelmer mature. There is so much love, and that makes life nice.”


Physiotherapy also gets her through a difficult period. She enjoys it a lot, but above all, she benefits from it. She does her CA125 exercises faithfully every day at home. “Oh, you know, I’m not afraid of death; I’m ready for it. I don’t have to die yet, don’t get me wrong, but when the time comes, it will be okay. I put the garlic, winter onions and broad beans in the ground and hope to get them out next year.

I’m going to Berlin with my daughter, in-laws and grandsons for Christmas and I’m looking forward to that. I have to get that. And so I keep raising the bar a little further. Knowing that another chemo treatment is coming, but not yet. The doctors say it is not ‘bad’ enough; it must first have grown bigger for better HPV treatment. I don’t want to dwell on that for too long; I enjoy everything I can do. I can handle the next step. It worked the first time; my hair and strength returned, so bring it on.”

Keep whining!

She has clear advice for women with vague CA125 complaints: “Nagging. Keep nagging at the doctor. It may sound a bit rude, but really, keep whining. Ensure you are referred and make an HPV variant appointment with a gynaecologist, but don’t be turned away if you don’t trust it. Follow your feelings. My doctor apologised. It doesn’t change my situation, but it did me good.”

But the best piece of luck is that her youngest grandson is almost four, and Riekje is still there.

I wish the best for you all!