CLL - Referral to CLL Specialist

Posted by pebbles @pebbles, Dec 31, 2018

Thank you for this resource.

I have found substantial information about the treatment plans after diagnosis, criteria for diagnosis but not the protocol for referral to a specialist. I learned that CLL is typically found as a result of a workup for another health issue or wellness visit.

My main question is after the first blood test that showed elevated levels how long did it take for your provider to refer you to a specialist? Did your provider repeat the test before referral? If so, how much time elapsed between first results and repeat testing?

Finally, if you didn’t get a referral after the first test did you feel that time was wasted? I understand that CLL is mostly not fast acting and treatment is delayed until significant symptoms, so some period of delay is likely not something to be concerned about.

My story:

My CBC done by my primary care doc in mid-december reported elevated absolute lymphocytes (4400/ul), WBCs (11,300/ul) and alkaline phosphatase (122 IU/L). CBC is done every 6 months because of long term medication use with possible liver effects.

This is the first time there were any unusual anomalies. For about 2 months prior to the blood test I was recovering from oral surgery complication that removed a failed dental implant, bone graft and oral pain from a titanium film that was removed a week before the blood test.

I experience significant fatigue and intermittent shortness of breath that I did not mention to PCP at last appointment since I’ve always felt tired consistent with other health issues, my weight and denial.

The lab provides patients with access to results after the doctor reviews them. After consulting Dr. Google (extensive research) I called primary care and asked if doctor saw results, if I should come in before my scheduled appointment 6 months away, etc. The gatekeeper said that if Dr. Was concerned the nurse would have called. The nurse hasn’t called.

Being a former caregiver and advocate for my late husband who experienced too many missteps in early diagnosis of several disorders I am on heightened alert when I read lab reports that indicate out of normal range results. And for some reason I am more hesitant to be the dogged advocate for myself than for others. Your experiences would help me put things in perspective and/or motivate me to get past the gatekeeper and see my doctor before my next scheduled appointment in 6 months.

Thanks in advance for any guidance and sharing your experience.

Hello @pebbles, I'd like to invite some members who have been diagnosed with CLL for some time and have either received treatment or on the wait-and-watch approach that may be able to tell you a bit more about their journey finding a specialist or hematologist. @ssid, @dougmann, @sofaramnotdead, recent new member @oceantroll, and @pokeyspride2002 have all talked about CLL in one way or another and may be able to share their experience finding a provider.

@pebbles, if you don't mind sharing, have you asked your PCP about getting you a referral to a specialist?

@justin. Thank you for your response. I will see what I can find by search on the members you suggested. I apologize for not replying sooner but the notification went to junk folder.

I have not asked my PCP about a referral. Since he didn’t call after seeing the report it’s his position that the results are not remarkable. It’s unlikely he would provide referral based on past experience.

I contacted the Mayo consultation service though. One of the criteria is waiting 90 days after surgery to set up an appointment with internal med. Hematology wouldn’t do anything without referral from PCP or Mayo IM. Perhaps my PCP isn’t concerned with the results because he knew I had oral surgery. I will wait another few weeks for the 90 day period to pass and pursue it further with PCP. I have a DEXA scheduled so I will set up an appointment to go over results and inform him of fatigue, etc.

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