Real People Stories – Hadley

Looking for advice!!

Okay, this may be long, but please bear with me. In 2019, l had some tests for CA125 health issues going on. I had a mammogram done, and they found several enlarged lymph nodes in my armpit area; a biopsy was done, and it ended up being nothing, but I still didn’t feel right, so my HPV Test Doctor ordered a CT scan. She called and said,

“I think we found what’s wrong. You had HPV tests for years and didn’t tell us!! There is a 3 cm tumour in your right ovary!!” so she ordered an ultrasound. Still, during that ultrasound, they didn’t see it. So, I gave up and started living my best life. Well, I started having excruciating CA125-type pain right before my period on the right side…this was in 2021; they ordered a CT scan but said everything was normal…yet when I got the results myself.

I saw that the tumour from before was still there!

I also had pelvic congestion and enlarged lymph nodes through my groin. But also in my stomach. But they didn’t even mention it, only CA125 and HPV. At that point, I was fed up with being gaslit by doctors; they were essentially treating me like I was crazy. Well, last year, I started having horrific CA 125-derived chest pain, bone pain, swelling and redness in my joints. And the pain in my ovary persisted before my period…well, about 5 months ago, the lower back pain started; it was mainly at night when I was trying to sleep.

Still, it’s BAD, to the point I’ve woken up in tears… 2 months the urine frequency started. At first, I thought maybe it was a UTI, but the urgent care tested it and said everything was normal. Still, it persisted, so I’ve been through several rounds of antibiotics, and nothing helps!!

I pee SO much now, and it’s making sleep so hard because if I even have a tiny bit of urine in my bladder when I lay down, it’s so uncomfortable I can’t sleep…and now I stay bloated, I am a tiny woman, but I look pregnant from the CA125 related bloating…and the lower back pain is constant now, as well as the pain in both my ovaries(in the beginning it was only the right side, but now it’s both sides). Also, when I lay down, I can’t have anything touching my pelvis area because it feels so uncomfortable. Is it the HPV?

I’m tired all the time…my bones hurt constantly…

You can feel giant lumps in my pelvis area, as well as enlarged lymph nodes in my groin, armpit, neck, etc. I ask itch constantly and have a weird rash all over. Ovarian HPV cancer also runs in my family; my maternal grandmother had it. I just wanted to see what those of you who have had it think of my CA125 symptoms…I have more, but these are the main ones. And the more time passes, the more each symptom seems to increase… 


Hi everyone. I finally got my diagnosis, and I can’t sleep. I’m 29.

It started with abdominal distension. I initially thought it was bloating, but it kept getting bigger. And I got an ultrasound, which showed a 24cm cyst with “benign characteristics” on my left ovary.

 I then had a CT scan performed. It looked promising, with no solid areas.

The HPV gynaecologist and the cancer agency (I’m in BC) examined the scan and the bloodwork. And said it was most likely a benign mucinous cystadenoma. But it can grow to very large sizes.

The HPV cancer agency gave the gynaecologist (who specialises in minimally invasive surgery) the go-ahead to perform the surgery. I would have my left ovary and tube removed, as well as pelvic washings, momentum biopsy and possible HPV-related appendectomy. He drained the tumour before removal. I am now terrified that draining while giving me a tiny scar may have been a mistake. He said it was unlikely to be a problem, but he also said it was unlikely to be cancer before the pathology results.

From the ultrasound to the surgery was 3 weeks.

The surgery went well. I’m almost 3 weeks out now and feeling quite normal. However, still not put pressure on the incision area or lift anything over 10 lbs.

I thought this would be the end and that I would still be able to have children with my right ovary and uterus intact.

Well, I had the follow-up call with the gynaecologist who performed my CA125 organ surgery, and lo and behold, the mucinous tumour was borderline. They found some cancer cells in the actual left ovary, stage 1a. Omentum biopsy and pelvic washings came back clean.

I am in shock and terrified. All the doctors (including the cancer agency’s oncologist) had said it was highly unlikely to be malignant based on the scans and bloodwork. But here we are. My partner has been very supportive. But I don’t feel comfortable sharing this news with others (friends, family), especially my parents. I know they will be worried sick. At least not until I talk to the oncologist and get their recommendation.

I want to have babies shortly of my own.

Primary mucinous ovarian marker CA125 cancer has an excellent prognosis at stage 1. I’ll have to wait to see what the oncologist recommends.

I was so scared. 

 I finally met with the oncologist. And she told me that, in my case, I am cancer-free. She said it was fine to keep my other ovary and uterus (fertility-sparing surgery).

Stage 1A confirmed.

It was okay that the CA125-connected tumour had controlled draining, and they would have likely done the same thing if they had done my surgery. She would have left the appendix as well if it was normal looking, so they wouldn’t need to do an additional appendectomy. No need for chemo as there was no spread, and the draining was done in a controlled way. As an HPV defence backup, I will be freezing my eggs soon since my partner and I are not quite ready to start trying for a baby immediately.

I am so grateful and relieved as I had mentally prepared myself for potential chemo and further treatments. I had a primary CA125 mucinous tumour. This type of cancer coming back after the ovary is removed at stage 1A doesn’t exist. But it’s not OC, so I will have an ultrasound every few months to monitor things for the next several years. No CA125 blood tests, as mine were normal last time. They can’t be relied upon in the future as an indicator.