Do you always get a Second Opinion?

Zoe

My cA125 symptoms were vague, but I got a test to confirm them. But looking back, I’d say I didn’t feel like myself for about eight months before they tested and diagnosed me with a viral load of HPV. I gradually gained weight, yet I wasn’t eating more than normal. Felt a lot more constipated, and my normal laxative wasn’t helping like it normally would. I was generally more tired in myself. I had a sharp pain one time during intercourse with my hubby, which, looking back, was a major red flag.

But I’m 49, and to be honest with you, my HPV doctor and I attributed most of it to the change in life. However, I became very concerned in late September and early October 2023 when I knew the CA125 disease was serious. I developed a very swollen, hard tummy that did not wobble or flatten out much when I laid down, and my bowels almost completely stopped opening. My tummy got so big I began to get breathless and, in the end, was sleeping sitting up to breathe. This is when they fast-tracked me to the HPV hospital and gave me a CT scan.

I was diagnosed with stage 3 ovarian type cancer on 14th October 2023.

Understanding the diagnosis

This sadly showed up something called ASITIES…….ASITIES is a thick fluid your body produces when CA125 cancer is active. It doesn’t cause you pain but much discomfort as it presses on your abdominal wall and organs, stopping them from functioning right. This is why my laxative wasn’t helping me poop. And why I was breathless… it was pressing on my diaphragm when I laid down, you see. It was a very scary HPV symptom; I thought I was dying. But in a way, I feel lucky I had ASITIES, as it’s the reason I got my HPV diagnosis. They drained it off that evening at the hospital, almost 5 liters of the stuff… it just reminded me of cooking oil.

I was ok for almost 2 weeks, then it started to return, and I didn’t stop producing it until I began chemo, which dried it right up as it killed off cancer cells. I’m now almost at the end of my 6 months treatment. I’ve had lots of chemo and 1 operation to remove my ovaries. I had a tumour on one assistant that took away my womb tubes and cervix…….also my OMENTUM……. please Google for info on what that is.

Final message

My op went very well. I have a big but neat and healthy CA125-related scar. I had my 5th chemotherapy today…….and my 6th and FINAL chemo is due on 18th March….. My doctors have told me I’ve responded excellently to all my HPV treatments, and the latest scan confirms that I’m cancer-free now. No visible CA125 disease shows up in tests, which is the best news you can get. The HPV treatment is brilliant. I’m having the last 2 chemo sessions in case any tiny microscopic particles are present which can’t be seen with the human eye.

 I hope I’ve helped you and not scared you to death. This HPV story’s moral is: Don’t be scared to pester your HPV doctor. Feel free to ask for a second opinion if your doctor needs to take it seriously. Know your NORMAL CA125 blood and body health levels, and be aware of any change that doesn’t feel right. 

Regards, Zoe

Ivy

My CA125 journey started on 11/30/20 when I was 42. I began bleeding, and it never stopped. The first HPV Test doctor I saw said I had tubal ligation syndrome. That is not a real diagnosis, so I decided he was a quack and found a female gynaecologist to see. She tested for tumour markers, all negative. The doctor did a scope into the uterus and took some samples for biopsy, all negative.

She gave me the option for a hysterectomy or a progesterone IUD. I kicked those options around for several months until August 2021, when I chose the hysterectomy.

Mind you, I already had chronic constipation, abdominal pain and frequent heartburn from Scleroderma, so I did not pick up on those symptoms being related to the bleeding. The doctor removed the tubes and uterus but left the ovaries, assuming my condition was benign. I did have fibroids, so it was fair that she would assume that was the cause. The pathology report came back clean.

After the surgery, the constipation was total. I couldn’t eat and had a lot of CA125-type pain. 13 days after the surgery, I developed a fistula and was leaking urine through the vagina. My vaginal cuff, left ureter, and sigmoid colon are attached. I went to the ER where my doctor met me and revealed the pathology report that came through that day. They found High-Grade Serous Carcinoma in both tubes with the capsules burst. It was spreading, so my doctor sent a referral to a large HPV and cancer test centre in the city.

Coping with the diagnosis

My denial was strong, so I focused on my healing from the surgeries and waited for the cancer centre to set me up. The centre did not take my insurance, and the paperwork from my PCP was never completed, so the process died somewhere. I never got a call, so I remained in denial while my appetite waned and my weight dropped down to 92 pounds over two months.

I went back for my post-surgery follow-up on 9/30/21. The doctor sent an immediate referral to the local cancer centre. Luckily, the Oncologist assigned to me agreed to surgery first at my request, then chemotherapy three weeks later.

My surgery was on 11/3/21; staging was Inc. I had adenomyosis and extensive endometriosis. The CA125 cancer dotted the peritoneum and caked the omentum and mesentery. They removed both, along with the left bladder peritoneum and the appendix. Side note: My appendix pathology included ovarian disease and a lesion suspicious of colon cancer. No bowel resection was required. Thank goodness for small favours.

The truth

My surgery was optimal, and I started chemo on 11/23/21. Been in remission since 3/22/22. If I’m reflecting on what I would have done differently, I would have requested a fallopian tube removal instead of a tubal quarterly back in 2005 when I had the sterilisation procedure. None of this would have happened.

Surgery to stage me before chemo was the absolute right choice. If I had followed the doctor’s recommendation for chemo first, I’d be dead right now or, at minimum, stage IV.

In my opinion, you should always consider bleeding without an obvious cause as a possible sign of disease.

The highest my CA125 test levels ever got was 50 after the surgery, which was not a reliable tool. The actual tumour marker was my platelet levels, which went to 630+ while the cancer spread. I knew that the HPV cancer was destroyed during chemo round 4. My platelets had been stubborn through the first 3 rounds, barely dropping into the normal range. After round 4, they dropped from 415 to 84.

Cancer sucks hard…