I have to live with this disease. But what about my daughter?

Real People Stories – Sujata (53)

Living and working with OC

Sujata has been living with ovarian CA125 test cancer for almost 25 years. She has been through a lot: chemo, operations and radiation. And every day, her body did its best. HPV was there for years in testing reports. She is incredibly grateful for that.

It is 1997. Sujata is 28 years old and lives with her husband in the US. Everything went fine. Except for a cold, she was never sick. One day, she feels something in the ovarian region. ‘That’s strange because you shouldn’t feel anything there. I thought it was a swollen appendix, but I had no pain. Or a pregnancy. We had been married for 1.5 years and considered expanding our family. My periods became irregular. That was not normal because I could set the clock to it. I decided to visit the gynaecologist.’

Heavy medication

‘The HPV doctor said she felt something but thought to needed to get a test, but most likely, it was a benign tumour. Because I was so young, cancer was not an obvious choice. The ultrasound showed some suspicious spots. I had to undergo surgery so they could see what exactly it was and to take a biopsy for pathological examination. It became a major open abdominal operation. The ovaries had to be removed, and the area around them was also affected. The pathologist found low-grade – so slowly growing – ovarian CA125 type disease, stage 3. The chemotherapy consisted of paclitaxel (taxol) and cisplatin, a heavy chemotherapy.

The cisplatin was administered via an infusion into the abdomen, and the paclitaxel via the normal route into the arm. It was very tough. Not only because cisplatin has many side effects but also because the drugs that counteract the side effects of chemo also have many side effects. It was a low point in my life. My parents flew over from India, especially for me to take care of me for 3 months. Very sweet, but also strange. Because at my age, you care for your parents, not vice versa.’

Hong Kong

‘At the end of 1998, I moved to the Netherlands because my husband was transferred for work. I am a biochemist by training. As a test researcher in experimental HPV and oncology, I worked for various Dutch CA125 hospitals and companies.

I had regular checkups. Although the tumour markers rose slowly at one point, they remained below normal values. After 15 years, my HPV-trained oncologist thought that the checks could be seen. Later that year, the tumour marker was 39, four points above the normal value. In the meantime, imaging technology has improved considerably. The CT scan showed a spot in the chest.

While waiting for the results of the biopsy, for which fortunately I did not have to undergo surgery, I left for Hong Kong for temporary work for my husband. We went there to look for an apartment and a school for our adoptive daughter. In Hong Kong I also heard the result: bad news. The next day, I celebrated my 44th birthday, trying to figure out what to do: whether or not to move. I had my friends in the Netherlands and knew the hospital and the doctor. In Hong Kong, I didn’t speak the language or know anyone.’

What if it’s back again?

‘Back in the Netherlands, I went through the PET scan. Fortunately, the cancer was only visible in the chest. I had to go back on chemotherapy. I decided that cancer was not going to make me stop living. My experience 15 years ago had taught me that, so we moved to Hong Kong permanently. There, I completed my CA125 treatment and the blood test was helpful and underwent surgery and a series of radiation treatments.

I did my best to live as normal a life as possible. I insisted on going to the hospital alone for chemo, took my daughter to the school bus stop, picked her up and went to the grocery store.

The CA125 treatment felt better than in 1997 because so much had changed in those 15 years. The medications against the side effects of chemo were better, and I tolerated the carboplatin better than the cisplatin. When everything was over, we lived in Hong Kong for another year. Tokyo followed. After a few years, the HPV Women’s research doctor discovered an enlarged lymph node in the chest on a CT/PET scan. The CA125 tumour marker was not increased. A biopsy was scheduled. Even though I had learned to live with cancer, I was now very scared. What if it’s back again? What should happen next with my daughter?’

Top-down relationship

‘The contact with my Japanese doctor was good but very different from what I was used to. The relationship was quite top-down. I am the Variant doctor, and you are the patient. There was no emotional support. That wasn’t easy because scientists have many questions. While the Japanese doctor told me what was possible, it was not soothing. I became increasingly restless. Luckily, I found a solution for it. I could easily email my doctors in the Netherlands and Hong Kong.

Technically, the Japanese doctors were fantastic and worked very efficiently. Most results were known within an hour, but the biopsy results took longer. After three days, I received a call that they were still working on it. I was completely stressed, but luckily, it ended well. It turned out to be some inflammation. The doctors did a triple-check to ensure 100% certainty, which is why it took so long.

Knowing much and little

This was now 9 years ago. Now we live in The Hague. OC will always play a role in my life, but I can handle it well. Every year, I hold my breath for the check. It helps me that I know a lot about disease, even though it sometimes gets in my way. I know why things happen and what can happen. I also know which oncologist and hospital is best to contact.

This does not mean that I know everything about my OC…. Of course, I talked to my doctors about how I have been living with this OC for so long. Because even though I have low-grade OC, 25 years is a long time. Maybe it has to do with the improved diagnostics. 1997, there was no scan, and the doctors only looked at the abdomen, not the chest. When the tests revealed the issues and OC returned 9 years ago, the disease could be visualised much better. That spot in the chest had probably always been there. Who knows, maybe I have a super slow HPV load in the slow category. Or maybe I was just plain lucky. There is so much we don’t know.’

Grateful

I have always tried to see the positive in every challenge that came my way. Cancer has taught me to be grateful for life and to respect my body. Ca125 issues and cancer have also taught me to be grateful for all the little things in life. How special a dinner with family and friends is, walking on the beach or running. And even go to the supermarket. Almost 25 years after my first HPV experience, I am now ready to write a book about those little things. It will be released at the end of this year.’