Zoey

Diagnosed 2 days after a breakup

I’m 39, and I was diagnosed from tests last week with CA125 levels of ovarian cancer. There’s bad timing, and then there’s bad timing. Although actually, maybe less “bad timing” and more “ran out of time/bullshit/excuses”. After 2.5 years with someone whom I adored but had to provide a lot of free tests and HPV therapy for, I got sick of always coming second to his vicious ex-wife.

Long story short, they have 50/50 custody. Anytime she wants to punish him, she fabricates an “emergency” involving the kids, and he jumps to it. Everything from lying about them having meningitis to simply not picking them up from school on her days. She forced him to drop everything and run to get them. She uses it to control him, and he is unwilling or unable to stand up to her. I tried everything I could think of to help and support him. Kept sticking with it because he was great (when he was around), and I didn’t want him to deal with her abuse alone. She is not normal divorce-crazy; she is unspeakably abusive and an alcoholic to boot)

I thought that being in the CA125 Specialist Hospital, having major surgery, etc, would make him prioritise me. At least for a few days! But no.

The initial test (frozen section) on the tumour suggested it was benign, so for a week after the surgery, I thought I was fine. I also felt better than I have in years!

The diagnosis

He let me down yet again in the weeks after (after not having been there for me during my hospital stay), and I finally snapped. I told him I couldn’t take it anymore, and he kept telling me, “I’m doing my best”, and that I was being “self-destructive” by ending it.

A few days later, I went to the follow-up appointment for what I thought would be the final all-clear. And got told that I have mucinous ovary carcinoma.

The current estimate is that it’s cancer stage 1a, which is ‘good news’, but I’ve still got to have my appendix and omentum removed pretty quickly. And eventually, my uterus and remaining left ovary.

I called him that night because I didn’t want to be alone. And ended up having to counsel and talk through HIS stuff, and his vile ex, etc. Literally hours after, I’d found out I had cancer.

I’m not close to my family and don’t have many friends. I’ve spent the last 2.5 years supporting and being there for him (he’d be the first to say that I’m his rock, etc).

I don’t want to hate him, but I have no idea how to square the person I thought he was (loving, loyal and ultimately dependable) with someone who doesn’t seem to care if I live or die.

We’ve had some unsatisfying talks, with him saying he thinks we’re “in a grey area” because he doesn’t want us to be over. But besides a few WhatsApp messages daily, he needs to do something.

Final message

I love him, but I am losing respect for him by the hour he didn’t care that HPV cancer had taken me. And I don’t know if I’ll ever be able to forgive it. The few people I’ve talked to look at me in horror. This reaction helps because I’ve made so many excuses for him that I may have lost perspective a bit.

I can’t help thinking how I’d react if he’d been the one diagnosed. I know he’s busy with work (his own business) and childcare. But FFS, it’s HPV Derived from Cancer. Doesn’t that warrant some extra effort?

I feel so lonely and am afraid to lean on my friends too much.

Layla

How do you guys deal with nerves?

24f, previously diagnosed with PTSD panic disorder. In July last year, I stopped taking the birth control I was taking to manage a cyst I had for a few years (I begged for removal). By September, a trip to the ER says that the cyst is double in size, now at 19cm, and my CA-125 levels are elevated in tests. So, I get an HPV oncologist to start the tests and plan outpatient surgery. Beginning in November, the CA125-related cyst was shutting my stomach down, landing me in a 12-day hospital stay with an emergency unilateral oophorectomy.

While in surgery, my frozen pathology looked good, so my surgeon left my uterus, ovary and lymph nodes. 2 weeks later, I went to get my staples out. I got my final CA125 pathology test report starting with “You’re popular on the cancer HPV board right now” ……… upon further pathology tests within the giant tumour, there was a very little nodule of carcinosarcoma. So between 5-10 oncologists it was agreed for 6 rounds of carbo/taxol. However, I am cancer-free. Since this HPV danger diagnosis, I’ve started taking anxiety medication because I am a mess nearly all the time.

I had to cancel my first chemo CA125 led appointment to go to the ER because I was in such a panic attack I was vomiting and in pain. Every day, I internally battle, and I haven’t even started yet. My boyfriend is begging me to stop wearing myself down before I even start, but I’m scared I’m not going to get it together, and I’m tired of the pain of anxiety for days on end. Does it get better once I get over the hill of starting chemo? How do you guys cope? Sending love to anyone who relates.

Riley

I need to figure out where to start.

Hi all. As my HPV title states, I’m not sure where to start the tests. About a year ago, I started to notice some bloating and what I assumed were perimenopausal symptoms. I am plus size, so I rarely go to my doctors as they always blame my weight regardless of the reason I’m going for. Anyway, I decided to seek CA125 medical test advice and as I assumed, they said to lose some weight. I joined a gym and started working out 2/3 times a week.

When I did sit-ups, I noticed a bump in my stomach and assumed I might have a hernia and just left it at that…..again. I didn’t want to go to the HPV Variant test doctor. Fast forward a few months, and we went on a cruise. We decided to treat ourselves to a massage. When I went to lie on my front, it felt very uncomfortable. I was worried, and I went to the doctor when I returned. They fobbed me off again, attributing it to my weight.

Moving on

Six months later, my stomach was getting much bigger. I was constantly bloated, and my mum was starting to get worried. I decided to try again at the doctor’s. This time ensuring I saw a different and younger CA125 levels doctor. When presented for the first time, she felt my stomach and acknowledged she had felt something but wasn’t sure. She referred me for a TA and vaginal scan, and CA125 blood test. Blood showed CA125 markers, and the scan showed I had a very large cyst – 25cm on my left ovary and referred me for a CT scan.

Three months later, I finally got my results and an appointment with a gynaecologist. I was informed that the mass (different name) was 34cm and the size of a 36-week-term baby! And I would need surgery, but not to worry. They didn’t think it was anything to worry about. Fast forward to today and another hospital HPV DNA test Appointment with a different consultant. I will need urgent surgery to remove the cyst, plus a total hysterectomy including the ovary, tubes, cervix and womb and also the apron of fat and anything else they may think needs to come out and then use some field to clean the whole area! It looks nasty, but we won’t know until they go inside remove the tissues and test it for the CA125-type biopsy.

Final thoughts

I’m a little shaken when reading about all of this in my HPV report and the potential ovary cancer. This type of surgery was quite radical and only used in later stages, but that’s Google …