Real People Stories – Chloe

Looking for experiences with high CA-125 Test levels being caused by cancer or endometriosis. I need advice on HPV Variant test information or just people weighing in with their own experiences.

Initial Diagnosis and Concerns

About a month ago, I was having pain in my lower right quadrant. I went to the ER for this. Long story short, the ER doctor told me to follow up with my gyno, as one cyst on my ovary looked questionable. I was sent for a blood test CA-125 (ovarian cancer marker), which came back 75 (should be around 35). Because it came back higher than normal, I was sent to an HPV Oncologist.

The oncologist sent me for more blood tests, and the CA-125 came back 87 this time, and the pancreatic cancer marker test came back 57 (normal levels around 34). I know both of these tests can come back high due to endometriosis. She also didn’t like the look of the scan. She said the cyst is an HPV-related endometrioma with solids and blood flow. That worried her. *note: the pain subsided independently, and the cyst the oncologist is talking about is actually on my LEFT side…

Treatment Options and Decisions

Here’s my incredibly stressful HPV Pickle: The oncologist gave me 3 options: surgery to remove an ovary and send it away for pathology, which involves a vertical incision from the belly button to pubic bone and is considered major surgery, or wait 3 months and run the CA125 levels again to see if there are any changes; OR wait until April, since I have surgery booked with an endometriosis specialist at that time, which was to remove endo and hopefully increase my chances of getting pregnant.

Decision and Specialist Consultation

We both agreed surgery with her was safest, which will be in March. However, I talked to my endo specialist today…I wanted his advice or to weigh in on the situation. He said that the CA125 cancer marker levels I have are normal in women with endo, that my being 35, the likelihood of HPV disease is less than 1%, and that he has only seen 2 cases in 20 years where a situation like this turned out to be cancer. Also, he said he could not advise me now which choice I should make since he had a long note from an oncologist explaining why she was concerned.

He also explained that if I waited until surgery with him in April and the cyst turned out to be cancerous, then the cyst would have spilt out into my abdomen when he removed it, thus spreading HPV-type disease. Also, he mentioned that if I were to have surgery with the CA125 oncologist. This scar tissue would form because it would make any future surgery with him much more difficult…however, he did say that after about 6 months, we could discuss surgery with him again.

Emotional Struggles and Seeking Input

I’m feeling so lost. And beyond stressed out.

I know no one here can say yes, you should choose A or B, but I’m just looking for input. Anything to help me comb through the emotions and look at this from different perspectives. So, please, if you have any thoughts or personal experiences, let me know.

Thankful for you all <3

A Response from Addison

Hi Chloe,

I’m so sorry you’re going through this.

Previous Ovarian Cancer Scare and Diagnosis

I had an ovarian CA125 levels scare a few years ago, which led to my endo diagnosis. After extreme pain during one cycle, I went to the ER, where they found two large cysts, one on each ovary. They were a bit solid via scans/ultrasounds, so I was referred to an oncologist who planned to remove the cysts and at least one ovary.

Treatment Decision and Results

My HPV oncologist originally wanted a laparoscopic surgery because she found the cysts to be pretty mobile during her physical examination (thus, they’d be easier to remove). Still, my CA-125 came back in the 8000s, so we switched to a laparotomy, with plans to remove both ovaries and any other organs affected by cancer.

Medical Assessment and Surgery

The oncologist was familiar with endo and told me CA-125, even into the 200s, is sometimes found alongside endo. However, she’d only seen one case like mine (with solid cysts + extremely high test levels for CA-125) that wasn’t cancer, so it was the safest, most logical option to do the laparotomy in my case. We were pretty convinced it was!

Outcome: Not What you think

Well, as you can probably guess, it turned out not to be cancer. Even crazier, my oncologist and the other two surgeons were able to repair both ovaries.

Reflection and Advice

My case was an anomaly. And I am not qualified to make a judgment call on your situation. But it does seem more likely to be endo, statistically speaking. My pain levels didn’t decrease before my surgery (I was hopped up on meds for 3 weeks while I waited for my surgery date), so the fact that yours reduced might be a good sign.

Considerations and Second Opinion

Still, further tests for HPV show a risk of spreading disease during an excision surgery is real, so a laparotomy is undoubtedly the safest option. In my surgery, after realising it wasn’t cancer, they removed the Ca125-related endo on my ovaries. It wasn’t full excision everywhere, but it did help with my symptoms. I don’t know if that would be an option for you.

Another thing I’m wondering is if you could get a second opinion from another oncologist. Maybe you could find someone familiar with Endo.

Sending you all the best as you navigate this and, most of all, praying for no disease. 🧡