Newly diagnosed extranodal malt N H L

Hi  and welcome to our corner of the Community but sorry to see you joining us.

Although I have a different type of NHL some of your story sounds just like me 6 years back....... big hole in my neck....... infections.... but after treatment I am doing good.

The staging will be done using the biopsy........ you don’t say if you have had a PET or CT scan yet as this will double check your body for any other r]presentations and with all this put together they can give you a Stage....... I was 4a2...... but you do need to understand that staging in blood cancers just gives the information for the type and length of treatment....... it’s nothing like in solid tumour cancer where the higher the stage the worse your prognosis is.

Here is a LINK about Staging of Lymphoma

This is a LINK about MALT Lymphoma

Blood cancers are very treatable, yes you most likly will need chemo. If you look at my profile (Thehighlander) you will see that I had a lot of chemo but on the whole did well with it and it does what it says on the tin.

You will have lots of questions but we are around to walk this with you some come back with your questions and someone will mostly be there and has the T shirt.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

Hello,

I had a different Lymphoma but mine too did not start in in Lymph nodes. It pretty much spread everywhere and drs did not want to stage it at first as with blood cancers like Mike said is different with stages. They said to me that if they staged mine it would have been stage 4. But it is different then other cancers. Don't read to much into the stages. 

Stages are defined by above your middle and under and if in organs. I had all. I am ok. Trust your consultants and just go with it. It is great they now know exactly what it is so they can give you exactly what you need. 

Hi, I had lymphoma in 6 places in my body, lungs, kidney, adrenal gland, back and bowel with the primary in the bowel. It was diagnosed as DBLC stage 4E, the E stands for Extranodal.  That was in August 2015, (you can read my journey by clicking on my name). This year I am entering my 5th year of remission. I had 6 RCHOP treatments, after 2 sessions the lymphoma in my lungs had disappeared. I live in the NW and although all my treatment was at my local hospital a consultant from the Christie visits the hospital and a senior Christie consultant was a member of the multidisciplinary team who discussed my treatment and progress on a weekly basis. My local hospital consultant team and Clinical Nurse Specialist team were and remain wonderful. Once they have decides on your treatment pathway you will get lots of support. Check if there is a Macmillan Cancer Information Service attached to your hospital or local area as they too can provide support. Lymphoma Action have a lot of local support groups which meet regularly. Lymphoma is treatable and more new treatments are being discovered and trialled. 

Hilary

Hi Mike 

Thanks for your reply it's helpful to no more stuff as it all feels scary. I have just been taking time to try and get my head around things. Ive had CT scan and they've said possibly something happening with lungs but pet scan not showed anything which they've said is fairly typical. Still waiting on consultant appt for treatment plan and then hopefully get things moving. Guess a long journey ahead. I like the impossible saying, it's true! 

Hya so glad to hear you're in remission and your advice about the staging.  I'll just try and see what each day brings and treatment plan hopefully will have a good outcome. I guess despite diagnosis I now have lots more questions! 

Thanks Hilary. I think like you say once treatment plan in place that will help answer some questions and get everything moving. Ive enquired about support groups near me and plan on going to go to the next one, first Tuesday of every month.