Doctor said I might have ovarian cancer - feeling frightened

[BarefootBaby]

This is my first post so I hope I'm posting this in the right place. I've been an anxious wreck all day and thought I should try and speak with others about this as maybe I'm over reacting.

My Dr referred me for an ultrasound 2 months ago for suspected kidney stones. My kidneys turned out to be fine but the sonographer spotted a 5cm ovarian cyst (and polyps in gallbladder but that's another story). I went back for a proper scan of my pelvis and they confirmed it was a hemorrhagic cyst and was now 4cm. As it was a complex cyst they said I should go back to my Dr and get referred to gynaecology. My Dr did a CA125 blood test before this referral and phoned me to say it was elevated (56 - should be under 35). He then proceeded to say I might have ovarian cancer.

For someone who is already struggling with health anxiety this was the worst possible thing he could've said as honestly it's thrown me into a spiral of fear about dying etc. I also know that CA125 isn't an accurate predictor of ovarian cancer but still..

I saw the gynaecologist and he said I could have surgery byt that they wouldn't know if I had cancer unless they did this. I didn't want to make the decision so he told me they'd discuss my case at a multi disciplinary team meeting and let me know the outcome. Until then, he's scheduling me in for another ultrasound and CA125 in August.

I'm fretting because august is so far away and I have other symptoms that make me worry it might be OC and if it is, I'm scared it's spreading. The past week I've become more aware that my stomach is distended (I'm a tiny skinny 31 yr old so I look 3 months pregnant) and it feels hard. I've also had extreme fatigue for months which my Dr has always dismissed.

Am I over analysing my situation? I know googling symptoms is the worst possible thing to do for anxiety sufferers so I feel I've made things worse for myself but I'm so worried.

[jojo2316]

You must be frantic. I have long suffered for health anxiety but I also know what it is like to be in the middle of a “real” health scare and it is so SO awful. The waiting is hell.
Firstly: you ARE overthinking it and seeing symptoms that may not be there. It’s natural and anyone would do it, but it doesn’t make it real.
Secondly: your ca 125 is not that high. I believe the under 35 number is mainly for post menopausal women and that younger women can get much higher readings especially if taken during a period or early in their cycle. Also cysts etc can cause a rise in ca 125.
Thirdly: ovarian cancer is very rare in your age group, even if you have a family history (which you don’t mention)
But of course you are worried and that won’t stop until this is over. I found various cancer helplines a god send when I was going through my “real” scare (breast cancer.... and I didn’t have it)
Good luck and let us know how you get on
Jojo

[BarefootBaby]

Thank you so much for your reply, Jojo. You're helping me try and put things in perspective.

I was actually on my period when the CA125 test was taken so maybe that had a part in the raised level. I have no family history of gynaecological cancers or breast cancer. I was also n the pill for 10yrs and stopped taking it a year and a half ago and have heard that the pill lowers chances of OC. I'm sure I am over thinking it but as you've guessed, that's not stopping me from fretting. I think it's the distended stomach that's making me more paranoid but I know cysts can cause this too. I'll try to be more objective if I can and stop googling too..

Really glad to hear you didn't have breast cancer. It's very reassuring speaking to someone who understands. Thank you x

[leah22]

Hi
I have recently just gone through the same thing. Please read my post. The gyne sent me away to re check me in 6 weeks for mine but I received a letter a few days later for beginning of September. In the meantime I’m just going to enjoy my life. I’m assuming if mine gets bigger or even stays the same they’ll do the blood test or maybe suggest surgery which will scare me big time. But until that day comes I’m going to try and forget about it. Stay calm and I got loads of support on my post that will hopefully benefit you too x

[pulisa]

I've always been told that the CA125 test on its own is unreliable and that you should have a trans vaginal scan in conjunction with the blood test to give a true picture.

Surely if OC were suspected you would not be left to wait until August? leaving you in the lurch like this after saying "you might have OC" is pretty unprofessional. I'd chase them up on this August test and ask to have it earlier in view of what your doctor said.

[katniss]

First off that is an incredibly unprofessional thing to say. You can’t tell someone they “may” have cancer and just leave it at that. I’m baffled at your doctor’S bedside manner.

Second, your reading is not that high. It is still high enough to warrant a checkup but from what I know endometriosis and other conditions can also cause a higher than normal reading. You are way too young for OC and in all likelihood your cyst is benign. The most reassuring thing is that your cyst has grown smaller. Keep us updated! Lots of hugs

---------- Post added at 02:35 ---------- Previous post was at 02:30 ----------

Just scoured the net for you a bit. And your number is very low and when it’s that low it’s almost always caused by something benign. Apparently cysts, fibroids, endometriosis and a bunch of other benign things can cause it. Also, if your gyn thought it was serious he would have pushed for surgery and treatment ASAP and not left it for two months down the road.