First post, abdominal mass, not diagnosed yet - My Ovacome

My Ovacome
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First post, abdominal mass, not diagnosed yet

JayelleBee
JayelleBee

Hello

I’m 54 and it’s three years since my last period.

I have a large lump on the left side of my pelvic region which I first noticed about 6 weeks ago. I’ve had a transvaginal ultrasound which showed ‘adnexal mass, thick septation, increased vascularity, mass not seen separate to left ovary, no ascites’.

The gynaecologist couldn’t say if it’s malignant or benign. I’m having an MRI on Friday and I’ve been referred to the MDT. Obviously I’ve Googled all of these medical phrases and it doesn’t look good. However, my CA125 was 8 and ESR was 10, which she said was ‘encouraging’.

I’ve been reading this forum and it’s comforting to know I’m not alone and there is support out there. At the moment I’m finding it hard to think about anything else, the waiting is horrible.

Janet x

8 Replies
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Hi and welcome to the forum xx fingers crossed all turns out well for you and yes you’re right, waiting for results is the worse time it’s nerve wracking and torturous!!

This is a very well informed and supportive group and anything you want to ask just go ahead, nothing is too trivial or to out there that one of the great ladies on here won’t reply and support you with, from bowels to cutting edge research someone on here will have had some experience with and there’s always a good sprinkling of humour to make us giggle x

Keep us informed along your journey xx

Big hugs

Bev xx

Hi

Only a histology report from the mass can tell if benign or not. The CA125 is not always a good indicator. For my sort- mucinous OC - it is virtually never raised. Have you got an appointment yet to discuss what the MDT think. Waiting is always awful. Most of us have gone through the dreaded wait.

Keep us informed.

Best wishes

Fay

Update: Thanks for your replies. The MDT meeting is Wednesday week. I’ve found out that the gynae oncologist on the MDT also does private consultations so I’ve booked in to his evening clinic on the same day.

Janet x

Hi JayelleBee

Sorry to hear you are in this predicament. You are right...the waiting is indeed horrible. A friend went through it at the same time as me....she had cysts... I ended up with a diagnosis of OC. Try to stay in the moment if you can..all fingers and toes crossed xx

i agree with all these wonderful ladies Im quite new to this forum and each person that has replied to my fears moans and good moments has helped so much whatever the outcome and my fingers are crossed you will gain hope and inspiration on this site good luck and hugs xxx

Waiting is always awful. I remember waiting to find out what my initial treatment would be, &a whether it was cancer or not. It started to get easier once there was a plan, & when I finally knew where I stood. The thought of possible surgery & chemo is also scary at first, but is doable, & may not be as difficult as you think. Feel free to post here about any concerns you have, & usually someone will reply. It's all very new to you at the moment. For me, 10 years down the line, I've survived treatment, & got used to my new situation, though I've had more problems, & still get nervous waiting for scan results. Di

Update : Following the MRI on Friday I saw the gynae oncologist yesterday and he said I have a large tumour (13cm x 10cm x 8cm) on my left ovary. However, the MDT feel that it is 70% benign and 30% boarderline. He said that even if there are cancer cells within it would still be stage I. All my blood tests are still normal with CA125 at 10 and ESR at 6 which is good news.

As it is septated they can’t drain it and remove by keyhole incase it ‘breaks up and seeds’ so it has to come out whole. He also said it is advisable to remove the right ovary as well so he suggested a full hysterectomy which will be done in the next 2-3 weeks.

Although, I’m not quite out of the woods yet, I’m mighty relieved and had my best sleep for ages last night!

Janet x

Update: When appointments contacted me they said the NHS waiting list was fully booked until September due to surgeons being on annual leave. This would be over a month since I was told 2-3 weeks so it sent me into complete panic as there was still a small chance of it being malignant.

Consequently I decided to go private and I had a total hysterectomy with a vertical incision (belly button to pelvic bone) as it was the best way to ensure it was removed in one piece. It had grown a bit since the scan and was now 15cm in diameter and the consultant thought it had been growing no more than 3-6 months. I have a photo of it and it looks a bit like a very large onion! It was tested and found to be totally benign.

It’s two weeks since the op and it’s currently covered by a large dressing and I’m on light duties for another couple of weeks. I’m having my stitches and Sterri strips removed on Saturday and that will reveal a rather large scar but it could have been a whole lot worse.

I’d like to send my best wishes to all the ladies on here who are going through a really tough time.

Janet x

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