Thank you. A hopeful story. 7 months since my diagnosis.
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My hematologist sent my results to the nearest lymphoma center and they concurred, watch and wait. I was worried about what seemed to be high suv scores on the pet scan but the proliferation index, Ki-56 I think, on the biopsy was extremely low—so a low grade or indolent diagnosis. I have my next blood work and physical exam ( no more Ct scans unless absolutely necessary—radiation exposure) in two weeks. If all is well I can wait six months for the next. I have a small palpable tumor on my neck (not visible)—I call it my “worry bead” but it seems not to grow. My diagnosis in August shook me badly, and while I still have difficult moments—above all when I worry about possibly not being there for my kids—I am getting used to it. I take curcuma and cbd oil (at bedtime for better sleep) and eat more kale and spinach—togive me the feeling I am doing something. A pity is that I have shoulder problems which seem to be a post operative complication of the neck biopsy. This is being worked out with physical therapy and Orthopedic treatment but is a real downer. I think apart from that I would feel very well and not know I had this.
For all of those newly diagnosed, you will feel better over time I am sure. The first months have to be gotten through.
That is so important. To forget about it as much as possible between tests. One thing you write that makes me wonder was that “1 in 3 FL patients will never need treatment.” Is that so? I am 56, diagnosed with FL only last August, on watch and wait. I was given the impression that all of us with FL will need treatment sooner or later —except those who die of something else, including old age, first.
Jackie, thanks. But I don’t understand at all the frequency of these CT scans. Each time you are exposing your body to carcinogenic radiation. The protocol at my hospital is no more scans—only after chemo therapy, when and if that takes place. Nodes can wax and wane without it meaning anything. Only if there are symptoms/ aggressive spread or organ involvement is that a cause for concern and intervention. Who is ordering all of these scans? I would get a second opinion about that. Good luck to you.