Seromucinous borderline ovarian tumour

[Mothbag]

Hi everyone, thanks for the nice support here in this forum. It has helped me so much.

Following my laparotomy surgery last month (total hysterectomy, oophorectomy, appendectomy and omentum biopsy) I got the all clear. My frozen section and final pathology were both seromucinous borderline ovarian tumour stage 1a. Thank goodness for our fabulous NHS.

I am mid-40s so this put me into surgical menopause. I was advised it is best not to take HRT to avoid increasing the risk of recurrence. But luckily I have not had to deal with any menopausal symptoms, apart from some mild issues with regulating body temperature. I am on a low-dose SSRI which I believe has helped. My recovery has gone well and scar is healing up nicely.

I'm interested to find out the experiences of others who have had this diagnosis as it seems to be less common. I understand it is related to endometriosis that I must have had for quite some time (my amazing surgeon managed to remove all my adhesions). Also happy to answer questions.

Sending good wishes to all of you, especially those awaiting treatment as that was such a distressing time 💙

[csewsandskis]

hi, I was diagnosed with serous borderline ovarian tumours (one on each ovary) stage 3C in May 2019 following surgery to remove my ovaries and tubes (I'd had a hysterectomy 15 years earlier) when supposed cysts had been seen on my ovaries during tests looking for something else. I had completion/debunking surgery in June 2019 to remove my appendix, omentum, resect my peritoneum and scrape my bowel. I was 61 at the time and BOTs appear even more unusual in post menopausal women. It was hard to find much information about them but I did join a FB support group which was helpful although with one or two exceptions most of the members were in their 20s to 40s.

[OvacomeSupport Partner My Ovacome Team]

Thank you for sharing your experience on our forum. It is great to hear that you are recovering well from your surgery and not experiencing many menopausal symptoms. I am sure your story will provide reassurance to many of our members.

Hopefully more of our members will respond to your post soon, but in the mean time we have further information about borderline tumours on our website: ovacome.org.uk/borderline-o....

Also, several of our members have shared their experience of this diagnosis with us, including this post from Victoria: ovacome.org.uk/Blogs/our-st....

Although your borderline tumour is not a cancer diagnosis, it is a rarer tumour type and you would be very welcome to attend our friendly Rarer Ovarian Cancers Support group. You can find out more information about this here: ovacome.org.uk/event/rarer-....

Our support team are also on hand if you ever want to get in touch via phone, email, or instant chat to discuss any questions or to talk things through.

Best wishes,

Alice

[Farfromthemaddingcow]

Hello mothbag

I hope your recover is going well. It’s such a shock isn’t it?

that’s interesting that they said to avoid HRT, I was diagnosed with stage 1b bilateral seromucinous borderline tumours too and was told that HRT was fine, because the tumour had been fully respected, this was such a relief to me as I have a family history of osteoporosis and stroke.

Did you have a diagnosis of endometriosis as well?

Wishing you well xx

[Mothbag in reply to Farfromthemaddingcow]

Hi there, thanks for replying, when did you have your operation? Interesting that we had almost the same diagnosis. I had bilateral lesions but it turned out that the smaller cyst was benign and only the larger one was borderline. The surgeon recorded that I had endometriosis (though of course I am now rid of it due to the hysterectomy) and she had to remove a lot of old adhesions. I had awful period pains for many years and was often on quite strong prescription medication for them, and I often thought that those pains could not possibly be normal, and now I know that they weren't

What they said about the HRT was that if my surgical menopause symptoms got bad I could have it, but there was a theoretical risk of HRT increasing the probability of recurrence (seromucinous BOTs seem to be fairly uncommon so the risk isn't well understood). Fortunately apart from some mild body temperature issues I have been fine but if things get bad I will approach the GP again about HRT. Like you I have a family history of osteoporosis so I was given a bone scan and will find out soon what other preventive medication I might need.

Glad yours was caught early and removed entirely and hope you are doing well too

[Farfromthemaddingcow in reply to Mothbag]

I had the first operation in March to remove one ovary and then a second procedure in April to remove half of my other ovary. They left half an ovary, womb etc as I’m in my 30s and wanted to preserve my fertility. Plus also I didn’t want to go through surgical menopause too early. I’ve been told there’s a high chance of recurrence with this option but I’m hoping to complete my family and kick the can down the road in terms of going through menopause at a more typical age.

I think it’s very rare, (lucky us, not!) I watched the ovacome webinar and they said 600 women per year are diagnosed with borderline in the uk and a tiny proportion have seromucinous or one of the other rare types. There’s probably only a few of us.

I’m still I shock about the whole thing as I had virtually no symptoms. How was yours picked up?

Perhaps the fact that you had endometriosis is also relevant to why they suggested to avoid HRT ? Just speculating, I didn’t have endo diagnosed.

[Mothbag in reply to Farfromthemaddingcow]

How interesting that there are so few, I didn’t realise it was such a tiny number. In December I was trying for ages to get rid of what I thought was a UTI, and almost anything I ate was giving me heartburn, and then one day I could feel one side of my abdomen was a lot more more raised up than the other. I found out later it was my organs being squished by a 15cm borderline cyst plus another 6cm benign cyst. I feel very lucky that my GP recognised my symptoms and put me on fast track straight away. How was yours spotted?