Marlou van Oevelen - van Dun - † 8 maart 2024

52 and an irregular menstrual cycle

The oldest record of her symptoms dates from June 26, 2014. She was 52 years old at the time and complained that her menstrual cycle had become irregular. The GP gave her two types of pills to get her cycle regular again. (In retrospect it is fair to ask whether there were early signs of granulosa cell tumour symptoms then, as these tumours grow very slowly initially).

58 and heavy periods

The next note is from April 2021, when the GP prescribed her Primolut 5mg and Tranexamine 500mg. She suffered from heavy periods and very heavy bleeding. She was 58 at the time and was certain that she should be nearing or already be in menopause by now. She was referred to a gynaecologist in May 2021, who couldn’t see anything abnormal when carrying out the standard tests: a smear test, and internal and external ultrasounds. A biopsy from the uterus also gave no cause for concern, as the doctor told her two weeks after the tests had been carried out. So she kept going, still suffering with the same symptoms. Going to work was difficult as she had so much blood loss that she had to go to the toilet every half an hour to change. Her periods lasted 3 weeks on average. She was “strung along” until October 2022.

finally a diagnosis

After the 2022 summer holidays she had had enough. Her periods were lasting for 24 days again, so she went back to her GP with the urgent request that a solution would finally be found. She thought she might even be the oldest still menstruating woman. Fortunately her GP showed a great deal of understanding and he referred her back to the gynaecologist. This time more tests were carried out, including an MRI and a CT scan. The MRI clearly showed that there was something in the right ovary. A granulosa cell tumour was suspected and confirmed by a blood test of Inhibin levels at the Erasmus Hospital in Rotterdam.

no centre of expertise, no FIGO staging, no additional treatment

She wrote: “The tumour secreted so many hormones into my body for so many years and I was also taking hormones as prescribed by the GP. This made it appear for all those years as if I was menstruating, but that hadn’t been the case for a long time.”
On 2 February 2023, almost 9 years after her first symptoms, Marlou underwent her first surgery at a regional hospital, during which her ovaries and uterus were removed. She didn’t write down anything about a Figo staging and if there had been one, she would certainly have recorded it. The tumour was situated in her right ovary and measured 7cm. While removing the tumour they noticed that it had already broken through to the underlying intestine, but this was not operable (yet). She hoped that the remaining cells on the intestines would lay low for a while. After the surgery, she was not offered any additional treatment. She finally entered menopause at 61 years old, which was still an improvement on all the previous symptoms and pain. At last something had been done. She wanted to look ahead, embrace life and enjoy her grandchildren.

The inhibin values immediately after surgery were less than 10 and therefore good, but at the next test in June 2023, 4 months later, inhibin B had risen again to 80.


to a centre of expertise after all

On 9 August 2023, Marlou had another CT scan at the regional hospital where she was being treated, because they suspected a recurrence. When the results came in that suspicion was confirmed and she was finally referred to the Catharina Hospital in Eindhoven, a centre of expertise in gynaecological cancers.

Meanwhile contact had been established with Professor Zweemer from the UMC in Utrecht, a doctor, expert and researcher in the field of granulosa cell tumours. While on holiday in Spain on Friday september 15th, Marlou and her husband received a phone call from him. He indicated that it would be best if Marlou had surgery in Eindhoven to remove the tumour. That surgery took place on Tuesday 7 November. The day before the surgery she was given another CT scan. Her gynaecologist was shocked by what it showed and called her that same evening to say there were a lot of metastases visible and that they had to be prepared for the possibility that the surgery could not be successfully concluded. This is exactly what happened. It became an open/close surgery, during which 3 biopsies and photographs were taken.

During the surgery she was found to have more than 32 small tumours in her abdomen. She received a few more chemo treatments, but they did not make the tumours smaller. She did, however, develop bowel obstructions. She was no longer eligible for a trial in Leuven with new drugs, due to how advanced her disease was.

On 8 March 2024 Marlou was euthanised at her own request.

There were no flowers at her farewell, instead the Foundation received more than €1,200 in donations. Thank you Marlou for that final beautiful gesture.