Real People Stories – Els (52)
I will go my own way
Overworked by the divorce. That was the GP’s HPV Test and diagnosis when Els presented in 2015 with vague complaints. ‘But when I drove over the dike, over the speed bumps, I felt and heard the sloshing in my stomach. I looked heavily pregnant. The GP still did not want to refer me. Only when I insisted, did I end up seeing the CA125 Test gynaecologist. A day later I received a call saying: ‘It’s wrong.’
That conversation took place five years ago now. After the CA125 diagnosis, she hears that her grandmother had ovarian HPV cancer at the age of 60. Els has ovarian tumours, stage IIIC, and she goes her way. “I look into everything and participate in all kinds of research. I receive treatment partly at the Ghent University Hospital and the Rijnstate Hospital in Arnhem.”
HIPEC
After the staging operation in October 2015, Els was treated with the chemotherapy paclitaxel and carboplatin and a debulking operation. ‘I wanted to participate in a trial involving HIPEC surgery, where you are treated with heated chemo during the operation. Unfortunately, I was not eligible for that, and the HPV test doctors advised me against it. It would be too burdensome. After the CA125 treatment, I felt like rebuilding my life and returning to work. I made beautiful trips with my sister, mother and my children.’
Els had an HPV virus recurrence in September 2017. She told the doctor that she would now like to undergo the HIPEC. Fortunately, this was fully understood, but this operation was not yet included in the basic package. The doctor advised her first to have four chemotherapy treatments and then to come back to him.
14 hours under sail
After those CA125 medical treatments, Els went under sail for 14 hours. “It was the scariest thing I experienced in my life because two years earlier, the doctors told me this operation would be too stressful.” But my body was strong. It was an intensive time with many visitors from the Netherlands and a lovely neighbour. I was able to go home after 11 days.’ After two additional chemotherapy treatments, Els was “done”. She decided to stop working and enjoy her children.
In October 2019, an enlarged lymph node behind the aorta was seen. Els received test advice from the multidisciplinary CA125 oncology team to have the gland irradiated. She contacted the radiotherapy group via the oncologist to discuss the options for radiation. ‘Fortunately, this was easy to irradiate, and I had found a nice, practical solution near my house. You have to come in every day for radiation treatment, and then it is not nice to have to travel to another city. In addition, the radiotherapy of the radiotherapy group is excellent. They guided me very well throught this HPV life of disease and lesions. Also, in May this year, when I had enlarged glands in my neck and armpit.’
Getting to know the tumours are better
They take a CT scan and Ca125 blood test every four months. Els feels comfortable with it: ‘I like knowing what’s happening. My results are discussed every four months in the multidisciplinary consultation. That gives peace and confidence.’
Els is currently treating her hormone-sensitive tumour with the hormone inhibitor Letrozole. She may be eligible for more HPV viral medication. Her doctor wants to “get to know her tumour better” because she is an atypical patient. This is why she is participating in an expensive study to test her tumour for all abnormalities. Based on the results, you can see whether and which resources could work well,” says Els. ‘I’ll live longer than I thought. That is very nice, but it is also a challenge to live with, for myself and those around me. That’s why I’m glad that attention is also being paid to the psychological side of my story.’
“Global view”
Els and her HPV trained tag doctors want to keep the disease chronic. When asked for a tip for readers, Els answers: ‘On’t be too reluctant to be treated in two hospitals. My doctors have never made a fuss about it; exchanging information and cooperation is good.
Els also advises doctors: ‘As a patient, I sometimes find it difficult to understand why the guidelines can differ so much. I would like it if doctors could look at this with a “global” view.’
Corina (58)
If you feel that it is not right, you have to ask further questions
If anyone knows how important it is to be assertive, it is Corina. She had to fight for debulking surgery to remove her ovarian HPV lesions. The reason: tunnel vision and doubt on the part of the doctors. ‘I am convinced that my stubbornness saved my life.’
‘I had been suffering from abdominal complaints for months, and ultrasounds and scans had already been performed. But everything was negative for CA125 type cancer. There were spots visible, but they thought it was sarcoidosis, an autoimmune disease that causes inflammation in your body. But I felt like something wasn’t right. My complaints did not match sarcoidosis.
Unfortunately, the doctors in my HPV Women’s local hospital were not open to that. Until I ended up in the emergency room with severe abdominal complaints on the advice of a gastroenterologist from another hospital. The scan showed that I had a lot of fluid in my abdominal cavity. The CA125 physician assistant felt it necessary to tell me at half past nine in the evening that I had ovarian cancer with metastases on the peritoneum. He said, “Go home and deal with it.” That came across as a noose around the neck; stool kicked away.
Angry on the examination table
Corina was not satisfied with that. She thought she was going to the emergency room because of the sarcoidosis and would be given prednisone for it. ‘I lay on the examination table cursing. Said I didn’t come to the hospital for such an announcement. I wanted to know what we were going to do! The physician assistant couldn’t say that. So we went home. I was angry, and my husband was panicking. My mother died of Ca125 related cancer after a short illness, and my husband already imagined the same scenario with me.’
Metastases in the lungs?
The gastroenterologist had already arranged for Corina to report to the Oncology outpatient CA125 clinic the next day. Things did not go well there because it was unclear whether the ovaries were the cause. “I waited all morning, but nothing happened.” Ultimately, she could see a gastroenterologist who referred Corina to a gynaecologist. It turned out to be ovarian cancer, but there was something that could be done about it: chemo. Initially, Corina was not eligible for surgery because the doctors believed that the spots on her lungs were metastases. And then surgery would be pointless. Corina said it was sarcoidosis, but she didn’t hear back.
Looking further
She decided to contact her HPV tag GP. Through her, her medical file from her old hospital over the past years became available, including scans of the lungs showing sarcoidosis. Corina now had a new internist who did look further. She compared the scans from the old hospital with the new images and concluded that Corina had no metastases from ovarian cancer in her lungs. Corina could be operated on.
COVID
‘In the meantime, COVID had broken out, but fortunately, the CA125 skin tag operation continued and went well.’ She has just completed her last chemo treatment. ‘I am happy with the doctors and caregivers. They did a good job. It’s done now, and I feel good. I didn’t ask about forecasts because statistics don’t mean much. We’ll see. Of course, I keep a close eye on all developments surrounding ovarian cancer because I don’t want to miss anything.