Hi, everybody! I was diagnosed in Sept 2008 with Stage 4 Follicular NHL. This was based on bone marrow involvement. Because the report said "suggestive of lymphoma" instead of "definitive for lymphoma" I went to Sloane-Kettering for a 2nd opinion. They said, no, you are Stage 1 and recommended localized radiation and talked of a cure. I had the first course of 20 treatments and went for my scan and "surprise" here is another spot of localized involvement so we want to use radiation on that one too. (now I am Stage 2, I'm waiting for one of them to say Stage 3 so I can complete the hat trick). I said okay so went through my next 20 rounds of radiation. Meanwhile my medical oncologist is saying "watch and wait" but my research says that this is becoming old school. So, I agreed to wait for my next scheduled scan which is on July 20. I have a bunch of new lumps so expect a negative outcome. If that occurs, I will see what my med onc has to say but I am leaning toward finding a new doc who will be more aggressive with chemo and monoclonal antibodies if I still have active disease. The challenge is that, with an indolent NHL, there is a good chance that neither choice is particularly good for extending my life from what the research indicates. However, for me, when faced with this situation, it was and is very important that I be in charge of my choices. I think I am achieving that by becoming educated and by insisting that my medical team make me a full member of the decision making process. Challenge your caregivers to validate their recommendations so that you have the informed basis for making the decisions that will determine both the length and quality of your life. I am going to continue doing this because among other benefits, it provides me with the sense that, despite this awful situation I have been handed, I am still in charge of my life. To me, that is very important in maintaining my positive outlook. Good luck to everyone and may the treatment you endure be both less traumatic than you anticipated and more successful than you hoped for!
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