Everything has changed, my body’s shutting down. It’s not fair.

Real People Stories-Alyssa

Scared about the cancerous screening ordered

I’m 31, and I am overall very healthy with no major health or HPV test issues, but I have always had heavy and sometimes painful periods growing up. I believe my mother had endo and needed a partial hysterectomy in her early 50s, but there is otherwise no test history of breast/ovarian etc. cancer in my family. I started having some sharp and sudden pains in my pelvic area about a month ago, so I made an appointment with my CA125 gyno to test them out. They weren’t super alarming, but I figured I should go anyway.

She did a hpv pap screening and a physical exam and said everything looked normal. But she would schedule a transvaginal US later in the month to be safe. I had my HPV appointment test earlier this week, and the technician found a 7cm x 7cm odd mass on my left ovary. She also asked if my family had a history of endometrioma, endometriosis, or cancer.

Surprised Results

The CA125 doctor was surprised that she missed it in the physical exam and said it looked like blood inside with some slight fluid present. She also said that it didn’t look like a typical ovarian cyst. They also mentioned something about some calcification being present. She said she would order some CA125 blood exams to understand better. She scheduled another US in 8 weeks to check on growth/shrinkage and may refer me to an HPV women specialist depending on my blood test results.

I just saw in my patient portal that the tests ordered were CA125, Alpha-Fetoprotein (AFP), CA 19-9, Carcinoembryonic antigen (CEA), Gonadotropin chronic (hCG), Inhibin A, and Lactate dehydrogenase (LD, LDH). When I looked these up, most seemed to be screening for cancer, and I was nauseous with fear and anxiety. I should hear something today or early next week regarding the results. 

Bruno OC

My wife, my princess, has entered hospice for ovarian HPV cancer. I want to share her story to help someone else hopefully. Her first symptoms were constipation, bloating, and the need to pee a lot. Her primary care and gynaecologist did the probiotics routine and checked for a UTI. Even with her gynaecology HPV exams becoming incredibly painful, no one thought to do a CT scan or even an ultrasound until she’d had these symptoms for almost a year.

By the time the HPV cancer was caught via an ultrasound, one of her ovaries was over 2 pounds. She had emergency surgery to remove it and then went through the first cycle of chemo like the champ she is. Everything seemed fine; I even have videos of her ringing the bell for cancer-free. In the follow-up appointment, we asked about a maintenance chemo drug given CA125-related cancer’s tendency to return, but the doctor waved it off as the standard of care.

Less than a year later, it was back and had metastasised.

A second cycle of chemo showed it was now platinum-resistant. So she tried two more chemo treatments, but neither worked. But still, she was as scrappy and optimistic as ever. We’d been researching trials and other options throughout the HPV journey, so hope remained. But ovarian cancer tends to cause bowel obstructions that can’t be treated. In the space of a couple of weeks, everything has changed. Her body is shutting down now, and all we can do is treat the CA125 and many other symptoms. It’s not fair.

I understand second-guessing is a normal stage of grief, and I don’t know if the outcome would have changed if we’d had pushed harder for the maintenance chemo or if her doctors had thought to request an ultrasound back when the symptoms first started. But I am begging you all, you know your body best. If something is different, request a scan or ultrasound to check; don’t let the CA125 doctors handwave it away. Hope that it’s just something routine, but please don’t take the chance.

Morgan

I was diagnosed initially with a checkup for CA125 endometrial cancer stage 1 grade 1a endometriod adenocarcinoma in October of 2023. I had a total hysterectomy and bilateral salpingo-oophorectomy in January of 2023. They removed everything, including several lymph nodes and the omentum. All of that came back benign except my right ovary. I was then diagnosed with synchronous cancers, ovarian and uterine. Same grade stage and type of cancer but both primary cancers at once. My CA 125 was 143 at the time of surgery. Now, 3 months later, my CA 125 is 21. I only had HPV tag surgery. No other treatment was necessary. I was supposed to see my oncologist this past Wednesday, but she rescheduled.

I received my CA125 lab results, and I’m just wondering if I should be concerned. I’m guessing since the oncologist rescheduled that she’s not particularly worried. I’m just wondering because my results are higher than 10 and nearly 22, these can be a sign of possible recurrence post op. Which I admit is me googling sh*t. My anxiety has not lessened since surgery, and I still feel a sense of dread.

It’s been this way since before I was diagnosed that something was wrong.

The only reason all this was found in the first place was because I kept pushing for answers even after being dismissed. I should mention the only symptoms I had for uterine cancer were PCOS, obesity, and starting menstruation young. The rest of my symptoms were of ovarian cancer, and I had all of them.

 I’m still experiencing a lot of tests and the CA125 symptoms I had before I had surgery, i.e. exhaustion all the time, nausea, bloating, weight loss, horrible gas pain, lower back pain, dull, constant hip pain, bowel changes, etc. After my hysterectomy, I had a UTI and ended up at the ER. They did a CT scan and found that I had a 4cm free-floating ovarian cyst in my right pelvis. Well, I just had surgery, so I don’t have ovaries. So, I wondered what that could mean. I saw my oncologist about it, and she says that she looked at the results and the scan, and it’s nothing, just leftover material that banded together post-op. That’s fair, I guess, but she also wants to do more imaging, which I will ask about next Friday when I see her again.

All this time, I’ve explained to her in test results that I’m still having all these HPV symptoms. I’m being dismissed, “That doesn’t have anything to do with your surgery.” The most she’s done for me is give me pelvic floor PT, which hasn’t changed any of my ongoing symptoms. I was curious about recurrence when I got my CA125 test report back. I came upon some info while googling that in certain circumstances, i.e. type of ovarian cancer, pre vs post-op, stage, grade, etc., sometimes a result over 10 or 22 (depending on cancer type, etc.) It can indicate recurrence.