Just diagnosed with low grade NHL

Hi Cymru123 and welcome across to our little corner of the community but sorry to hear you are turning up with a NHL diagnosis after the journey you have had with throat cancer.

Blood cancers like NHL are rather unusual. Yes you are correct in that staging is not necessarily used as a prognosis tool but obviously the higher the grade the more advanced treatments ‘may’ be used. Staging pinpoints where in the body lymphoma is presenting and what if any treatment should be used.

I used the word ‘May’ as often with low grade NHL Active Monitoring my be done for years before it is necessarily time to treat..... but your results will decide this.

The mindset that you have cancer and it’s not touched is rather a mind shift. I was diagnosed back in 1999 with my rare type of incurable but treatable skin NHL (hit my name for my profile) and basically just had some normal skin treatments and it took 14 years before the big guns were required.

Understanding NHL is important but as you have been on the cancer journey before you know the dangers of Dr Google and for blood cancer you will get a 1000 hits and not one correct answer.

I recommend that you check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of very good information, videos etc.

I am always around to chat and help you navigate this.

Hi and welcome though sorry to see you having to join our special little group, the are a few who post now and again who have marginal zone so hopefully they will see your post and share their experiences. You can also search posts to find what others have shared. You will read that blood cancers are different to solid tumour cancers and most respond well to treatment and with luck you will go on watch and wait, which can be hard to get your head around. If you do, try to think of it as a chronic disease that's only treated when it flares up and becomes an issue. Do keep us updated.

John 

Thanks Mike, really do appreciate your quick reply! I have the feeling I will definitely be taking up your kind offer.

David 

Many thanks John, much appreciate your reply! Will certainly be updating. Feel relieved to have both your reply and Highlander's 

• Hi. Im 32 and was diagnosed mid 2019 with low grade marginal zone lymphoma. This was discovered by fluke. I qas on a workimg holiday in Australia and came down with some sort of virus around the end of Sept 2018. After 3weeks and about 11 tubes of blood later it was noticed that my liver count was low and after an ultrasound they spotted a tumour within my liver. 5 days and a longggg flight home later, I was in my GP surgery who were in no rush to refer me. During this time i was questioned by a liver specialist why i thought i had a tumour and why i came home to investige the tumour that was found on a scan in Australia. Anyway, also during this time i noticed i had a raised lump behind my ear and a smaller on on the back of my neck. I was referred ro ENT who decided to remove the lymph no behind my ear. The liver tumour came back as benign and not harmful in the slightest. The biopsy came back my nodes were cancerous. I am on a watch and wait with the mention of being discharged and to get in touch if i start to develop symptoms. I really struggled to get my head around the fact I have a form of cancer that i have to keep until it may or may not get worse. Having to return to the uk, total change of lifestyle and diagnosis, amongst other factors, it has severely affected me mentally. Although i am very very thankful as it could have a lot worse, i am really struggling and am now on long term sick from work. I have also just got the devistating news that my Mum has a incurable lung cancer. I am looking for some support or how to go about alternative therapies. If anyone has any info or can point me in the right direction id be truly grateful 

Hi Becky sorry to read you are struggling and that your mum's diagnosis has is incurable, as you are seeking support and advice on how others cope you will get more responses if you start your own thread and if you mention marginal zone in the title (edit sorry see you have done this ) I am sure that others who have the same type will post and share how they have coped. It can be challenging and often you will hear mentioned consider you have a chronic disease that will be treated when it flares up, similar to asthma or diabetic patients, for some it work. I had an aggressive form of lymphoma and my approach was I would focus on where I could make a difference and trust my medical team were dealing with rest, which they did. I accepted I had lymphoma and that could not be changed so was not going to create angst by dwelling on the what if's or why me, or if only. Yes it has an impact on life and at first that can be frustrating but we learn to adapt and try to look for the good things that happen and focus on them. If you don't feel comfortable being discharged then discuss with the consultant having annual check ups for a few years and see how you get on. We each find our own way of dealing with a diagnosis so its good you are asking for advice and support. Do you have a local Mind near by as they are good for seeking mental health support and advice as I have worked on several project with our local organisation and can see how they help and support people during challenging times.

Hope the others with MZ pop along and share

take care

john

Hi Becky, sorry to read this news. I was diagnosed with low grade non Hodgkin in mid-June, which came as a shock and a disappointment after a different cancer in 2015 seemed to be finally receding. There is a specific charity for Lymphomas which I have found very helpful - https://lymphoma-action.org.uk/ . They hold online meetings and support groups which I find very helpful: https://lymphoma-action.org.uk/online-meetings-and-support-groups 

I hope this helps a little. All best wishes to you.