Ien Fransen

wrong diagnosis

In 2009 I was diagnosed by two separate gynaecologists as having a myoma, which is a benign growth that develops in the muscle wall of the uterus. Do remember: granulosa cell tumour is a very rare form of ovarian cancer. I was operated on by a third gynaecologist, who was training to be an oncologist, and she was very surprised during the surgery. Because she had so little experience, she prodded around too much and caused spillage. In my case, this led to Figo staging 1C, which has a worse prognosis than 1A. The latter is the prognosis women get if they are diagnosed early and operated on properly. Spillage can lead to recurrence upon recurrence, which is how it went for me.

new hospital

Every three months my inhibin levels A and B were checked and in late 2011 I had an elevated inhibin B level and was referred to the Amsterdam UMC. The quarterly checks continued and a CT carried out in 2012 showed tumours in the abdomen and a second operation followed. After that surgery, the inhibin levels went right back up and a new CT revealed tumours on my ribs and in my abdomen. I was in pain with every breath and had my third surgery in 2014, during which the tumours were removed. In 2016, there were tumours in my liver and it was time for operation four, a liver resection, and during the operation also Radio Frequency Ablation (RFA) of more affected tumours. Again, inhibin levels were elevated straight after the surgery. The scan showed 10 new tumours on the liver. It was clear to the surgeon that there was nothing more he could do. The internist-oncologist offered chemo, even though he knew the chances of it working were slim.

my seach for appropriate care

I decided to go to another hospital and there I was given medication that did not work for me. To get an experimental drug (Alpelisib), I had to undergo chemotherapy first. The rules were that you had to have done everything possible before you were eligible to get this experimental drug. After two weeks of using Alpelisib, I developed diabetes as a side effect and had to take appropriate medication. Unfortunately, after a few months it became clear that Alpelisib did nothing for me, so I stopped taking it.

Meanwhile I had been in touch with an interventional radiologist through an acquaintance, because the interventional radiologist at the hospital where I was being treated refused to do anything.

So I was being treated in two hospitals. Very inconvenient, of course. The interventional radiologist at the other hospital suggested burning away the ten tumours on the liver in parts with Radio Frequency Ablation (RFA). That worked, but unfortunately this did not stop the growth of new tumours on the liver. The attending internist didn't know what to do anymore either and labeled me "beyond treatment".

to the 4th hospital

There, I began with Provera and Metformin. Those two meds didn't work. I had a DNA test which revealed nothing that could help me get a treatment that would work. A new CT scan showed that in addition to the liver tumours, there was also a small tumour below in the abdomen. I received radiotherapy for that one and meanwhile the tumours on the liver continued to grow. These began to cause symptoms and, by mutual agreement, I started chemotherapy in tablet form. The side effects were severe neuropathy in my hands and feet which meant I could barely walk, so the advice was: stop! After an acute admission due to severe upper abdominal pain, I was told this was the end of the story. We were asked to make an appointment as a family, so the doctor could also tell the children that it ended here.

not ready to give up

In the autumn of 2022 I went to a hospital where I had been treated before, but by different doctors, so let's call it hospital 5. There I asked for RFA again. They were unable to give me that and my new internist immediately informed me that she had no more medication for me. After reading my file, she had realised that no medication had helped me at all and so she refused to do anything. She indicated that this was a natural process which was coming to an end. She focused on acceptance and expectation management. I then asked an interventional radiologist for treatment myself and was given it in the form of embolization of my liver tumours. My internist was happy with that and cooperated. However, in September 2023, I was doing miserably, my liver values were bad and the internist said, "I can tell by looking at you that you are in your last stage of life". Would I not make it to Christmas?

new hope

A fellow patient who sought and received radiotherapy on her own initiative in the summer of 2023 sent me an e-mail address of her radiotherapist-oncologist. After I emailed him in late November 2023, he indicated that he thought it would be possible to improve my quality of life with radiotherapy. I could barely walk or stand anymore, was very short of breath and tired easily. He suggested starting with 10 radiation sessions with a very low dose. No sooner said than done and from December onwards I was on the VMAT Rapid Arc table 10 times. By Christmas I was feeling much better and by the date I had planned my euthanasia in January, I was on holiday in Cape Verde with my family and was able to do everything important to me again; be active, walk, cycle and stand for long periods.

The internist said she would remember this experience and she was genuinely happy for me that I had regained so much quality of life. My Inhibin B levels had dropped from 9000 to 145 after radiotherapy and my liver values were practically normal.

We’ll see what the future brings.