Ovarian Cancer?

[seeminglyso]

Hi there,

I went in for surgery for endometriosis on Friday (I have pretty bad stage four). He found it was all over my bladder bowels etc and will need a further three hour op with a bowel surgeon. None of the work was carried out as he found a tumor (cauliflower looking) about 4cm by 4cm (it was thought by the sonographer this was an endometreomia) and so this was removed using the bag technique and he did a peritoneal wash.

Its been sent for urgent biopsy but he suggested it could be cancer could be boarderline.

I have a toddler and I am absolutely terrified.

I don't know anything about endometriosis, tho' a quick google shows that an endometrioma tends to be benign.

But I have just had a very large borderline ovarian tumour removed and the surgeon told me I have as much chance of being struck by a meteorite as of it causing any further trouble. If I had wanted to have more children, they could have left the other ovary until I had completed my family.

Borderline tumours have abnormal cells but they are not cancer cells. They are non-aggressive and non-invasive and, if they do spread, they just sit on the surface. The peritoneal wash will tell the surgeon if this has happened and he will have had a good look round to check other organs.

Malignant and borderline ovarian tumours look much the same on a scan. You can only really tell in the Lab. If your sonographer was a radiologist, I think he/she probably knew what he was talking about when he said it looked like an endometrioma.

You need to be sure you are being treated by a gynae with oncological qualifications. But, I think, from your history it's much more likely to be connected with your endometriosis than ovarian cancer, tho' obviously they have to check.

Useless, I know, to say, 'Don't worry', but from what you say I think it sounds quite positive. Good luck!

Hi there thanks for replying.

The tumour is unrelated to the endometriosis (the sonographer was wrong in thinking it was an endometreomia and no doctor or consultant has ever looked at the scan pictures). The only link is that you are at a four or five higher risk of ovarian cancer if you have endometriosis.

Did you get the pathology report? Do you know what type yours was as the reoccurrence rates are variable. How were you diagnosed if you don't mind me asking and did you have any symptoms? How large was your tumour?

thanks so much for the reply

Mine was 'a borderline mucinous tumour'. Huge, took up most of my abdomen, was beginning to squash lungs and stomach, surgeon said it weighed about 4lbs. No symptoms at all. I just thought I was developing a bit of a tummy, like everyone else my age. (I'm post menopausal.) Seems daft now. No symptoms is good if it's large because if it had been malignant it would have metastasised and be causing problems elsewhere.

I first saw a Gynae at my local hospital and was lucky to be referred to a big teaching hospital. The Gynae didn't have any oncological qualifications and it's really important to be seen by a Gynae oncologist. She wasn't v encouraging and it was a huge relief to be told on my first visit to the teaching hospital that they thought it was benign but....couldn't say till after surgery. Didn't see the entire path report, just the letter sent to the Gynae at my local hospital.

Scans, MRI, CAT, fine needle biopsy, all 'inconclusive'. Have you had a CA125 blood test? Mine was over 100, but apparently normal for me with a huge tumour rubbing against other organs. It's not v reliable, particularly with younger women.

I've had the tumour, both ovaries, uterus and a slice of omentum removed. Lymph nodes sampled. Everything, including other ovary, OK. 'Borderline' is tricky to diagnose pre surgery. If there had been any malignant cells, I'd be on chemo now.

Don't know about recurrence, except it is very very unlikely in my case. Some hospitals would have discharged me at this point, but I'm to have regular scans for a bit just to make sure I don't have another borderline tumour waiting to pop up somewhere else.

When will they be removing your tumour? What did the biopsy show? Hoping you get good news soon.

Sorry - just read your OP again and realised that they have already removed the tumour. That's good, tho' waiting for results is terrifying.

I went to my GP for valium and anti-d's after my first appointment because I was so anxious I couldn't eat. They were a great help.

Hi there

still waiting .... I am feeling okay about it all but I actually think I am blocking it out now rather than dealing with what might be.

My gyne took it out as he said it looked very similar to either a malignant or boarderline and on visual appearance unlikely to be benign but he could not ever be definite about that until its back from pathology. In my mind I am preparing for boarderline as anything else scares me too much.

The CA125 is pointless as a marker as I have stage four endo so it would be raised anyway.

I feel let down, I was scanned nearly a year ago and this was seen however the scan images were never passed to my GP let alone the gyny consultant :( You had an awful lot removed for a boarderline didn't you. Why was that? Did you get much say in that?

I think it's different if you're post-menopausal. There's more chance of it being malignant than borderline so they take out anything you don't need any more and the omentum near the colon, where it might have spread to. They also need to stage it, whether borderline or not, because Stage 2 borderline has a less favourable prognosis. Most, including mine, are Stage 1, even tho', because of its size, it had obviously been there for a long time.

No - didn't get any choice in the matter, but was in no mood to argue. I just wanted shot of it and trusted that the consultant would know more about it than me. Didn't want to have to have more surgery if it turned out to be malignant. They really can't tell till it's gone to the lab.

It's different with younger women who want to have more children, but it sounds like a good idea to lose the other ovary when you've finished child-bearing, because there's more chance of a recurrence.

What sort of scan did you have a year ago? I thought they were all checked by a radiologist. I'm surprised you didn't have follow-up, 'wait and watch', scans. What is your hospital like? My original gynae doesn't have any oncological qualifications and seemed v negative, but the consultant at the teaching hospital immediately told me he thought it was non-malignant, based solely on size, state of health and mobility.

I've no idea how long it was growing, but mine would have been the same size as yours probably a couple of years ago, if not longer.

Yes makes sense to get rid if your post menopausal I suppose.

My consultant is a general gyny but with a special interest in endometriosis and as good as he is, this isn't his thing at all as he is not an oncologist. They took the mass and left the ovary but I think if it turned out to be boarderline I would want rid of that ovary in the next year because I would worry some cells were left in there.

A year ago I had both an ultrasound and a transvaginal ultra sound on two occasions. The lady who did it knew I was someone with endometriosis so she said that it was an endometomia cyst (she stated she was pretty sure). Nothing was ever passed to the GP but I went in as I was by this point very distended and having bladder pain and said you need to refer me back to the hospital, which he did. I waited four months for an appointment. then got a surgery date. Whatever it is I have had it for well over a year now and it seems to have stayed about 4cm (unless of course its gone bigger dispersed and is back at the original size).

:(

Not getting any bigger is a good sign. Borderline tumours are slow-growing.

I got a copy of letters sent to my GP by the teaching hospital surgeon before and after surgery and then for the formal diagnosis after the MDT had considered the Path results. But I was on the 2 week pathway from my initial visit to my GP, I suppose because of my age, high risk, and the size of the tumour. No info re scans was passed on. It was all v speedy and the teaching hospital had arranged a date for surgery even before my first appointment.

Sounds as if your endo was a bit of a distraction, but lucky you had the op when you did.

Wow sounds like the NHS worked really well for you. My delays have been awful...hence why I am in this situation really.

Yes endo for sure has masked the symptoms, well not masked but I have attributed all of the symptoms to endo when it wasn't after all :(

Anyway thanks so much for your response. There doesn't seem to be much activity on these health boards. I have posted in med health too as they seem to be more active. I really want to hear of others experiences to prepare myself for what might be to come.

Glad you are well and things worked out okay..one thing is for sure this kind of thing really makes you see what is important in life.

Where was the tumour- on your ovary or somewhere in your abdomen?
A 4cms cyst on the ovary is quite small- I had one just under that - 3cms x 1.2 cms- and it was monitored for 2 years every few months. It went away on its own.

I know it's easy to say but try not to worry- it's most likely all ok.

Hi there, thanks for the response it was ovarian cancer of low malignant potential. I wish it had of been a cyst..the fact a mass/tumour was confused with a cyst was part of the problem.

It's impossible to distinguish on a scan between a cyst and a tumour, which just means 'lump', when it's so small. And lots of young women get cysts which disappear. They can't all be referred for surgery - a lot of ovaries removed for nothing - tho' I do think yours should have been monitored.

Don't get hung up on the 'cancer' label. It's a v controversial area but most docs dispute the terminology. Focus on 'low malignant potential'. I read somewhere that if it were staged in the same way as ovarian cancer, it would be stage 0. And the survival rate, just with surgery, is practically 100%.

What advice have you been given re further treatment/completing your family?

Hi Thymeout sorry I haven't been on to reply, its been a tough time and I have spent hours researching and reading material a contact of mine has dug out (she is a gyny oncologist).

I see my consultant on Tuesday but he is gyny and so my guess is that he will have spoken with oncology and they will have come up with an action plan. I don't know what the out come will be but I am hoping for fertility sparing surgery for now with 'completion' surgery when I have finished having children. Therefore I will be waving good bye to my offending ovay, tube and possibly appendix and omentum?

I started a group on facebook if you are on there search 'borderline ovarian cancer'. I think its useful to hear positive stories and have access to other women as rare as ourselves :)

Is yours mucinous like mine? That seems to be the one where they remove the appendix but they left mine alone. Not looking for further surgery, but will ask about it when I see my consultant in Jan.

I think he only took the omentum, near my colon, because at that point he didn't know whether it was cancerous or not, and it's one of the first places for metastases.

I'm nearly 6 weeks post-op and feel incredibly well. Just get a bit of backache when I have to stand for long, e.g. queuing.. All sorts of minor niggles that I thought were part of getting older have completely disappeared. I've lost a lot of weight since I had to weigh myself for my MRI and dropped a dress size, tho wasn't really overweight to start with. An unexpected bonus!

Yes - didn't realise how lucky I've been. Less than 5 in 100,000, in my case. And most of those were pre-menopausal. Much more likely to have been the Real Thing at my age.

Thanks for info on Facebook group. From what I've read, it doesn't seem to cause fertility problems, so best wishes for completing your family.

thymeout I also had a boarderline mucinous cyst removed, 3 years ago. In my case it had 18litres (yes,litres) of fluid, had been growing for years but it was only in the 6 months before it was removed that I started looking pregnant as opposed to gained a bit of weight.

I had surgery to remove the cyst,ovary and fallopian tube.It wasnt found to be borderline until they ran pathology on it after removal,the ovary was beyond saving so was coming out anyway. But I was told that the normal treatment for a borderline tumor is removal of the effected ovary and follow up checks for 5 years,which for me is a blood test and ultrasound. Theres virtually no increased risk of me getting another borderline tumor and no risk to my fertility,i've had my first baby since it all happened.

Its completley terrifying to be told something like this but try not to panic,it's natural to think the worst but just look at how many of us here have had similar experiences and are absolutly fine.

Thankyou Mrs Leo. V interesting to hear from someone further down the road.

Tbh, I was more scared before the diagnosis, after the post-op path results, because, being post-menopausal, it was more likely to be malignant. My consultant told me I had as much chance of any further problems as of being struck by a meteorite, which is good enough for me. Especially as my ward-mates already had secondaries with much smaller tumours.

Don't know about fluid, I think mine might have been more solid, with multi cysts, but the surgeon guessed it was over 4lbs. It was squashing lungs, stomach and bladder, which I dismissed as 'just a bit breathless, poor appetite and - 'well, not surprising to have dodgy pelvic floor after 3 chidren'.

Glad to hear the follow-up scans are ultrasound. I felt v woozy after 25 mins in the MRI scanner and had to press the panic button.

Hi ladies, I am so slow on replies...not really a mums netter to be honest so only log in occasionally.

Have either of you ladies read any of the research material. I have read a recent study by a German group which is the largest on BOT's that there is I think. I don't know why they tell you that the risk of recurrence is so low, they wouldn't do full radical hysterectomies on young women if it was the case ...unless you have extensive radical surgery the risk of recurrence of a borderline are not so low. There is also a chance of it coming back malignant in the future hence the follow ups.

Mine is Serous which I think are a bit more common?

I've dipped in and out of Google, but obviously the fertility preservation stuff doesn't apply to me. Think I read somewhere that recurrence in remaining ovary is 10-15 percent? But it's difficult to find a reliable figure because too few cases and a lot of earlier cases weren't staged correctly.

I was told that after all my surgery, some hospitals would discharge
me at this point but mine is a leader in the field. (Famous London teaching teaching hospital.) Although I no longer have ovaries or uterus, there's a very remote chance there may be a stray cell that could implant somewhere else. I think they also want to keep track of me for their research stats, being so rare and all.

As far as surgery goes, I think removing an ovary is relatively minor compared with a hysterectomy, which is a much bigger deal. But the consultant did say, pre-op, that they were taking the other ovary because what happened to one was more likely to happen to the other.

How did you get on today Seemingly?

I just got told I am being handed over to oncology and even though I requested a change of hospital (want to go somewhere bigger that has a proper specialist centre) but was told after the Multi disciplinary Meeting this will be decided? So still no further along :( Were you told if yours was micro papillary or Low malignant potential as this wasn't on my pathology report which was very basic :(

All I've seen is a copy of a letter to the Gynae consultant at my local hospital, aka Dr Doom. It was addressed to her Christian name, and started 'as you know' so it sounds as if there'd been some previous communication. She isn't an oncologist and wasn't v encouraging on the one occasion I met her. It referred to a borderline mucinous ovarian tumour, stage 1c.

'Low malignant potential', 'Borderline Ovarian Tumour' and 'Borderline Ovarian Cancer' are all terms for the same thing. TopDoc, who is an oncologist - and I was treated in oncological outpatients and on an oncological ward - avoided the word 'cancer' and stressed to me that although the cells are abnormal and share some of the characteristics of cancer, they are not malignant.

Don't know about micro-papillary. He did say something about the cells' DNA and how it made me even more unlikely to have any further problems.

But, if I were you, I'd get on with completing your family and get shot of your ovaries when you have. You don't want another borderline tumour, even many years down the line, because they just go on growing and eventually cause problems, even if there's no malignancy.

Hope you get some answers soon. Could your GP request a more detailed Path report and explain it to you?

I would understand the path report better than my GP, even my consultant didnt have a clue about some of the questions I was asking about the findings so the GP would be worse than useless, besides I have no faith in him at all.

So do you feel that it is grade 0 cancer then? Or do you avoid the 'cancer' label. Its so complex even the medics/researchers don't agree :( We are in a limbo really.

Are you anywhere near London or Manchester? If London ask to see Jonathan Ledermann at UCH, I think, google him or if North then Gordon Jayson at The Christie in Manchester. They are the 2 best gynae oncologists in the country. If you can't get referred and can afford it then I would see either of them privately. They will give you the gold standard answers.

Seemingly No - I don't think of it as cancer, but as an entirely separate abnormality. Like cancer, the cells have the ability to form tumours. And cells from the original tumour can, very rarely, detach and 'implant' somewhere else and form another tumour. BUT, and this is crucial, they do not invade and destroy the organ they're attached to.

My tumour was 'taking up most of the abdomen.The size of a full-term pregnancy'. Yet I was living a normal life with no symptoms worth going to a GP for. It had been growing for years. If it had been malignant, I'd have been six feet under, not cutting the hedge or painting the ceiling. There were women on my ward who had tiny tumours by comparison, but they were already Stage 4. Ovarian cancer is very aggressive.

I did come across a study where the the survival rate for BOT's was less than 100%. The fatality was an 80 yr old woman who hadn't had treatment, i.e. surgery. The tumour had pressed on her bowel and she died during an operation to remove the blockage.

I've no medical background, but I do trust my surgeon. I'm quite sure he wouldn't have used the word 'cured' or the meteorite analogy if what I had could be described as 'cancer'.

But your case is different. Partly because of the endometriosis, and partly because you need to know if 'conservative' surgery is a safe option in your circumstances. So I agree with Houseprices. I thought you still had the right to specify the hospital where you are treated? If it no longer applies, I would have a private consultation if the MDT doesn't refer you to a specialist centre. You need more than a general oncologist.

We all have lots of lumps and bumps inside us. Most of them are nothing serious. I had huge ovarian cysts that turned out to be made up bits and bods.

Sorry not read thread.