Real People Stories- Violet

A large cyst/tumour was found on ultrasound after I found I had HPV in a test. Pain for about a year. After a CT scan, the CA125 test levels returned elevated. I am 25 years old. I had a baby via c-section a year and a half ago, and since then, I’ve had lower abdominal/pelvic pain. Since this is normal for a long time after the c-section, I ignored it. Recently I noticed it would hurt a lot, even soft touch. During my ultrasound, the tech had to call in another, more experienced tech because they could not locate my right ovary. There’s a large mass over it. My HPV doctor said it could be a cyst or a tumour, and we scheduled a CT scan to get a clearer picture of what was going on. She took some blood and tested it for many things, including the CA 125 cancer marker (I think that’s it; I could be wrong).

I came back well above the “normal” range… normal is under 35, and mine came back at 100. I understand that this marker is used to identify ovarian cancer. It’s not enough for a CA125 diagnosis, but it is a good indicator for measuring cancer HPV treatment efficacy. I am freaking out. If it is a cyst it’s large enough to need surgery to remove it. My liver enzymes came back elevated, too, and I’ve had a HORRIBLE cough that does not go away no matter what medications, steroids or inhalers I’ve tried. It’s been over 2 months of the cough. Any HPV info would help; I wonder if anyone has experienced something similar to what I am going through. Happy holidays!

Caroline

Ovarian cancer at 26?

Hi, my partner, who is 26 years old, has had some really weird symptoms; we went to the ER yesterday and got some concerning news I would like some clarity on.

They have had some rectal bleeding the past couple of days (as well as all over body/nerve/muscle pain off and on for months now. They also have had sharp extreme back pain in the middle of the night recently), so I took them to the ER. There, they did routine bloodwork and a CT scan for abnormalities.

The routine bloodwork returned normal, but the CT scan revealed a 6.5cm mass on the patient’s left ovary.

The CT report says “6.5cm mass which appears to be arising from the left adnexa appears predominantly cystic. However, given the size of this mass, further evaluation with MRI may be useful. This has elevated Hounsfield units greater than expected for a simple cyst and displaces the sigmoid colon towards the right-sided pelvis.”

After getting these results, the OBGYN requested another blood test to check for cancer antigens. My partner’s CA-125 test results returned on their chart in the middle of the night as elevated. Their level is 65.

With the elevated CA-125 result and the Hounsfield units, should we be concerned about cancer?

One of my best friends suddenly passed away on Christmas Eve, so I’m having a very difficult time coping. I think it’s affecting my ability to think clearly about this matter.

Sadie

I’m really worried because my gynaecologist ordered a CA-125 blood test for ovarian-level cancer. Should I be concerned? I was diagnosed with adrenal PCOS by a functional medicine doctor in 2019, and I have elevated DHEA-S levels. I’m 45 and perimenopausal. When I told my gynaecologist about the PCOS diagnosis, she sent me for a transvaginal ultrasound. A 4.1cm cyst on my right ovary was discovered with a “Simple nature consistent with a benign aetiology.” They recommended no follow-up.

Fast-forward to last week. I requested a referral for a transvaginal ultrasound. This time, the CA125 and Lab results showed a 4.1 cm right adnexal cyst with thick septation and shadowing calcification. Given the appearance, further workup should include a short-term interval follow-up ultrasound, a pelvis MRI with and without contrast, or further clinical CA125 evaluation for potential neoplasm.

I reached out to my gyno office to clarify what this means. All I got was the referral for the CA-125 labs and a follow-up appointment on Dec. 29th. Of course, my brain is going to a worst-case scenario because I can’t talk to anyone who knows what this even means, and Dr Google has taken me to some dark places on this matter.

I’m hoping to get some clarity from women who have been through this so I don’t have to spend the holiday season with the intense anxiety I’ve been feeling since receiving these results. Thank you!

Audrey

Ovarian Cyst CT scan

A pelvic ultrasound showed something in my mom, so the doctor ordered a transvaginal ultrasound for a better view. After this second ultrasound, they saw what they think is a cyst. She also had a CA125 test done, which came out to 293. Because of the findings our family doctor sent her to a gynaecologist but told us not to worry.

We went to the gynaecologist. She explained that she would have been worried if she had only received the pelvic ultrasound and the CA-125 result, but the transvaginal ultrasound findings didn’t worry her, though the CA-125 result did, kind of. So she sent for an emergency MRI, another transvaginal ultrasound, and another CA125 test to see if it would fluctuate.

They scheduled the emergency MRI for the beginning of April. They then moved it to the end of April because the machine broke, then moved it again to the beginning of May. The second test for the CA-125 levels dropped significantly to 51 (still higher than the normal range, but the drop was significant, thanks to God). The second ultrasound showed another HPV-related cyst, I think? I believe they’re both very small, like mm. She called my dad and said she wasn’t worried, but she sent her to an oncologist because it’s a standard procedure. To be extremely sure, my mom has a CT scan this Saturday for the oncologist.

For any doctors here, how worried should we be from the provided info? She doesn’t have any symptoms from this. We found it in the first place because of some upper quadrant pain she was having, so we’re now investigating her liver (she has elevated liver enzymes, but I assume that’s a different issue).