Just wondering (survey sort of!) did most of you that were diagnosed with ovca have higher than normal levels of ca125 and the other protein marker test? And were the other tests(Ultrasounds,ct scan,mri)indicative of ovca before you're diagnosis was confirmed?
Thanks Much
Mary

I had a cat scan, ca-125 marker taken, an ultrasound and then a transvaginal ultra sound to diagnose my OVCA. Also had ascites fluid which was tested also.... Good Luck to you....
kathy

Hey Gal,
     The other Gals are right, of course, but worry is hard to avoid.  The fact that you have had to endure so many scans is due to your young age.  Sounds funny, I know, But they only really move fast when we approch fifty, as I am.  It's time to have it surgically expolored, not necessarily time to worry, concern makes sense, worry is corrosive.  They just don't know and if the Radiologist say don't worry, don't worry!  I am a 99 per-center, most us are, thank God.  Bt we all get the worry thing.  Does not matter who says what, we worry.  That's human Urbangal, welcome to the race!  MV

I agree with all the other posts.  You shouldn't worry, only 1% chance.  I too had tumors which they couldn't determine what they were.  I saw both an ob/gyn and a gyn/onc for a second opinion, both said they didn't think they were cancer, but COULD NOT tell for sure until surgery.  Doesn't it suck that in this day and age they can't tell more then they can?  Anyway, they turned out to be endometriomas, but I am glad I had the surgery, I think when you have "tumors" that large inside you, regardless of what they are, once they reach a certain size, they need to go :)  Try to relax, I know it is so hard waiting, I think ALL of us ladies on here can relate to that!!!!!!!

Hi, they can't always tell from scans and nothing is certain until you are operated on and the mass tested for histology. Having said that 99% of all cysts are benign. Have you had a CA-125 blood test taken, this shows the level of a particular antigen that is present with some OVCA. Again it is somewhat unreliable used as a diagnostic tool - some OVCA shows normal levels and it can be slightly raised due to other factors such as having a cyst or menstruating. The not knowing stage is by far the worst time, try not to worry too much (easily said I know!)you can't change any results by worrying about what it could be.

My case is slightly different because of the outcome but it does show how scans can be misleading both ways. I'm also 42 and in retrospect was menopausal pre-surgery. I originally was treated for a melon-sized cyst. From the first US with CA-125 of 89 I was told it was definately cancerous; next US 2 days later there was a very slight chance it was cancerous but appeared to be benign. CAT scan a week later showed extensive changes throughout my abdomen including omentum, ovaries, cyst plus ascites; changed to my gynea/onc and his radiologists gave a second opinion on CAT scan as he thought the first report was being overly cautious, but they confirmed it all and added in the bowel as well. As you can imagine I was a little overwrought at this stage!

After surgery it turns out that I have a rare appendiceal cancer called pseudomyxoma peritonei(PMP). Mucus producing cells burst out of the appendix and into the abdomen and seed and grow around the abdominal cavity on membranes and very slowly start producing mucus. My cyst was a 'normal' cyst produced at ovulation that had a few of the cells trapped inside it and they then produced mucus big time, it was compartmentalised, but this was only seen at surgery not on scan. My cancer is slow growing and covers organs rather than being invasive through blood or lymph, so showed up on scan as whole organs being affected when it was just the outer covering. The mucus is the big problem as it fills up and hardens in the abdomen suffocating all the organs. I am hopefully having total cytoreductive surgery (10 hours+) and heated interperitoneal chemo in the new year and it should hopefully be sorted out completely - my BIG appointment is on Monday to discuss my options and let me know if I'm suitable for the surgery and when I can have it - fingers crossed!
(I have to explain all this as PMP is usually misdiagnosed and in women usually presents as OVCA pre-surgery and is totally mis-treated with horrendous consequences, when it's often completely treatable with specialist surgeons, it may help someone get the treatment they need.)

However, although not ideal, it is nowhere near the serious situation that it would have been if it had been OVCA to the degree indicated by the scans - you only know for sure once it's tested unfortunately. Also throughout all my treatment the doctors have been completely honest with me and said what they have thought it was, however bad - at times I had far too much information! I would assume that they aren't fobbing you off by saying they think everythings okay if they think otherwise.

Try not to worry too much, and sorry for such along post.

Lisa.

Thanks for your comments.I am actually having surgery in Nov too
(28) actually. I just wanted to know opinions (to ease my mind mostly!).As I am menopausal and it is fairly large and I
am somewat uncomfortable I want it out.
I was just wondering (and hoping)that they must have a good
idea from u/s both kinds and ct scan.
Mary

As far as I am aware, my consultants opinion was that they read the results taking into account other factors such as if there were a history of ovca or no children or using b/c pills etc in order to give a best estimate as to what it is.

I understand that they can tell you better if it is solid or liquid or if it has septation (partitions) or in some cases the contents of the cyst which all help with the diagnosis.

However only certain way is surgery I am afraid.  I was diagnosed with a possible haemorrhagic cyst with daughter cyst and I asked how certain he could be that it was nothing sinister and he answered that he couldn't but my young age reduced the risks.  I said I would rather let them have a look than wait and see and so am having surgery in November.

You could say that I am having surgery unnecessarily but there are many women on this site of a young age who have unexpectedly turned out to have ovca - of various stages.

I have weighed up the pros and cons and would rather confirm the diagnosis than wait and see.

I know that this does not perhaps give you any definite answer - the only definite is that only a biopsy can confirm a diagnosis and whether you proceed to that is for you and your consultant to decide.

Take care Dawn