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Watch and Wait
Mar 18, 2004
I am a 38 year old female and my family doctor told me 2 years ago that he suspected that I have CLL.
When he first noticed my WBC being high it was in 2002 and it was like 13.6 and he told me it could be a number of things causing the high WBC from stress to an infection however, he wanted me to get a blood test every 3 months for the next year and each time it was high. The highest was like 18.6 during that period. Once he started reviewing my medical file due to the fact I transferred to him because my doctor retired, he noticed that my WBC has been high since 1995. And it goes up and down the lowest being like 13.5 and the highest being like 18.6, he said with that, that he suspected that I have CLL. I asked what next and he said I'm in a watch and wait mode and I may not have any problems until late in life. I asked about him referring me to a Specialist and he said that wouldn't do any good at this time and that a Specialist wouldn't be able to do anything for me. If my WBC reaches 20 or above then he will refer me to a Specialist.
My family is worried to death, but I feel good, very rarely am I sick other than swelling in my stomach alot and tiring easily at times. I also sweat a lot at night. The sweat isn't bothersome like waking me up at night, but in the morning's under my hair and around the neck of my gown is wet. My husband said at night I feel like an oven, my skin is to hot for him to hold me or even throw his leg over mine.
I am a very positive person and a very happy person and I believe that's what keeps me from going insane. I love life and enjoy helping others.
However, if you have been diagnoised with CLL and my doctor is saying that he is going to wait until my WBC is 20 or above to refer me to a Specialist, please tell me if this is normal. Or share with me how you was diagnoised with CLL and if you had any similar situations as mine or any advice, please do share.
Thank you in advance for any comments or suggestions.
Smiling at ya :) ,
Re: Watch and Wait
Mar 19, 2004
Hi. I don't have any suggestions but maybe a few comments. I am disturbed that your doctor won't allow you to see a specialitst (you need his permission so that your insurance would cover it, right?). I was under the assumption that a specialist is a person that knows more (in depth) than a general practioner (assuming the doc you mentioned is a GP). If my doctor told me to wait and see, I'd run right off to a specialist to see his/her opinion. If the specialist agrees with the GP then fine, but the specialist will give you a greater amount of certainty that waiting is the best option. At the very least it would make you feel better to have more information.

There are many different types of white blood cells. Are all of the different types of WBC's uniformly elevated or is it one particular type? If you had a clonal expansion of a single cell (i.e. cancer) then it should be just a particular type of WBC that is elevated. If you had normally high WBC levels or had underlying infections you might see a more uniform rise. Did your doctor get this specific with you? If not, IMO you should see a specialist who can get into the specifics and tell you exactly what everything means. Good luck to you and take care of yourself.
Re: Watch and Wait
Mar 19, 2004
Thanks neechie for your reply. And yes, I have to get a referral from the doctor in order to see a Specialist so that my insurance will pay. As far as the certain information you're referring to, he did mention somethnig about it, but unfortunately I can't remember what it was.
I have been considering another doctor, for I am concerned about his non shalaunt (sp) way of concern. As a matter of fact his wife is a NP who is in the office with him and she is the one who was so concerned about the high WBC in the first place.
I am so confued at times as to what I need to do about this. I called a Specialist, Oncologist/Hematologist myself to see if I could make an appointment and even they told me I needed a referral from my doctor. Go figure, I don't know what to do.
Again, thanks for the information and any other suggestions and/or recommendations will be appreciated.

TatorK :-)

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