New diagnosis

Hi Wanttolovelifeagain  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

I don’t have Marginal Zone NHL but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

There are over 60 types and sub-types of Lymphoma and when it comes to Marginal Zone there are a few different types so you will have to wait to see your Haematologist to see what type you have.

Treatments can be anything from Radiotherapy, Chemotherapy, Targeted Therapies and a few others if required.

Treatment choice most likely will be down to your Staging but unlike in other cancers like Breast, Kidney and indeed Lung Cancer where a high stage number is see as a poor prognosis….. in Lymphoma it’s not - point in case me being stage 4 in late  2013 and I am still here living a great life.

You need to use your time to get ready for your appointment and this link Questions to ask your medical team about Lymphoma will help you get your top questions put together.

If we were talking about you having Lung Cancer our conversation would be rather different, but as this is a type of Non Hodgkin’s Lymphoma we are looking a condition that is very treatable with good results.

In response to your community name wanttolovelifeagain you will. I have a very rare, hard to treat incurable type if NHL and ai am loving life.

All the links I have put up will help you get a good understanding of your type of blood cancer.

Always around to chat. 

Thankyou for your reply, I will take a look at the link about questions to ask. It does seem more positive than the lung cancer so I am hopeful

Lymphoma is the 5th most common cancer type in the UK but is very high up the treatable cancers with great results.

Do come back if you have any specific questions.

Hello. I was in the same position last October/November. When the mass in the upper right of my right lung was seen on a chest X-ray I was also referred to respiratory. But, after I had a PET-CT scan, then broncoscopy when a lavage of my lymph glands was also done, I was diagnosed with marginal zone lymphoma with no lymph node involvement so I had two low dose radiotherapy’s which reduced the size and rendered it inactive. I believe that, if it’s in one place, radiotherapy is often the treatment.  Due to my age I opted for just the two ( I was 79 ) as I wanted to remain active playing tennis and badminton. If I was younger I’d probably have opted for 12 high dose. I’m in partial remission with checkups every 6 months. I’ve never had symptoms. I understand that marginal zone lymphomas are often found when investigating for something else. I think, and someone may correct me, that it’s referred to as non-gastric MALT. And people with marginal zone lymphomas can be unaware for a long time if asymptomatic. My haematologist said that I’d likely had it there for a lot of years. 

Hello. I was in the same position last October/November. When the mass in the upper right of my right lung was seen on a chest X-ray I was also referred to respiratory. But, after I had a PET-CT scan, then broncoscopy when a lavage of my lymph glands was also done, I was diagnosed with marginal zone lymphoma with no lymph node involvement so I had two low dose radiotherapy’s which reduced the size and rendered it inactive. I believe that, if it’s in one place, radiotherapy is often the treatment.  Due to my age I opted for just the two ( I was 79 ) as I wanted to remain active playing tennis and badminton. If I was younger I’d probably have opted for 12 high dose. I’m in partial remission with checkups every 6 months. I’ve never had symptoms. I understand that marginal zone lymphomas are often found when investigating for something else. I think, and someone may correct me, that it’s referred to as non-gastric MALT. And people with marginal zone lymphomas can be unaware for a long time if asymptomatic. My haematologist said that I’d likely had it there for a lot of years. 

Hi, I’m glad to hear you’re doing well. I think I’m just unfortunate that my biopsies etc were inconclusive, so I had to lose half my left lung to get my diagnosis. Having cut that away though there’s no lump to reduce. Until I speak to haematologist I won’t know how far it’s spread. It sounds like treatment works though so Thankyou for responding 

If it’s been diagnosed as marginal zone I think it’s likely just in one place. Hopefully you’ll have an appointment soon so that you’ll be completely in the picture. It’s unsettling not knowing. Fingers crossed and all the best to you. 

Thankyou

Hi I had Diffuse large B-cell lymphoma https://lymphoma-action.org.uk/index.php/types-lymphoma-non-hodgkin-lymphoma/diffuse-large-b-cell-lymphoma which was original thought to be lung cancer.

Finding out it was lymphoma was the first bit of good news I had had, not great but much better prognosis than lung c. Now more than two years post treatment.

Getting the cancer identified is a big step on the path to getting treatment kicked off.

Hi, can I ask what treatment you have had. I feel the same about it being a better prognosis as lymphoma rather than lung cancer. My appointment is 9/1 so not long to wait and my surgery was only 4 weeks ago so I have another week to help with my recovery from that. 
do you need more treatment? Sorry for being nosey please ignore if you would rather not answer