Non-Hodgkin lymphoma

Affected by NHL? Join this group to share experiences and ask questions to people who understand what you're going through.

nodal marginal zone lymphoma

Roccosmummy
Posted by
Hi everyone,
after nearly 4 months of tests I have been diagnosed with nodal marginal zone lymphoma.I have a mass in my abdomen.
I am going for a bone marrow test on Tuesday( which I’m not looking forward to).
From what I can gather it doesn’t seem to be very common so finding information out is proving challenging so I thought I would join this group for a bit of support.
They haven’t said 100% yet that it wil be a case of watch and wait but being that I’m only 35 and am having no symptoms I’m assuming they probably will which of course is hard to get your head round when you think of having cancer.
Any information would be greatly received
Thehighlander
Posted by

Good morning and welcome to this little corner of the Online Community but sorry to see you joining us.

We have a number of folks with the same condition so let’s see if they are still on the Community and can pick up on your post.

Watch and wait is a touch of a mind game. I was on Watch and ‘Worry’ for 14 years with my skin Lymphoma but then did have to go through some strong treatments - see my profile.

But when W&W is suggested for you, it means it is in your best interests to keep an eye on your lymphoma and to save other treatments for when they are needed.

There is lots of evidence that people do just as well in the long term if they are actively monitored and have other treatments kept until they are really needed.

I see that you posted in our Stomach Forum as well. It is important to understand the blood cancer you have is nothing like solid tumour cancers and is treated in a totally different way. Blood cancers are very treatable with great results.

I have had a few Bone Marrow Biopsies over the years. They are on the whole ok, a few little stings to numb the area and a lot of pushing but you should not experience much pain and if you do tell them as they can fix that.  The BMB is very important to make sure your team have the complete picture.

Keep posting as we here to help you through this journey.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Roccosmummy
Posted by

Morning! 

Thank you so much for your reply.oops  I think I accidentally posted it in the stomach cancer section.

luckily I have managed to take the diagnosis well and feel much better now I finally know what it is,I’m assuming the best way to think of it is as a chronic illness that will pop up from time to time rather than cancer.

may I ask how often you are monitored throughout the watch and wait? Do the appointments stay regular or do they get further apart the longer it goes on? 

Joncol
Posted by

Hi I’ve been on watch and wait for about 15 months. Initially they were every three months but I asked for appointments to be every six months as I find I get anxious before appointments. As I have no symptoms and feel well my haematologist has agreed to this on the understanding that I report in if things change

Jane
Thehighlander
Posted by

Hi, so as I said, I had Cutaneous T-Cell Lymphoma (Skin Lymphoma) (CTCL). So there are differences in how my W&W journey went but officially I had clinic appointments every 6 month with a CT scan every year and a number biopsies over the 14 years. 

My condition was treated as a chronic condition and it looked like I had very bad Psoriasis and I often had a 70% body coverage.

Over my first 14 years I had lots of steroid creams, drugs and 20 weeks every year (2/3 times a week) for UVB then PUVA light treatments. So I was actually seeing the ward staff and consultant lots during the years. But once my CTCL went out of control I was fast tracked to Oncology - the details are in my profile.

((hugs))

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela