Question about ovarian cysts

[Colyn]

Hi all. I was diagnosed with a borderline ovarian tumour earlier this year. Had to have surgery to remove the tumour and ovary, but elected to keep the second ovary. Two months on and the second ovary has now started forming a cyst (although still simple and not a tumour at this stage).I'm feeling very frustrated with my medical practitioners who keep telling me there is nothing I can do (I am having a period so no point investigating a hormone imbalance; not overweight so no point looking into an insulin issue). But clearly something is out of balance.Has anyone been in a similar situation and could recommend specific tests to push for, e.g. hormone testing? Or any advice really.I have a history of PCOS, but my specialist says the current cyst is bigger than he would expect with PCOS.

[Lyndy]

Hi Colyn

I have no experience of this particular problem but asking for a second opinion from a specialist centre is likely to be a good way forward to get the answers you are seeking.

You will have to do some digging to find the right person but you have written here what you want to know so use that to find the right clinician

Best of luck xx

[Ruebacelle]

Confused. Are you young? Was your removed tumor cancer?

[Colyn in reply to Ruebacelle]

I’m 39. The tumour removed was classified as borderline.

[Gakaxy57]

HiI had ovarian cysts on both ovaries 2years ago in Dec 2020. I had surgery to remove these cysts in Jan 2021 and gad biopsy taken.

The results were low grade borderline serious tumour so surgery hysterectomy and the omentum removed.

I gave to have bloods taken every 3 months and monitored for ne xt 10 years.

I was told borderline was not cancer not normal these cells are different. Consultant advised regular follow up.

Currently my CA125 levels have been constant. I am due Sept/Oct for next test but I gave been stressed due to bereavement so hope everything stays level.

I would ask your consultant and even nurse or MacMillian nurse helpline who will be able to advise or direct you to someone who can answer your questions.

Ovacome also have a booklet about borderline ovarian tumours.

Take care

L x

[anxious98]

Hi Colyn. I’m also in the same boat as you. I had the cancerous left ovary removed and opted to keep the other one as I was only 24 with no kids. Developed 2 or 3 ovarian cysts on the right ovary a few months after my diagnosis but was told it was normal after getting ovarian cancer, and that it’s nothing to worry about. Despite me thinking it’s PCOS after ultrasound tech mentioned it looked like it.

I’m not particularly worried about it myself even though I do get bloating, slight abdominal pains, and gassy from it. And specialists have seen a pattern where ovarian cancer patients can experience abnormal changes to body such as ovarian cysts. So what we’re experiencing is fairly normal and I don’t think it’s likely they’ll push for further tests or surgery, considering the fact that you aren’t experiencing other symptoms. But if you do have history of PCOS and have concerns, do mention it with specialist or GP.

[Colyn in reply to anxious98]

Thank you. May I ask when you had the surgery to remove the ovary?

[anxious98 in reply to Colyn]

I had it removed April 2022. Diagnosed the following month after. Begun IVF process in July and also found 2 ovarian cysts before undergoing chemo in Aug, and grew smaller cysts 5 months after completing chemo which I still have to this day (no more further growths from then). Was told that 1 in 5 women have ovarian cysts- it’s normal even amongst the general population with no cancer history. Therefore, the docs say its nothing to worry about unless it presents painful symptoms. Just want to reassure you as well!

[Colyn in reply to anxious98]

That sounds like a very stressful journey. I’m sorry you had to go through that.

Thank you for sharing your information. X

[Leniko]

How about a CA125 blood test?