Just diagnosed - Hodgkin Lymphoma

Hi David_P and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your Hodgkin's Lymphoma diagnosis.

I am Mike and I help out around our Lymphoma groups. I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade Non Hodgkin’s 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.

It will likely take a few weeks for them to get you in the system and get back to you..... starting treatment may not be that urgent as you most likely have been 'living' with the HL for a period of time and knowing Hematologists well they will most likely want to do more tests so this most likely will take some time before you start treatment....... but with Lymphoma there are no one size fits all.

If you know the hospital where the Haematology Unit is located, just give them a call and touch base and see what happens.

At the outset........ Lymphoma is very treatable be it Hodgkin's or Non Hodgkins........ and even with me being on my journey for over 24 years I am still living a great life.

Can I recommend that you join our dedicated Hodgkin's Lymphoma support group

This group is a are safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

To join a group first click on the “Bold Link” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)

You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.

I will keep an eye open for you but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.

Hi Mike, nice to meet you.

I have very little information as yet, beyond the diagnosis I don't know anything else.  I have been asked what type of HL and what stage but I have no idea.

I'd assumed with the diagnosis alarm bells would be ringing in the NHS and they'd be chasing me.  I'm not a patient person (no pun intended) and it's taken 11 months and 40+ various medical appts and procedures to get this far.

I certainly will join the group, thank you for the link.

Heamatology will take all the time they need to get a full diagnosis…… so you have to become a patient patient. 

There are over 60 types and sub-types of Lymphoma so some care needs to taken to get this right.

When I was first diagnosed my consultant was 99% sure as to my type but it took a full year, 6 further biopsies and a few CTs to get the evidence.

When it comes to Staging, in Lymphoma it is rather different and unlike most other 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 and 3) How long your treatment needs to be.

Wow, I thought things would be 'simpler'. 

My cancer is in my chest lymph nodes.  They were due to do a 3rd biopsy next week, under my left arm using ultrasound as a guide, but they've cancelled that now I have a diagnosis.

I don't relish the though of more biopsies, the first was under sedation and they went in via my mouth and they used a needle to go though to the lymph nodes between my lungs, horrible process.  This proved inconclusive but did show some a few 'a typical' cells.  I prefer to be unconscious if they are messing about. 

The second biopsy was under a general anaesthetic, they cut the bottom of my throat and went in that way to take a larger sample.  This procedure required a night's stay in hospital and then it takes me a couple of days to fully recover from the anaesthetic. 

I've had 3 CT scans and 5 X-Rays so far this year.  My employers are understanding but I'd rather not have to take too much time off for further tests, I'm expecting to need a fair bit of time off once treatment starts.

I have had a lung biopsy and it was the worst and this actually showed I had Asbestosis to go nicely with my lymphoma.

Unfortunately there is nothing simple when it comes to the diagnosis of blood cancers like Lymphoma but once a clear diagnosis is in place the rest tends to go more smoothly.