Help regarding CA125 cyst, long story, possible ovarian cancer as per oncologist. Hello, 36yo female. In 2019, I had tests and a ca125-related full organ hysterectomy because I had cervical adenocarcinoma and HPV cancer. I had a total hysterectomy but kept my ovaries. One year ago, I had a 9 cm ovarian CA125 cyst that was suspicious, but it shrank and was dismissed as cancerous.

Initial Symptoms and Hospital Visit

About four weeks ago, I started experiencing pain in my right hip. Felt similar to a kidney stone or horrible cramps. I went to the hospital. They weren’t able to find anything but a cyst on my right ovary that was 5 cm. The pain went away, so I was just happy to get out of there. There was mild to moderate fluid. I did have blood in my urine. One week later, the pain came back, and it was so severe. I went back to the hospital. I did have a severe yeast infection they found and a bacterial infection that was vaginal.

They weren’t able to complete my exam with the Pap because of how swollen I was. I was having extreme discharge. At this point, I had no blood in my urine.

Growth of the Cyst and Follow-Up Plan

This cyst has grown 1 cm. So now it’s a 6 cm thick wall with septations. My bladder was listed as moderately distended. I was given medication for the infection.

As per the hospital, I was to follow up in four weeks with another ultrasound. I have an ultrasound set up for next week, but I went to see my oncologist 2 days ago. She is concerned about ovarian CA125 disease. And she ordered me a CAT scan with contrast. She recommends surgical intervention for the complex. Cyst whether to biopsy or remove. Following the tests will help her determine.

Family History and Personal Fears

I’m scared. My mom died at 57 from cancer, and so many of my family members have had it. I know this could be another cyst, but. I never had a cyst until after the hysterectomy. And I mean, these are my first two. Isn’t that odd because I don’t even get my period? I’ve also been having an extreme pressure band all across my pelvis. I’ve been having a lot of discharge. And I’ve been spotting. I have to wait and hope it’s not insensitive to post here. I feel for everyone with this horrible HPV cancer; my grandma had it.


Rapid Belly Growth and Initial Diagnosis

In the summer of 2022, I noticed my belly growing rapidly despite maintaining a healthy diet and regular exercise. My OB/Gyn suggested a hysterectomy but would only perform it through open abdominal surgery. Therefore, he referred me to a gynecologic oncologist who performed my surgery, which included a laparoscopic hysterectomy, oophorectomy, and cyst removal. Before the referral, my CA125 levels were borderline for cancer, which the OB had anticipated due to the size of the cyst. 

By the time of my surgery, the cyst was so large that it had 25 litres of fluid that took 15 minutes to drain. In the end, the cancer cells were in the fluid of the cyst, so stage 1a for me and everything else was cancer-free. I still got chemotherapy as a precaution, and in the end, the CT scan and CA125 tests were normal, so it just confirmed that all of the cancer was removed during the surgery.

The HPV gyn oncologist was out of my health insurance network, so another oncologist took over the chemotherapy and is the one I will be seeing every 3 months for the first 2 years, then less frequently for up to 5 years. Because of the surgery, I lost 70lbs instantly. While I did gain some back thanks to the steroids given during chemotherapy, I still have more energy than I had in years. I was already perimenopausal before the cyst started growing.


Onset of Bladder Problems

In mid-Nov 2023, I began to have bladder problems like sudden urgency to pee as well as a drastic increase in frequency (every 30 minutes or so) without ever being able to empty my bladder fully. I thought I had kidney stones again cause the symptoms were similar.

A month later, I noticed bloating in my stomach that wasn’t going away. I thought it was due to my metabolism slowing down (I had just turned 44) and also because it was the holidays, and I was eating more carbs than usual.

Yearly Checkup and Initial exams

I had my yearly checkup in early Jan 2024, when the tests began. All CA125 and CBC blood test panels returned normal, except my CA125 elevated at 60. The pelvic biopsy came back normal. A pelvic ultrasound found a large 22cm mass on my left ovary, but the tech was unable to see my uterus or other reproductive organs cause the mass was obstructing everything, so they made me get a CT scan. We all thought it was a giant endometrioma and that I probably had endometriosis, which also causes elevated CA125 (I also had extremely horrendous periods my whole life, which is why we were thinking this).

Surgery and Diagnosis

Feb 2024, I had open abdominal surgery, and the mass was confirmed to be cancerous (via frozen biopsy). Ended up having a total hysterectomy and 17 lymph nodes removed. The mass ended up being 26.4 x 18.4 x 9.0 cm, which caused the bloated feel/look and urination issues as it was essentially squishing my bladder. They also found HPV-related cysts on my right ovary and a large fibroid in my uterus (or cervix, I can’t remember).

After surgery, I had HPV genetic test cancer markers (BRCA, etc.) done through, and everything came back negative.

As another person said, ovarian CA125 tumour symptoms vary and can be vague. All signs for me pointed to an endometrioma, but it ended up being ovarian cancer. I’m now in surgical menopause, which sucks, but that’s life!