Hodgkin's Diagnosis (NHS) - Pathway and Timeline?

Hi and welcome to the Community, I am dropping in past from our NHL Group just to make sure you feel welcomed.

Your thoughts well happen like that but it all depends on your hospital and the local heath systems protocols.

Up north of the border you will often be sent to ENT for some ultrasounds depending on your presentation area(s) or even CT/PET scans and they can arrange for any biopsies.

Once these tests are done and results in place....... and from my long experience this can be anything from 5 days to 3-4 weeks...... then you see the Haematologist.

But as you have had history you may get a Heamatology appointment quicker.

The most important thing is to keep them on their toes as the NHS is stretched especially Heamatology departments.

Lets look for some of the others to give their thoughts.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

Thank you so much for such a quick reply!
I imagined there could be quite a bit of variance, I wasn't sure of how much pressure haematology is under.

Updating my profile now, thank you for the advice. I really appreciate the support.

Hi ,

and another welcome. I’m the Mum of a lass who took an inordinately long time to get to remission (7 1/2 years) so saw her through lots of treatments for her very resistant HL.

I guess that you have moved since your original treatment, judging by your profile (thanks for filling that in, so many don’t which leaves those of us trying to help, floundering!) so there’s no way of contacting your previous team to get fast tracked?

so yes, GP and fast track referral if you can persuade them. Normally the next stage will possibly be advising a stem cell transplant, which is getting you to remission again, harvesting your stem cells, then hefty chemo, after which you get your cells back which will give you a ‘re-boot’ and hopefully you’ll have no further problems. In Leeds the hospital will probably be St James’ or Jimmy’s as the locals call it. 

After all daughter’s problems I asked the Admin of the site to set up a new group for Stem Cell Transplants for Blood Cancers - Forum as it’s a more specialist subject. If that’s what is suggested then please feel free to join. 

please don’t be too alarmed about relapse as now there are a number of very successful treatments. 

Hugs xxx

Hi David, good that moomy has picked up on your post. I did not want to initially talk Stem Cell Transplant but being a two times Allo SCT veteran with cells from my brother it’s safe to say there are many tools in the tool box.

Thank you, I am a bit teary after reading your reply, I really appreciate your words, I'm feeling very supported!

I was indeed treated in Italy, so my original team is quite far from the current picture. I still have all my original documents (letters, PET, etc.). They are in Italian but it should not be too tricky to get a sensible translation.

Unfortunately I don't think it will be difficult to push for a fast track referral since I have numerous lymphadenopathies in my neck, collarbone, left armpit and groin... plus many other symptoms (fatigue, pain when drinking alcohol, night sweats, constant infections, etc.).

In this time of painful uncertainty I am very grateful a forum like this exists!

Hi again, David,

it’s not a bed of roses, sadly, (but is do-able and normally very successful) but you’ve a big plus in your favour, your HL responds fully to chemo! (Daughters didn’t!) and so it should be reasonably straightforward to get you into a good remission again. That’s the best place to be for stem cell harvest. There may well be an argument for trying some of the newer therapies even before that, but a really successful bridge to remission seems to be Brentuximab Vedotin (a new therapy which was the only thing to work for our lass) plus Bendamustine (a much older chemo drug) (often labelled BvB). It seems to be a well tolerated regime. If and when you see a haematologist this might be worth mentioning? Also  some of the drugs like Pembrozilimab and Nivolumab are proving helpful in HL and sometimes can open the lymphoma to stabilisation so that chemo is able to work fully again. 

Keep posting and hoping, there are many more treatments out there than there were when daughter went through it all! 
There’s also a smaller charity than this but more specialist, Lymphoma Action, their medical advisor is the consultant who got our lass into remission, Professor John Radford, a lovely man who works at Manchester’s Christie Hospital. That’s a name to remember as he’s truly a world class expert and often available for second opinions if ever needed (and will be talking about HL at the charity’s May conference) 

Hugs xxx

ps, did you have any radiotherapy in Italy? As once you’re in remission again with whatever therapy they suggest, often targeted radiotherapy at resistant nodes will help keep you in remission. That’s always a possible route. 

Hugs xxx

Thank you for all the information, very helpful to start navigating these waters. Now I really just need to speak to a GP and move forward.

No radiotherapy in Italy, there was discussion of it but it was eventually discarded. Only the 6 cycles (12 infusions) of ABVD with G-CSFs when my immune system started to wobble too much. Will need to see what the doctors think! ABVD worked before and, from what I understand, it can be successfully used for late remissions. But as you point out, things have changed in the last 20 years and effective treatments with lower toxicity might be available.

Good luck with your GP, it might take some persistence and insistence from you, but you’ve got all the knowledge anyway.

hugs xxx