Can someone please tell me what tests suspected your cancer?

42inNy
42inNy Member Posts: 13

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!

Comments

  • MJensen
    MJensen Member Posts: 93
    Tests
    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
    Alexandra Member Posts: 1,308
    Dear 42

    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
    Glad to be done Member Posts: 569
    Alexandra said:

    Dear 42

    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.

    42 first off -where in ny are

    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
    42inNy Member Posts: 13

    42 first off -where in ny are

    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

     

    Hi. Thank you for replying to

    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
    me_and_my_mom Member Posts: 46 Member
    42inNy said:

    Hi. Thank you for replying to

    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? 

    Oc is not difficult to detect

    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
    MJensen Member Posts: 93
    42inNy said:

    Hi. Thank you for replying to

    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? 

    Tests
    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
    Ruffy7 Member Posts: 126
    MJensen said:

    Tests
    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!

    Sorry you are feeling so

    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
    Ruffy7 Member Posts: 126
    MJensen said:

    Tests
    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!

    Sorry double post :)

    :)

  • ptharp
    ptharp Member Posts: 190
    CT Scan, internal ultrasound,

    CT Scan, internal ultrasound, and CA-125

  • 42inNy
    42inNy Member Posts: 13
    ptharp said:

    CT Scan, internal ultrasound,

    CT Scan, internal ultrasound, and CA-125

    Thank you

    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
    Ruffy7 Member Posts: 126
    42inNy said:

    Thank you

    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?

     

     

    My cancer is appendix (also

    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
    42inNy Member Posts: 13
    Ruffy7 said:

    My cancer is appendix (also

    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. 

    Hi- yes I'm not sure either if that is the same

    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
    JulieL Member Posts: 141

    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
    kimberly sue 63 Member Posts: 421 Member
    I had the OVA 1 test which

    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