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Newly diagnosed with CLL. Should I request a scan?

I'm newly diagnosed with CLL.

I have high lymphocytes and fatigue. I also have chronic EBV ( mononucleosis keeps reactivating ) due to a suppressed immune system.

Also, I have a strange rash on my arm that a dermatologist reviewed photos of and thinks may be related to the CLL.

Should I request a scan?


No biopsy has been done because I cannot get an appointment until May.

My question is what does everyone think about having scans done?

I’m currently watching and waiting but with everything else going on I wonder if I should request scans to be done?

Any ideas?

  1. Hey . I am sorry about your recent diagnosis. We are not medical professionals and do not give medical advice (for your safety). However, hopefully some will chime in with their own personal experiences. While you wait, I want to share an article with you that you may find helpful https://blood-cancer.com/cll-leukemia/. You can also find us on Facebook if you are on there. There are several in the community with CLL that frequently visit there. Please know that we are here for you. Hoping you find all the answers you are looking for. Hugs, Shayla (Blood-Cancer.com, Team Member)

    1. Is the appointment your waiting to go to a cancer doctor? I would think they would be ordering further testing to determine the exact type you have. Have you had any testing done yet?

      I was diagnosed with CLL/SLL in late January. My doctor got me an appointment with a oncologist/hematology Doctor within a week and 1/2, but before my appointment I had a CT Scan, & ultrasounds done along with bloodwork. He had results for me at my appointment then scheduled a biopsy for that week & ordered genetic testing.
      I don’t know what is routine but I then consulted a 2nd opinion & am staying with this doctor. They both said basically the same thing...watch & wait because I am not having any symptoms (was discovered during an annual mammogram) it is slow growing cancer so because of the genetic testing I will go in every 2 months to do bloodwork to make sure nothing is happening.

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