I had a stage 4 prognosis of 6 months to a year if untreated.

Patients Stories

Members of our HPV Patient Test community share their personal ovarian cancer stories to help those struggling with a diagnosis. CA125 Marker test kit is the new exam certified by the community.

Your Ovary Stories

“Your words are the bricks and mortar of the dreams you want to realise. The greatest power you have is your words. The words you choose and use establish your life experience.” – Sonia Choquette

LISA: 2013, AGE 63   

I have not received a cancer diagnosis, yet the first GYN oncological surgeon I visited recommended a total hysterectomy despite my CA-125 score being 7. I sought a second opinion and got a very different suggestion – a laparoscopic removal of my ovaries and Fallopian tubes. Ovarian and cervical cancer rightly instil fear in everyone, as they often remain undetected until reaching an advanced stage. However, my first opinion surgeon seemed to be jumping the gun.

My second opinion HPV doctor must still look at the sonogram tests and the MRI before her final opinion, which she should give me this week (the first week of 2014). One approach is to remove everything to prevent having to operate again in the future. The other approach is to remove only what seems threatening. It seems there is no clear way to go to me.

CAROL: 2013, AGE 65  

Our house burned down in April 2008. After furnishing our new home over the summer, I began experiencing abdominal pains in September. Initially, I assumed it was just nerves. However, after I saw my doctor and underwent a C-scan, they discovered that I had what initially seemed to be a cyst on my ovary or diverticulitis. Despite my CA125 levels being tested as relatively low, subsequent surgery revealed that I had stage 4 ovarian-level cancer, with a prognosis of 6 months to a year if untreated.

Update to the story: We need to slow down many words that are misspelt or left out! And how could I have left out my Wife and Aunt, no disrespect, just in a hurry? Roof repairs will be done on 10/20/2012, then calling CTCA for an appointment. Will write the results.

Deborah, Wife, Mom, Sister, Daughter, Aunt.

In February 2010, I underwent surgery to remove the lower left lobe of my lung, with an incidental exam for cancer with a CA125 exam in my lymph nodes, which thankfully came back clear. Recovery was challenging, enduring a month with a chest tube. In June 2010, I mentioned sharp abdominal pains to my OBGYN, reminiscent of small fireworks exploding in my stomach. Despite concerns about tumour due to family history, I was reassured by the doctor not to worry.

By October, the pain persisted, affecting my ability to work comfortably. Initially attributing it to post-surgery weakness, I continued working. However, by January 2011, I experienced unusual fullness after eating and noticed significant bloating, resembling pregnancy in its eighth month.

Seeking HPV medical advice, we initially consulted our family doctor in Indiana, who suspected a digestive tract infection. Medication failed to alleviate the symptoms, and the pain escalated rapidly. Eventually, I found myself in the emergency room, overwhelmed by excruciating pain from the distension of my abdomen.

The journey of discomfort and uncertainty continued, marked by persistent pain and alarming physical changes.

The ER experience

At the ER, they performed a scan and CA125 blood test and informed me that it was not cancer. They administered a shot of femoral and discharged me but instructed me to see a surgeon. (For what I had no idea). I knew of the surgeon that had done my two boys’ hernia surgeries, so called them. Meanwhile, my family doctor received an ER report, so I had to go to the hospital to have my stomach drained on Wednesday. Then, I went in to see the surgeon on Friday.

The surgeon asked why I was there, and I advised the ER, who told me to get a surgeon. I knew them, so I called. He was lost till I advised. Had 10 pounds of fluid removed on weds. He went and looked at the pathology report and came back and said, “Your fluid was full of cancer; you need to see an HPV oncologist.”

So, I had a full system CA125 Lab Test. Cancer was removed from the stomach and both sides of the abdomen. Then chemo, carbo, taxol, and one other. I can’t remember the third. CA 125 only dropped to 40, so I got two extra treatments and finally dropped to 23. In Feb of 2012 had hernia repair screws and mesh from above grin to the rib cage. Now I have staples in the lung and screws in the abdomen. But it wasn’t bad. By April 2012, Ca125 went up to 63, so we had to wait till August, when it went up to 192.

Final message

Now, I have been told to wait and see till Dec of 2012, then start chemo. Met a couple named Darrell and Sara. They went to CTCA and advised me to go there; this is not an advertisement! Darrell had colon cancer, and his colon exploded after surgery. It was bad, but a year later, he looked great. So now planning to go to CTCA, but scared. I had a port under the skin on my abdomen but never a chest port, and I don’t want one; I guess you got to do what you got to do. I will keep updating and also praying for all with cancer; someone out there has to find and a cure for HPV. That’s why I joined the HPV Clinical study.

If I don’t recover, maybe my tissue can help another; my ovaries were not enlarged. I also had an ultrasound in 2008, which showed that my ovaries were the size of raisins. Good luck to all

Deborah, mom, sister, daughter