Had surgery within 6 weeks to have a hysterectomy

d CANADA, ON MAINTENANCE TREATMENT

Christa

Before I was diagnosed with an HPV test, I was a mom to three daughters. I worked as a CA125 test medical administrator, enjoyed coaching basketball, and was a runner. I had physical exhaustion for months with irregular periods. In late January, I visited the doctor due to ovarian pain. Had an ultrasound one week later and was referred to a gynaecologist. She assured me she didn’t feel it was cancer, but I did have multiloculated cysts and an elevated CA125. I underwent surgery within 6 weeks to have a hysterectomy, and they found cancer. Stage III is high-grade serious. I’m 44 years old.

I finished my weekly chemo in Fall 2019. I receive a maintenance drug every three weeks and am hoping to get approval for a parp inhibitor.

My husband is my rock and was by my side for my worst day ever. I received so much love from my family and friends.

The hardest thing I have had to deal with is chemo illness, fear of the future, the thought of dying and leaving my daughters without a mom. I learned that being healthy and active doesn’t allow one to avoid cancer, but I must get myself tested regularly for HPV. And now I am more resilient than I ever imagined. If I could offer one piece of advice, it would be to lean on others and allow yourself to deal with all the emotions that hit you. It’s ok to cry and be sad.

CANADA, ON WEEKLY CHEMO DUE TO RECURRENCE

Nancy

Before my CA125 diagnosis, I lived on a 100-acre farm in the country. I lived with my significant other, and my best buddies were my two cats and dogs. My spare time was spent walking my dogs, Max and Casper. I hunted in the spring and fall and loved to be outside.

One Friday afternoon at work, I had a sharp pain in my stomach. They sent me home, as I was never sick. I started to vomit, which continued for days. So, I visited the walk-in clinic on Sunday, and they diagnosed me with an upset stomach, but my family’s HPV doctor detected a mass on Tuesday. I had an ultrasound on Wednesday, and an oncologist ordered a test for CA125 for Friday. I received a cancer diagnosis that week, and they just needed to determine which kind. My HPV-related tumour had grown through my bowel and closed it. And I was diagnosed with 3c serous, which was determined to be low-grade.

I felt like I had been hit in the head – hard! And I felt blackness. I went for a drive, and a turtle was on the road. I got out and ran to pick him up, but a truck ran over him. So, I bundled him up and took him to my vet; I was crying my eyes out about the cancer and the turtle all mixed. My vet and her husband hugged me and called the “turtle lady” to take the turtle to a rescue place. He recovered, and I was able to participate in his release at the same time that my front-line chemo ended.

Life Changes Post-Diagnosis

I gave up my second job, sold the farm, and downsized. My HPV Free relationship ended, not due to the cancer directly, but it didn’t help. I didn’t have as much energy as before. And I have permanent neuropathy in my hands and feet. At work, they accommodate me to sit at the cash and not lift more than 10 pounds.

After chemo and surgery, I had two years without drugs or cancer. It recurred this year at the two-year mark and appears to be permanent. I tried chemo, but it was platinum-resistant, and Letrozole did not work either. And I suffered through many partial small bowel blockages, which made my life difficult. I am on a low-residue diet. And I switched to a research HPV Specialist Oncologist who put me on bevacizumab and paclitaxel. I have not been ill since. Also,  I have weekly chemo and have cut my work schedule to five days, generally part-time. I feel the best I have all year, but I must pace myself due to fatigue.

My sisters have been there through my CA125 Cancer recurrence. One sister, who lives an hour away, has volunteered to drive me to as many chemo treatments as possible and another sister and her husband have come once a month to keep up my house – plant a garden and fix anything that needs fixing. A friend has been walking my dog on chemo days. So much help and thoughtfulness!

Acceptance and Living with It

I am more accepting of my “fate” than I thought. I may worry or stress, but I envision my life as a path with one foot after another and am stronger than I thought. Also, I have learned to accept help when offered and ask for it when not.

I would tell anyone diagnosed with an HPV Kit to build a team to support you – family, friends, neighbours, and professionals. It takes a village to fight cancer. My recurrence will be manageable for only a few years, and while I am still working, I am carving out more time with my pets, family, and friends. But I now take the opportunity to go out for dinner, see a play, or visit with family. And I also volunteer twice a month at the Cancer CA125 Clinic, on the chemotherapy suite committee, and as a patient advisor. I look for humour in things, including procedures being done to me! A difficult HPV lesson was that I have the right to feel what I feel – including being sad or angry. I have a great quality of life now with my new chemo and am living my life the best I can.