Ovarian cyst or cancer

[Kerfuffled]

I had a CT scan and ultrasound earlier this year after a gynae referral by my GP for bloating and a raised CA125 level of 300. Two days after the ultrasound I was called to the gynae dept and told I had stage 3 ovarian cancer. I was then referred to another hospital for a diagnostic laparoscopy after which the surgeon told me he thought it was just a cyst and if there was any cancer then it had been caught very very early. I was called by the original hospital today who said the treatment plan now was for a hysterectomy followed by chemotherapy. I queried what I'd been told by the surgeon and they then said it might just be that or it might just be confined to the cyst. I then had to ask what the biopsy had shown, that had come back clear.

I am so confused. I've gone from stage 3 cancer to a cyst and then back to chemotherapy. I have probably googled too much but I now don't understand any of this. I was first referred before Christmas. I can't sleep properly, I'm constantly on edge and feel permanently stressed. My emotions have swung from devastation to hope to not knowing what to feel. I don't know what I'm looking for by posting this either, just advice, help or a hand hold.

You poor soul! I have no expertise here but didn’t want to pass you by . I think you should be encouraged by the cyst/cancer caught in time diagnosis. And maybe the hysterectomy and chemotherapy is preventative. Lots of ladies here will be more knowledgeable and experienced than me and I hope they can support you. Lots of love and prayers.

I'm sorry, that sounds very upsetting. MOH went for a scan for diverticulitis a few years back and our next appt was at a bigger hospital. When we got there, we sat under a sign the said 'Oncology' - the consultant was surprised nobody had told us they'd found renal cancer and he had to have a kidney removed!! I'm afraid that individual hospi depts may be very good but their internal communication can be diabolical.

Do you know whether you've seen an oncologist? Have you had a biopsy of the cyst to determine whether it's cancerous or not? How would you feel about a hysterectomy - is your family complete? These are all questions I'd want answers to and, once you know what and why and when, it might be easier to get your head round it all. Fingers crossed tightly for you 💐

I've probably not been at my most articulate writing my post. I've had a biopsy and it was clear. The surgeon thought it was just a cyst but the referring hospital is still talking about chemotherapy. Family is complete so hysterectomy not an issue.

I think you need to gain full clarification from both sides. Go back to the Dr who said it's all clear and ask why the other dept is moving forward with chemo.

do you have the NHS app? Often there is a lot more information on there, scan results etc. I had a cancer scare last year and found the info on there useful. Of course, you shouldn’t have to be doing that, ring up and push for clarification as they are falling below patient care standards.

Gosh, that’s really bad. You definitely need to know exactly what’s going on. I would contact PALS to ask for help with this.

I had ovarian cancer 12 years ago. It wasn’t diagnosed until after my hysterectomy.

Good advice about PALS. The NHS is great however they do mess things up.

Def push for clarification.

I'm in Scotland so no NHS app here unfortunately.

Did you have a biopsy before your hysterectomy? I know there can be false negatives, I just don't know how common they are.

Thank you everyome for your replies and support. I'm planning on seeing my helpful GP tomorrow in the hope she can shed some light/help me make sense of it all.

I think the problem is that they can only go by appearances on scans and a biopsy could be taken from one side of the cyst and be negative as the cancer is on other side - at least that’s what I was told , I didn’t bother with biopsy and went straight to surgical , open hysterectomy as I’d had too many previous surgeries for keyhole and they tested while I was out using frozen section - was just borderline stage 1 but the indications from scans had suggested worse , had seen macmillan team etc so the important thing is to get it out really

No I didn’t. I had an ultrasound scan and an MRI.

What’s odd about this is that hospital 1 didn’t just say ‘cancer’, they specified ‘stage 3’. I would go to PALS and ask someone to sit down with you and explain exactly what they’ve found, on what basis they say stage 3 (usually they’ve seen evidence of cancer in the abdomen or nodes), and how the surgical findings align (or not) with that.

Sometimes biopsies can come back benign even in cases of cancer, this is because the tumour will have different characteristics in different places and a biopsy from an edge may look very different to the centre. If the images are highly suspicious for cancer, despite normal biopsy, then radical surgery is probably indicated and only then, after analysis of tissue, can they be sure. Obviously, if they remove the tumour and it’s found to be completely benign then you won’t need chemotherapy.

I'm sorry you are going through this. I would recommend ringing a cancer charity who can help you with questions to ask your GP. The cyst might have been beign but unfort maybe they found cancer cells in lymph nodes?