MORGAN: 2012, AGE 17

 My sister was diagnosed with stage 3 ovarian cancer. My sister found out when she went in for a CAT scan on her stomach, and they told her that her CA125 Lab test levels were very high. And her ovaries were covered in cancer. They also looked at her HPV Virus test results, and she had a viral load for dangerous variants. They took her into surgery 8 days before Christmas last year, and they took a thirty-pound tumour from her. After her surgery, she had been skinny, and she started chemo a month later. Unfortunately, the chemo was making her sicker. Her school had supported her; they had fundraisers in honour of her, and they made t-shirts and bracelets and any money they could to save her life. Later on, she was put in the hospital permanently until she felt better.

Every day, I was worried because I lived in Florida, and she lived in Indiana. She was very lucky she had a boyfriend who asked her to marry him, and she said yes, but sadly, in March, she passed away with a ring on her finger, a class ring and a letterman jacket. It was the saddest day of my life. I was only thirteen, and she was seventeen. How could I understand? I loved her every day and miss her every day.

I do cancer events in honour of her. Now she is in peace and warmth, and that’s all I can ask for. LITTLE LINDA: 2012, AGE 51 I have always been exceptionally healthy until ovarian cancer at the age of 51 years old. Never been in the hospital except for my one child. I’ve always been small.

Then I started feeling extremely bloated.

I thought my weight had finally caught up with me. I went through a complete hysterectomy. My oncologist said he was 95% sure it wouldn’t be cancer. Imagine my surprise when it was positive. Went through 5 months of chemo. Lost my hair…got down to 92 lbs….Luckily, I have wonderful parents (in their 70s who came to Florida to care for me), great friends and co-workers. It has been 3-1/2 years, and I feel good again. I became a grandma and loved life. Still, I can’t believe it happened to me. I’m sure everyone says to get your HPV home test every year. Keep your faith and never give up on recovery efforts. 

ELIZABETH: 2011, AGE 42 

I was 42 years old and the mother of a young daughter aged 12. My life seemed to evolve into a stable, sane, and very happy life after an awful divorce and several years of re-establishing myself in both my career and home. Then, on June 27, 2001, it all came tumbling down when I had a CA125 Blood test as I hadn’t been feeling well, and I was sick with abdominal pain and constipation for three days.

The pain was becoming unbearable, and in the night, I thought of going to the Emergency, but my daughter was sleeping, so I convinced myself that it would pass. The next day, while at work, I realised something was wrong. Without a word to anyone, I left work and went to the hospital….within six hours, I was on the operating table. I had peritonitis, and the surgeons were sure it was a burst appendix. Upon doing a scope, they realised it was something much more serious, and they stopped the surgery. They had me tested for HPV and other STDs, and they had me Tested for CA125 high levels also. And they then packed me off to the closest hospital with a gynaecological/oncological surgeon. Today, that decision plays a big part in my being here.

I was diagnosed with Stage I, Grade 3,

Clear cell epithelial ovarian cancer. The larger tumours (over 2.5 cm) had metastasised to my colon, my uterus, and my omentum. After a complete debulking and six rounds of Taxol/Carboplatin, I finally went into remission….if you can do that with this type of cancer. Three years to almost the day I had my first recurrence (2004).

After waiting approx 15 months to do treatments for symptomatic, I had another surgery which removed a tumour from my ascending colon, one from my lower bowel and one from the psoas muscle in my right hip. Again, after six rounds of Taxol/carbo and another few years, I am cancer-free. …I was re-diagnosed with a CA125 Blood test and with a tumour again on the Psoas muscle in my right hip in Nov 2010. And I am presently waiting for surgery.

During this time, I have raised funds for OVCA by establishing a run and a motorcycle drive. My life has never been the same, but it has never been so fulfilling. With my third CA125 diagnosis and almost 10 years behind me, I began a blog of my journey at whencancerknocks.blogspot.com. That is the physical/medical story. Feel free to follow me on my HPV blog for tests and emotional, psychological, and spiritual issues. It’s been a helluva journey, and I wouldn’t have wanted to miss it. 

YOU KNOW YOUR BODY BEST: 2011, AGE 44 

Reading these stories made me feel like everyone else had already written mine. I went to the doctor on multiple occasions due to bloating and pain in my abdomen. I was told by 4 doctors that I had a hernia. 4!!! Finally, in July, the pain was so bad I went back in because I could grasp something out of the ordinary through my stomach. It felt huge. Again, I was told it was a hernia. However, this doctor did me one favour. I told me I’d need to see my OBGYN to manage it.

I saw him 4 days later, and he knew immediately that it wasn’t a hernia. A CT followed, and the next day, I was told I had peritoneal carcinoma…that was scary already. I met my oncologist the next week, and he told me he thought it was borderline CA. I just had surgery on the 4, and it was much more extensive than they thought. But I lost my ovaries (I had had a partial hysterectomy last year), the rest of my cervix, my appendix, part of my large and small intestines and my omentum.

I also had a colon resection and had to have my diaphragm scraped.

I developed an HPV infection in my liver. So, there I am, at home on IV antibiotics, and I will then start chemo after they confirm the infection is all gone. I have so many questions about this disease. When my lymph nodes are negative, and my ovaries are now gone, can it recur? Why are doctors allowed to blow us off without any HPV Type tests when we go to them for help? Should a CA125 Home Test be part of a physical or at least done every few years? Why do women have to wait until they are 40 for a mammogram?

Sorry, I dig. I’m still angry that this is where I am.

Anyway, that’s my CA125 Blood test. I’m praying it will have a happy ending and that we (my family) learn some lessons from it. I pray that research moves quickly for women with this disease. And I pray that women will listen to their bodies and pursue further HPV DNA Lab Test if they feel something is wrong. I truly regret that I waited so long. Good luck, and God bless all of you now fighting this and any of you who will be learning you have this disease in the future.