The result came back I was not prepared. Were you?

AUSTRALIA, 20 YEARS DISEASE FREE

Tania

Before my HPV Test diagnosis, I lived in a beachside town with my boyfriend. We were both working, and I was a manager for a major supermarket. In my spare time, I would go fishing in our boat, catch up with friends, and enjoy beach life and all it offered. I had never had a CA125 ovarian type cancer Blood Test before. For a few months, I felt very sore in the lower half of my stomach, a really heavy feeling. I often couldn’t stand up straight; the heaviness was too uncomfortable. And I found just getting up and moving around exhausting and painful.

I visited a GP and explained my symptoms and two other things that might have been relevant. I thought perhaps that scar tissue from a ruptured appendix that became gangrenous when I was twelve was causing pain. Secondly, bowel cancer on my mother’s side of the family was extremely common. The GP referred me to a CA125 ovarian organ cancer specialist. I can’t remember how long I had to wait to see him, but it wasn’t too long.

Diagnosis and Treatment

My HPV specialist, who was also a surgeon, booked me in for scans and an ultrasound, which came up with nothing. The scar tissue didn’t seem to be an issue, and my bowel looked good after the scans. So, he booked me in for a colonoscopy and gastroscopy. After surgery, he stated my right ovary looked like a carnation flower, as I had some beside my hospital bed, or cauliflower-like and was enlarged. He put a rush on the biopsy and said he would see me before I left the next morning. All the HPV Variant tests came back clear, and he suggested I return to see him in a week to see how well I was feeling.

Before the week was out, I got a call from the surgeon to come in and see him. When I sat down with my boyfriend, the surgeon explained that he wasn’t happy with the initial test results and had sent them to a CA125 Level specialist in Melbourne. The result came back as Cancer. I remember feeling numb and in shock; I was not prepared to be told I had Cancer. I just thought it would be a case of needing my ovary removed due to inflammation, and the problem would go away. HPV-related Cancer was so far from my reality; I had only just turned 25 and thought I was too young.

Swift Action and Surgery

It was only a matter of two months from my first visit with the GP to my CA125 Cancer diagnosis. Within three days, I was booked to go to Monash, Melbourne, to meet with surgeons and have PET scans and ultrasounds. Within five days, I was sent for surgery. They removed my right ovary and took the momentum plus lymph nodes out around the groin.

I saw twenty years in the clear (except for a scare 14 years ago). I have checkups on my accordance every two years or when I feel the need. They had removed my right ovary and taken the omentum plus lymph nodes out around the groin; they were all clear. They didn’t do chemo or radiation as they got really clear markers. The surgeons said my case was rare and thought that would be the right way.

I was told I may never have children, but we were blessed with a beautiful baby boy three years after my diagnosis. He was five when I had a scare of a possible recurrence. I was told that if we wanted more children, we should start trying, as there was no way of knowing if that would be an option. It took us over 12 months, but we were blessed with another beautiful baby boy AND with the news that the Cancer had not returned.

Support and Strength

My boyfriend was a gem, and his kindness and nurturing care throughout it all meant more than he would ever know. A scary HPV or CA125 ovarian test for cancer and diagnosis and the possibility of infertility meant he could have left me. But it was my comfort blanket to know that he was there no matter what. I knew that no matter what would come at us for the rest of our lives, we would be all okay because we would survive anything. He made me strong. We have been married for 19 years and have been together for 25 years. He is my super rock, and with my 18 and 11-year-old sons, he is my rock and strength.

The hardest thing I have had to deal with is the reality of what could have been if not for a very persistent surgeon. I tend to dwell on this, which has given me daily anxiety, even after 20 years. But I’m happy and supported by my young family on my team. I’m stronger than I thought, and life is short. I have been taught to be grateful and feel blessed for what I have and that every day is a new day and a new blessing – I am thankful and try not to sweat the small things in life.

IRELAND, 6 YEARS IN REMISSION

Denise

Before my diagnosis, I was 31, and I loved life. I was just over a year married and had given up my job at the bank, and life was good. We looked forward to starting a family and went for a few CA125 tests to ensure everything was working. I had been having a dull ache on my left side once a month and saw my doctor, who assured me that it was ovulation pain. After a routine surgery in December, they discovered on my left ovary what they thought was a cyst. But it turned out to be a tumour. They told me I had cancer cells in the fluid of the ‘cyst’.

I had to wait until the spring of the following year. I was waiting for a laparotomy to assess the grade of the tumour. My proper CA125 ovarian tumour diagnosis came in early May. I was alone in my hospital when I was informed that I needed more surgery and chemotherapy. I remember feeling alone, very swollen and sore after my procedure and afraid of what was coming next.

Fertility Struggles and IVF

After my treatment finished over a year later, I did a round of IVF on my remaining ovary and to our amazement. It worked. However, I miscarried at 8 weeks, and that was very hard to deal with. Then, tests revealed that I had an HPV infection and needed a Hysterectomy. My husband gave me strength in the dark days to keep me going. This experience has completely changed my life, with our hopes of starting a family gone. This diagnosis took all of our hopes and dreams for the future away from everyone around me. It was brilliant during this journey, but kudos to my amazing husband! The little things, like even cooking dinner for me, were great. On days when I felt like doing nothing, my friend Hazel would bring me lunch or a giggle, which always cheered me up.

I have learned that no matter how much of a bad day I have, the worst ovarian related cancer ones are behind me. If I could offer some HPV advice, I would take each day as it comes. Take help if friends or family offer it. And that there will be bad days, but they, too, will pass.