So, in Sept 2008, I was diagnosed with Stage 1 Follicular NHL by a major East Coast cancer center (they provided my second opinion) after being dx'd Stage 4 here at home. I had 20 rounds of radiation after which another node (still on the right side of the diaphragm) was found so 20 more rounds were administered. In July 09, I was said to be in remission. In May 2010, I was found to have a new node north of the diaphragm so was declared Stage 3. In the April 2010, I developed multi-focal neuropathy. Since then, I have been fully examined by the neurologist team at my local medical center, in consultation with my oncology care team.
We spent some a lot of time talking about the root cause and, as I understand it, the lymphoma has caused a reduced expression of the GM1 antibody in my blood, which leads to the deterioration of the nerve sheath.
What is interesting (after more research) is that this under expression is most often associated with Marginal Zone Lymphoma. This type is very rare (1.6% of lymphomas are Nodal MZL) which would seem to correlate with the 1-2% occurrence rate of non treatment related neuropathy. My original pathology, which was rejected by second opinion, said "both follicular center cell lymphoma (small cleaved and large cell, follicular becoming diffuse) and marginal zone lymphoma present." As I have now found multiple references to cases in which both FL and MZL were present in patients I am becoming more convinced that we (yes, the collective we) blew the original diagnosis. NMZL is also associated with slightly elevated aggressiveness and poorer outcomes based on what I read.
My oncologist and I have discussed at length the original diagnosis and the fact that MZL was in the first report along with FL. There was also an initial report of lymphoma in the marrow, also discounted by second opinion. So, we are having the tissues from the node biopsy and the marrow biopsy sent to the top histopathologist in my area for re-analysis. I had a PET/CT and a CT scan over the past two weeks and they show stable tumor mass and no new hot spots so I am comfortable that the cancer is indolent and behaving the way it should. We also discussed a new biopsy and are agreed that we will decide after the other analysis and test. We think a bone marrow sample is the best to get the most meaningful information so will go there first if needed.
This just reiterates what Ross has stated in other posts that specific lymphoma diagnosis is really difficult and, in my case, it may be the major cancer center that got it wrong (it may not be but I think the evidence is leaning against them). My concern is that I may have lost two years of Stage 4 status when I may have taken action other than watch and wait which is what I opted for based on the failure of the radiation to stop the disease and the facts as I knew them.
My point in this very long post is that you must question everything, do research to the best of your ability and take charge of your case. My oncologist is very much on board with what we are doing now, has the same questions in his mind and thinks I may actually be presenting with both MZL and FNHL. I should have the analysis from the pathologist next week. Maybe then I can, with my care team, figure out what the appropriate next step should be...
Good health,
Kermica