Borderline ovarian tumour

[alliharri]

I had op 4 weeks ago had 14cmx11x8 ovarian cyst removed also ovary and tube got a phone call 3 days ago asking me to come in today and although the ca125 test before surgery didn't show anything they have found a borderline tumour in the removed ovary I have been referred to oncology gynaecology who meet Monday morning and will discuss my case but it looks like full hysterectomy. How long should I expect to wait for next surgery? What is the outlook? Due back at work on Monday night don't know what to tell them. And here's the big one...have I got cancer? I'm confused?!

[Lindaura]

That is confusing and difficult news, but the upshot seems to be that you will need to wait for your appointment with the Oncologist to get any real answers for your way forward.

How has your recovery been from your recent surgery?

We cannot predict what your next steps will be. Hopefully they will do a PET scan to look for anything else, but be prepared for treatment that may include Chemotherapy.

It does sound like they are thinking cancer, but if it is, it is manageable. Just another journey none of us planned on taking, but you will get through it.

Do as much research as possible and enlist a loving friend or family member to come with you to your next appointment . Record it on your phone even.

Knowledge is power.

Best wishes,

Laura

[TinaB1]

Hi there ... if you have a borderline tumour or borderline cells, at many hospitals, it’s now unlikely you’ll have chemotherapy.

It’s hard to say if you’ll get cancer. Some studies have shown that borderline cancers can lead to low grade Ovarian but this isn’t a given. Many women who have borderline never develop cancer.

The other thing to think about, is that if the borderline is only in one place, and it’s removed, then there’s every likelihood you won’t ever hear about this again.

It really depends on what the tumour’s biology is. It’s best to look on the bright side. (Easy for me to say, I know!) Ovarian itself is a relatively rare disease.

If you do get advised to have a hysterectomy, it would only be as a precautionary measure.

Hugs.. xx

[charlie12]

Hi there

This must have been a terrible shock for you ...so sorry. I had a similar experience back in 2010 and you have my sympathy.

Borderline tumours are not 100 per cent benign , but are also not invasive cancer. It would be very very unusual for chemo to be considered as surgery usually cures them ! The fewer female parts you have the lower the risk of it recurring , is my understanding. I was told that Once these are removed the chance of recurrence is less than 5 per cent. The doctor would have had a good look around your abdomen during the first procedure and would be highly likely to tell you if he or she saw something very concerning.

How long you will have to wait will probably depend on your hospital , how urgently the consultant wants to do it and how you are healing. It’s a really confusing diagnosis to hear and even more so to explain. Tell your boss what’s going on if you can. As far as you are aware you don’t have cancer at the moment , but you need further surgery to prevent it in future.

There is an excellent Facebook page for borderline ovarian tumours where you can get in touch with people going through similar experiences.

Take care xxxx

[Lindaura in reply to charlie12]

That was very informative.

Thank you.

From Laura

[Maus123]

Hi there. It's a lot to digest and a confusing and frightening topic, that's for sure.

The appropriate time between surgeries depends on the severity of the surgeries and your rate of recovery. Best to determine that together with your GP and surgeons.

Some useful information about borderline tumours can be found here: ovacome.org.uk/wp-content/u...

/edit: I had written more but the other ladies had summed it up well already.

All the best for the surgery. Maus

[alliharri]

Thank you everyone you have answered my questions and helped me with research etc but you know what it's just this fear

[Mrs_Atko in reply to alliharri]

Hi Alli, you’ve already been given some excellent advice and information and I second what the other ladies have said. I was diagnosed with a borderline mucinous tumour 2 years ago aged 33. First op was in June 2016 to remove tumour and then 6 weeks later I had my second op (by Onc) to remove affected ovary, tube and my appendix. At the same time they took biopsies of my omentum and took abdominal washings. My CA125 before all of this was normal so generally not a good indicator. Your treatment will very much come down to your ‘staging’ but for most borderlines, chemo is not required and the prognosis is good. The gold standard treatment is usually a full hysterectomy but due to my age this wasn’t advised (for now). What is key is regular monitoring. I see my Onc every 3 months with an USS scan every 6 months. Come this August I’ll be 2 years in the clear. I hope this site helps you with your journey. Feel free to message me if you’d like anymore info. Wishing you well for the road ahead xx

[alliharri in reply to Mrs_Atko]

Thank you all of these replies are helping me get all the questions i need to ask straight in my head. What feels weird is having it and having it removed before I knew I had it if that makes sense.

[Fred616 in reply to alliharri]

Hi Alliharri...I am sorry to hear that you are in this in-between phase. I have recently had ovarian surgery and awaiting results but I am writing to identify with the odd feeling after having a cystoscopy in February. After this I was told I had early stage bladder cancer but that it had all been removed! So I was in that strange place that you describe, of having had it without knowing and that it had gone...so that weirdness makes sense to me.

Look after yourself and whatever happens next.

xx