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Anyone have chronic lymphocytic leukemia (CLL)?
Blood Cancers & Disorders | Last Active: Jun 22 7:21am | Replies (368)Comment receiving replies
@loribmt
Thank you for all the information. I don't have swollen lymph nodes, night sweats, or any of the other symptoms, which is why I'm leaning toward doing nothing. I thought I'd wait until I do develop a symptom or two before looking for a new oncologist. (My last one had a terrible bedside manner and I could never get any straight, informative answers from him. Due to his unwillingness to be open with me, I'm not even absolutely sure what kind of cancer I have. But I'm so tired of tests and then worrying for weeks about the results (esp when they are so frequently inconclusive) that my plan is to not go to another oncologist until I have symptoms, so that I KNOW something is wrong. If you think this is crazy or stupid, please tell me. If you think this can be considered a not-crazy approach, please let me know that too.
Thanks again for all the info.
@philipschuyler
Replies to "@loribmt Thank you for all the information. I don't have swollen lymph nodes, night sweats, or..."
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Hi @philipschuyler As I’m reading through your reply, you and I approach our health and potential diagnoses differently. I’m a ‘rip off the bandaid’ girl, er, old lady. LOL
If I had a consultation with my doctor and was told I had CLL, I’d want confirmation of my diagnosis and then find out what I had to do to at this point in time to deal with it. (I’ve actually had leukemia and a bone marrow transplant so I am speaking from experience ☺️)
But with your past record of this ‘less than user friendly’ oncologist, I can see your position of dragging your heels until you actually have symptoms and ‘push comes to shove’.
How about a compromise? What if you at least had a second opinion to find out if you indeed have chronic lymphocytic leukemia and what the stage is. If you’re not having symptoms, it most likely is in a very early stage and may not require treatment for years, if ever. But at least you’d know what’s what. If you are in the early phase, your doctor would suggest Active Surveillance and have you drop in for labs periodically. Some patients are annual or every 6 months. Doctors look for trends in blood numbers so with monitoring they can keep tabs on any changes at a glance.
As we discussed before, an CT scan is seldom used for diagnosis but sometimes a bone marrow biopsy (BMBX) is necessary. Though CLL can be diagnosed with blood tests. If a BMBX is recommended, please don’t let that be a deterrent from getting the medical care you need so that you can live out a full and healthy life. I’ve had 13 BMBXs as part of my medical history and while they’re not #1 on my list of fun things to do, they were an integral part of my journey. You can ask for sedation which helps immensely for anxiety and discomfort.
Also, finding a hematologist oncologist now gives you time to find a good fit. What do you think?