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Sjogren's Syndrome Support

MALT Lymphoma

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.

This is the first time that I’ve heard of it. I’m sorry that you’re having to deal with this, and that it’s been such a rough start to diagnosis. I’m glad you’re happy with the oncologist. I am aware that the risk is lymphoma is increased somewhat with some of the autoimmune diseases, but other than that, I don’t really know specifics.

Thank you for sharing this, and please keep us in the loop.

I saw the oncologist yesterday. Thankfully, my bone marrow test was negative. I will start 4 weeks of chemo with Rituxin June 6. It will take about 6 hours for the first IV infusion. Depending on my reation, the first is the worst, my next 3 can be done much faster, something similar to a n insulin pump method. I’ll have another CT and if it’s clear I’ll be in remission for several years before we will have to do it again. If it’s not, we can do up to 2 more rounds of chemo. If it’s still not gone, then radiation is the next step and it will be bad for the Sjogrens due to increased dryness. So I’m praying 1 round is all it takes and that we never have to resort to radiation. It sucks, but it could be much worse and at least now you will all know about MALT Lymphoma now. So if any of you start having issues with chronic laryngitis, get to an ENT for a scope so you can catch it ASAP and hopefully not have to do radiation.

That’s great news! Are you feeling a bit of relief, now that you’ve got a game plan also? Cancer is never good news, but overall this sounds promising.

And thank you for sharing here. It’s important for people to be aware of this.

I’m super tired, my labs keep getting worse, but mentally, I’m in a good p lace. My PVP was concerned due to my severe anxiety and depression but it’s not been an issue. I had a breakdown a couple of years ago and I learned to handle things better so I guess the breakdown was a positive thing in the long run, I wouldn’t have had therapy if not for it and is probably be a case.

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