Hi - I’ve just joined this community after receiving a diagnosis of NHL. 2 weeks ago I underwent surgery to repair a spine fracture. There was some ‘abnormal’ tissue and bone around the vertebra which was removed and sent to pathology for analysis. I’ve just heard today that pathology has identified NHL from the biopsy.
I’ve had CT MRI and blood protein markers all come back negative but will have further tests - PET - to see if I have cancer elsewhere. I haven’t yet seen an oncologist but have been told I will need chemotherapy. Really daunting as I thought getting my spine fixed was the end of my back problems. Looks like this is the start of another journey.
pleased to find this forum as I’m sure I will be tapping into your knowledge in weeks and months to come.
Hi Amand and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and so sorry to read about your journey to diagnosis……. Your experience is actually not that unusual. People can be living with Lymphoma for a while and never know or it is found because of being investigated fir another issue.
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.
Lymphoma is generally not well known but it is the 5th most common cancer in the UK and as there are over 60 types and sub-types so getting a clear diagnosis is very important….. this will often mean lots of tests and time.
NHL is basically divided into Low-grade non-Hodgkin lymphoma - slow growing that tends to be seen as a life long treatable condition like other chronic conditions or High-grade non-Hodgkin lymphoma fact growing that is usually initially treated to cure,
Like all cancers you will be given a stage…… 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 and 3) How long your treatment needs to be.
Most Lymphoma patients would see a Haematologist (blood cancer consultants) but this will often depend on the availability in your area.
The information will come thick and fast so this link Questions to ask your medical team about Lymphoma will help you understand the questions you should be looking to get answers for…….. an extra pair of ears and a note book helps this process as having clear information turns the noise down that is raging between the ears.
Depending on your Lymphoma type and stage will determine your treatment….. there are various types of regimes available, they are widely used and very effective......... as for the journey?.... if we line up 10 people on the same treatment for the same NHL we will get 10 different stories...... as the Side Effects of Treatments can be ever so different.
I had a full on regime called R-EPOCH back in late 2013/2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment.
My story is rather complicated (See my story) as I had to go onto other treatments but I am coming up to 8 years out from my last treatment, I am turning 68 in Nov and doing great.
You may want to check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
Do ask your questions and we are here to help you navigate the journey.
Top stress busting questions that gives you control…..
The exact type of Lymphoma…..
The exact name of the treatment….
How long the treatment will last….. number of cycles….. will inpatient be part of the journey…
Make very sure to get the contact details of how you contact your team when you have questions and what you should do when there are problems out if hours and weekends.
Getting ready for treatment is important so do check this link Top Tips for the day of your Chemotherapy
Lymphoma Action run regular Support Platforms both for patients..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.
They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.
Alway around to help.
Thank you so much - you’re very kind and it’s a great help. I’ve been told I have an appointment with an oncology consultant tomorrow at 10am so I’ll be ready with my questions. Thank you 
The Bly time I was seen by an Oncologist was when zi was going to have radiotherapy 
