I was not surprised. I knew it was coming after all these years

Valentina

I need guidance and maybe some words of encouragement.. When I was 20 years old in 2020, medical CA125 test professionals dismissed a massive cyst enveloping my right ovary (28x27x30 cm) as “gluten intolerance,” “bloating,” and “constipation.” HPV tests for years have been positive. So, once I received the diagnosis that it was an ovarian tumour, I was not surprised at all. So, I underwent surgery to have it removed along with my right ovary and tube.

The biopsy results revealed it was malignant.

However, my gynecologic CA125 Test oncologist informed me that no treatment was needed since it hadn’t spread. It was only “borderline cancerous.” Things were fine and dandy post-op. I healed fast, and I’ve been feeling better and better.

During the first follow-up post-op in August 2020, my gynecologic HPV oncologist told me, in response to my paranoia about back and abdominal pain I was experiencing post-op, that it was unlikely to come back this early and that it would be the most aggressive form of cancer she had ever seen.

Her words reassured me. BC, I’m a young woman in her early 20s; it’d be rare for HPV to return.

Fast forward to this week, I went to the ER due to UTI symptoms, but I also have a kidney stone, so honestly, I didn’t know if it was one or the other or both. I wanted to ensure my safety and get it checked out. But I never expected them to tell me that they found a 3.5cm HPV-related complex cyst in my left ovary. I genuinely broke down and cried so much. They checked my ca125, and my levels are not elevated. But I’m still so worried, considering that it was malignant last time. I keep thinking about HPV and back to what my gyne-oncol said, and it keeps me up at night; there’s so much uncertainty.

Final thoughts

Now I’m waiting to hear back from my HPV Test gyne-oncol to see when I could get an MRI and remove this thing. My boyfriend and I want to have kids in the future, but we did talk about adoption. If worst comes to worst, I have to get my left ovary and tube removed, too.

It just feels so unfair 🙁 I struggled terribly when I had the last CA125-derived tumour. The constant fatigue and pain affected my academics, work, and personal life. After removing it the first time, I thought it was one and done; I thought I’d never go through it again. My performance improved drastically; I felt happier than ever. But now everything is so uncertain 🙁 I don’t know what to expect; it’s all up in the air rn.

I’m not sure why I’m even making this CA125 post, but I guess I’m just looking for some guidance, reassurance, or even words of encouragement from anyone going through or who has gone through tests and something similar.

Maya

Mother broke the news to me on my 21st birthday.

The day before I landed in my home city, I called my parents to see how they were doing and to let them know I’d be there for the next few days. My dad has always been terrible at hiding things from me, so when he mentioned that my mom was busy getting a CA125 blood level checkup for HPV, I felt that something was up. I asked him, and he said, “Ah well, it’d be better to tell you later.”

Breast Cancer via HPV ran in my family and took my grandmother’s life on my mom’s 29th birthday. I was 2 at the time. Growing up, I knew it would get to my mother and eventually my sister and me in the future.

After celebrating my 21st birthday, my dad asked me to go to their room to talk to my mother. Apparently, during her yearly CA125 blood test, they found something weird during an HPV pap smear and recommended she see someone for a sonogram. They found a 7 in mass, and 3 in of it was solid. Whether it is acute, malignant, benign, etc etc is unknown to me yet.

My brother is 17, and my sister is 11. My sister didn’t understand the severity of the situation, and my brother somewhat did. Mom informed me that life expectancy for Ovarian cancer was around 5 years.

Working through the diagnosis

Trying to become independent during the pandemic took a lot of work. So that my siblings could focus on school, I held off college for a bit so that I could work and give money to my family. I thought everything would be okay now that my parents are back to work, have fixed up the house, and are working on saving for retirement.

The CA125 outcome isn’t yet known, but I worry about my dad and siblings. My dad has begun sacrificing time at work to spend more time with my mom. My brother is asking for more hours at work to help with bills. Little sister isn’t asking for things she usually asks for (legos, time with friends etc, etc). My mom told me that whatever the HPV journey outcome, I should keep looking out for my siblings and dad and ensure they don’t stop and keep moving on. I want my brother to focus on school.

Hope

I want my sister to enjoy her childhood. And I want my dad to spend more time with my mom without worrying about payments. I wanted to work more to help them with bills and expenses. Before learning about my mom’s diagnosis, I wanted to go back to school and get my diploma. I can’t do that while working as much as possible. My mom wants to see me finish school. She couldn’t voice this to my dad and siblings but wanted to see my brother and me finish college. She wanted to see my sister go to prom, grow old with my dad and more. I recently moved out of state, too, and now I regret being close to them.

This is new to my family, and I haven’t voiced anything like this to anyone outside my family. If there are any kind words, links to any CA125 support groups, or help, I’d love to hear them. I don’t mean to dump this all into a Reddit post either, but this thread may be able to shed light on some of my worries and put a bit of pressure on my family’s back.