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Hello I'm a Newbie

mychallenge
Posts: 1
Joined: Feb 2017

I really don't know where to begin. I don't know what I am looking for. I was diagnosed with NHL MALT Lymphoma in my right lung back in September. My journey started back in May of last year when I passed a kidney stone and they were checking to see if I had anymore and happened to catch a nodule on the CT Scan. A week later they did a chest scan and had discovered I have two nodules. No symptoms except I felt a very slight wheeze in my chest but I thought it was leftover from a cold I had. Went through summer to see if it grew and it did. Had a Pet Scan and I had mild uptake in my lung and in one of my ovaries. Had a brochoscopy after that. They coudn't get to my nodules because of where they were located and was only able to test mucus and cells surrounding.  They found nothing. So I had to have a biopsy.....biopsy came back with Malt Lymphoma. I had to do another biopsy after that to test if it was in my lymphnodes under my arms and it was not. I had radation the month of November. I was told it was gone. Great news!! Right???? Radiation Dr said he didn't think it would come back in my lung but we would have to watch in other places. I had a follow up with my Oncologist in January. Now ever since then I have had an eerie feeling about my CT Scan I am suppose to have next week to see if it is back. Oncologist spoke about people with different types of Lymphomas and got to mine and made me feel like I was the unluckiest of them all and started talking about life expectancy? I was stage 1......did I ask him about life expectancy? Um no, I did not. The whole thing was just weird. I felt like I was going to be ok and then after that last visit I feel a little paranoid. I have had it easy so far compared to what many face but I am nervous.

Thanks for listening

po18guy
Posts: 1009
Joined: Nov 2011

It is a cancer of the B lymphocytes, part of your immune system. Since it is slow growing, watch & wait (Active surveillance) is a common approach to dealing with it. Some slow growing lymphomas can be harder to manage if treated too soon, as odd as that sounds. Here is an information page from the Lymphoma ResearchFoundation: http://www.lymphoma.org/atf/cf/%7Baaf3b4e5-2c43-404c-afe5-fd903c87b254%7D/LRF_FACTSHEET_MARGINAL_ZONE_LYMPHOMA.PDF

Thus, it is considered to be a chronic, manageable illness. However, the treatment paradigm  is chaging and new treatment are becoming more effective and less toxic. There is much hope!

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