Well hello

Hi CaughtUnawares  and a warm welcome to this corner of the Macmillan Community but I am sorry to see you hoping us.

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

Have you actually been told you definitely have Hodgkin's Lymphoma …… as in a biopsy result has confirmed this?……. or have you been told Lymphoma and this was the first Lymphoma group you found….?

This is very important as there are 60 types and sub-types of Lymphoma and they are not treated in the exact same way….. depending if they are slow or fast growing.

I have been on my Lymphoma journey for 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’ is different I most definitely appreciate the challenges of this journey rather well……. I turned 70 last Nov and I am continuing to live a great life.

On the whole Lymphoma is very treatable.

thanks Mike

Yes it was confirmed today at biopsy results appointment. But by breast clinic as they were looking for hidden breast cancer. So they could only say Hodgkin,from pathology report.

They definitely said Hodgkin's lymphoma

Have been on a journey as two weeks ago they said probably metastatic breast cancer.

So going to start my haematology journey soon.

Ok….. so you are in the correct place…. 

Hodgkin's Lymphoma is very treatable…. there are a few different treatment regimes and these will be decided by your Heamatology team and will be based on your actual biopsy result as there are a few types of HL and also scan results.

Have you any indication as to when you will see a Haematologist?

Lymphoma has a lot of technical language so these links will help you navigate you initial appointments…..

Top tips for getting the best from your appointments

Questions to ask your medical team about lymphoma

I will say that the main treatment used for HL  tends to be chemotherapy….. everyone reaction is different and some chemo’s are stronger then others but time will tell once you have more info.

Between Dec 2013 and the end of April 2014 I had 6 cycles of my specific chemo and had over 750hrs of chemo and had no real issues.

Are you in the UK?

Yes, I am in Scotland.

Unsure when appointment will be, was just told today I had already been referred urgently.

Hello from a fellow Scot up here in Inverness.

From what have described this can be early but as you are in the system as your Breast Cancer Department will refer internally so this does tend to be quicker than a GP referral.

You said in your initial post…..

CaughtUnawares said:

what my chances are

…… they are very bright as initially HL is treated to cure at best….. but long term remission at worst.

Thanks, that is positive.

Am from Edinburgh, but my husband is a Highlander.

Don’t randomly google…… stick to the information available on the Lymphoma Action website.

Lymphoma Action are the UKs main Lymphoma charity and I have volunteered with them as long as I have on this site.

The Lymphoma Action website has lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

The next time you are hospital do go into the local Maggie's Centre as these folks are amazing and a good place to chat stuff through until you get further down the road.

Thanks, I work beside a Maggie's Centre. Have tried joining Lymphoma Action Facebook group today and they rejected me.

Thankfully they accepted me on second try!

When it comes to joining the Lymphoma Action FB group you MUST answer all 4 joining questions as the FB system will automatically rejects you !!!!!!