3/4/25 just been told got lymphoma shock wasn’t expecting that news don’t know what sort yet as waiting from Hematology
Hi Ladderman and warm welcome to the Macmillan Community although sorry that you had to find us and especially sorry to hear about your Lymphoma diagnosis. I am Mike and I help out around our Lymphoma groups.
I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ my be different I most definitely appreciate the challenges of this journey rather well.
There are over 60 types and sub-types of Lymphoma so we can’t have a group for every type but these are our main Lymphoma groups below.
General Non Hodgkin's Lymphoma
These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
Until you know the exact type of Lymphoma do stick to this discussion thread for the moment as Lymphomas are not all treated in the day way.
Pleased do get back to me on this post and I will help you out further.
Yes it is an initial shock but there is lots of hope in this.
Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) but unlike most cancers Lymphoma is very very treatable.
Even Staging in Lymphoma is very different compared to sold tumour cancers like Breast, Lung, Colon, Prostate….. where a high stage number like stage 4 is a poor prognosis…… in Lymphoma it’s not.
I was stage 4a aggressive back in late 2013 and it made no difference to my outcomes…… even although I have/had 2 rare hard to treat types of T-Cell Lymphomas.
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.
In way of some encouragement…… as I said I was diagnosed in 1999 age 43 when our daughters were 14 and 18…… I continued to work for 12 years in a very demanding teaching job and yes had various treatments over these first 14 years but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 70 at the end of this year and as a family being 9.5 years since my last treatment.
I am living a great life and we continue to look forward to what else life has in store for us to enjoy…….. this can be done.
You need to start getting your questions ready for your appoint so these two links will help you…..
Top tips for getting the best from your appointments
Questions to ask your medical team about Lymphoma
A lot of the slow growing low-grade Non Hodgkin’s Lymphomas are seen in the same light as other chronic health conditions….. like diabetes.
The big difference between diabetes and Lymphoma is…. you are on treatment for life with diabetes and things can go seriously wrong in a short time……. In Lymphoma you are only treated as and when required.
Take a few big breaths 
Good morning Ladderman ....... and do call me Mike.
The word Cancer obviously strikes fear into everyone who hears it....... but clear information and a good understanding of the condition is very important..... and it helps to control the noise between the ears.
Stay away from random Google searches....... at times Google will not be your friend as you need some clear understanding about your diagnosis to help you filter out the dross that you will find.
My advice is have a look at these links below taken from the Lymphoma Action website.
Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
what is Lymphoma
the Treatment of Lymphoma
You age is no real barrier to treatment...... back in late 2013 (14 years into me journey) I was on a ward with folks in their mid seventies to early eighties who were going through Lymphoma treatments and 11+ year on I still bump into them in and around inverness from time to time.
A few questions if I may:
Where and what hospital are you under?
What are your Symptoms ?
What tests have you had to date?
You said that you are waiting to hear from Heamatology..... who did the referral?
If you have any questions....... regardless how small - just ask them and I will do my best to answer them for you........ now a seat out in the garden with a Coffee.
Hi Andrew
This sounds rather familiar……. Lymphoma can present in many ways and anywhere near the lung can trigger lung ‘type’ infections then further investigations pick up it’s Lymphoma.
Back in 1999 the only symptom I had was a developing rash on my back, you will see from my story that the consultant didn’t even tell me I had Lymphoma…… I found out by accident a few years later !!
So you ‘may’ (each journey is different) find that before you even see the Heamatologist you ‘may’ get an appointment in for a PET scan (although I have never had one in all my years) or a CT scan (had many of these) as this us used to stage you.
It took me 14 years before I needed to see a Heamatologist as I was under Dermatology and it took my second type of Lymphoma to trigger the change of department,
Ok having a CT should help speed things along…..
Saying the words 1 to 2 weeks falls off the tongues of Consultants ever so easily…… and instantly sets a countdown clock going in peoples heads.
From what I hear, especially as Heamatology units are one of the busiest departments in hospitals you need to expect (hopefully not) that this may be more like 2-3 weeks but once about 8 working days have passed you start pushing the system….. more specifically to ensure that your appointment has not fallen through the NHS cracks……
My first appointment back in 1999 did….. my GP got onto them to find out what was going on and it turned out I had missed the appointment as I had not received any letters etc…… but I was seen first thing the following morning and in my case I started treatment at 6pm that same day…… but I was in a bad way in late 2013
