Real People Stories – Valerie

Experience with fibroid being mistaken for ovarian CA125 cancer before I got a test. I’m new here, but not to fibroids. I (49f) think I’m looking for some reassurance. (Maybe not able to hear horrible HPV Test outcomes right now, which is maybe unfair to ask). I’ve had fibroids forever, of the kind that made the sonographers say, “Wow, that’s a big fibroid”, with every ultrasound when I was pregnant with my son eight years ago. They were never symptomatic, never any suggestion that I should remove them or for any additional tests like a CBC test or any other ovarian marker test.

This summer, I was going to go on HRT, and my CBC Panel Doctor suggested we check on the fibroids before he decided on the dosage. Still not symptomatic, or at least not hugely so. (Like maybe some minor bloating or discomfort? Maybe some very regular spotting at the end of my period? Weight gain, but not a ton, and I like bread a lot.) At the ultrasound, they were concerned because they said there was a 27 cm pedunculated fibroid. As I said, it was big, and they couldn’t find an ovary (I think the fibroid was in the way). The radiologist asked for an MRI but said he wasn’t concerned about cancer or tumours. My CA125 doctor agreed and said to schedule an MRI, but it wasn’t an emergency.

I had the MRI last week, read by a different radiologist, and all of a sudden, my giant fibroid is maybe an ovarian HPV-derived tumour, and I’m off to an oncologist (though he said that was because he did the kind of surgery I’d need), and maybe it’s tumours?

At first, the doctor said, “It’s probably a benign situation.”

When I asked if I should panic, he said he didn’t know, and he’d say the chance it was ovarian HPV-created cancer was 50/50. However, he repeatedly said he wanted the oncologist to read it to tell us if it was benign.

Essentially, the fibroid the first radiologist was pretty sure was pedunculated. They are now afraid it is on the ovary instead. Has anyone had a giant fibroid mistaken for an ovarian tumour? A Google search suggests this is a mistake that does get made, and it seems unlikely that the HPV virus created this giant fibroid that has been there for about a decade would suddenly be on my ovary instead. But my CBC doctor (who has been new since my pregnancy, so he wasn’t around for all the scans of the huge fibroid) is pretty experienced and knowledgeable, and he backtracked on how problematic it is. I have a CBC appointment to see the oncologist in a week, but in the meantime, I am more terrified than I have ever been and have to try not to burst into tears every time I look at my 7-year-old.

The waiting is torture.

Any HPV Viral load experiences with this kind of thing or reassurances would be much appreciated. I met with the oncologist, and he is certain this is a fibroid, not an ovarian tumour, and is nearly certain it’s a benign fibroid. He is afraid that it has grown so fast that it might be a rare malignant fibroid. I think it’s been growing for a decade and is not growing quickly. However, at 28 cm, it has to come out, and he wants it, and all the parts it’s attached to, out sooner rather than later, like in almost exactly a month.

He’s not willing to cut anything it’s attached to. I appreciate the conservative approach but am not thrilled about the giant vertical incision. (The HPV Guy also specialises in tests and minimally invasive surgery, so when he says it has to be like this, I believe him. I think he’d do it the other way if he could.) And the childcare dilemma it presents, as we have an 8-week-old. How the hell do I care for a 12-week-old baby with a five-inch vertical incision? We’re going to have to find a babysitter.

In other words, It is not an ovarian HPV tumour. Still, big subserosal fibroids can be mistaken for tumours and scare you absolutely to death with CBC results off the charts.


Endo and cancer…..

I’m freaking out.

A little backstory: So I was CBC Diagnosed with endometriosis 2 years ago after my first lap procedure. I had a 12 CM chocolate cyst on my left ovary. While taking that out, they cleaned out from many endometriosis scarring. The last time I was on birth control, I tried to commit suicide, so I understand that I’m very sensitive to birth control. I have been working with a holistic health practitioner to use various herbs & supplements to keep everything at bay.

Seven months ago, at my annual, my GYN felt another cyst on the same ovary. He wanted to wait to see if it was growing before taking any surgery measures. So last month, he sent me for a follow-up ultrasound, and the cyst has stayed at a steady 6 cm. He sent me for a ton of blood work, including the cancer marker CA-125. That test specifically came back “just a little elevated”. So today, I’m going for an MRI with and without contrast.

I’m just ranting/ looking for support/ freaking out. I’m trying to stay positive. Has anyone else had a slightly raised CA-125 and not been diagnosed with cancer? Thanks for reading/ listening. 😙


My GP is lovely, but now I’m nervous

I went to my OB/GYN office for having sudden irregular periods. My hormones have been weird for about 5 months, and my last cycle was 16 days after ovulating on day 6. I convinced myself it was ovarian cancer. The OB I saw said, “You don’t know your hormones are off”, and “How would you know if you ovulated?” I used to track ovulation while trying to conceive my daughter, and my pain always lined up with a positive ovulation predictor test. Not only that, my period would come about 10-14 days after my pain.. but whatever.

I have a surgery CBC consult set up for next week with my OB office (different doctor). So I went to my GP yesterday. She was like, yeah, that’s not normal. I could draw your hormone levels, but I don’t have any good way to interpret them because they vary so much during the day, your cycle, etc. I can do a full CBC Profile test panel report and check your thyroid and ferritin. Just for your peace of mind, I can draw a CA-125 to ease your mind off cancer.

I appreciate her doing what she can

But I’m still nervous that my cancer marker will come back elevated. I know it’s very unlikely, given I’m only 32. And there is no history of ovarian or reproductive cancer in my family. Still, CBC Blood tests show the situation. And I know my body isn’t normal, so of course, my brain/medical anxiety is trying to convince me I’m dying.. sometimes I wish I could just shut my brain off.