Hodgkins Lymphoma

Hi Edie and a warm welcome to this corner of the Macmillan Community but I am sorry to hear about your Grandad and also your concerns.

I am Mike and I help out around our various Lymphoma groups. I have been on my Lymphoma journey for coming up to 26 years first diagnosed way back in 1999 at 44…… 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’ is different I most definitely appreciate the challenges of this journey rather well.

The Symptoms of Lymphoma regardless if it’s Hodgkin's Lymphoma, Low-grade non-Hodgkin lymphoma or High-grade non-Hodgkin lymphoma can be ever so different and in my case the only symptom I had was a developing rash on my back.

The Diagnosis of Lymphoma of Lymphoma can take time but the main tool is a biopsy of any growth areas or lymph-nodes.

As for support there is plenty support out there but the most important thing that at the moment……. until you are actually told you have Lymphoma….. you don’t.

If you are thinking that you have Lymphoma symptoms you should be talking with your GP in the first instance…… have you done this? 

Hello Edie - what a dilemma you are in. Firstly I echo the last sentence of Mike Thehighlander has said - speak to your GP. You ask questions which are almost unanswerable from our perspective especially re diagnostic process. So I will speak/write from my situation.

I was diagnosed with Hodgkin Lymphoma in September 2019. My GP having found a marker in February 2018 following a blood test (long story short- I had an eye out - cancerous tumour  - in 2014 and follow-up monitoring including blood tests). Biopsies/blood tests  for 18 months until diagnosis in September 2019.

I was treated between September 2019 in Oxford for 2 years - chemo and radiotherapy - then in Kent for 2 years - immunotherapy. Next month will be a review having finished treatment in February 2024. And next month I will be 81.

So  - everyone reacts differently depending on them and the treatment regime - some people lose their hair - the money I saved from no barbers and no shaving! Unfortunately the hairs in my nostrils also went and I was "dribbling" for months- they don't tell you that. 

The staff were/are brilliant- they work with you AND FOR YOU. 

Do not consult Doctor Google. If you have any disease, a stick of rhubarb up your nose won't work. Use rhubarb in a crumble with plenty of custard. But there are good sources of support - Macmillan and Lymphoma Action (Charity) as well as- depending where you live - drop in centres. But you don't know yet if you will need them.

The above resources assumes that you have HL (Macmillan is for any cancer). And again, as Mike has said, if you haven't already, speak to your GP asap.

Good luck and, with or without HL, get plenty of hugs,

Pete - and have a long-distance hug

Thank you, this definitely makes me feel a bit less worried about what could happen next! I am planning on contacting my GP in the morning!

I hope your review goes well!

Thank you for your reply

I have been putting off going and discussing my symptoms with my GP, however I plan to in the morning once they open up. As my main nerves about the situation were what comes next, and the process of being diagnosed, but from the replies I have received I defineltly feel more prepared about talking to them

"Until you are actually told you have lymphoma, you don't" is very helpful, and is definetly calming my nerves about the situation

If I could give you one piece of advice when communicating with the medical profession  -and that is "do not hold back". If you are asked how you are them tell them everything. Be open because they ain't mind readers.

Another hug? Sure

Thanks Edie for your good wishes

Pete X

A GP appointment is the first step, make sure you have a note of all your symptoms and a timeline as to when these have been appearing.

If you need to talk this through with someone please do use the Lymphoma Action.
helpline that is open every week day from 10 till 3 on 0808 808 5555 as this is a safe place to talk things through and get support.