Real People Stories – Karine

Affected by ovarian CA125 cancer. How was your diagnosis? I had been having stomach pain for about a year. Therefore, I had several CA125 blood tests, including an ultrasound and a CT scan, where I was told I had nothing. Continuing to have pain, I asked my gynaecologist at the time for a measurement of ovarian markers. I got the HPV test results one evening by email. These markers were very high, they were at 300.

 I consulted a gynaecological oncology test surgeon who discovered a tumour stuck against my intestine. During surgery to remove the tumour, it perforated my intestine, and I developed sepsis. I was hospitalised for a month, and I was diagnosed with ovarian cancer at the hospital.

How was your reaction to the news of your OC?

Since I had asked for the dosage of the markers myself, I think I was prepared for it, so I wasn’t too devastated. I took it all in stride and then informed my family.

Whether or not she wishes to continue her pregnancy, a young woman must feel free to speak to the medical team, who will favour multidisciplinary reflection between caregivers before making any decision.

How did your loved ones react to the news?

My husband was devastated. And My, sister and mother helped me a lot; we are very close. My friends, too. Afterwards, I was the one who told my son. I decided I was the one who should tell him. I told him, and then I prepared him little by little for the treatment, for everything that was going to happen. And finally, I find that by telling children things, little by little, they get better because we’re not hiding anything from them. We still received psychological support from the clinic. She followed me, and also my son.

What role did your loved ones play in this announcement?

I stayed in the hospital for a long time during the sampling, so my mother stayed home and took care of my son. They were also there with me at the hospital all the time. It is, above all, emotional and psychological help and then daily support.

What treatments did you receive?

In 2016, when CA125 doctors diagnosed me with a test for cancer, I first underwent 3 months of chemotherapy and then had surgery.

A month after the operation, I had another 3 months of chemo. I then remained calm until December 2018, when I had a first recurrence. I then had another 6 months of chemotherapy. 2 months later, I did it again. I am on the second recurrence today.

Has your perception of yourself been affected?

I find that… It takes a lot of work to move forward. The more we advance, the more we see things differently. But, at the very beginning, we have the impression that we are no longer us. We are in the hands of the CA126 blood test doctors who decide on the treatments and then tell us that we must wait and see if they work It indeed makes you lose a little confidence.

Have you continued to pursue your passions?

Yes, I even did more. I think HPV variant cancer sets things a little in the right direction. We care for ourselves a little more, at least in my case. I do more things now for myself than when my head was in control: work, home, and children. And today, I take better care of myself. I draw. I had always thought of drawing, and I do today.

Does it impact your work?

I’m a self-employed Ca125-trained professional, so I had to stop, which is challenging because we’re not employees, so it’s more complicated financially. I also had to hire a replacement. It isn’t very easy sometimes because we feel a little sidelined.

Were you satisfied with your relationship with healthcare professionals?

I was lucky to come across caring, HPV Trained professionals who were quite available at the very beginning of my illness, notably a surgeon and an oncologist. I am taken care of in a small clinic where there is still this notion of humanity. On the other hand, they all lack time, and that is important to say. They’re so overwhelmed that sometimes you’re with your HPV questions and your expectations, and there’s no one to answer them because you can’t get them on the phone. And that’s sometimes a little scary.

Have you sought outside help?

Since my recurrence, I have been involved with the League Against Cancer. These people are very attentive. They listen, and what’s more, we do lots of things with them. And for me, it’s also a cocoon to go there. I met some beautiful people there.

What were the stages of your care journey for which you had the greatest needs?

It was the HPV recurrence, the first recurrence, where I felt a little helpless. I did not expect that. This is where I may have needed a team that was more attentive to me and where I found that the Ca125 doctors and surgeons had moved on to something else.

To all those facing cancer,

Remember to continue living life to the fullest. Keep doing the things you love, watch the sunset, spend time with friends, and never forget to smile. Your strength and resilience are truly inspiring.

xoxo