Extranodal Marginal Zone Lymphoma

Hi  and welcome to our corner of the Community but sorry to hear about your diagnosis.

Extranodal Marginal Zone Lymphoma is on the rare side of the 60 types of NHL and tends to be slow growing. This LINK will take you to some information on the Lymphoma Action Site.

We have a few folks who have or had Extranodal Marginal Zone Lymphoma so lets see if they are looking in and you can also put Extranodal Marginal Zone Lymphoma in the search tool and have a look at their posts.

There are a few treatments but it will all depend on what stage you are - important to note that the higher the stage number does not mean its a big problem like in other solid tumour cancers.

I was between stage 1 and 4 for the first 14 years of my type of NHL and it was not until late 2013 I needed full on treatment and I have been in remission for 3 3/4 years now and doing great so be encouraged.

Long waiting times in getting information on a Lymphoma  diagnosis and treatments plan can unfortunately be rather normal as clear diagnosis is complicated and it needs to be correct to get the best treatment.

If you have the number for your Haematologists give them a call just to keep them on their toes.

Always around to answer questions as best as I can.

Hi Mike, thanks so much for your reply. I’ll wait and see if anyone with the same diagnosis has any feedback as well. I’ve called the haematologists but they haven’t been too helpful. Appreciate your time and help. All the best. 

Hi, 

I hope my experience may help shed some light for you

I found a lump in my side/abdomen and rather than a biopsy it was decided to be removed in full - lump was 2-3cm. It was borderline suspected sarcoma or to be benign. However i was diagnosed with Extranodal Marginal Zone Lymphoma.

Since being diagnosed i have had many amounts of blood tests done to check blood count, bone marrow test & ct scan. This all to see if there is spread of the lymphoma in other areas and if blood is producing. 

Mine has just turned out to be localised to that one area and i am now awaiting to hear if they may just do radiotherapy to the area of where the lump was removed. This is yet to be decided. 

other than that i will just be continued to be monitored every 3months in clinic. I hope this helps shed some light for you & i hope positive news for you.