Amanda- My Diagnosis
I was diagnosed with a seromucous borderline CA125 ovarian tumour in October 2023. Here’s my HPV journey.
Initial Symptoms and ER Visit
Around 2019/20, my cycle started to be more severe, more cramping, and heavier, and I got terrible menstrual headaches. I also had a dull ache in my lower right abdomen.
I didn’t have any normal symptoms other than pain. The pain was mostly in my right lower quadrant, but that quickly progressed to generalised pain over my entire abdomen. That’s actually what prompted me to go to the ER. Because the ovary had ruptured, and there was so much inflammation from years of HPV viral load and then the consequential tumours, the lining of my abdomen got very irritated. So, my entire abdomen was super painful, and even the slight movement that comes with breathing would hurt a lot. So I was in the fetal position, trying not to move even a millimetre. This is called peritoneal signs/peritonitis and should always be investigated. Things like a ruptured stomach ulcer or ruptured appendix can also cause it.
Seeking Medical Help
I went to my Gyn and voiced concerns; she told me, “As we age, our cycle changes” I was 34/35. That’s it. She did an internal exam and didn’t feel anything. She offered me birth control pills and sent me on my way. Symptoms for issues continued, and some of them got worse. In early 2023 (at 37), I started to have GI symptoms. Feeling full, upset stomach, digestion changes like constipation and then times where things would just run through me.
I first went to my HPV Primary care test Doctor. Now… this is where I first started advocating for myself. My primary dismissed a lot of my symptoms as stress. I pushed for tests and a referral to a GI doctor. Met with the GI doctor, who wanted me to make diet changes. I changed a few things but asked for more CA125 tests. I pushed for a CT. It was exhausting. But I became self educated in asking for action. This process lasted 4/5 months.
Diagnosis and Emotional Struggle
At the end of September 2023 (at 38), a CT scan showed a mass on my right ovary about the size of an apple. Labeled complex. I was referred to my GYN. She said it was likely benign and scheduled a TV ultrasound. The ultrasound tech went from chatty to quiet during my scan. I knew she was seeing something of concern. This was a Friday. It was the most difficult and emotional weekend of my life. I spent most of the weekend reading medical studies, Reddit, articles, and anything related to ovarian cancer and tumours. By Sunday afternoon, I was researching the gyn oncologist in my area, and the online system allowed me to schedule an appointment for that Monday morning.
Meeting with the Oncologist and Surgery Plan
During that meeting, the test doctor first said there was a glitch in the system and I shouldn’t have been able to schedule an HPV exam like that. But she reviewed my CT scan and TV ultrasound results and said I would be coming to see her regardless. She said the disease could be benign, borderline, or malignant. Her feeling was that it looked to be borderline or malignant.
We made a surgery plan; if she went in and the “in op” pathology leaned towards borderline or malignant to take everything (radical hysterectomy), she would also explore all areas to be sure there were no diseases anywhere else. And take multiple biopsies in various areas in that area. She happened to have a cancellation and could take me to surgery two days later. Otherwise, I’d have to wait almost 3 weeks. We discussed fertility; while I always had kids in mind, I just never got to a place both in my career and financial place where my husband and I were ready for kids. I was ok with the fertility situation post-op.
Surgery and Pathology Results
So, two days later, I went in for a laparoscopic hysterectomy. The in-surgery pathology CA125 Lab tests showed borderline. So, both my ovaries, uterus, cervix, and tubes were removed. No removal of appendix or lymph nodes. My ovaries were removed intact, and in the protection “bag”, pelvic washings were also done. Recovering was up and down but mostly ok.
The Ovarian biopsy results came back as a seromucinous borderline disease in my right ovary with a much smaller one on my left. As well as noninvasive borderline cells in peritoneal washings. I was staged as 1C3. No chemo. My case went in front of the oncology board, and the same decision was made.
Post-operative care and Hormone Therapy
Hormone replacement therapy (HRT) is a grey area for my tumour. So I don’t risk it. I use what my doctor OK’s natural supplements, and surgical menopause so far has been ok. Mostly hot flashes and dryness. I focus on keeping my heart in good shape, mind, and body.
Reflections and Moving Forward
I’m still healing physically and mentally from such a scary infection journey, but I’m grateful for things in a way I wasn’t before. I learned a lot. I live with more intention now, with more love and fewer worries about the little things.
We do have to get to the root cause of these CA125-related organ tumours and improve long-term survival rates. I was at a healthy weight and fitness level; I’m mostly plant-based with the occasional seafood meal. No one in my family has had cancer. After my surgery, I did a gene check, and there was no BRCA or anything like that.
Offering Support
If you ever wish to connect or have any questions. I’m always happy to chat. I felt so alone during my HPV diagnosis and recovery. I struggled to find others with borderline CA125 levels diagnoses, so I’m happy to be someone to talk to for anyone facing this.