Borderline Ovarian Cancer - I'm confused......

[50ftQueenie]

Hello, I have just been told that the ovarian cyst I had removed 6 weeks ago was borderline cancerous. Now I understand what that means, basically that it is very low level cancer, very early stages. I was told by the consultant that I would have to make a decision to either have a total hysterectomy (which I don't want as I am only 32 and might want another dc) or risk the cancer spreading. If I choose not to have a hysterectomy I will need to be closely monitored every three months, for I don't know how long. Obviously the first thing I did when I got home was to do some internet research. I have found lots of information (including Cancer Research and Macmillan) suggesting that with borderline ovarian cancer, once the cyst is removed, no further treatment is required & that it is unlikely to reoccur. So now I am a bit confused. I also had part of my omentum removed and this was absolutely fine, indicating that it hadn't spread. Anyone had any experience of borderline ovarian cancer? Where you told something different? I would be very grateful for any replies because as you can imagine, my head is a bit in a whirl! Thanks.

[saralou]

sorry to hear this, very confusing time for you. were you expecting this result??

try ovacome.. it's an ovarian cancer website, has a forum, does lots of research and has loads of info, plus the chance to speak to people who have experienced the same.

good luck xx

[saralou]

sorry, forgot the link!

www.ovacome.org.uk/

[saralou]

www.ovacome.org.uk/

try again!

[50ftQueenie]

I wasn't expecting this result at all! We thought we were going for a post-op check up type thing. Thanks for the link, I will take a peek.

[50ftQueenie]

There doesn't appear to be much on that website, so bump!

[BellaNoir]

First of all, I'm sorry to hear of your diagnosis.
I am not a specialist in this area but do come across info/patients with this during the course of my own field of work. I have also had (what turned out to be a benign) ovarian cyst removed, so the following is based on my own experience and is not professional advice!
Did the consultant give you the contact details of the gynae oncologist nurse specialist? Most centres now have someone who acts as a contact point and they have lots of information and can help give you advice to help you make a decision about what to do next?
If they didn't I suggest ringing the consultant's secretary to see if they can give you their details.
I think that some consultants favour further surgery to be certain that there's no tissue remaining which could have some abnormal cells; however as you've found from your research many suggest that no additional treatment is needed, just monitoring. With any speciality there are people having different approaches to patient treatment and management.
It's a difficult decision to make.

I suggest writing down questions such as the ones you've already raised - if I opt for the 3 monthly monitoring - what will the monitoring and be and for how long?
Have they any data from their hospital about likelihood of recurrence or progression if you do opt for monitoring.
Just had a quick look round some journals, much of it is not written for patients but medical/researchers, so personally - I would go back to your specialist for the advice.
The backup site might be useful.

HTH & best wishes to you and your family

[50ftQueenie]

Thank you Bella. It has been a tough day today for me & Dh. There is so much conflicting information out there.

[seeminglyso]

Hi there,

I hope you don't mind me contacting you but I have today been told I have a boarderline treatments tumour and so I was googling and this thread came up.

I wondered how things progressed for you and what treatment and follow up you received as I too am confused by the conflicting info out there. I am 33 and want another child (I have one boy aged 4 in Nov).

I do hope this finds you well. We are a rare breed indeed!

[Thymeout]

Seemingly I was on your other thread. So glad to hear the results of the biopsy.

Would like to correct the OP's assertion that this is cancer in its early stages. It really isn't. The top consultant at my hospital said that it's difficult to explain, even to a pathologist. It's not like the 'precancerous' cells in the cervix which change into cancer. If there were any malignant cells I'd be having chemo at this moment.

These cells are similar to cancer cells in that they form tumours and they can spread to other organs - but very slowly. However, they are non-invasive, just sit on the surface of the organ. But tumours are tumours and, benign or malignant, can cause problems by pressing on other organs. As I said, in my case, it was beginning to affect my bladder, stomach and lungs.

And my consultant said that if it happened with one ovary, there was a chance that the other one would go the same way.

What advice have you been given and how qualified was the person giving it? I'd want a second opinion, but in your position I'd go ahead with my plans for another child and then review the situation, tho' I'd guess that your endometriosis might complicate things?

[Mothermason]

Hello, I have stage 3 borderline ovarian cancer tumours removed last month. I really want another child but it’s being suggested I have a hysterectomy. What were your outcomes? Only 2 in 100,000 women in UK get these each year and the average age is 55 so I’m really struggling to find anyone my age who has had one and still had a pregnancy xx

[Thymeout]

Hi - I contributed to the original thread. I had a Mucinous Borderline Ovarian Tumour - MBOT - Stage 1c in 2014. Just coming up to the end of 5 yrs' monitoring. Annual now. Originally 3 x a year. Bloods - Ca125 and Ca 19. TV US.

I'm surprised that you say the ave age is 55, because I thought it was more common pre-menopause. Perhaps the median age is younger? Post-menopausal women are more likely to have ov ca than Borderline. I still make a distinction between Borderlines and cancer, because that's what I was told by a top consultant at a London teaching hospital. Borderlines are 'clinically benign and cured by surgery'. There's a small chance of recurrence. And a small chance that those that do recur will be malignant - low grade ov ca. So a small percentage of a small percentage. I think the small percentage in each case is less than 5%?

BUT this is after surgery. And if yours is Stage 3, I think you might be higher risk. (I'm not a medic, but have read up on the subject after diagnosis.) Most Borderlines are Stage 1. (Unlike ov ca.)

I had the full Monty - uterus, tubes, ovaries and omentum removed - because I was post-menopausal and didn't need them any more and more at risk from ov ca.

I know they can do conservative surgery and leave the uterus and other ovary so that a younger woman can complete her family - but it's still recommended to get on with having the baby asap and have more surgery later.

It depends on your path results. This small subset of Borderlines with potentially malignant cells can be identified by a distinctive shape - micropapilliary?

Where are you being treated? You need a gynaeoncologist and a pathologist with experience in Borderlines, which probably means a big specialist cancer facility. If you want to postpone more surgery, I'd get a second opinion from somewhere like the Marsden or Christies. The UK expert used to work at UCLH in London. Your consultant should know.

There used to be a Facebook group, where you'd find younger women. Ovacome have a nurse you can ring for information. The American site Inspire might be more helpful because of a bigger demographic.

Tbh, I wouldn't turn down the recommended surgery in your position unless someone more expert than your current doc said it was OK. I wouldn't take the risk. You don't mess with ov ca. The stats really aren't v good.

Best of luck! It's a lot to get your head round and there's not much research on Borderlines because relatively so rare.

[Mothermason]

@Thymeout wow thank you for such an in-depth reply. So you’re never came back in that time?

I will look into those hospitals. I’m at Southend hospital, my surgeon is speaking with someone in London for second opinion. Think I’d also like to get my own second opinion.

God knows where I got average age from - maybe that’s wrong! I’m still struggling to find anyone to talk to who’s been through this. It just feels so confusing and lonely.

Thank you

[Thymeout]

No recurrence. TopDoc at St Thomas' - also on call for the Marsden - said I've as much chance of any further probs as being struck by a meteorite/run over by a London bus/or any other unlikely thing I can think of. But I've had the full surgery and even so, they're still keeping an eye on me. 1c means it was only in my ovary, but the tumour had leaked and there was a risk that Borderline cells might have taken up residence in my abdomen. Even if it is clinically benign and they're not invasive, they don't want me to get another one that might squash something important. I had some CT scans last summer, for something else, and they were clear.

Does your hospital have a gynaeoncologist? Mine doesn't which doesn't matter because we're nearer to London than you and it's routine to refer to one of the teaching hospitals. It's good that he's getting a second opinion. They will have access to a specialist pathologist and also experience of others in your position.

Yes - it's really confusing and I had a bit of a rocky road before diagnosis with DudDoc at my local hospital who scared the bejesus out of me, talking about chemo and no surgery. It was a massive relief when TopDoc said, 'Well I think it's benign and will operate in 13 days' time'. I nearly fell off my chair and sailed through surgery and recovery because I was on such a high. But I'm of an age when I'm expecting things to go wrong and it must have come as a massive shock out of the blue for you.

There was a thread on here a few years ago about Borderlines with someone premenopausal in the Facebook group. It might come up on an advanced search?

Fingers crossed for you. It'll be interesting to hear how you get on.

[Mothermason]

I will let you know what happens. Thank you for all the advice