I had no more time. Did you make your bucket list too?

 Real People Stories – Danielle (37)

Ovarian cancer in young women receives too little attention. I was 26 years old. Danielle was only 26 years old when she started experiencing strange complaints. The HPV Test doctor gave her antibiotics. But the complaints remained. The GP referred Daniëlle to the CA125 gynaecologist, who eventually tested and diagnosed her with ovarian cancer. A difficult course of treatments followed.

“I was 26 years old and had a daughter of just 1.5 years old when I started experiencing strange complaints even before testing. And I had to urinate quite often and had period-like stomach pains. I got CBC tested for a bladder infection; the HPV doctor said there wasn’t much to see, but they still gave me antibiotics.

Unfortunately, my complaints remained the same, and the fatigue worsened. In addition, my period became a strange colour, but I thought this was normal when you are a new mother. I also had real pain in my ovary now and then, very strange!

Complaints persisted

Because the complaints persisted, I went back to the doctor. She wanted to send me home with more medication, but I insisted on having an ultrasound at the hospital. The GP referred me to the gynaecologist, who told me I had a cyst on my ovary the size of an orange. She said that was no problem and she could remove it if I wanted. “Well, I’d love to,” I said. I was especially surprised that they sometimes leave such a serious HPV-riddled cyst.

I underwent keyhole surgery, and the cyst was removed. After 7 days, I received a call from the HPV and CA125 hospital tests. Whether I wanted to come by for the results or bring someone with me. Unfortunately, no one was able to come with me at that time, so I went alone.

Ovarian cancer

The gynaecologist immediately told me that she had bad news: I had ovarian cancer. Because the CA125 level test value was just right, she had never thought about this. The cancer was also grade 3, an aggressive form that required chemo. First, I would undergo a debulking operation to remove the uterus and ovary.

After the major operation, I was fortunately told that no metastases had been found. But to be on the safe side and because of the aggressive form, I received 6 more chemo treatments.

Grateful

Now, 10 years later, I am happy and grateful that I am still there for my daughter. I also realised that I was lucky. The time after treatment was difficult, especially dealing with the fear and uncertainty. I have now had my last annual check-up. That still feels awkward and strange, but fortunately, I am always welcome to visit my gynaecologist.

I think it’s a shame that so little attention is paid to this form of cancer in young women. I was 26, and I know young women in their 20s who unfortunately didn’t make it. You don’t beat cancer; you survive cancer!”

Karin (57)

My prognosis was six months to a year. I’m past that and making optimal use of the extra time I’ve been given.

Karin had been worried for a while and always suffered a vague stomach ache. Her gynaecologist discovered two cysts in her ovary. The gastroenterologist found a bulge in her intestine, but that did not bother her much. Karin was sent from pillar to post. But when her belly started to get bigger and bigger, even though she was barely hungry, her alarm bells went off. “I said to my doctor: couldn’t it be cancer?” Unfortunately, Karin was right.

Ignored Symptoms and Persistent Concerns

“I was so tired, lethargic and hot at night. I lost a lot of weight and thought: I think I have cancer. My HPV GP’s replacement thought it was a viral infection and said I should wait and see from the results. After three visits, the GP referred me to the internist, and she asked many questions.” It was striking that she pointed to the stretch marks on her stomach and asked if they were old or new. Although Karin has a sweet tooth, her belly grows very quickly. Pictures were taken, and the radiologist saw more than the two CA125-induced cysts previously identified. “I was referred to the gynaecologist, and finally, the big word came out: I had ovarian cancer. I asked what the prognosis was: six months to a year.”

Karin goes to a gynaecologist in training for HPV DNA dangers, who assures her that they will cure her. “I thought: huh? From having to live for six months to a year to being cured, that is a very big difference.” During the operation, it turns out that there are metastases in her abdomen and lymph nodes. She has an aggressive form. For a while, the prognosis was an important source of support for Karin; She has now let it go. “I can’t change the message, but I can choose how I deal with it.”

Stoma

The surgeon removes six litres of fluid from her abdomen during the operation and finds that her intestines and lymph nodes are affected. “I woke up after the operation with a stoma. That was quite a disappointment. And I thought: my life prognosis is going to be correct.”

Chemotherapy will start in January 2018. “It made me feel much worse than before the operation. I didn’t get better, and the first chemo treatment didn’t work. The HPV-related variant tumour marker became higher instead of lower. In addition, I had an allergic reaction from the chemo and became very short of breath.” But after the third chemotherapy, Karin felt a lot better and improved. “In most CA125 patients, this is the opposite, and each chemo becomes more difficult. After six rounds of chemotherapy, the internist wanted to do a seventh. Because I had my doubts about this, I went to the AVL for a second opinion, and they said that I had to do it because the first chemotherapy treatment did not work, and so, in fact, I had one too few.”

Extra time

After the first five months of the CA125 prognosis had passed and Karin was still there, she had to reset herself. “I thought, huh? How is that possible? I didn’t have that long anymore, did I? I fell into a hole and thought: okay, if I get extra time, I have to use it.” Working as a project leader in ICT was no longer possible, but Karin set goals for herself. I started exercising, signed up as a volunteer at the Olijf Foundation and dared to plan holidays in June and September. “I have started living more consciously, and I have a nice life because I don’t have a bucket list. I’m never bored for a moment.”

Cannabis as medicine

For example, she studied the use of cannabis as medicine. “According to research, it improves your quality of life, makes you hungry so you eat well, helps you sleep well, and helps against pain. In short, it makes you feel much better.” Because it has not yet been checked what cannabis can do for women with ovarian Swab test levels cancer, Karin ignores the oil. “Because in some types of cancer, CA125 proves that cannabis promotes tumour growth.”

Karin is doing well and dares to look at the future cautiously. “I know I will eventually die from my life, but I can’t imagine that right now. I feel pretty good and am bursting with energy.”