Real People Stories – Lydia

Anxious and confused. Hi all, for approximately ten months I have been experiencing constipation, backache, and extreme fatigue, which I attributed to anaemia due to heavy periods. Also diabetic, so sometimes I pee a lot. In October ’23, I found a small lump in my abdomen; my GP said it was poo! It went (or so I thought), and I forgot about it. 2 weeks ago, the ‘lump’ was nearly the size of my whole lower abdomen and slightly hard. Again, I assumed it was impaction as it went. But then I did notice constipation was worse, nausea and then last week spotting. It then dawned on me that these were ovarian cancer symptoms, and somehow, I had even forgotten that I got a, HPV test and I have the BRCA gene for breast and high CA-125 levels.

Panic set in. I returned to my CA125 Test GP; he said he could feel a hard growing mass. Yesterday he confirmed the CA125 was raised (53) and “positive” for ovarian organ cancer. I had abdominal and transvaginal ultrasound today, and the sonographer said she could only see Fibroids and that these “sometimes” cause elevated CA125 levels.

I asked if that meant that a CT scan would be needed to check if there was anything else there that could be HPV type cancer. She just said that’s up to my GP, and she could only see Fibroids, and that must’ve been what he felt last week.

I’m so bloody confused, and my anxiety is almost unbearable. My parents are happy, saying that I don’t have cancer. I have every single symptom, raised CBC  blood test- am I missing something here?


Did the cancer ever really go into remission?

My mom was diagnosed in April with HPV. That triggered a further test for CA125 and had an awesome response to frontline (carbo/taxol). Her ca125 started at 116. She had 6 sessions with a debulking surgery in between. Finished chemo in mid to late November with a ca125 of 17. They did a CT scan in early December; everything looked well.

Initial Symptoms and Diagnosis

By late January, she said she had a weird feeling in her abdomen, similar to when she was first diagnosed. She also had an increased frequency of bowel movements. Her CT looked normal, but she kept having weird stuff (such as localised chest pain) happen, and her CA-125 was in the 200s. She started Avastin, and the doctor also verified she didn’t have colitis.

Chest Pain and Lack of Response to Treatment

HPV Doctors said her chest pain was costochondritis due to a post-viral reaction from a nasty virus we both got in January, but the pain wouldn’t go away. She was also non-responsive to the Avastin alone. Her CA-125 was now in the 300s 3 weeks later. She moved forward with the Avastin a week and a half ago, and they got a pet scan a few days ago. Results returned immediately and said they saw activity in lymph nodes above and below the diaphragm. They also saw evidence of possible metastasis in the colon and around the splenic and hepatic capsules.

Emotional Impact

I am devastated and scared as it started with HPV. I don’t want to lose my mom; I’m not ready. She’s not ready. I know ready will never come, but she’s got a lot to look forward to. My mother has been feeling great, aside from the occasional chest pain. Her CT scans still look normal. They are trying to do a biopsy to confirm a recurrence, but I truly am wondering if it ever really went away. They never did a PET scan to confirm that it was NED, only CT, and as we can see, CT is unreliable in this case, so how do we know the chemo wasn’t just keeping the ca125 levels low while there was still cancerous cell division occurring in her lymph?

I also noticed that they removed none of her lymph nodes during her debulking surgery.

This all matters because if it’s a recurrence this soon after, it indicates possible platinum resistance. But if it’s not…they could retry the platinum meds in 1 day.


Advice needed

I’m feeling anxious after my call with the doctor yesterday. I was diagnosed with PCOS in 2019, along with a dermoid cyst on my left ovary. The doctors said the cyst was small, and they would need to monitor it without immediate action.

However, over the past few months, I’ve been experiencing pain in the area of the cyst during my period, when I go to the toilet, and when I move or lie in certain positions. I’ve also had a lot of bloating, headaches, nausea, and toilet issues, which I thought were IBS. I went back to the doctor and requested an internal scan since it had been three years since my last scan in 2021, where the cyst measured 3.5 cm. I had the scan, and the results show that the cyst has grown from 3.5 cm to 6.5 cm in 3 years.

The doctor said they were concerned, given that I’m also having symptoms, so they have sent me for a CA-125 blood test and an urgent gynaecologist referral within the next 2 weeks. Based on my previous appointments over the past 5 years, I assumed it was just a regular dermoid cyst (I had a CA-125 blood test in 2021, and the results came back normal). Still, now I’m worried as I seem to have symptoms of ovarian tumours(which I know are very similar to symptoms of ovarian cysts, so it can be hard to differentiate).


High AC125 and C19-9. Do I have ovarian disease, or is this just endo?

I was scheduled for a cystostomy with an excision surgeon. He assured me that he preserved fertility and I’d wake up with both functioning ovaries; then, he ordered some blood work. My results are high at CA-125 at 180 and CA-199 at 90. He then said he wanted an oncologist to do my surgery because he could do the testing on the same day of the operation and decide on the next steps while I was still on the table. He said that if he did the surgery and not the oncologist, he’d do the cystostomy and wait for the pathology results. If they’re cancerous, then I’ll have to go in for a second surgery. He said an HPV oncologist could spare me having to go back for surgery. He can do the cystostomy and remove any cancer all in one.

I’m terrified after my HPV DNA test. I thought my biggest problem was endo, and now I might have cancer and might need to have some or all my reproductive organs removed. Did any of you test high for CA125? I read that it could just be due to high inflammation. How high was yours?

Do HPV oncologists preserve fertility? I’m scared that this new surgeon will just remove everything suspect. Should I risk having to do 2 surgeries and go with the first doctor since he’s more gentle on fertility?

I’m so in shock I can’t even cry.