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After having a bone marrow biopsy my Oncologist left me with a diagnosis of NK- chronic lymphoproliferative disorder. She explained she had never had a patient with this rare blood disorder and that I would need to go to a University. I felt relieved and replied so I do not have cancer? She never answered just showed me an article on the disorder that she printed from goggle and said I will see you in 6 months. I asked her when someone would contact me from the University she said soon in a couple of weeks.

I left confused and immediately went on Google and could not find very much I did learn it was similar to T cell LGL Leukemia. So I contacted Leukemia and Lymphoma society and the Counselor explained this rare blood cancer. The lesson I have learned very quickly is you have to be your own advocate for your health.

This counselor gave me a game plan on taking charge of my health.

  1. Welcome to our community, and thank you for sharing your story here! Wow, I am sorry your oncologist didn't give you more direction, but it sounds like you found the right place. The Leukemia and Lymphoma Society is a wonderful resource for both information and financial assistance, if necessary. And better to learn to advocate for yourself early on. Before I was diagnosed with multiple myeloma, I was also sent to a major university for tests, biopsies, and diagnosis, so I know what that's like. A lot of general oncologists or those in smaller towns like mine won't even deal with rare cancers. I do see my local oncologist who keeps track of my labs every month and checks in on my general health, but all decisions are made by my specialist at Mayo, who I see regularly as well. So maybe after all the initial tests and treatment, you will be able to take care of many things with your local oncologist. Have you had contact with the university yet? Please keep us posted. Hopefully others with your same diagnosis will share their experiences too and give you lots of hope and support! Hugs, Ramae (Blood-Cancer.com, team member)

    1. I receive my appointment today for August.

    2. Oh good! That waiting can be tough with anticipation and all the unknowns, but try to stay optimistic (and maybe busy)! We are here for you!

  2. On the one had it's good you at least have a diagnosis now because it means you can probably at least get a treatment plan going. On the other hand, though, a cancer diagnosis stays with you for your entire life, so it will take a little while to get in sync with your new normal. If the new doc is taking too long it might be worth being a little proactive and calling them first. Either way, though, let us know if there's anything we can do to help. Keep on keepin' on, DPM

    1. Sorry to hear of your diagnosis, but yes this can be a rude awakening on when and how the self-advocacy bug works its magic. Waiting weeks for direction doesn't cut it but to be fair I suppose it depends on where you are and the level of the treatment and so forth. I would say for sure reach back out to this doctor and get more direction and if things drag look into inquiring another eyeball on what has been exposed to this diagnosis. Wishing you the very best. Please let us know how everything turns out.

      1. thank God for leukemia lymphoma society 🧡💚 🩸 they have helped me a great deal as well💜 and your so right we have to be our own advocate. The fight for protection of yourself

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