Possible ovarian cancer - what should I ask for?

[ImFrightenedAuntieEm]

Hi, I've had rather a strange run of health problems. Bells palsy when pregnant. Weird rash after giving birth on fingers and face, urinary urge incontinence and plain old incontinence. Painful periods. Irregular periods. Heavy periods. Flooding. Thrush. Supposed skin tags on my vulva . Back pain. Insane overly pain on right side. Passing of a bit of matter at start of period. (Not bloody, actual fleshy matter) Tired, but than again, toddler mum .

As most of this has been quite localised I've been going back and force from the GP. They hand waived it away mostly and given me thrush pessary. (Which didn't really work)

Today I had an ultrasound and the ultrasound person called her colleague over and said that's not normal that's unusual/abnormal.

When I asked what she fobbed be off with talk of fibroids (I know fibroids are very much not unusual)

I have a doctor's call on Monday to discuss and I'm terrified for multiple reasons. Firstly if they tell me it's ovarian cancer. I obviously don't want to die and am terrified of any surgery however small to boot. (It's quite a powerful phobia as was terrified of cesarean both pregnancies)

I'm also terrified they will handwave again and it turns out to be ovarian cancer. I had a friend die. In her late twenties after being fobbed off that she didn't have breast cancer. She did it was stage four when they got it.

I'm also terrified of getting ill and dying and leaving my children behind. At least one neurodiverse both under five. This fear is effecting how pragmatic I can be about it. I also am neurodiverse and have executive function issues and intrusive thoughts.

So really I'm not sure what I am looking for here. A handhold. And perhaps bullets/ things to ask in phone call so am not fobbed off etc. so tests to ask for. What do I need to prove/test properly it's benign/cancer. What are surgery options.

Sorry, my head's all jumble

sorry you’re finding this all stressful, but if your call on Monday is with GP, they won’t have the answers to all your questions.

essentially I’d ask if the scan has been reported as 100% normal, and if not given the gynae symptoms, could they refer you to gynae. If there’s anything on scan that is reported as uncertain (based on what you overheard), then could they refer you on a 2week wait.

It definitely wasn't one hundred percent normal. There's some sort of growth on my ovary which she referred to as unusual.
Thanks so I ask for gynology referral within two weeks? I'm 38. Will they still do that for me?

Yes. If there’s an unexplained growth on the ovary, you can definitely ask for 2 week wait referral. But there’s plenty of benign things on ovaries (cysts etc), so don’t leap to thinking it’s cancer, and maybe they’ve reported what it is. It’s possible you have two things, like fibroids causing the heavy periods and something like an incidental benign cyst on the ovary. Try not to over think it this weekend.

Sorry that you are going through this, it's very stressful.

The ultra sound won't give a diagnosis, just a prompt for further tests. They will not be able to diagnose ovarian cancer without a CA125 Blood test as the first step. If your blood test shows raised markers (even raised markers don't mean ovarian cancer as other inflammatory conditions can raise your CA125) they will then go on to further diagnostic tests - mine were biopsies at that point, although they had said cancer, just not what stage etc. They should refer you for these tests in the 2 week wait period (NICE guidelines but you may need to force the issue as they often use loopholes to get out of the 2 week referal unfortunately)

So, whilst hard not to panic, the diagnostic process is not one test = diagnosis so you need to set your expectations.

There are some excellent charity support options available to you in the time. If you are near a Maggies Centre I strongly suggest you get in touch with them now - they are fantastic and can offer you so much support and information, or even just a listening ear and safe place to feel all the emotions you must be feeling.

So Dr has put me on two weeks referral. Growth is on my uterus and not my ovary, so I'm guessing they are thinking uterine cancer?. I forgot to ask for a ca125 as my head was in bits but have visited the GP receptionist and asked for it now. Needs to be approved by the Dr. The growth is 3cm and has a blood flow so they said unlikely to be a tumour. My mum is with me today and so are the kids until my eldest goes to nursery on Wednesday. Bit at a loss and unsure what to do as can't concentrate on our normal routines (my oldest is ill today as well)

Any advice of what questions to bring to the referell will be good , or anything as to how to focus/reset my mind so I can cope. I'm not one of these fighter people. Always been a wuss.

A growth on the uterus is also called a fibroid … so it could be something very simple and benign. Try not to worry too much (easier said than done I know). I’m going for my results tomorrow, but I think mine is endometrial hyperplasia, I imagine that means more tests but don’t know yet.

Sorry I mean unlikely to be a fibroid but likely a tumour. They said unlikely fibroid due to the blood flow . Sorry not clear the first time.

Thanks for the reply and for being so nice and sharing your experience.

I've had endometrial cancer. It is one of the most treatable cancers when caught early. I was 48, had a full hysterectomy, ovaries and tubes taken out and 4 years on, all is well. Hopeful it is something less sinister OP, but even if it is, the prognosis is good. Sending best wishes.

The good news is that they are doing all the right things by referring you and sending you for tests. And even in the unlikely event it is something serious that requires treatment, people are always outliers in statistics. By statistical analysis, I should have died
10 years ago, but here I am plodding along cancer free and life is good! I wish you well OP