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Can someone please tell me what tests suspected your cancer?

42inNy
Posts: 13
Joined: Dec 2012

Hi! I've been recently having tests for many symptoms of ovarian cancer and feel as if something is being missed along the way. I don't know if the drs have performed all proper tests or if they just don't do anymore because ovarian cancer is so hard to detect?

I amallergic to ct scan dye so I had 

Pelvic/ abdominal mri

Tv ultrasound

Colonscopy

Ca 125

He4

A few other tumor markers

I am told there is no other tests- that something would've showed on these. 

May I ask what tests  you ad that Led suspicion or was the initial finding of ovarian cancer. 

Thank you so much. 

Blessings!

MJensen
Posts: 93
Joined: Oct 2012

Hi,
Certainly one of those would have shown up something. If you are still having some problems and don't think they are doing everything possible the only other thing I think you could ask for is a laproscopic exploratory surgery. The surgeon would go in and look around the outside of you colon and other areas in the perotineaum and take biopsies if necessary. It seems a little extreme but not knowing your circumstances and if you are still experiencing unexplained symptoms, all I know is you have to be your own advocate. I wish you well! Cancer is an ugly disease and i hope you have no sign of it...

Alexandra's picture
Alexandra
Posts: 1206
Joined: Jul 2012

Sorry that you are still having abdominal symptoms.

You posted the same question on Peritoneal Cancer board and received many valid responses.

You had all the right tests (short of CT, that you're allergic to). Your doctors conlcuded that you do not have cancer.

You may have a number of benign conditions causing your symptoms, and you certainly need to continue working with your medical team.

But you are not likely to correctly self-diagnose by polling people on CSN.

Jumping to conclusion that you have ovarian or peritoneal or some other internal malignancy can only cause you unnecessary hypochondria, anxiety and depression.

Have a Happy and healthy 2013.

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

42 first off -where in ny are you?  I too am from NY

I had ultra sounds, inner and normal, cat scanm and the kicker was the CA 125 that basicly confirmed the thoughts but surgery was when we found out for sure

 

42inNy
Posts: 13
Joined: Dec 2012

Hi. Thank you for replying to all of you. I am on long island in Nassau county. I saw a gyn oncologist but it seems that drs believe these are the only tests and I am told oc is just so difficult to detect. I feel like I'm being given up on. I hear people here on the boards talking about getting cat scans. Not sure if they mean pelvic or abdominal cat scans or pet scans. 

I don't know what test to request. I was told it MAY just be ibs. I know it's not ibs! When I turn or twist or even sit, my ovary area is sooo tender! I have lost weight. Loss of appetite, so fatigued! Horrible pain during I/c and even after pelvic exams. Each dr says, well  looks good! ( as far as tests are concerned).

I realize that early ovarian cancer and peritoneal cancer is almost impossible to detect but surely if cancer was there- there ought to be tests to show something. One stupid gyn even said to me that the only way to know if you have oc is to take the ovary out. Well yes! I understand that once something shows suspicious- THEN to diagnose is to biopsy the ovary but every woman that had symptoms who were later dx ed with oc must've had specific tests that showed something. 

Also wondering is cat scan better than Mri? 

me_and_my_mom
Posts: 44
Joined: Dec 2012

Oc is not difficult to detect if they are looking for it - it just gets overlooked as a possible diagnosis. I would be very reassured if I  had an ultrasound and MRI that showed nothing. I would put your worry of OC right out of your mind.

MJensen
Posts: 93
Joined: Oct 2012

Hi 42,
Usually a CT scan or pet scan can pick up oc. It really looks like they have pursued all tests. I think a CT or pet scan would be better than an MRI. But if your allergic then that makes that impossible. My ovarian cancer is hard to see on a CT scan because it is called seeding or frosting so it is small and hard to see on a scan. I think if they have completed your tests and they are all good then you should be good. The only other thing to do is an exploratory surgery. That would be last resort for me. I hope your Dr can get you an answer you are comfortable with. Maybe you can wait to see if something develops. All your tests seem ok for now. Good luck and good health!

Ruffy7
Posts: 126
Joined: Sep 2011

Sorry you are feeling so frustrated.  Sounds like the only options you have now is 1) get another opinion from a different doctor (though I think you said you've done this), 2) have an exploratory surgery (the only real definite way to know for sure is to take the ovary out), or 3) accept that the tests haven't shown anything because nothing is there.

This year I had some abnormal bleeding that trigger an ultrasound which showed a 4.5 cm mass on the right ovary.  Had surgery to take it out, it was not cancer but a hemorrghagic corpus luteal cyst.  My cancer of the appendix wasn't diagnosed until after pathology looked at it.  No signs at all, I was lucky that my first screening colonoscopy found the tumor but we still didn't know what it was (even with biopsies) until after surgery/pathology. 

So to answer your question, there is no test/scan that will tell you that you have cancer, only pathology can do that for sure.  Good luck,

 

 

Ruffy7
Posts: 126
Joined: Sep 2011

:)

ptharp
Posts: 190
Joined: Oct 2012

CT Scan, internal ultrasound, and CA-125

42inNy
Posts: 13
Joined: Dec 2012

Thank you all so much for taking time to reply!! Would an MRI be just as good as a ct scan?

 Also would peritoneal cancer have been picked up this way? 

Im wondering if I should just request a laparoscopic exploratory surgery?

 

 

Ruffy7
Posts: 126
Joined: Sep 2011

My cancer is appendix (also called pmp).  My onc described the ct scan and probably mri as not necessarily being good at detecting spread of the mucin.  He described it as doing a ct scan on a room painted white and then painting the room green and doing another ct scan.  There would be no detection of a difference.  I was concerned on why we would still be doing ct scans every 6 mos then and how would we know if it was there.  He said that he relies alot on symptoms and if something developed, we'd probably do an exploratory surgery.  Not sure if it's the same for ovarian cancer... but if you are still having pain (maybe it's not the ovaries - could be something else and still be benign) maybe you should insist on the expl. surgery.  Just a question, did you ever have abdominal or pelvic surgery before?  If so, it could be adhesions/scar tissue from that surgery. 

42inNy
Posts: 13
Joined: Dec 2012

Hi. Ty! I'm not sure weather that would mean the same for ovarian or peritoneal cancer. Not sure at all. Sending good wishes your way...

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

My PPC was discovered because I had a collapsed lung and the fluid which had built up and caused the collapse contained cells which pointed to PPC.   Other than that I had no symptoms although looking back I had the feeling of fullness before eating and bloating.   I suggest that if you feel something is not right you do keep pushing for an answer.   My PPC did not show up on a CT scan and showed minimally on a PET scan but quickly rising CA125 and following surgery confirmed it was in fact the case.   I wish you well and do hope you can get to the bottom of your symptoms.

Julie  

kimberly sue 63's picture
kimberly sue 63
Posts: 396
Joined: Apr 2012

I had the OVA 1 test which was new. It incorporates the Ca 125 and 3 other biomarkers. I originally had right lower quadrant pain and had a CT without contrast and it saw the enlarged ovary. From there my gynecologist ordered the Ova 1 test. Kim

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