Hi Shelley:
My husband was diagnosed with MDS a year ago. However, the BMB was inconclusive and for some reason the cytogenetic results were not done. A lymph node aspiration was done but showed nothing. We were watching and waiting for 8 months and meanwhile my husband was getting sicker, with his CBC deteriorating, especially the WBCs at 1.0 and neutrophils around 200. We sought out a second opinion in October at a Center of Excellence where another BMB was done and a bigger workup including a PET scan, lots and lots of immunological testing and labs, labs, labs. It is looking more like lymphoma, and perhaps a mild MDS. We went to a Center of Excellence several hours away and they were kind enough to refer him to colleagues closer to us to do a lymph node dissection to hopefully get the correct dx. The MD at the Center of Excellence brought all the pieces together, and the communication was wonderful. He made sure the services were coordinated, that we were informed and that we understood the plan and options. We are still in the middle of it, but I feel confident that we are moving in the right direction. He may not end up having different treatment, but as it was we were not getting any treatment without a working diagnosis. All in all, the second opinion made a huge difference in our acceptance of the situation and feeling like we are making the best decisions with all the information at hand. I’m really glad we were encouraged to get a second option. Best wishes to you both.
Karen Warwick 2 months, 3 weeks ago.
