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Ovarian Cancer - Terrified

(14 Posts)
Vinosaurus Wed 17-Jun-20 03:00:01

Firstly, I'm sorry if I come over melodramatic or over the top. In my defence I very nearly died of a post op pulmonary embolism in 2018 and the PTSD it left me with partially manifests itself as health anxiety.

Basically I'm terrified I have ovarian cancer.

Symptoms started last November when one evening I started needing a wee every 30 minutes. Went to the GP saying I thought I had a UTI, but tests came back negative. It eventually disappeared, only to return a few weeks later and has been off and on every few weeks ever since. It is most definitely currently on. The frequent trips to the loo have gone now, but the pain/inflammation feeling very low down in my pelvis and at either side (sometimes radiating down my legs) has gotten worse and my cycle has suddenly reduced over the last 2 months from 33 days to 25 (with some seriously bad, doubled over in agony, period pains).

On my 3rd visit to the GP (just over a week ago) they started to take me a bit more seriously and sent off some bloods. My CA125 has come back elevated at 45 or 49 (can't remember which as I was a bit blindsided), the cut off being 35, and I now needed an urgent scan - although under current circumstances I'm not sure when that'll happen.

Although the GP said Ovarian Cancer was unlikely (pre-menopausal, no family history etc.) I've been experiencing other symptoms such as air hunger (off and on) for a couple of weeks and debilitating fatigue and lower backache for a few days now.

I keep adding up all the symptoms and coming to the same conclusion, that I have OC, and that considering the symptoms started in November and it's a disease that is notorious for not showing symptoms until it's later stages it must be pretty advanced by now, and I'm up shit creek so to speak.

I am so scared that I've withdrawn into myself and can't speak to anyone. I'm just having horrid thoughts constantly running through my head - sitting in the consultant's room being told the awful diagnosis, having to tell my daughter etc. My head is spinning.

OP’s posts: |
IntoTheUnknown27 Wed 17-Jun-20 03:09:50

I can't really help with cancer worries but I can offer a hand to hold... Well virtually anyway!

I don't know where you live but I'm in the UK - it's gone 3am and I'm awake - AGAIN with anxiety.

I had a P.E - bilateral actually - in 2018. I developed health anxiety. It's crippling.

I have back pain at the moment - I have scoliosis - it could easily be that but no, in my head, its another P. E confused. I'm even still on blood thinners but become convinced another P. E will "get me". I almost feel like I'm living on borrowed time.

Vinosaurus Wed 17-Jun-20 03:15:25

Oh Into - I'm sorry you went through that too, mine was bilateral (saddle) as well. They are nasty and the psychological scars they leave you with take a lot of healing. The anxiety - and insomnia - really are debilitating. Does anything help you at all? I used to use the Calm app and listen to the sleep stories and guided mediations, they were the only thing that could get me to sleep for a long time after my PE.

OP’s posts: |
IntoTheUnknown27 Wed 17-Jun-20 03:23:24

I just try and wait it out. Rationalisation helps. I recently found out I have gallbladder issues so whenever I get pain now I can rationalise that it's probably that. Lol.

Did you develop heart problems afterwards? I have heart failure now - I'm only 31!!

Vinosaurus Wed 17-Jun-20 03:32:49

Heart failure - that's crappy, I'm sorry - is it managed ok with treatment? I did have heart issues at the time (right ventricular strain, basically swelled up like a balloon as the blood had nowhere to go) but to my knowledge it's recovered (touch wood). I had a few echos afterwards that were OK. Do they know what caused your PE? Was it provoked?

OP’s posts: |
DuDuDuLangaLangaBingBong Wed 17-Jun-20 04:06:43

Elevated CA125 can be caused by endometriosis or fibroids, or a benign ovarian cyst.
Obviously you must get it checked out properly but it could be caused by all kinds of things, including some auto immune conditions.

If it is malignant, it could be endometrial, fallopian or peritoneal, not necessarily ovarian.

My mum had ovarian cancer and iirc her initial CA125 test came back in the thousands. We later found out she had the BRCA2 gene fault.

I know it’s easier said than done but do try not panic, CA125 in the 40s is not that high and some women have naturally occurring healthy levels over 35 anyway.

flowers

IntoTheUnknown27 Wed 17-Jun-20 04:10:49

I was pregnant and I have family history. I am on beta blockers, ARB's and blood thinners. It's fairly tiring. Like you, my heart blew up like a balloon.

stellabelle Wed 17-Jun-20 04:40:04

Your Ca125 isn't very elevated - I've had ovarian cancer and my Ca125 before surgery was 150,000. A reading in the 40's isn't a big indicator of cancer, more likely an infection / inflammation of some sort. I have mine tested annually now, and it bounces between about 10 and 40. And I don't have any ovaries at all.

Try to keep calm and not to overthink things. Worrying yourself sick about something which is highly unlikely, robs you of the ability to enjoy your life. Wait and get a scan, but meantime try to make the most of life instead of withdrawing into yourself.

Vinosaurus Wed 17-Jun-20 08:17:02

Thanks all - I'm clinging to the fact that it's pretty low, albeit above the accepted normal level. I'm trying to be positive and distract myself, but the pain's serving as a constant reminder.

OP’s posts: |
Vinosaurus Wed 17-Jun-20 09:06:53

Stellabelle - I'm desperately trying to, I've only relatively recently felt like I actually had a future and wasn't going to suddenly die (after a lot of therapy for the post pulmonary embolism and resulting PTSD) - and now this. I was crying to my husband last night asking him whether Mother Nature could be that cruel - to land me with this after getting over that.

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Vinosaurus Thu 18-Jun-20 08:38:02

That's a lot of drugs to be on Into - I was only on blood thinners for 3 months in the end - they wanted me on them longer but they made me extremely anaemic.

OP’s posts: |
Ohdeariedear Thu 18-Jun-20 08:46:15

I had odd symptoms and an abdominal mass and my CA125 was in the 40s. When I saw the consultant two weeks later (I was out on the cancer fast-track just in case), she wasn’t too concerned at a score in the 40s. It turned out to be a huge fibroid.

Hope you get seen soon and get some answers.

Vinosaurus Thu 18-Jun-20 08:58:02

Thanks Ohdear - can I ask what your symptoms were?

OP’s posts: |
Ohdeariedear Thu 18-Jun-20 12:33:38

My symptoms were mainly down to the anaemia caused by the fibroid. It was causing very heavy periods which caused my iron levels to drop a bit more each month - so mainly tiredness, breathlessness, palpitations, thinning hair, crap nails. Because nothing changed overnight - it was more of a longer term deterioration - I put it down to Peri-menopause. The only other one was it got to the point that I couldn’t go more than an hour or two without going to the loo but that was due to the fibroid pushing on my bladder.

I had a hysterectomy and a few months of iron supplements and I feel like a new woman.

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