No symptoms

[Erinway]

Diagnosed 2 years ago following 2 routine blood tests i.r.o my Coeliac disease which showed my white bloodcell count was going up.

Had a other coeliac blood test last summer, which, as no one contacted me, must have been fine

So 2 years after the diagnoses I have NO symptoms at all.I know a lot of you are on watch and wait , but is this normal or should I request more definitive tests.

Being an optimist am hoping to have CLL ruled out, makes a big difference on travel insurance.

[cajunjeff]

Welcome to the forum Erin. Its very difficult to give you much feedback with the limited information you provided.

I assume you mean you were diagnosed with cll a couple of years ago with a high wbc. Given that there are many other reasons for high wbc than leukemia, a follow up test called flow cytometry is usually done on a blood sample to see if you have cll. Flow cytometry looks for certain molecules on the surface of lymphocyte cells to see if the cells are cll cells. Lymphocytes are the type of white blood cell that can be cancerous with cll.

If the flow cytomtery confirms cll, most doctors will then run a FISH test on the blood to see what chromosomes are abnormal. There are different types of cll depending on the chromosome that is abnormal. Some cll is very indolent, so slow growing treatment is never needed.

When we are on watch and wait, most of us have bloodwork done quarterly, semi annually or annually to monitor. Very indolent cll might need only an annual blood test to monitor. I think semi annually or quarterly labs is more the norm, more frequent than that if our cll is aggressive.

I hope that helps, its hard to know exactly what you are asking. The most important advice you will get on here is to go see a cll specialist to get an opinion, not just a general oncologist. The field of cll is changing so rapidly, in most cases its only doctors who specialize in cll who can keep current with our treatment options.

PS: This is an edit to my post above after reading Lens post below. I did not notice the part where you wrote "hoping to have cll ruled out". This is a cll site, so I assumed when I read where you said you were diagnosed two years ago, you meant diagnosed with cll. Now I am confused by what you meant.

[lankisterguy Volunteer]

Hi Erinway,

-

I see you joined us today (welcome) and are asking a question, but I am confused by it. You say "Diagnosed 2 years ago....Being an optimist am hoping to have CLL ruled out"

-

Normally when we say "diagnosed" we are referring to results from a FLOW Cytometry test by a hematologist that confirms the presence of CLL cells in our blood. If that was done 2 years ago, then you normally would have been tested every 3 or 6 months.

-

If you were not tested and diagnosed for CLL, then there is no way to determine the cause of your elevated white blood count. There are numerous potential causes for a high white count that do not involve CLL or any cancer.

-

Please let us know those specifics from your history, so we can suggest where you might find some answers.

-

Len

[AussieNeil Partner Administrator]

Erinway Replied

"Thank you for your replies

I was advised by a GP after 2 routine bloodtests that I had CLL

I have not had any other more intense bloodtests and certainly have not been given any of the blood counts that are mentioned on this forum, so i have no idea what that all means

I joined the forum to see if my experience with no symptoms and no tests is normal,

Am very confused now. I realise that I have been bit ostrich like, no news is good news, but I do wonder now if I should insist on further investigation

[lankisterguy Volunteer]

Hi Erinway,

-

Please follow this link for a general overview of diagnosis and testing in the USA:

lls.org/leukemia/chronic-ly...

-

If your GP actually did the FLOW Cytometry testing to confirm the CLL diagnosis, you should ask for a copy of those results.

-

If that was not done, you should arrange to have it done, probably by a Hematologist, since your GP is not following normal procedures and may have alarmed you with a naive guess as the cause of your elevated WBC. Once that is completed, the hematologist will be able to answer your query Being an optimist am hoping to have CLL ruled out Lets hope.

-

Len

[JustAGuy]

Normally the doctor will refer you to a hematologist oncologist. CLL is a sufficiently rare blood cancer that it is best to find a hematologist oncologist who specializes in CLL. Your family doctor may not think your test results warrant the referral. You could take that 2 ways, first maybe you don't really have CLL, or maybe he hasn't referred you because he isn't doing his job.

Without the additional tests mentioned by the other replies, it is impossible to know...