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Mantle cell lymphoma is a type of non-Hodgkin lymphoma (NHL). If you're suffering...
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*** Posted in both Hodgkin & Non-hodgkin groups due to not having a diagnosis ***
Hello again all,
I'm still awaiting biopsy and CT scan results and have been checking my GP online records each day to see if there are any updates (the likelihood is that the results will go straight to the hospital anyway but I'm doing it just in case). No news on the more recent tests but I did find a letter written by my ENT consultant BEFORE the biopsy had taken place which said that a 7cm lymph node was found in my neck on ultrasound and the CT results were not yet available.
Needless to say, I find this a bit alarming. My understanding is that nodes greater than 1cm/1.5cm dependent on location are considered concerning. I knew that one node in particular in my neck was large as I have felt it is choking me at times because it is pressing on my throat. However, 7cm seems bigger than I expected.
Has anybody any knowledge or experience relating to node size? Is a node this large more likely to be sinister? I am also now additionally worried that this very large node is not the one from which the biopsy was taken (because of its location the ENT surgeon felt it would be safer to test a node from elsewhere). Does that mean that if the biopsy comes back negative I could still have lymphoma which would show up if the more enlarged node was to be tested?
I am sorry for all the questions. If I'm honest, I am freaking out pretty badly right now.
Any responses are greatly appreciated.
Hi Tem, remember we are not medically trained but if you think this through, if the biopsy comes back showing blood cancer activity in the biopsy they will look further to ensure a complete diagnosis is found, will they do another biopsy on your neck? maybe, but this is blood cancer we are thinking about so where the blood goes the bad cells go also, so the big growth area on your neck would most likely be the same even without a further biopsy.......... but they may check it.
But if the biopsy comes back with no issues then your team will have to review their findings and may well do a further biopsy on your neck to check it.
Even although I had a diagnosis for over 15 years with my rare type of T-cell Lymphoma they still did a new biopsy one the brick sized growth on my neck just to double check what was going on.
So sorry, until you get the results back there is not much you can do, but in the meantime you will have to tough this out and it's worth remembering that no amount of stress will make any difference to the outcome....... but keep noting all your questions so when you hear the results you are ready to hit the ground running.
Mike - Thehighlander
Some journeys take us far from home but some adventures lead us to our destiny CS Lewis
SCT NHL TCell
Hi, I agree with all Mike has advised so to help you get some answers if they are there then these are my thoughts on your situation.
The surgeon had to have seen the CT scan, just because you cannot see anything on you records does not mean the report has not been written, so my initial suggestion to talk to your GP is still an option to get a steer on what they think may be going on. The biopsy results are needed to confirm if its lymphoma or if its not and sadly that takes time. You could speak to the haematologist secretary explain your stress and would it be possible to see someone and find out what they think is the case with the node based on the scan. The is no reason why they cannot share their thinking as at present it only thinking and I say that because over the last 18 months the have been a number of people who have posted saying doctor X is confident its lymphoma and it turned out not to be.
So until someone a haematologist tells you you have lymphoma then you don't even though I know that will be hard now for you to get such thoughts into your head.
Re the size of the node all I would say is its of a size that warrants investigation as sometimes they need to rule out that it may be sinister, but by doing that it can scare the pants of people.
Talk as much as you need here, but try to pause and take a deep breath and be ready for the meeting.
I know this is a worrying time for you, I just wanted to let you know, if it is lymphoma its not the end of the world. I was diagnosed December 2017, I finished chemo on the 26th April this year. Last week I had my end of treatment PET scan, got a phone call Monday to say I was lymphoma free.
My journey started with ENT, they carried out all the tests including biopsies taken from very large mass which was where my tonsil once was.
I hope everything goes well for you, when you find yourself in the early hours of the morning, in a terrible state of anxiety and worry, please remind yourself of my story, there is light at the end of the tunnel.
Wishing you all the best, much love
Love Sue - Mum, grandma, sister and daughter, so not alone xxx
Dear Tem.....slow down those thoughts....I have had a multinodal goitre since 2014......diagnosed with NHL last year....seems to be no link but the swelling in my neck looked like a golf ball....I was also adding 2+2 and coming up with 5! Don't let thoughts race away with you....wait for the results and have all your questions written down.....easier said than done not to fear the worst case scenario!
All the best
Another day survived
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