Hi all I'm nee to the group was recently diagnosed with low grade non hodgkins lymphoma follicular last Wednesday I had a pet scan my follow up appointment was 18th March however this morning I had a call bringing my appointment foward to tomorrow I'm worried sick any advice
Hi Richiepoos and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your diagnosis.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Follicular Lymphoma (FL) .......... but for some context 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) …….
I eventually reached 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’ is different I most definitely appreciate the challenges of this journey rather well.
I would not be excessively concerned about appointments being taken forward.... this has happened to me many times over my 25 years..... The team filling up canceled appointments....... more availability of staff so more appointments...... and obviously they may have sufficient information to give you a plan for moving this forward.
The bottom line is you will find out quicker and you won't have to fret and worry until the 18th..... see this as a positive.
Lymphoma is the 5th most common type of cancer in the UK after sold tumour cancers like breast, lung, colon and prostate cancers.... but it is very important to remember that Lymphoma is completely different from solid tumour cancers.........
This is so evident in the Staging in Lymphoma as it is rather different from solid tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not...... remember 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.
Your Follicular Lymphoma like my Cutaneous T-Cell NHL is a type of slow growing Low-grade non-Hodgkin lymphoma...... although FL is the most common type of Non Hodgkin's Lymphoma and with this brings a wide range of effective treatment options as and when required.
Your Follicular Lymphoma like my Cutaneous T-Cell NHL are seen as a life-long conditions, rather like a chronic health condition say like Diabetes........ but the main difference is that unlike Diabetes where you are on treatment for life...... you only are treated as required with Lymphoma.
The information is going to come quick and fast at your appointment so make a cuppa and have a careful look through these two links as they will help prepare your mindspace to get clear information....... and do try and take a second person with you as they will remember far more than you......
Top tips for getting the best from your appointments
Questions to ask your medical team about Lymphoma
In way of some encouragement…… I was diagnosed in 1999 age 44 when our daughters were 14 and 18…… 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 we celebrated 9+ years since my last treatment and I am living a great life.
Any questions just ask.
Pleasure to help out in some small way… do come back and tell us how you get on tomorrow.
