3 days into Diagnosis: Boderline Mucinous Ovarian Tumour

[Riverdene23]

In July 2022, I finally got an ultrasound for abdominal bloating that showed a very large cyst on my right ovary and I was told to go to gynae emergency. After an MRI and blood tests, I was told 2 weeks later that I had what seemed to be a very large 19cm 'Simple Cyst' that would require surgery for removal due to it's size but that I would be put on the routine wait list as it was non-urgent.

After worsening symptoms, my abdomen getting increasingly larger and many calls to the hospital over a few months, my surgery was booked and performed on 02-Dec-22. They removed 4L of fluid first, and cut the cyst out by mini laparotomy, the ovary was saved and left in place. I've recovered well 6 weeks later.

3 days ago, the histology came back to indicate it was a Boderline Mucinous Ovarian Tumour, not a simply cyst. I'm left a little confused by the reassurance from the clinical team that it's not a cancer despite having abnormal cells, but it's neither benign or malignant.

I have a CT scan booked on Monday to check my abdomen and appendix for any other tumours and then my case is being referred to St Mary's in London to issue a treatment / monitoring plan in the next 2 weeks.

At 28 years of age, and in a stable secure relationship, I'm young and wanting a family in the next 5 or so years, so it's a case of hopeful fertility conservation at this point. On the previous MRI and ultrasound, nothing was initially detectable on the other ovary.

I'm of the understanding that it may required to get the affected ovary removed, along with my appendix, and check for seedlings.

Has anyone else gone through this process? What questions should I be asking the clinical team?

[Starbarn]

hi riverdene. I’m sorry I cant help with info but ovacome have a help line and will be able to point you in the right direction. Hopefully someone on this forum will respond soon.

[Zelam]

Again, sorry I can't help with info but hoping you get some answers soon x

[Mund2121]

Hi,

My situation was very similar to yours. I had a large borderline mucinous tumour removed from my right ovary in December 2019. I was 49 and had the full debulking surgery ( appendix left in) . I also had one chemotherapy treatment to mop up any possible stray cells ( tumour had to be surgically ruptured prior to removal due to its size) however, covid hit so treatment stopped. A second opinion from the Royal Marsden followed no further chemotherapy was recommended . I am still under the care of the Marsden having regular CT and MRI scans together with blood tests ( ca 125 and ca 19) .

If you look around this site there are quite a few of us who have had this diagnosis and lots of excellent information and advice. The American Inspire site is also very helpful.

Recurrence rates are very low and generally the prognosis is very good but it’s important to do your research to enable you to make the correct decisions going forward.

Please don’t hesitate to contact me should you have any questions.

[Riverdene23 in reply to Mund2121]

Thank you for sharing, it's reassuring to hear and know other people's stories and treatments!

[Danteandsam]

yes I also had similar, found during 2020 and they eventually removed a 40cm tumour via hysterectomy in March 2021. Didn’t know it was a mucinous BOT until after surgery. The whole is it really cancer thing is confusing but it does have low risk of recurrence. I am followed up every 4-6 months currently. Important thing is you are younger tho and want to have children. I second ringing Ovacome but also if you’re on Facebook there is a specific BOT group and a number of ladies talk about fertility issues there. Wish you all the best.

[Riverdene23 in reply to Danteandsam]

Thankyou so much for sharing with me, it's good to know other people's stories

[Danteandsam]

facebook.com/groups/borderl...

[Leniko]

you may want to consider harvesting eggs.