May 25, 2013 - 8:15 am
I have a new next door neighbor, male, about my age or a bit younger (50 or so). I was speaking with him yesterday, and somehow got on the subject of health. I mentioned my stage 3 HL, and he then stated that he had been told he had stage 3 lymphoma, but was later told he is benign. He has been going through a diagnostic ordeal for about a year and a half.
His history is numerous enlarged nodes in the neck, jaw, and armpit regions. He has had four biopsys at differing times. One, he said, was the size of a baseball. Three were negative for any malignancy, and one, which was shipped to Johns Hopkins, had "only dead cells, and could not be tested." Somehow, the tissue had died or decayed to the point that it could not be tested. Before moving next door, he was about 40 miles away, in a rural area, but was driving to the same large, well-regarded cancer center that I have always used. His doctor's office was (is) next door to mine in the same building. Small world ! He says they are bringing him in for six-month blood tests. I told him if I were him I would be pushy and demanding for an anaylysis.
He says he does not currently feel any nodes. He has had episodes of extreme night sweats and fatigue in the last year. He has NEVER received any form of treatment.
As a layperson with the information I have learned over the last five years, it sound to me like he has some form of lymphoma - I do not see how he could not. (Soaking night sweats, xtreme fatigue, node the size of a baseball -- no tests have come back positive for any form of infection. How is that not lymphoma ?) If I were his doc, I would give him a PET scan to detect activity, but they may not feel it is justified yet.
I know many of you have had very difficult times with pathology and diagnosis, and so would appreciate any thoughts regarding this neighbor's specifics. I guess I was lucky in a way: my CT found lots of involvement, a biopsy came back clearly indicating one specific strain, and we went from there.