Not sure what is going on

Stopped visiting this site because I was embarrassed. My gp told me I had cll. Sent me to a specialist. Told me no I don't. He took 13 vialls of blood. One sent to Toronto. Sent me for an ultra sound on abdomen. I see the specialist again on Friday for the results on all these tests. Feeling very confused by all of this. Sorry for wasting your time here. Trying to figure out all of this conflicting info.

11 Replies

  • Hi CLLnewbie... so you have seen a haematologist?  It took me 3 months to get a diagnosis when I lived in Kingston, and I needed to get it confirmed by a specialist in Ottawa... who now 18 years later is my doctor. 😄

    CLL can look like other lymphomas, so you need to wait for the tests results for a definate answer, which you should have by Friday...

    Hopefully they have done a Flow Cytometry, and likely the blood sent to Toronto was for a genetic test called FISH...

    Best wishes and let us know your results...


  • If anyone should be embarrassed, it should be your GP.  You're just trying to find out what's happening, given the conflicting information you've received.  Joining this community will help you know what questions to ask your specialist.

    The definitive test for CLL is a Flow Cytometry test on your blood sample.  Know that you'll be supported by our community if you have CLL confirmed via that test this Friday - and meanwhile we hope your diagnosis is something far more benign and easily treated if it doesn't resolve with time.

    Let us know what you find out on Friday,


  • We are always genuinely delighted when someone doesn't need to join us newbie. Don't ever be embarrassed about NOT having CLL.

    Hope you get answers and must be having a worrying time.


  • Ah bless you, don't feel embarrassed. We would be very happy for you NOT to find yourself back here. I like to think that we all celebrate with those who have good news just as much as we commiserate with those who don't. 

    Keep us updated as to how Friday goes. Fingers crossed for you.


  • Hoping your totally negative. Best wishes to all. 

  • Me too!

  • Me three!

  • Me, four!  

    It took eight months for me to get properly diagnosed.

  • Dont be embarrassed. ..i am sometimes when i go on site because i seem to know so little when compared to gp sent me to hemo/oncol. A few yrs. Ago and she sent me to a rheumatologist thinking it was something autoimmune causing my low platelets. .when my platelets dropped substantially a couple years later when tested by Gp I sent myself back to oncologist and she ran a special bloodtest which confirmed cll followed by many vials of blood,, scans, and bone marrow extraction which showed how affected I was..began ibrutimid in july/Aug last year and so far everything is decreased..hope you get the needed info and appropriate treatment soon..take one day at a time.


  • 5

  • how frustrating!

    one thing you can count on here is support for good news, bad news, and what-the-heck-is-going-on sort of news! take care and best wishes.

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