Real People Stories – Josephine

My Journey Part I

I wanted to share my full HPV Test story but didn’t want to put it out there immediately. It began back in 2020 at 32 years old. At the height of the pandemic, I found out I was precancerous for ovarian cancer when I went in for a well-women’s check and told my OBGYN about my swelling abdomen. After lots of imaging, it came back that my ovaries were 16 cm large.

I followed up with a CA125 oncologist for testing, and my left ovary was removed as it looked the worst of the two, and 3/4 of my right both were sent for biopsy. My oncologist said there was a 4% chance I have HPV cancer since it’s normal for women to get cysts. However, a phone call 2 weeks later, and she told me I needed to remove my right ovary since it was tested as CA125 precancerous and I had a week to decide if I wanted children or not. I wasn’t even engaged or married but in a long-distance relationship. I made the decision not to have children, argued with my father about it, and went in for surgery a month later.

Emotional Struggles and Identity Crisis

I struggled a lot mentally then. I never gave myself the proper time to grieve and jumped right back to work a week after CA125 surgery. It wasn’t right in retrospect, but I worked in the medical field then, and COVID was very demanding of us medical workers. My boss demanded and begged me to return (I no longer work there). I had an identity crisis as I struggled to accept if it was ok to see myself as a woman since a good part of my female genitalia was gone.

Even though I’m biologically female and look female, I struggled to accept it since I “failed” as a female and grieved at the blessing all females are born with—the gift of birth life. I made peace with it all when I accepted that I could not mould myself to the social norm—the rat race—as I am no longer on that track but rather in the race at my own pace. Robert Frost said it best in his poem “The Road Not Taken”. I am taking the road less travelled, and it’s ok; this is my life.

Moving Forward with New Challenges

Fast-forward to 2023. I’ve got a local boyfriend and a new job and am starting to feel like I’ve got my life back. Everything is great!

However, this nagging voice was in my head that something was wrong with my HPV infection. I ignored it for a good part of the year until it formed anxiety, and I quickly found myself at my doctor’s office because of stomach pains in March. He told me it was no big deal and that he could give me anxiety meds to relax, as well as a referral to see a cardiologist and a gastroenterologist. After testing refused the CA125 level medication and followed up with the specialists. I did several HPV and other tests with the cardiologist, all of which returned normal. And at the gastroenterologist, the doctor summed it up to GERD, which I’d never had HPV induced organ cancer before, but it does run in my family as the tests showed. I stuck to pantoprazole for a while, thinking that was the issue—everything was ok.

Frustrating Misdiagnoses

That is until one night, I had really bad back pain and spent 6 hrs at the ER to get a CT of my abdomen, which returned “CA125 levels were normal”. I told the HPV doctor my test history, and he assured me nothing was there. But it wouldn’t end there; from May to September, I went to the ER twice a month because of pain.

They couldn’t find anything and recommended I follow up with my primary care doctor (PCP) and OBGYN. I had an appointment with my OBGYN but got one of her HPV colleagues instead since my doctor was out that day. She reviewed my ER documents and was mad they gave me antibiotics for a UTI because they found blood in my urine, but that isn’t possible since I don’t have ovaries. Instead, she took me into their ultrasound room and decided to scope out my lower abdomen.

Discovery and Validation

She saw nothing, but for some reason, she decided to go further up, and when she did, she found a 4cm mass on my upper abdomen. She quickly left me alone in the room and came back with my CT from May and cussed out loud. In writing, it said something was found on my upper abdomen. Immediately, she questioned me about why I didn’t come in sooner and why they had never told me. I didn’t have an intelligent answer since they said everything was normal as far as I knew.

Then she informed me that she couldn’t address it because it appeared to exceed her scope of HPV practice. She advised me to consult with my GI and a urologist, which I did. The CA125 specialist urologist couldn’t offer much help other than testing, stating he couldn’t assist with it. With my GI, we conducted an EGD and colonoscopy, which did not reveal this mass. I returned to my PCP, who opined that he thought it was all in my head and recommended I see a psychiatrist.

Path to Diagnosis

At this point, I’m feeling pretty damn insane and bawling. I’m unstable at work and can’t focus. I bargain with myself—see my OBGYN one more time to see what she thinks, and if she says the same thing, then I’ll check myself into a psych hospital.

I called my OBGYN doctor again and got an appointment with my actual OBGYN doctor. And I tell her everything, and she empathises and says let’s do a transvaginal ultrasound instead. I agree, not knowing how invasive and uncomfortable it is, but I’m desperate and want answers. We do it, and she sees not just one mass but two and grabs my hand to tell me I have to go back to the oncologist. I’m in tears, but out of joy and fear because while I’m down that familiar HPV path, I’m relieved to have an answer, and I’m not crazy. She orders an MRI, another CT, and a transvaginal ultrasound at the hospital to get more thorough answers.

Unexpected Diagnosis

I see my new CA125 test oncologist (the old one left), and she reviews all my imaging. She confirmed I needed to have these masses removed and also get a hysterectomy. We set the appointment for surgery, and I go in. What didn’t happen was surgery. When I woke up, she told me and my fiancé that she found cancer spread throughout my abdominal cavity, touching my diaphragm, colon, and a few organs. So, instead of removing anything tested with HPV then, she recommends we wait a week so she can discuss this with her peers, and we will follow up with her in 2 weeks.

Facing New Realities

My appointment comes up, and she tells me we need to have surgery now since my wedding is December 1st, and she will be out most of December on vacation. We agree and set everything up for CA125 induced surgery a week before Thanksgiving. I had my debulking surgery and spent 5 days in the hospital recovering. My oncologist followed up with me and said everything went well, I don’t need chemo, and we can go straight to estrogen blockers. I felt like my nightmare was over.

And I felt free.

I have one last visit with my CA125 oncologist the day before my wedding to follow up on my recovery and incisions. I’m feeling great and nervous because tomorrow is the big day, and I’m ready to put all this HPV disease behind me. My oncologist tells me everything looks to be in order and healing well. However, there is something else. She tells me I need to do chemo and that I have stage 3 low-grade ovarian CA125 related cancer.

I’m stunned. And I’m crying before I know it. I’m getting married tomorrow.

I have my rehearsal dinner in 2 hours with my wedding party and families. How will I face them and not cry?