Has anyone been diagnosed with MALT Lymphoma? I had what I thought was recurrent laryngitis and went to an ENT in January, he did a scope said it was a mucus cyst on my false vocal chord and I needed it removed. He sent me for a CT and it wasn’t a mucus cyst it was a polyp. His office was very scheduling any tests or calling back, there were delays with the authorization and then he delayed surgery an extra week assuring the entire time, this is not cancer, nothing to worry about. At my follow up the week after surgery he still didn’t have the pathology and no idea what he’d removed. He called me at work 2 days later telling me I have cancer, a rare type of Lymphoma called MALT Lymphoma and that someone would call me back to schedule my oncology appointment. I already felt stupid not changing to a different ENT when I started getting fed up with the delays and lack of concern, but now it’s cancer. No one from his office had called within 24 hours and I wasn’t playing their (allow 2 weeks for scheduling) so I called an d demanded they get my appointment scheduled that day and call me back. Took another day of phone tag. I love my Oncologist and his staff, they are so caring. My Dr made an outline of how we will handle testing and treatment and We have a plan. I had my PET/CT May 3 showing i have a lymph node on each side of my neck (possibly in my groin, but it’s more likely inflammation, it was too small to really tell) making me Stage 2. I had my bone marrow biopsy last Thursday and will get the results this Friday. Treatment options are radiation (preferred by Dr) or Rituxin for chemo. The concern is that radiation will make the dry mouth, eyes, etc much worse doing more harm than good. If course, we still have to get the bone marrow results. The good news is this is a slow cancer, usually very treatable and my white count has by been elevated so far. Bad news is that he did say this will likely come back, but as long as my bone marrow is ok it will be more like dealing with my Sjogrens and Lupus flares. I have been fortunate to until now to be very lucky and no serious health issues. I know how much some people suffer with this and I hate to complain at all. I’m not really, I’m so far fortunate that it looks to be a super treatable cancer, I really feel blessed to have so many health issues in paper and not be “sick”. This particular cancer is most common in people over 65 and people with Sjogrens, so I was just curious to know if anyone had experience with it.
Thanks for listening.