Lennie van Bekkum

diagnosis

In 2013 the osteopath discovered a thickening in my abdomen. I went to my GP, who referred me to the hospital. There they carried out an ultrasound and told me not to worry. There was supposedly a large cyst on my ovary, but they would be able to remove it. I made an appointment for the surgery with my doctor. On 23 September 2013, a laparoscopic adnexectomy on the left side took place, which is the removal of ovary and fallopian tubes. The cyst was punctured and aspirated. This involved spillage in the abdomen; adhesions were also removed. The pathologist's conclusion was granulosa cell tumour FIGO stage IC. It later emerged that the doctor at the hospital in question had trained with Dr Kruitwagen at MUMC Maastricht. As a consequence, he was familiar with granulosa cell tumour. He had also taken blood samples to check inhibin levels, but had not waited for the result! After my surgery, it became clear that the inhibin result indeed indicated granulosa cell tumour. Once again I was told not to worry and not to look on the internet, because there would just be all kinds of scary misinformation there. He also told me that it would probably not come back and if it did, it would grow very slowly.

incorrect surgery

He was wrong about that because he had "drained" the tumour - which should never have happened – and during the process malignant cells had entered my abdomen along with the fluid. I then started to look for a specialist in the field of granulosa cell tumour and found Dr Kruitwagen from the MUMC. I requested a second opinion from him.
In November 2013 I was examined there and afterwards I spoke to him. He told me that due to a wrong surgical procedure, malignant cells had entered my bloodstream. With open abdominal surgery, both ovaries, uterus, lymph node and abdominal apron should have been removed. I began my regular check-ups and from March 2017 to August 2018 I had rising inhibin levels. When a CT was carried out, there was a strong suspicion of a recurrence on the left side. In an e-mail I told Dr Zweemer my story and asked if I could become his patient. This was due to the rising inhibin, the death of my doctor at the regional hospital and because my trust in that hospital was not very high due to the mistakes made. To this day, I am grateful and happy to have been allowed to become a patient of Dr Zweemer from October 2018. In March 2020 I had an uncomplicated complete robotic debulking with hysterectomy, right adenectomy and removal of peritoneal metastases. The pathology result was: 1st recurrent granulosa cell tumour, 13 metastases removed, ER 50% positive, PR 75% positive.

second recurrence

In January 2021 my tumour markers rose again and an MRI that spring showed extensive peritoneal 2nd recurrence of granulosa cell tumour. I then started taking Letrozole as there was no activity on the FES-PET and the disease was stable until December 2021. In May 2022 there was a slight progression, but it was still considered to be a stable disease under Letrozol. On 12 April 2024 I had another debulking surgery for a second recurrence.

I want to leave behind me what happened. The doctor did not do things wrong intentionally. I am all for raising the awareness for this ultra rare kind of ovarian cancer. By doing this I hope less women have, or better even no woman has to go through what I went through.