Endometrioma or Borderline Tumour

[emma1980]

Hi all

I was told 2 weeks ago I had a 5cm chocolate cyst, advanced endo and bad scar tissue. I'm booked for surgery early October. All of this was a complete shock as the issue I went in about was fibroids.

I got a letter from the hospital today that

they sent to my doctor. It said I had a "left complex ovarian cyst suggestive of either endometrioma or borderline tumour". I don't recall the word tumour being mentioned and obviously this has freaked me out!

I'm not understanding the meaning of borderline tumour on google search - is this something I should be really worried about or am I over reacting??

I'm 34 years old by the way!

[Impatient]

Complex is actually great news - might not seem like it right now - but you get fast tracked for surgery as you have discovered -queue jumping by a few months.

The two factors that would be any cause for concern are your age - OC is primarily a cancer of after the natural menopause and that's somewhere in the region of 50-55 years of age for menopause, so if you were in your 50s to 70s risk of OC is a lot higher.

Before menopause age the risk is very low indeed.

The other factor is to look at your immediate family history of breast and ovarian cancers at a young age. These are more likely when people are carrying the BRCA 1 and BRCA2 gene inherited down generations. If any of your grandmothers, mum or dad or sisters have had breast or ovarian cancer at a young age -under 50, then your chances of it being OC might be higher because of that.

If no immediate family history of young age breast and ovarian cancrs then chances are very low indeed.

On the flip side Endometriosis is over 10% of all women in their reproductive years.

In a random sample of 100,000 women of your age in the course of a random year,

over 10,000 will have endo and be living with endo,

just over 100 will be found to have OC that year.

So while that doesn't entirely discount OC and there will always be the rare exception, the odds are overwhelmingly stacked in the direction of this being endo.

I had two complex cysts and after complaining of endo symptoms for decades, with no one listening, it was the complex cysts that got the Doctors attention, got me fast tracked to surgery and stage 4 endo was discovered and after a big op and long recovery I am so much better than I had been for so long.

There is a health unlocked forum for OC called ovacome.

I joined there 1st - before the surgery because like yourself was warned that the cysts could be sinister and my CA125 blood test was elevated too.

What I didn't know at that time was endo elevates the CA125 blood tests in most endo ladies, so it is very unreliable and cannot distinguish between OC and endo.

They were very helpful over on the OVACOME forum and I know of many forum members who have had the same journey - the fear and trepidation of OC being diagnosed, joining ovacome while they await their op, then the discovery that endometriosis is the alien inside.

And they migrate over to this forum. I wasn't the first and there were plenty after me.

Also a factor to be aware of is a 15% failure rate in recognising the right sort of ovarian cyst from an ultrasound scan. It is something to bear in mind too as it is quite high.

So what may be suspected to be an endometrioma or OC mass from what looks like a complex cyst at a scan can turn out to be a mistaken diagnosis and a different type of non-malignant cyst is found instead.

All things considered please don't worry too much - being fast tracked for the first op is a god send, at least once that is over you know what the true situation is inside of your body and depending on the results you can begin taking steps to remain well in the future.

Ovarian cysts come in several types, some you cannot feel at all, some are a pain from early on. Some pop by themselves and disappear, some are slow and steady growers, some are rapid growers, some spring a leak and hurt all the time. You cannot prevent them while you have at least one ovary in the body, but if you are fond to have endo too then existing endo can be removed and there are many options to try and reduce the risk of new endo spreading.

My two complex cysts were an 8cm cyst hidden behind the uterus causing me no symptoms at all - I hadn't clue it was there, it was missed completely in the scan that picked up the remnants of the burst cyst on the left ovary that was being investigated at the time.

it then refilled and rapidly grew. it was 6cm at the follow up scan about 5 weeks before my surgery and that one had been causing me agony since the initial explosion.

That follow up scan is the one that picked up the 8cm complex cyst.

Prior to that the only clue I had was a tummy bloat and my belly button was no long dead centre but pushed over to the right by about an inch or two.

I had commented to my mother that my belly button was not in the middle anymore a few weeks before that 1st cyst popped. Didn't occur to me anything was wrong inside, it was just odd.

All ovarian cysts are tumours or masses. Which terms get used depends on the medic speaking, it doesn't necessarily mean cancerous or malignant when they use those words. They are just general terms for an unidentified lumpy growth of tissue or cells that should not be there in normal circumstances.

On the down side of this - having appreciated the fast track to appointments and surgery, when it does turn out to be endo, wave farewell to a speedy NHS, and you'll be back on normal length waiting lists for everything afterwards which is VERY annoying.

There is very good advice on the surgery side of things

on the Adeno website. adenomyosisadviceassociatio...

look down the menu for info pages on pre-op questions, what to pack, preparing home in advance for when you return after the op.

Adenomyosis is a very similar condition to Endometriosis and the advice holds good for most surgeries anyway - so do have a read through as there are loads of useful tips you may not have thought about.

Do pop back to here for any questions that may occur to you. There are thousands of forum members and a significant number of us have had surgery for endo and a sizeable number have been fast tracked because of suspect cysts too.

I can't recall any on fast track who did end up with having to head over to Ovacome's forum if that's any consolation.

OC is so rare in the 20s and 30s if you don't have a family history carrying the BRCA1 and 2 gene defects, though the fear of the unknown will always be a worrying time, try not to worry unduly. It won't be much longer till you do find out what really is going on inside you. Very best of Luck.

Hope it isn't OC or endo either, though most likely it is endo.

[emma1980 in reply to Impatient]

Hi there! Thank you so much for the detailed reply!

There is no cancer of that type in the family that i am aware of so that's a good thing.

I'm in Ireland and am paying privately which is why i got the speedy appointment, on the public list, i was told there was a 12 month waiting list just to see a gyno and because i am in pain EVERY DAY then i obviously couldn't wait that long so i am going for the quicker but costly alternative!

I originally went to hospital 3 years ago with chronic constipation and all over stomach pain - i was basically told by the consultant that it was all in my head and to eat more fibre and lose weight and all would be fine. They stuck numerous cameras up me and down me and kept saying all was clear and then said it was IBS.

So, here i am 3 years later and 4 stone lighter and in more pain that ever before. I decided then that i needed to see someone else as i was getting nowhere. I had an Ultrasound which showed Fibroids (i had a op 5 years ago to remove fibriods so this was no suprise). I went to the specialist with this and he arranged an MRI which showed the cyst (blood filled) and he said that it would be advanced endo - so basically, i went in expecting to have an operation to remove fibriods and came out finding out there was a different issue altogether!

When i saw that letter today i did in all fairness get a fright as i really don't recall anything being said about a borderline tumour - i presume they won't know until they operate what exactly it is?

The operation is booked for the 3rd October and they will be removing the cyst, removing the endo and cleaning up the scar tissue....