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Original poster

Anyone with experience of ovarian tumour/mass.......need some help (and positive vibes if poss)

26 replies

alittleshocked · 20/02/2009 20:49

I'm a name changer for this, so please don't out me if you recognise me - I want to keep this as private as possible.

To cut quite a short story even shorter, I have been diagnosed with a large ovarian mass, part solid, part fluid and also have ascites (fluid in abdomen). Bloods showed a raised CA125 level and I have an appointment with Gynae Oncologist next week, and MRI scan too.

This has all happened within the space of a fortnight, and I am concerned, but trying not to worry too much till I know what we're dealing with.

Doctor at ultrasound told me to expect surgery very quickly and that they are unlikely to know what it is till its out.

Anyone got any tales to share?
It's been a bit of a shock

OP posts:
Lilyloo · 20/02/2009 20:52

Sorry no tales to share but couldnt read and not post.
Hope its not as bad as you fear.

RubyRioja · 20/02/2009 20:54

This reply has been deleted

Message withdrawn at poster's request.

ClaireDeLoon · 20/02/2009 20:54

Sorry no experience but wanted to wish you and send positive vibes.

nickschick · 20/02/2009 21:00

Positive vibes here for you too.

MrsJohnCusack · 20/02/2009 21:34

Hello
I had a very large (size of a football) ovarian tumour removed when I was 27. same a you, part solid, part fluid. Once diagnosed (via ultrasound) it came out PDQ. It was staged as Stage 1 in the end, so classed as non-benign - however, there are lots of different types of tumour. Mine, although classed as a cancer, was of a type that very, very rarely spreads, so I didn't need any further treatment other than the surgery. I did have to have the ovary removed, and my tubes were damaged, but, after a further surgery for adhesions, I went on to have 2 children with no problems or fertility treatment of any kind.

Basically, you are going to be worried, of course you are, but ovarian tumours are suprisingly common. If it is any comfort, the fact that it is large is actually not a bad sign, because if it has got so large and and you are not iller (IYSWIM) it is far less likely to be a truly nasty one.

My MAIN advice is to ask as many questions as you need to. I was youngish and a bit overwhelmed with it all and I did not ask about everything, and IME they don't neccesarily tell you enough, and clearly. Of course, all I wanted to know was would I be able to have children, and they couldn't answer that, but I also didn't even discover that it was classed as a cancer until later when I saw my notes at a follow up appointment and then got them to tell me just exactly what it was. So write down absolutely everything you want to know so you don't forget and make them answer it.

Good luck and I hope you don't have to wait too long - it's horrible.

MrsJohnCusack · 20/02/2009 21:38

oh and the CA125 is not a particularly good indicator on it's own of anything.

my friend here who is an obstetrics/gynae registrar told me that it is no indicator of anything and not a particularly useful tool on it's own, and should certainly NOT be taken to mean anything if it's elevated. MIL recently had an elevated one, had full body scan/checkup, and not a thing wrong with her.

so please don't read the raised level as neccesarily meaning anything one way or the other

foxinsocks · 20/02/2009 21:40

wow mrsJC, didn't know you'd been through that all

alittlebit, the waiting must be the worst. Good luck for next week. Am glad you are getting seen quickly. What a shock it must have been.

BonsoirAnna · 20/02/2009 21:41

for you. Ascites are very uncomfortable - are they going to drain your abdomen?

{{{hugs}}} and good luck for your op and keep us all posted.

ThingOne · 20/02/2009 21:55

I'm sorry to hear your news, and it's so hard waiting.

Try really hard not to google. So much of it will be completely irrelevant to your case.

Good luck for next week.

lisad123 · 21/02/2009 00:18

just wanted to say hope your ok. Im waiting for some results for possible tumors too and the 3 week wait has been hell.
Please come back and let us know how it all goes. Good luck and loads of hand holding coming your way.

Original poster
alittleshocked · 21/02/2009 10:02

Thank you everyone, very much.
MrsJC you are right. If it wasn't for my distended tum, I wouldn't have gone to the doctors at all, I really feel OK. Bit tired at suddenly being very fat, bit weak coz I'm not eating so well and really not much pain at all, the odd twinge, that's it. Everything else is fine. I am certain I would feel worse, like you say.

I have been very lucky in that this has all happened v quickly, saw GP Monday, saw emergency Gynae Mon PM, US scan wednesday, appoint with Gynae Oncologist next Wednesday. I will never complain about the NHS again!

Bonsoir I am going to MAKE them drain my abdomen - it is by far the most uncomfy thing. Getting to 8mths pregnant is bad enough, but getting to that shape,size and feel IYKWIM in a fortnight is a nightmare!

Thank you all again x

OP posts:
PeppermintPatty · 21/02/2009 10:19

Hello alittleshocked
I had an ovarian tumour the size of a melon removed in 2004. It was a borderline tumour which meant that although it was classified as as as non-benign it was one of the most harmless types that rarely spreads. Once I had it removed I didn't need any other treatment just regular check ups for a year or so afterwards. I did lose my ovary and tube though.
I had a macmillian nurse who was lovely, very helpful and answered all my questions and was generally there if I had any worries.
I agree with MrsJCusack - ask any questions you have and find out as much as possible. But try not to worry to much (it's hard I know). I remember feeling very strange when I was first diagnosed - like it was happening to someone else not me, detached I suppose.
Good luck

MrsJohnCusack · 21/02/2009 11:14

yy you sound very like me, I went because I wasn't eating and yet my stomach got bigger and bigger!

mine sounds v.similar to PeppermintPatty's

yes, the NHS does swing into action quite nicely at times like these. Good luck again, I know just what you mean about not feeling it's really you - it was a terrible shock for me and the recovery from the op itself was rather nasty for me as the tumour was so large - please make sure you've got lots of support in place for your recovery - in fact that's something you could do to 'keep yourself busy'!

veryembarrassedmummy · 21/02/2009 11:21

Agree you must ask questions- if the worst is found they might ask you to consent to a full hysterectomy at the time of the op- so you need to discuss the pros and cons of that.

I have a smal cyst which is currently scanned every 3-4 months. I also had the C125 test.
Iwas warned that this test is not accurate a lot of the time- it can give false positives, for all kinds of reasons, and it shows positive correctly mainly in 80% of cases of advanced cancer - which you do not appear to have from what you describe.
You don't give your age, but ovarian cancer is very rare in people under 40.

If they find out is is not benign, then they should refer you to a oncologist/gynae.

There are detailed recommendations on what should be done, by the Royal College and gynaes and Obstetricians. I haven't got the link to hand, but if you google RCGO /ovarian cysts, it should bring it up.

Good luck!

Original poster
alittleshocked · 21/02/2009 12:54

I have googled lots already Sorry. Though I did find it very reassuring - as most things are in my favour,
I'm 32, have a child (8mths old so enough to keep my mind off thiings!), spent many years on the pill, said child was delivered by emergency CS - so surely they would have seen something if it had been there then?
No history of it (AFAIK) in the family, tho it is male dominated.

They did explain to me about the CA125 test, that it is extremely unreliable in women of childbearing age and never used as a pointer to anything on its own - but when you know the CA stands for cancer antigen, its difficult to get it out of your mind

Also heartened by the fact that stage I masses are almost always sorted just by surgery, which seems to be the experiences on here too.
I am glad you are fully recovered.

OP posts:
Flightattendant27 · 21/02/2009 13:09

Hi, sorry to hear you're in the middle of this.

I've no personal experience but a friend had an ovarian cyst removed a couple of years ago that turned out to be cancerous - they did remove her womb and other ovary to be on the safe side. She has suffered a lot from cysts previously I think so it wasn't entirely unexpected.

She had some chemo for a while but is Ok now. She's 41 this month I think. She has suffered from anxiety about whether it might have spread and so on - but so far she is Ok, back at work, living a normal life.

Wishing you lots of luck xx

SubRosa · 21/02/2009 17:06

Sorry you're going through this. I had a large cyst removed from my ovary (it contained both fluid and a solid mass). It turned out to be benign; apparently most of them are.

I hope things go as well as possible for you. Good luck for next week.

Iworryalot · 23/04/2009 13:59

Hi there , reviving this thread in hope someone can help me.. i am waiting to go to see my doc tomorrow to i hope get reasurance , last year i had bloating and i do get bad ovulation pains , i went to see doc then who said was quite normal ... but as i was worried did and internal and said all seems ok but as i do worry and suffer with health anx , will send me for pelvic scan , which i had and he couldnt find anything ..
only of late the bloating still there almost all month and dull ache around pubic line .... scared and have googled and thinking the worst ...
so going back to doc ... could it just be stress ....

i have ibs to and had tests for this also lasy year , but now am wondering if it it really ibs or something conected to my womb,...

worried any advice , questions i should ask doc this time ?

Iworryalot · 23/04/2009 14:18

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Iworryalot · 23/04/2009 14:36

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Iworryalot · 23/04/2009 16:29

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hellywobs · 24/04/2009 10:31

I'm also having weird symptoms. I've been getting ovulation bleeding for about 2 years. At Xmas I had twinges in my right pelvic area for a little while but they went away (I was feeling very anxious at work at the time so didn't think anything of them). About 2 weeks before Easter I had a day when I felt very nauseous but after a day off work and not eating I felt a lot better.

Since the Tuesday before Easter I have felt like I have a constant something or other in my chest - a bit like the feeling you get if you swallow toothpaste by accident. As well as that I have had quite a lot of right-sided abdominal pain with twinges in my pelvis where I had them before. I've also had a bit of pain in my left side - but would say the proportion left to right is 10:90. I've also had some lower right hand side back pain, a few twinges between the shoulder blades and under my ribs. It's all twinges, so I don't need painkillers and comes and goes (apart from the feeling in my chest) and doesn't seem to be related to what/when I eat. Bowel movements and periods are normal (heavy but that's normal for me), appetite fine. I think I might be going to the loo a bit more often but it doesn't hurt and it's not cloudy or anything.

So anyway I went to the doctor who took a urine sample though she doesn't think I have an infection and has referred me for an ultrasound scan as she thinks it might be gallstones. She didn't mention ovarian cysts.

One of my colleagues has had ovarian cancer and they are pushing awareness of it so much at the moment that I am quite worried it could be that, even though I am only 37, don't fit any of the risk categories and there has been absolutely no cancer in my family apart from my nana who died at 91 of throat cancer having smoked like a chimney all her life. My dad had his gallbladder out. I am fair and fertile and nearlyish 40 but not fat (163 cm height, 56kg weight) :-)

I have googled too much - I think this really is a case where too much information can be a bad thing. I have been incredibly anxious at work and it could be purely stress-related but until I've had the scan I don't know of course.

To: Iworryalot, GPs may only see one case of ovarian cancer in 5 years. You do need to mention it if you're worried it could be that so they do the right tests. I should have mentioned it to my GP but I will make sure they have a good look at my ovaries when I have the scan.

Iworryalot · 24/04/2009 10:45

Hi Hellywobs , good your doc sending you for scan i had an internal and external scan last yeay he told me there and then all was fine so felt alot better , i suffer with ibs cos of health anx .... and often get pains under my ribs and sometimes shoulder wind can cause this mine generally goes once i relax and take deep breaths , do you get anx ?
i just returned from my gp who examined me and said she could not feel any thing un normal and thinks its just ovulation pains and bloating as i have such a short cycle or could be my ibs ..
however because i do worry suggested i had full blood count done today along with , thyroid , liver , inflamation test and the ca 125 and if they all come back normal im not to worry .... easy to say ....

do you know when your scan is ?

i am almost 37 and have 2 children

Iworryalot · 25/04/2009 09:27

bumo

fizzyanddizzy · 26/04/2009 08:42

Hello Iworryalot. Sorry to but in with a sort of unrelated question. I was just wondering how you deal with your health anxiety on a day to day basis and if how / what support you get from your GP. I have not met anyone else with health anxiety and would love to be able to cure myself of it and feel normal!