New lymphoma patient

Hi Flake63 and a warm welcome to this corner of the Community although I am sorry to see you joining us.

I am Mike and I help out around our various Lymphoma groups. I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different from yours I do appreciate the challenges of this journey rather well.

What will happen next……?

Have you actually been told what of the 60 types and sub-types of Lymphoma you have?

If this is your first Heamatology appointment you may be told more some more information if you have already had scans/biopsies done…… but if these have not be done don’t be surprised if you are sent for further tests as these are the tools that are needed to identify Lymphoma types and stage your condition.

This link Questions to ask your medical team about Lymphoma will help you set out some of the top questions you need to ask so that you understand what the journey looks like as you go forward.

Happy to answer any specific questions or just to chat.

Thank you so much for all this useful information Mike. I certainly need guidance on what questions to ask. Being a teacher, I wish to know all the details - and am sure that I have a great deal to learn along the way! Your support will be invaluable.

I am a retired college lecturer so can understand the need to know….. but some areas of Lymphoma are very confusing.

A good example is that even although Lymphoma is a blood cancer nothing ever shows up in blood tests.

The other very important thing is with regards to staging. 

Staging in Lymphoma is rather different and unlike most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies

1) Where the Lymphoma is presenting in the body (it can be anywhere)

2) What is the best treatment approach and best treatment type for your presentation

3) How long your treatment needs to be.

With some types of slow growing Low-grade non-Hodgkin lymphomas you may be put on what is called Active Monitoring (I prefer the term Active Monitoring to Watch and Wait as it’s more accurate as to what is happening) for over 14 years before I had any full on treatments (but my type of low grade NHL was ‘on’ my skin so was treated as though I had Psoriasis).

Very sorry to hear this. Much will depend on the type and sub-type of lymphoma, as there are many. As well, the indolence or aggressiveness of the lymphoma, and where it manifests in the body will make a difference. Yet again, the stage of it may make a difference, especially in treatment decisons. Everything is up in the air to start, but will son make more sense. Once you find the type that it is, reading up on it can be especially helpful, as knowledge is power.

I am across the pond, but lymphoma journeys do have much in common with one another.  Almost anyone here will be happy to assist with any information we can provide. What to do at the start is perhaps make a list of your questions for consultant, nurse or doctor, as things generally move quickly once in the office. Questions which nag at us are so easily forgotten. Do let us know how you go!