Newly diagnosed and just looking for some info

Don't worry about the delay,  it's slow growing and not aggressive,  enjoy your Christmas x

Hi Janie1234 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 don’t have DLBCL….. but have you actually been told it’s DLBCL?…… or did you just jump into the first NHL group you found?

DLBCL is actually a High-grade non-Hodgkin lymphoma that is fast growing…… a slow growing NHL is classed as a Low-grade non-Hodgkin lymphoma

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’ is different I do appreciate the challenges of this journey rather well.

This will be very confusing for you over the next few weeks…… but you need to understand that this is very treatable……. regardless what of the 60 types and sub-types of Lymphoma you have….. yes 60

The period you are in at the moment takes time, yes it will take that touch longer due to the Holidays, but in the big picture a couple of weeks wait will not make any difference to outcomes.

They may be looking at some treatment depending on where your lymphoma presenting.

As I said I have a rare low grade and actually took a year for me to get a clear diagnosis….. that was over 22 years back now and I am still here living a great life.

All the worry and stress in the world will make no difference to what you are eventually told and what the journey will look like. I agree with Ghaz - park this as best as you can and enjoy Christmas.

We are always around to help out and answer questions ((hugs))

Hi Janie 1234

Hi Janie1234.

I was diagnosed with DLBCL stage IV and from my first scan to treatment starting was 3 months I really understand how worrying and confusing things can be. I had 2 lung biopsy done nearly a year apart and many other biopsies and other tests as I had tumours in my tonsils, lungs and bowel and the results often took 2 - 3 weeks to come back. The waiting can sometimes be the worst . My treatment started in April 2021 and as of February 2022 I am cancer free. Try your best to enjoy your christmas and new year as others have said. Always up for a chat if you need to  xxxxx

Thanks for this it really helps glad to hear you are cancer free   and I am a bit of a mad dog woman too 

Thanks for this I am unsure yet what type it is I just joined the first group that mentioned lymphoma its a great help getting information from others so least it has put my mind at rest 

Yes Janie1234 I thought as much lol….. the brain goes into over drive when you first get that initial diagnosis but it now the time to put all the jigsaw pieces together and find the ‘exact’ type.

There are many different treatments available so until you have a clear plan you are in the dark……. but could I suggest the you lighten up the next few weeks with Christmas and Hogmanay and deal with the bees when it comes (I see you have loved interest in the Scottish Lymphoma Action Support Group - I run the afternoon group) 

Some of us have our story’s into our profiles - you can find my one through the link at the bottom..,…. But remember I have a very rare and hard to treat NHL but I am over 7 years out from my last treatment and doing great ((hugs))

Rather than bouncing all over the groups just stick to this tread for the moment as you will get yourself confused.

Just thought I’d let you know I saw the haematologist today my scans were back and there is no other site which is good news however due to holidays the team have not reviewed them and the next merely is 23rd jan but the haematologist says they probably won’t do another biopsy as it’s in a difficult area, she also said nothing showed up in my bone marrow so thinks their won’t be any benefit in putting me through bone marrow biopsy as this would only be to decide a type.  She is going to recommend a targeted treatment of radiotherapy but the rest of the team will need to agree.  She has given me a follow up for six weeks and if she has a decision for me sooner they will be in touch. 

Although not a clear diagnosis the fact that they are ‘only’ recommending radiotherapy is a good starting point.

I have had a total of 45 radiotherapy zaps over my years and on the whole it was all ok - keep in touch ((hugs))