Hey,
Six weeks ago, I went to my GP with a plum sized lump in my throat which seemed to appear overnight. After tests, scans, biopsies etc, I was told on Friday I have Non-Hodgkins Lymphoma. My tissue biopsies are still being processed to establish what sub-type and therefore what treatment will be required.
I'm so new to this and its all very fresh. I'd love any top tips, advice, suggestions anything that people wish they knew or they'd done differently.
Not sure what to expect really and I'm still processing the whole idea of having cancer. I've told some friends and family, but finding it hard when they just react by bombarding me with their own cancer experiences and "my auntie had cancer, she's fine now" stories.
My husband is military also, if anyone else is in that situation, I'd love to chat, it's such a niche lifestyle even without cancer.
Thanks for taking the time to read. Good luck to you all!!
Hi Wren and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your journey to date.
I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 at 44 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’ may 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 along with this group we also have our……
……. support groups as these are the most common types with T-Cell being one of the rare types hence its own group.
Until you have a clear diagnosis and treatment plan the main task at the moment is getting clear information from meetings…… we can deal with the practicalities later on.
Clear information helps control the noise between the ears so these two links will help you achieve this.
Top tips for getting the best from your appointments
Questions to ask your medical team about Lymphoma
In way of some encouragement……As I said I was diagnosed in 1999 age 44 whence 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 I am 9 years 8 month 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.
Any questions just ask
Just to add…. understanding Lymphoma is important..
A good example of this us in Staging….. in Lymphoma this 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. 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.
