Help - Large Complex Ovarian Cyst

Women's health
1

10-11 weeks ago my mum had problems passing Urine.

We spent around 8 hours in the hospital and finally they put a catheter in which helped.

The hospital then sent her away with advise that she would be passed onto Gyne for further tests.

Long story short, comms were poor and we had to chase up appointments and finally 2 weeks later she had a ultra sound scan.

The results were given to her 4-5weeks ago and they have found a ovarian cyst.

The consultant refered her to an urgent 2 weeks CT Scan which we had to keep chasing as we didn't recieve an appointment a week later and after being persistant they finally gave an appointment which feel 2 days outside the 2 week window however it was for an MRI Scan.

2-3 weeks ago she had the MRI Scan and the results were provided to her last week.

The report stated the following - 

There is a well defined right ovarian cyst (13cm by 8cm), it contains fluid with atty component and protenaceous material.

There is also a partial septation of the cyst.

There are some low intensity loose bodies seen within the cyst.

The differential diagnosis would be a dermoroid or other possibly sinister ocarian cystic mass.

Left ovary contains a 2.9cm well defined cystic lesion. The uterus is displaced forward and compressed by the right large ovarian cyst.

There is no fibroid utreus.

Some nabothian custs noted in the cervix. A Foley catheter is noted in the bladder.

There is degenerative disc disease noted at L4/5 qne L5/S1 with focal posterior annular tear of the disc'.

She had a CA blood test last week and with the results and the above, the consultant will be bring my mothers case up on their weekly meeting to discuss if this is an urgent 2 week op or non urgent op.

They said they wont be able to determine if its 100% cancerous until post op diagnosis.

Just wanted views of similar journey and what it may lead to and what to expect?

2

Hi Chris

I am in a similar position although a bit further on than your Mum.I had severe pain when I went to the loo in Feb followed by quite a few weeks of strange tugging pains in my pelvic area, which had completely gone by the end of May. In the meantime I'd been to the doc a couple of times and she had organised an ultrasound which I had in June. They found a 10cm cyst on my right ovary. Because I'm past the menopause and also because I had an elevated CA125 I saw a doc at the hospital within the 2 week period. That doc seemed to be a junior fill-in of some kind as he isn't on the hospital's official list  and he was very brusque, did a totally  unwarranted (and very painful) uterine biopsy because the lining of my womb was a bit thicker than they liked, and also muttered darkly about ovarian cancer while at the same time telling me the cyst looked like a dermoid- which, no matter your age, are 98% benign. I was sent for a CT Scan and then held my breath, dreading the phone ringing with bad news. In the end I got a (second class thank God) letter with an appointment for three weeks time, which was the end of July. This time I saw one the 'proper' consultants and his first words to me were 'its nothing horrible'- I could have kissed him! They had found nothing sinister and the scan and blood tests had all come back normal except for the raised CA125. He told me that test is useless as a diagnostic tool and only really helpful for ladies who have been diagnosed with cancer so that they can trace the effectiveness of treatment. However because it was a factor and due to my age (I'm 61) they thought it best to do a total hysterectomy, including the ometum because on the off chance it turns out to be mailgnant that is where it spreads first, but he was convinced it wasn't, in fact he was so cool about it he allowed me to postpone the op for a three weeks so that I can have the holiday we had booked. So I'm booked in for the 26th, and while part of me is a apprehensive the rest of me just wants it done so that I can get on with my life without all this hanging over me. I've been using the extra time to get my head together, lose a bit of weight and top up with vitamins and mineral supplements, plus getting together all the stuff I'll need in hospital and after when I'm home again. It'll be 2 weeks after the op before we know for sure what all this was, but it was better to get it all done, as the consultant said, than to take the ovary and then have to operate a second time if it was needed. I'd have needed the same op so that seemed really sensible to me, whichI guess means I'm on board with the treatment, mentally.

I do hope this helps. Please tell your Mum not to worry too much- and not to Google too much either. In my darker days when this all began I did that and while there's some helpful stuff there's a lot more that isn't. Listen to the doctors and be guided by them. I'm really happy so far with the care I've had. I wish none of this had happened but feel grateful that if its nasty its at an early stage and is treatable.

I do hope your Mum gets sorted soon and that you can both help each other through this. 

All the best

Chris

3

Hi Chris,

Thank you for your post and I am glad that with your case it was nothing serious smile

This is the latest update with regards to my mums case:

It has been 2 weeks today since I personally spoke to the Gyne consultant and she advised me that there were 2 outcomes depending on the CA 125 blood test results -

1. Urgent Op at a specifilist hospital, within 2 weeks if the results were high

2. Less urgent Op, within 4-6 weeks at our local hospital which is more general

The Op would be either key hole or a major op (laparotomy), although we believe due to the size of the cyst it would most like be a laparotomy OP.

The cinsultant also said these options was going to be discussed on the coming Wednesday (6th August) at their MDT meeting and when asked when we would know by, she said she would let us know on Thursday.

Thursday came and went with no response, so I emailed the consultant. She didn't respond until the following Thursday (after I chased her again explaining the anxiety that was causing us all).

She advised that the MDT was rescheduled for Friday 8th August and she would be in touch.

Friday came and went and by Wednesday I sent another email. She responded advising that the MDT was cancelled again and was going to be taking place on Friday, however the blood test results were normal and as the MRI scan didn't show anything conclusive she believed that it would be a 4-6week op (non urgent).

We are still waiting for the results of the MDT, if it actually did finally take place on the 22nd however I have read that even with an MRI and normal blood test results, they will not know the full extent of how serious this cyst can be until they actually take it out and look into it further?

Should we be having to wait this long since the blood test was taken over 2.5 weeks ago and her MRI was conducted over a month back?

We are mentally preparing for an opp and if it is laparotomy, should my mum get all her reproductive system out (seems many women opt for this post 50, my mum is 54).

Any advise on the way forward, should we continue to chase or escalate etc, would be greatful and really appreciated

4

I am myself undergoing, (in my case for myself without support), this type of stress. Keep chasing - as they say they who shout loudest, sadly it is true. Get PALS involved, they can help chase and co-ordinate. Speak to your GP. Lay it on the line and play the distressed card, be rational but make plain the distress it is causing.

Thinking of you and your mum at this time, hope it is sorted soon

Best wishes and big hugs xxx