Lymphoma in neck & throat

Hi DaisyLou7 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. 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 NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ my be different from your mum’s I do appreciate the challenges of this journey rather well.

First if your mum is having any real pain problems you contact 111 and get advice. Until she actually starts treatment this will continue to progress but once she starts treatment this normally improves quickly.

It took 14 years for my condition to progress and become aggressive but once it did a lot of tests, re-biopsy, scans and a Multidisciplinary Team (MDT) had to be done to approve my treatment.

So by the time I went for my first Chemotherapy Treatment I was much the same as your mum….. it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet (liquidised soups mainly) and my breathing was starting to be restricted and the pain was off the scale.

I had an initial 15min blast of chemo and that got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner and the rest us history (you can see my story through the link below)

A clear diagnosis in Lymphoma is ever so important as there are actually 60 types and sub-types of Lymphoma so this means different types of treatment approaches. So once all her results are in they can start treating using the best tool for her specific type of Lymphoma

As I said I was stage 4a back in late 2013 but I am still here and turned 67 last November. Unlike other ‘solid tumour’ cancer types like Lung, Breast, Kidney….. where a high staging is a poor prognosis m, in Lymphoma it is completely different as Staging is a tool to 1) identify where the cancer is presenting (blood cancers can present anywhere in the body 2)  to identify the best treatment plan and 3) and for how long the treatment should last.

Has she seen a Haematologists yet, if she had you contact the Haematology unit first thing on Tuesday to push on her results. If she has not it’s harder to navigate but still try calling the Heamatology unit, you never know you may get lucky. These early stages are hard.

You need to get ready for he next appointment so this link Questions to ask your medical team about Lymphoma will help you get your top questions in a note book ready for that appointment and ensure that someone with a level head goes with her to the appointment.

Always around to chat ((hugs))

Hi Thehighlander, & thanks so much for replying.

It's given me some idea of what we might expect & how far the swelling might extend. We expect biopsy results back about 17th May & no, haven't been referred from Head & Neck specialists to haematologist yet. I have a contact nurse I can phone Tues in the H & N dept. Amazingly she has little pain, more discomfort & distress.

Thanks again, Im so glad you are doing well with your own diagnosis & situation. I was diagnosed myself with NHL in 2020 & was incredibly fortunate to be stage 1a, had radiotherapy & now on watch & wait appointments. But here we are, with it in my elderly mum. 

Thanks again

Daisylou7

Good that she has no pain, my pain was because my mass was unceasing nerves and muscle…. but the uncertainty brings stress.

So do call the ENT nurse tomorrow as there ‘should’ be an appointment put in place in preparation for results coming back and to speed up the process.

As you have navigated the NHL journey before you have an appreciation of the complexities of getting that clear diagnosis.

My type is a rare Low-grade non-Hodgkin lymphoma but became aggressive but there are a number High-grade non-Hodgkin lymphomas so each type does react ever so differently.

Always around time chat.

Pardon my intrusion. I am brand new to this forum. I am not sure how to introduce myself. But I am not afraid to ask for help………Help plz?   I too have been recently diagnosed (Dec 5th 22) my birthday!!!!  I have both high and low grade NHL. I don’t know which stage yet. But I have just had round 5 of 6 chemo cycles. Feeling good. 
I hope to be able to pass on lots of positivity as that is my way of living. I wish you all successful treatment. And hope you will feel as well as I do. 

Hi Mammabear and welcome to our little corner of the Community and yes, you are free to join in any post as your lived experience can be a great help to others navigating their journey.

Having both Low-grade non-Hodgkin lymphoma and High-grade non-Hodgkin lymphomas is not that unusual, your Low Grade (is it Follicular Lymphoma you have?) will be with you for life as Low Grades are seen as life long conditions.

You can see my story through the link at the bottom but on Wednesday 10th it will be 24 years since I was first diagnosed at 43 and I turned 67 last Nov and doing great.

It’s good that your treatment has being the job and let’s look for this to continue.

Staging in Lymphoma is rather different like in most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 as I was is a poor prognosis, in Lymphoma it’s not..

The group is always around to help out and if you have any specific questions do put up your own thread and this keeps your support in one place ((hugs))