Stage 2, not Stage 0

I was recently diagnosed with CLL (Dec. 12). Today I did a follow-up with my doctor and he is setting it at Stage 2, instead of Stage 0 as he had figured it would be. I am a little confused, as I thought that would mean that I have spleen enlargement, which I do not have. Are there other indicators that I am missing? My lymphocytes are at 20,000 (up 3,000 in a month). He is advocating for no treatment at this point. My lymph nodes are swollen, but still small.

10 Replies

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  • I would think it is the rate of change in your lymphocytes that has prompted your doctor to increased the stage to 2. Doubling in 6 months is a criteria for considering treatment -the spleen and nodes being enlarged are other criteria when deciding to treat.

    Still best to delay treatment as long as you can as no evidence yet that early treatment helps in the long run. This may change with the new treatments becoming available but will need trials to demonstrate this.

  • I would ask for an explanation. Is your doctor a specialist? Doubling ALC is usually not considered until you are over 30,000. Below that the count can jump around. Do you get copies of labs and your doctor's notes. You are entitled to them per the HIPAA Law.

  • No, he is not a specialist. I got the labs & notes. I am looking for a specialist.

  • I would ask your Doctor if you can what has helped them determine your stage and what this really means, I can see the reason for your question as some spleen or liver enlargements is listed as staging indicators. I am guessing you are in the US and the Rai staging system is being used by the doctor. These stages are only used as a guide to help the doc to get a fix on your CLL, it is what happens over time that will properly enable your clinician to get a full picture. One increase of 3000 is not really very large and CLL counts can wax and wane, As Pkenn points out doubling time is not measured by Docs until counts are over 30,000 . Also when counts are so low a single increase can seem a lot but an infection or even differences how the blood was measured between visits can account for this.

    I am sure others will chip in to share experience of the US system, try not to get to alarmed by this

    Nick

  • Pat (PKenn) is correct; your increased lymphocyte count shouldn't be a reason for bumping you from stage 0 (or low risk) to stage 2 (or intermediate risk). To be diagnosed with Stage 2 according to Chronic lymphocytic leukemia: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up, you should have:

    "Lymphocytosis and hepatomegaly and/or splenomegaly with/without lymphadenopathy" or to translate, a raised lymphocyte count and an enlarged liver and/or enlarged spleen, with/without enlarged lymph nodes.

    Stage 0 just requires Lymphocytosis >15·10 9 /l, which you met previously with your early stage 0 staging.

    So I'd suggest that your doctor may consider your liver to be enlarged. Your doctor is also correct in stating that treatment is still not required.

    You'll no doubt be feeling somewhat unsettled having suddenly jumped two stages, but you may well have been stage 2 initially - it's just that your initial examination hadn't picked the enlargement in your liver (if that's indeed why you've been restaged). As Pat said, you should ask for an explanation for why you're now considered to be in stage 2.

    Neil

    (Stage 4 for 7 years now - still in W&W)

  • I have a letter from August 2015 (bloods tomorrow!) informing me, that I'm stage A. I'm assuming that's 0 on the other scale!? I'll ask tomorrow.

  • Remember that staging in CLL is nothing like staging for other types of cancer. More important is what your labs show and whether you have other symptoms.

  • There are several of us here who are in the US. If you post your general location others here can perhaps suggest a specialist in your general vicinity.

  • Southern WV.

  • An on line friend who's husband and mother in law both have CLL posts on cllforum.com with the user name Shari. They live in West Virginia and see Dr. Ian Flinn in Nashville, TN. He is very well known in the CLL world. You could also post there with a title saying you are looking for a specialist near you. The group is more US based and someone there might know of someone closer. It works very much like this group. Once in click on recent to follow current threads.

    Pat

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