Lymphoma diagnosis

Hi Sianxfx and a warm welcome to the Macmillan Community but I am sorry to see you are on a lymphoma diagnosis journey.

I am Mike and I help out around our various Lymphoma groups. 

I have been on my Lymphoma journey just over 26 years first diagnosed way back in 1999 at 43……. when my first rare (8 in a million) ‘incurable’ but treatable slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL) was found.

I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive High-Grade Peripheral T-Cell NHL was then presenting so although my Lymphoma ‘type’ may be different I most definitely appreciate the challenges of this journey rather well……. having had over 750hrs of chemo, 45 radiotherapy zaps and 2 Allogenic (donor) Stem Cell Transplants between Oct 2013 and Oct 2015.

With over 60 types and sub-types of Lymphoma until you have a clear diagnosis it’s best to stick to this area till you have clear information as there is not one treatment fits all Lymphomas.

Taking significant periods of time to get a clear diagnosis is actually not that unusual…… as some types of Lymphoma are hard to pinpoint……. back in 1999 it took a full year and 6 biopsies to get my diagnosis….. fortunately things have improved over the past 26 years.

Ask your questions and I will do my best to help you out.

Thank you Mike 

im not showing typical symptoms I work in A&E and was in work with pain in back under rib & in shoulder blades 

Dr thought gallbladder after ultrasounds and scans it showed lung nodules & lymph nodes enlarged in chest aswell as enlarged spleen & liver 

Dr has stated he thinks it’s low grade lymphoma 

I think what’s worse for me I’ve worked in nhs for 17 years I know what dr’s are saying without them saying it 

just want diagnosis now and hopefully get put under oncology as our specialists here won’t touch until confirmed 

so right now I’m under general meds & hemotology 

my own gp won’t touch me until I’ve had scans 

I have good days & bad days with pain in back 

A&E dr prescribed me tramadol 

I keep going round in circles in my head I try not to overthink but I guess my anxiety isn’t letting me off so easy 

sian 

Good morning Sian Sianxfx  I have been volunteering with Macmillan and Lymphoma Action for about 9 years and your story is ever so familiar…… especially if it’s one of the many types of Low-grade non-Hodgkin lymphoma.

Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers)…… with this brings a lot of levels of effective treatments.

As frustrating this is the diagnostic steps need to be done….. bloods tend to show nothing Lymphoma related, scans can show areas of concern…… but is a biopsy that will fill in the blanks.

I did say in my first answer that I eventually reached stage 4 in late 2013…… this took 14 years ‘living’ with my type of low-grade and thus was only triggered because I had a sr ind more aggressive T-Cell NHL appeared.

Most GPs have very little understanding of Lymphoma…… I was only under Oncology when I needed Radiotherapy…… my main treatment and care was through Heamatology…..   then the Stem Cell Transplant team…….. although my first 14 years of treatment was with Dermatology…… yes that’s confusing!!!….(See my story)

The bottom line is you need to patently wait for the CT, biopsy and weeks it can take to get the results.

In way of some encouragement…… as I said I was diagnosed in 1999 age 43 with my slow growing Low-Grade NHL when our daughters were 14 and 18……

Back then the median survival was set at 3-5 years was on the information I was given!!!! but things have moved on significantly since then

My aggressive fast growing High-Grade NHL appeared so I had some intensive treatment between late 2013 to late 2015 (chemo, radiotherapy and 2 Allograft (donor) Stem Cell Transplants)……. 

…… but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 70 back in Nov last year and I am coming up to 10 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.