Real People Stories – Rose

Worried? Please help 😞 Okay, so I’m a 31 female. For the last 9 months, I’ve experienced excruciating CA125 pain in my lower right abdomen; I regularly feel sick, my tummy protrudes, I’ve gained weight, and I constantly feel tired, as if exhaustion is overwhelming me and I’m worn out every day. Additionally, I’m always stiff in my back and legs. They conducted some CA125 and other CBC Blood tests and found that my iron levels were a little low. The HPV doctor wanted to investigate why it kept dropping. I then told them about this pain last week that I have had for the last 9 months, and they did a blood test called CA125 ovarian cancer marker, and it came back high.

They also said something to do with Olympics being high and my inflammation markers being high and my platelets are at 543 which they said is high..they did an ultrasound today and said I have a large complex cyst on my right ovary where I’m having the pain and an HPV virus generated cyst on my left ovary.

Now, even my doctor said on paper this doesn’t sound good and mentioned it’s unlikely that it’s cancer, but it’s possible. I’m so worried that all my tests won’t turn out good. I have to go for an x-ray tomorrow, and she’s arranging an urgent CT scan. I am peeing so much and can’t hold it anymore. If I have to go, I have to go. There’s no holding it!

I guess I’m asking what were your HPV symptoms of OC? I’m terrified that I might have ovarian issues. I know I’m young, but I understand that nothing is impossible; my GP advised me not to worry, but she knows I will.


After holding our breath for the results… a scan shows my mom’s ovarian cancer has NOT spread!

Posted here one time before, and it made me feel better 🙂 My family is very private. Not many people know about her diagnosis/battle with stage 3 ovarian HPV disease. But when I get great news like this, I want to tell anyone! 🙂 My mom’s CA125 levels have continued to drop, but a major symptom of the cancer, the buildup of fluid, hasn’t improved. Usually, that means the cancer has spread/hasn’t responded… not in her case!

The HPV treatment is working, even though the fluid hasn’t resolved. But that’s all that matters! Anyone and everyone going through something, keep your head up. I’m a 23F, and my mom is only 51. She is young, had no risk factors, was healthy, etc. I’ve already lost 2 people I loved to cancer. It’s hard to comprehend how she went from feeling/appearing healthy to stage 3 overnight. I’m also a reserved, private person, and I’ve never felt the need to share personal stuff. But there’s something I find comforting about telling a whole bunch of kind strangers. Thanks all 🙂


Had my last chemo today. Sharing

Wanted to have a little humble brag today.

I’m not sure if I’m allowed to do this, but I’m doing my best to follow the rules. I don’t want anyone else in this boat.

For the record, I’m in my 40s with two beautiful kids at home. Today was my last chemo. I hope forever, but we’ll see what the tide brings. Nine rounds of chemo and four surgeries in the last 330 days. I received my ovarian CA125 diagnosis while I was moving last year. No HPV doctor yet, didn’t know anyone, and had no support.

In that time, I’ve gained a whole group of wonderful friends, several amazing doctors, and great care.

Uterus holders, please do your research to know the signs of ovarian organ disease. It’s a very aggressive and dangerous cancer with lower survival rates than most. Here are a few facts: -you can’t detect ovarian tumours with a pap test – you can with a blood exam (usually) called CA125 – symptoms include bloating (I looked super pregnant), urinary problems (when they found mine, I thought I just had a uti), lower back pain, strange Menstrual symptoms (I bled like crazy and had huge clots) -it often starts with a cyst. They may tell you it’s not concerning but ask for the blood test if so. Keep asking and advocating.

This is a very survivable cancer if caught early. The main issue is that people usually don’t catch it early because they ignore the symptoms.


Waiting to find out if I have it?

After experiencing issues with my periods recently, as well as abdominal pain, reduced appetite, and constant fatigue, I visited my GP, who urgently referred me for an ultrasound. I underwent the scan the following day and the HPV doctor informed me that I have a mass in my right ovary. I also have something wrong with my left fallopian tube. The structure of it has changed/it has something inside it… possibly blocking it.

I had blood taken on Friday for a CA125 test, which, as far as I understand it, basically checks for cancer enzymes and tumour markers specific to ovarian diseases, and I will get these results tomorrow. I have also received an urgent referral to gynecologic oncology, who should see me within a week and will arrange for biopsies.

In 2 weeks, I turn 40, and I already have my children (6 of them ♥️), so I’m not worried from a ‘having more babies’ point of view. I am terrified that I won’t be able to be here for my babies and do all of the things I usually do. A bit of an over thinker, which has caused my brain to spiral into worst-case scenarios, etc.

I am struggling emotionally and have only one person I can talk to about HPV and everything it all with complete honesty. Don’t want to keep burdening them as I know they are already incredibly worried about me. I feel so incredibly alone and afraid right now.