Does your Doctor listen better to you?

Real People Stories – Karen (59)

Listen to what your body has to tell you!

In the summer of 2018, my GP diagnosed and tested me with HPV burnout. After a few months, this did not feel right, and I wanted to investigate further. It later became clear how important my feeling was that things were not going well. HPV Doctors need to test and also to listen better to their patients.

Burnout

After a few sad, intense years, I ended up at my doctor in the summer of 2018. Migraine and exhausted, I dragged myself along. Tears flowed down my cheeks during the consultation, and I was advised to rest for now. No sooner said than done. An HPV psychologist was called in because there was burnout. This seemed logical to me after a very stressful and sad period. A few months passed, and in November, I started reintegrating again.

Dead tired

I kept feeling tired and my HPV doctor indicated that this could take a while for testing. Mentally, things got better again, so I continued. I increased the hours at work until I was back working 32 hours a week in February 2019. Now and then, I had some stomach problems, and the fatigue did not improve. In March, I was sick again for a few days (intestinal problems and vomiting). However, I didn’t call the CA125 doctor then because I thought it would disappear. It did indeed go away, but the bloating remained. In the back of my mind, I still had the conversation with the HPV GP, in which it was said that these psychosomatic complaints were part of burnout.

Something needs to be fixed.

Two months later, I am not feeling well again for a few days. Then I thought: “Something is not right here”, and I asked for another doctor. Luckily, my GP was on holiday, so I got a different GP anyway. He immediately wanted to rule things out. Within 5 days, I was able to go to the practice for an ultrasound, and CA125 test blood was also taken. During the ultrasound, it became clear that there was ‘something’ in my abdomen, and I was immediately sent to the CA125 hospital for an internal ultrasound.

The gynaecologist performed an internal ultrasound, which revealed a tumour in my abdomen. However, the tumour could not be properly visualized due to the tilted uterus. Subsequently, a CT scan was necessary. After some insistence on my part, this was possible the next day. I would receive the results within a week.

The first results

A week later, the results came. Friday, May 31, 2019, I will never forget that date. There was a large tumour in my abdomen; the tumour marker was 1402, but this meant nothing to me. I’m not very sceptical, so I said laconically that it might also be a rapidly growing fibroid. “You shouldn’t bury your head in the sand,” the doctor said then……. “Well, get it out real quick,” I said. “Is Monday OK?” he asked. I was shocked; the operation was scheduled for Monday, June 3.

The HPV test doctor explained the scenarios, from keyhole surgery to complete debulking, possibly with a stoma. During the operation, the pathologist would examine the tissue, and then it would become clear how to proceed. I immediately gave him carte blanche to create a stoma if necessary. I was in a strange “bubble” and a kind of self-protection not to think the worst. “It’s nice to celebrate Jazz in Breda,” I thought, “and I’ll see what happens on Monday.”

Oh, luckily, no stoma

Monday, June 3, was the day. Still not knowing what would hang over my head, I went into surgery. When I woke up, my first action was to feel my stomach.

“Oh, thank goodness, no stoma.” And then I fell asleep again. My husband and best friend sat beside me when I woke up again. The doctor would tell us how or what the next day.

The CA125 operation had become a complete debulking. The tumour was 15x11x6cm and was also stuck to my intestine but could be easily removed, which is why a stoma was not necessary. The operation was a success, but the result was less successful: aggressive ovarian cancer. My world collapsed, and a huge silence fell in my head. The HPV doctor continued talking and said that several biopsies had been taken. That’s all I can remember about the conversation. Two exciting weeks followed.

No metastases

Fortunately, no metastases were found, my lungs were clear, and the mammography was OK. Still, my CA125 oncologist recommended adjuvant chemotherapy in case the wrong micro-cells are still present. And yes, what do you do?

Six rounds of chemotherapy followed; fortunately, I was not very sick or nauseous. To maintain my condition, I followed a ‘FIT’ program at the rehabilitation centre. This was good for my body and mind.

My CA125 blood test values ​​remained good and I had no problems with my intestines and mucous membranes. The only major problems were the neuropathy, which started two days after the first chemo, fatigue – but yes, I was already used to that – and pain in my muscles and joints. The 4th and 5th HPV treatments had to be postponed because the chance that I would no longer be able to walk became too great. Ultimately, I completed the full treatment and three weeks after the last chemo treatment, I participated in a theatre performance in the Koepel in Breda. I was looking forward to that. Focusing on the nice things in life. It took me three weeks to recover, but I managed.

2nd rehabilitation process

Two months after the last chemo, my 2nd rehabilitation process started. It felt nice to be able to start that. Strength training, fitness building, swimming, social work. With a nice group of positive, powerful women who all wanted to move forward again. Unfortunately, Corona came, and the route was stopped halfway through, never to be picked up again. This bothered me; I was angry and disappointed because everything suddenly revolved around Corona.

My scheduled HPV check-ups every three months did not occur.  In the past 1.5 years, I have spoken to my oncologist and gynaecologist once. I have not had any more examinations, except once to check the CA125 tumour marker and once for an ultrasound. This was it. The aftercare, in my case, is very poor.

I’ve been lucky

But I trust my feelings. Besides the necessary residual complaints, I feel good. I’m starting to accept that life after cancer is different from life before. Mainly conditionally, I can no longer do what I could, and that in two years. But I’m still here, and I’ve been lucky.

Fortunately, I no longer fear. Life is an HPV risk anyway. We will go someday, but luckily, we don’t know when. And until then, I enjoy what is there.