Ovarian Cancer screening raised CA125 level hysterectomy?

[steruth]

HI

I am new to this.  I have recently started cancer screening ( about 1 yr ago)my request as my mother had ovarian cancer and her mother had either ovarian or stomach cancer as we cannot find her records. For the first couple of tests my level was 30-35, this then rose dramatically to 77.  My scan was clear, my gyn doc suggests hysterectomy due to ca125 "as he has taken out ovaries showing clear and later show cancer when removed".
I had repeat tests 6 weeks later and the level went down to 63 scan still clear, saw a consultant under the gyn doc who told me polysistic ovaries to come back in a year. I explained what doctor said and she checked with him, he still suggested hysterectomy even though scan clear and level dropping saying he would advise this as level still raised.  Consultant however suggested repeat tests.

(To also advise I had been on cabergoline ( for milk lactation from pregnancy ) during the raise, and i had stopped at same time as level dropped to 63?)

I have had my bloods done again and due to go back in a week for the results and for repeat scan.  I am hoping the scan shows clear and the level has dropped again.
If ovarian cancer was present would CA125 drop like this and would your scan show clear? I would have thought level would either remain stable or increase?

Also would you still go for more repeat tests if your level drops?

I have two children but am not sure I am at the stage for no further children (age 36) and am panicing a little as to how quick I have to make this decision and if I should go for other opinions.
Thanks

[steruth]

Just to update I have been for my tests and my level thank god has dropped to 57 so the consultant has told me no need for a hysterectomy.  I am so so grateful I have been granted this extra chance and the lady has told me I possibly have polycysic ovaries.
I am going to grab this chance while I can and visit the doctors and go for another chance for third child while I can.

I have had got to go for another blood test in feb and if that raises then the main consultant will advise otherwise.  Hopefully by then I will be pregnant.
I know I am alot more lucky than alot of people on here and I just want to wish you all the world of luck and my thoughts are with you with you all.
I will keep you posted.
xxxxx

[steruth]

Thanks for your comments, as I say I am new to all this and all the technical things that come with it are a bit far for me to follow at the moment which is maybe why I find it all a bit daunting.
What is the genetic testing?  I thought that was what I am doing?  I am not even sure!!!  I have regular mamograms, blood tests and internal scans to check.  As I say every thing else is fine ( i get the mamograms as my cousin has breast cancer )
She however thank god is wonderful, they told her a while ago she had six months to live she is nearly 3 years past that date and still fighting strong looking as good as the next person walking down the street....

I think I will just see what he says to me on Monday I will come back and post and I think I would want another opinion, but I will also listen to advice as I have two beautiful children and I lost my mum when I was 14 so know how important it is...
The ladu above I can hear the fear in your words please stay calm and i agree with other people here for me and you should do the same get other opinions if need be it will put your mind at rest.
Hope it all works out let us know how you get on,, take care..
x

[tacp1966]

I am about to have a hysterectomy on Dec 4th 2006.  I am very scared.  I have a ovarian tumor in excess of 4cm on left ovary and a mass on uterus with extensions 3.8cm in diameter and has mixed CT readings anteriorly and superiorly extending up towards the parailiac are with mixed attenuations.  Very small amount of fluid.  the right ovary and adnexa could not be visualized by ultra sound abd and vaginally nor on CT scan.  What can anyone tell me.  I asked the Doctor and he just reads to me the same radiology report i read.  My CA125 was low at 42.7.  Should i be worried it is more than the doctor says.  He told me that is will turn out to be endometreosis.  Is this true? Thank you so much.
Very scared and afraid......

[urbangal]

Please due not feel panicked as to time. FRom what you say there is no immediate urgency to make a big decision like this.You should get(and have time for!)a second opinion.Many of us on this forum have waited months for surgery and in  yr case(since they don't see anything)it's perfectly ok I think to take the time to get a 2nd opinion
Mary

[nyc lady]

How about a 2nd opinion?  Is that possible?  Is it possible to see a GYN/ONC because of your family history?  

A CA125 test is not a diagonistic tool for OvCa, it is used along with several other tests, such as transvaginal sonograms and CT Scans.  It is also not reliable for pre-menopausal women.  There are numerous different things that can throw the count off.  CA125 tests are best used as tumor markers for someone already dx'd.

I know that the there is an increased risk for you to be dx'd with OvCa because of your family history.  I believe the risk factor is like 10% higher with a first line relative (mother, sister, I am not certain about grandmother) has had OvCa, Breast and/or colon cancer.  

Have you thought about genetic testing?