So confused ...elevated CA 125

Endogrl81
Endogrl81 Member Posts: 18
in Ovarian Cancer #1

Good morning , this is an update to my previous post. 3 weeks ago a ct scan and ultrasound found a 7cm complex ovarian mass on left ovary, a small comp. mass on the right as well as a enlarged left Fallopian tube with fluid and debris in it, a 5cm fibroid, enlarged uterus the size of 4 month pregnancy and small amount of pelvic fluid. I was referred by ER doc to see a gyn right away for concern of ovarian neoplasm and a ca 125 test. Last week I had my visit  with the gyn who did another ultrasound thay confirmed previous findings and had the ca 125 test done. Yesterday I received my blood test results that came back elevated to 460 U/ml! The gyn is being very non shilant about it stating that it's all just due to my endometriosis and inflammation. I have a family history of ovarian cancer as well. I realize the ca 125 is not something that determines a diagnoses and there can be other factors like endo and inflammation that can raise the levels, but how much do they raise it is my concern! I have to have a hysterectomy done and I want to go see a gyn/oncologist to look more into things instead of just passing things off as endo and inflammation . I am very concerned but the gyn doesn't seem to be . Do I have to get a referral from this gyn to go see a gyn/oncologist?? Am I right for insisting that this is looked further into?? I'm so confused and scared any help would be very appreciated!! Thank you:)

Comments

  • Alexandra
    Alexandra Member Posts: 1,308
    #2
    Endogrl81

    Without getting you more scared and confused I can only say: take all your medical records including CD of the CT scan and RUN DON'T WALK to an experienced gyno-oncologist. Insist on having hysterectomy done by GYN-ONC, not by any random GYN. Hopefully you have benign ovarian cysts but if you don't - it's your best chance of getting it all debulked during surgery.

    Best wishes to you,

    Alexandra

  • Endogrl81
    Endogrl81 Member Posts: 18
    #3
    Alexandra said:

    Endogrl81

    Without getting you more scared and confused I can only say: take all your medical records including CD of the CT scan and RUN DON'T WALK to an experienced gyno-oncologist. Insist on having hysterectomy done by GYN-ONC, not by any random GYN. Hopefully you have benign ovarian cysts but if you don't - it's your best chance of getting it all debulked during surgery.

    Best wishes to you,

    Alexandra

    Thank you so much I am going

    Thank you so much I am going to see a gyn/onc on Friday :))

  • Glad to be done
    Glad to be done Member Posts: 569
    #4
    Endogrl81 said:

    Thank you so much I am going

    Thank you so much I am going to see a gyn/onc on Friday :))

    I second what Alexandra said.

    I second what Alexandra said.  Keep us posted.

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #5
    Glad to be done said:

    I second what Alexandra said.

    I second what Alexandra said.  Keep us posted.

    Hi

    You are right for insisting that this be looked into further by a gyn/oncologist.  Please let us know the outcome of your appointment on Friday. 

    Hugs,

    Kelly

  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    #6
    Get a second opinion and also

    Get a second opinion and also see if they will run an OVA 1 test It looks at CA125 and 3 other markers for ovarian cancer. Kim

  • Rosamond M
    Rosamond M Member Posts: 86 Member
    #7
    Advice.

     I'm glad a Gyno onc you will see

    And you're doing that urgently!

    You really need to sort this problem out

    So you will know what it's all about!

  • Endogrl81
    Endogrl81 Member Posts: 18
    #8
    Rosamond M said:

    Advice.

     I'm glad a Gyno onc you will see

    And you're doing that urgently!

    You really need to sort this problem out

    So you will know what it's all about!

    Sorry has took so long to update

    Well I've been having more trouble than expected getting in to oncologist,

    i have a for sure appointment on Friday . I had to get another cto scan done first this time with contrast before my visit with oncologist. I got the results today the results showed basically the same although the cystic lesion on my right ovary has grown 2cm in 2 months. my question is that the report stated that the large 7cm adnexa mass on my left ovary is a "multiloculated cystic lesion "?? Is this a concern for higher risk of malignancy??

  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    #9
    Your gyn would probably send

    Your gyn would probably send a referral if you requested. I would absolutely get a gyn/oncologist on board and have he or she do the surgery. Research shows if it is ovarian cancer the gyn/oncologist is more proficient and has better outcomes with surgery. Good luck. Kim

  • Endogrl81
    Endogrl81 Member Posts: 18
    #10
    kimberly sue 63 said:

    Your gyn would probably send

    Your gyn would probably send a referral if you requested. I would absolutely get a gyn/oncologist on board and have he or she do the surgery. Research shows if it is ovarian cancer the gyn/oncologist is more proficient and has better outcomes with surgery. Good luck. Kim

    Yes the Gyn did send a

    Yes the Gyn did send a referral, the big problem was that I do not have insurance and coming up with the money that I need for test and a specialist visit. I am happy to say though that i have been approved for charity funding with our local hospital and they worked with the oncologist and he did me a huge favor by lowering his visit cost for me to an amount I could afford out of pocket:)) so now I can finally move forward with all this and I see him this Friday:))

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #11
    Endogrl81 said:

    Yes the Gyn did send a

    Yes the Gyn did send a referral, the big problem was that I do not have insurance and coming up with the money that I need for test and a specialist visit. I am happy to say though that i have been approved for charity funding with our local hospital and they worked with the oncologist and he did me a huge favor by lowering his visit cost for me to an amount I could afford out of pocket:)) so now I can finally move forward with all this and I see him this Friday:))

    Hi Endogrl81

    I'm so glad for you that your oncologist lowered the cost of the visit to something you can afford.  Please let us know the outcome of your visit on Friday.  Sending lots of good thoughts your way.

    Kelly

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