Diagnosed just on two weeks, ago, after having sore throat since mid Sept, still doing scans MRI CT bloods so unsure of what's gonna happen I've got another MRI tomorrow, and heamatolgy next week, How long is it before treatment starts, has, anyone else got this thing affecting your throat, if so, is it affecting hearing, as in bad tinnitus and odd noises, when trying to relax or is it me losing the plot, i'm66 this month and scared shitless as I care for my eldest whose 38
Hi Mushy24 and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups..... sorry for the delay in my reply but I did not get back open until late last night.
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 I do appreciate the challenges of this journey rather well.
Receiving a cancer diagnosis is challenging...... Lymphoma is the 5th most common cancer in the UK.......... but when it comes to Lymphoma you have to understand the this is very treatable with great results...... so in the early days it's looking to understand what you have and how it will be treated and this information will help reduce the noise between the ears.
What's going to happen next?........ the MRI, CT, Bloods are all only part of the Diagnosis of Lymphoma........ when you see the Hematologists next week be prepared for them to ask for further tests to be done including a biopsy....... biopsy as this is the main tool used to identify what of the 60 types and sub-types of Lymphoma this could be.
As for how quickly will treatment start?..... this will depend on the type of Lymphoma you have.... if it's not aggressive they may put you on Active Monitoring (Watch and Wait) as some type of Lymphoma don't need treated immediately.....time will tell.
This link Questions to ask your medical team about Lymphoma will help you note down your initial top questions you would be looking to get answers for.
As I said I have lived and been treated for my rare type of NHL for over 24 years and yes I had a mass that was affecting my throat to the point is was restricting my breathing......... and yes my hearing was effected...... but this all normally clears once treatment starts.... basically there may be a growth touching a nerve and this will develop the hearing problems.
I unfortunately am one of the very small group of people who has permanent hearing damage down to one of the drugs I was on 10 years ago...... but I will take some hearing loss any time against being alive and living a great life.
The links I put up are all taken from the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.
Always around to help more or just to chat.
