Gynae oncologist appointment update

[Mguilfo]

Hi All,

I saw the gynae oncologist today regarding a 4.5cm complex ovarian cyst which showed up on a CT scan recently. I have a history of endometriosis and my CA-125 has been a bit elevated since Sep 2016, the highest result was 98. He wouldn’t confirm if it was harmless or sinister but he wants to remove both ovaries and tubes and possibly a hysterectomy depending on what he finds when he goes in. He feels that the complex cyst was probably caused by the endo but it won’t go away itself. Has anyone had a similar story?

[Perthgirl]

My diagnosis was very different but sending positive thoughts and best wishes to you that this is nothing serious. Ca 125 can be elevated for many things including infection so stay strong. 🌹

[Lily-Anne]

I would have the full hysterectomy. That’s with hindsight. I was told that my ovarian cyst was a simple cyst and my CA level was normal. I had keyhole surgery. Histology returned cancer so I then had another operation to remove everything else as a precaution. Two operations a month apart was quite tough. At the time I was seduced by quick recovery time and not having my womb removed as I still liked the idea of having the choice of another baby even though that wasn’t on the agenda. I’m a great believer in choices.

Really I should have just said take it all away it doesn’t matter and it’d solve the monthly period problems.

If my surgeon had said he would look around and then decide I still would be on the same path as he was confident there was no cancer

LA xx

[enzo14]

Hello

My Cyst showed up on a CT scan unrelated to my ovaries, so I saw a gynae oncologist straight away after number of USTV scans and MRI it started to resolve shrinking 2.5 cm in about 3 months and surgery was not considered as thankfully it was resolving, my friend however did have to have her right ovary/ tube removed ( she’s only 29 :0((((. ) she now has a cyst on her left, histology showed no cancer on her right ovary and now they are considering surgery for the left

Really difficult decision but if my consultant had any doubt I would of rather him remove everything x

[Cropcrop]

Hiya, you already know your endometriosis can cause your CA125 to rise so that’s possibly a little bit reassuring. I think you could suggest to your surgeon to use his judgement and to do the surgery that gives the best long term outcome for you. Knowing what I know now I, personally, would plump for the full hysterectomy and omentum removal so you have peace of mind and a full histology report. Good luck with whatever you decide to do ❤️Xx Jane

[Coldethyl]

I had v large complex cyst and high CA125 along with history of endometriosis - as I was nearly menopausal anyway I agreed to the radical hysterectomy - surgeon couldn’t see anything untoward other than the original mass stuck to sigmoid colon but pathology revealed microscopic spread to other ovary and omentum as well as synchrous womb primary - had I just had ovary removed I’d have still had cancer. Also , endometriosis is associated with two types of ovarian cancer once of which , clear cell , is aggressive so I’d be inclined to bite bullet and have full works as I’d imagine if pathology showed this you’d have to have second debulking op anyway - wishing you well xxx

[Mguilfo in reply to Coldethyl]

Thanks for your reply. I don’t think that I am going to meet the specialist until the surgery. I wonder could I ask him on the day of surgery to do the open surgery and hysterectomy. Or is this something that I would need to have arranged beforehand. I am still a bit undecided. Is there much of a difference in recovery to get everything removed or just the ovaries. I know my twin was very sore following removal of her ovaries due to severe endometriosis. Her womb was attached to her bowel so he didn’t remove it. A fragment of tissue left behind grew again and she got a period 12 weeks later. She had no cancer present in her ovaries but she still has the endo!

[Doggies221 in reply to Coldethyl]

Hi Coldethyl, are you well now after the ordeal you went through with the cancer? Was it endometrioid if you don’t mind me asking? Those usually show up as synchronous endometrial and ovarian. I hope you’re doing very well!

[Coldethyl]

You’d need to discuss hysterectomy beforehand as it’s a major operation so they’d need more time and a bed for longer - recovery will be longer too - the problem with endo is that it’s hard to remove it all and a gynae onc is not an endo specialist so wouldn’t be looking to remove it during his surgery I wouldn’t have thought - any endo left can make it’s own oestrogen so even without ovaries or a womb , you can get trouble from it later on xx

[Mguilfo in reply to Coldethyl]

Thanks a million for this information. I guess I will have to think carefully and come to a decision. I am not sure what to do now. I just want to get rid of the pain and have more energy.

[Mguilfo]

My report from the CT scan said that a 4.5 x3.6x 3.8cm complex, septated right adnexal cystic lesion was noted but there is no mention of echos or solid areas. It also referred to subsegmental bibasilar atelectasis which means a partial lung collapse. There was no free fluid noted. I haven’t had any cough or chest infections but I have noticed that I am shallow breathing and a bit breathless at times. There was no other modules or cysts found anywhere else. Would cancer in the pelvis or womb show up on a CT scan?

I am very tired but that might be the endometriosis.

[Coldethyl in reply to Mguilfo]

Do you have a date for the operation? And a follow up about lung? I felt breathless before my diagnosis but ct scan showed I had pulmonary embolisms not a lung collapse so don’t know what they do for that. CT would show later stage cancers in pelvis but not always going to pick up early stage - my womb primary didn’t show up on CT or ultrasound which I guess is why hysterscope used to biopsy and diagnose - perhaps you could ring your surgeon’s secretary and arrange for a chat to go through things ? X