Especially in young people, do we get to the root cause?

Vanessa

Still reeling from how sudden this was, could use support.

I’m a 28-year-old medical student. About a month ago, I was fine, but I started having some CA125-style pain in my right lower quadrant. I thought, “I’m just having especially bad period cramps this month”, and then a couple of days later, it hurt to move at all. Went to the ER because I thought I had appendicitis. CT and ultrasound were suspicious for tubo-ovarian abscess (TOA). I was admitted for IV antibiotics. I had no elevated white count, fever, or any signs of infection. So they do an MRI test just to be sure, and the read comes back suspicious for adnexal malignancy favoured to arise in the right fallopian tube (i.e., likely ovarian organ HPV cancer).

Now, the oncologist who saw this report and the HPV radiologist who wrote it can’t agree on what this is. Onc is team abscess, and radiology is team cancer. So one says to continue antibiotics for 4-6 weeks to see if I get better and think about surgery then. He said, “Even if it’s cancer, you won’t lose time”. But this doesn’t sit right with me and the doctors continuing to debate each other. Meanwhile, I’m not getting better, and the CA125 levels and the pain is terrible. My gut tells me it’s not an abscess.

The doctor’s visit

By some stroke of luck, the chair of CA125 gyn onc (with whom I had rotated in the hospital a couple of years ago) remembers me and takes my case herself. Now I’m simultaneously starstruck (I’ve been a fan of hers since I first assisted her in the OR) and relieved that this ship will finally have a captain who knows where we’re headed. She gets tumour markers. My test result for CA 125 Level is 888, and my CA 19-9 is 3.342. Not good. At this point, her clinical judgment aligns with mine, and she wants to take me to the OR the following week to take a piece of this and see what it is (it was big enough that even if it were an abscess, I’d lose the tube, so surgery was the way to go).

But something tells her not to wait even a week, and I’m under the knife 2 days later. The best-case scenario would be an abscess, and I’d lose the right tube, maybe the right ovary if it were involved. They go in laparoscopically for easier recovery. Immediately, they saw that the right ovary had ruptured (causing the pain that brought me to the hospital), and there were tumours EVERYWHERE. Both ovaries, walls of the abdomen, appendix, you name it. So they open me up vertically with a huge incision from above my belly button down to my pelvis and take both tubes, both ovaries, my uterus, lymph nodes, appendix, omentum, and any tumours they can see.

Getting through the symptoms

Waiting for the pathology report was difficult, but it came back with seromucous borderline ovarian cancer stage IIIb. Now, what does borderline mean? There’s no consensus in the medical community as to whether this is considered cancer or not. Still, the takeaway seems to be that it isn’t benign but has low malignant potential, is slow-growing, and can progress to a frank malignancy. Think of it as Cancer Lite, not Cancer TM. And the CA125 test prognosis is excellent. No need for chemo or radiation. Hopefully, my surgery was curative, though tests show that HPV diseases can recur, sometimes as a full cancer.

I’m relieved. I am. I was lucky that I ended up with my CA125 trusted gyn onc and that she acted swiftly and decisively because, according to the path, it had started to invade and was close to becoming stage IV. Waiting those 4-6 weeks could have drastically altered my chance of survival. And I’m also lucky that my ovary ruptured because otherwise, I would have had no symptoms and wouldn’t have found out until it was too late. I understand why they keep calling this a “miracle”. And while I’m grateful I’m not dying, I also feel shitty.

Final thoughts

My husband and I got married only 3 months ago. I never wanted biological kids, or kids at all, until he and I started talking about it, and I genuinely came around to the idea mere days before this HPV shitshow. And now I’m menopausal at 28, may not be able to take too much estrogen because the tumour is ER+, have to take medical leave from med school and graduate a year late because of the major surgery and awful recovery (I still can’t walk much 3 weeks post-op), without hormones my depression has gotten way worse when it was just starting to improve for the first time, and I’ll need lifelong follow up.

I also have so much guilt, and I feel like a fraud. I know too much — the difference between neoplasm and carcinoma and between invasion and micro invasion — and I feel guilty receiving HPV support and resources from the oncology CA125 clinic because I feel I’m taking them away from the “real” cancer patients. Don’t know if I even belong here.

Anyway, thank you for reading this. I could use some help processing these thoughts and maybe a new perspective. Has anyone else experienced this? How did you work through it?

Christina

I found my ovarian CA125 Tests for cancer during nursing school by freak chance. This was 10+ years ago. Borderline HPV tumour left ovary -removed. Stage 1c right ovary -kept. Had a few surgeries in between. Tubes out and appendix. Recently had pain again on my remaining ovary, so I went over my last pathology reports from 2022… this time, the recurrence of R ovary was “borderline” after doing a ton of research; it scares the heck out of me because even borderline can grow into malignancy and no one’s to say how fast or slow. Do not feel bad for using resources, everyone’s story is personal to them.

You are going through a LOT mentally and physically. I’m now 35 and going through perimenopause for many years, with a barely functioning ovary that’s been chopped on many times. I use bio-identical testosterone replacement, and it’s helped my symptoms tremendously. I’ll consider oestrogen and progesterone when the time comes. It’s safer than synthetic (not everyone agrees, and that’s ok)…I prefer quality of life, especially given the circumstances. As I’ve said many times -with the increase in cancers, especially in younger people, we need to get to the root cause.

Avoid all things toxic in products and food that mess with hormones and cells and wreak havoc on our CA125-connected health. I’ve been through a lot and made it this far, even with setbacks; start again. I’m a huge fan of natural healing, ex, turmeric for HPV tumours, olives for ovaries; the list goes on… do some research, and give yourself grace and time to heal. Use all the resources you can, and advocate for yourself. Get second opinions…become an HPV test doctor. You can do this! Heal yourself. 🙏🏻💕