Hi all
Newbie here and still in shock.I went to doctor friday about a couple of lumps in my neck, one had been there a while and one new one, he sent me for xray...an hour later he rang, they found swollen lymph nodes in my lung, I get booked in for ct. I rang doctor back today to talk things over...he is thinking lymphoma (cancer on the lymph nodes) he says it's very treatable but they rushing through the tests to get a diagnosis and action plan. Will be biopsy and ultra sound sometime soon. All very scary
I feel sick to my stomache cant eat and am convinced I have new symptoms daily...is that normal? My head is thinking the absolute worst even though doctor said not to.
Hi and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about you being investigated for possible Lymphoma.
I was diagnosed way back in 1999 with a rare type of Non Hodgkins Lymphoma and I am still around doing very well. If you do end up having Lymphoma it’s very treatable.
These are early days and as there are over 60 types of Lymphoma care has to be taken to get all the information together to find a way forward.
The Community is organised into various Cancer specific groups and we do have groups for the main types of Lymphomas.
Happy to talk more about this and help you navigate the weeks to come.
Have a look at this link about Lymphoma
Hi Mike, thanks so much for replying with your positivity
I wasnt sure which group was best to join as I still dont really know for sure what I have if anything? I'm guessing the doctor wouldt have said cancer if he didnt really think it.
Hi again, if you look at Lymphomas there are two basic camps Hodgkins Lymphoma and Non Hodgkins Lymphoma and these are treated basically the same but at the same time with different types of treatments - it is confusing.
I have to say that until all the information is together you don’t have Lymphoma - now that is a big statement, but from supporting on the Community for years it’s so true.
My best advise is - all the stress and worry in the world will make no difference as to what is found but will make a difference to how you get through this.
You may want to have a look at the ‘discussions’ in both the Hodgkin's Lymphoma and General Non Hodgkin's Lymphoma groups as a starting point and if you want to post join the group and post away........ but don’t confuse yourself. Or you can stay on this post until you have more information.
Thanks again. So lovely to have such a warm and informative welcome.
Yeah I think I might stay here just for now...I'm too anxious to branch out, worried I will read stuff thats too scary to think about just yet.
Can I ask how you were diagnosed?
I do think this is a very wise move as yes, there are some scary stories....... but much more positive stories.
My story is very long and if you can hit my community name and see the story but I would recommend a stiff drink.
My team had an idea what I had but we did need to get the truth and that took 21 months, a few CT scans and 6 biopsies..... that is how rare my type was.
Diagnosed with Cutaneous T-Cell Lymphoma back in 1999. I was told Incurable but treatable but would never see any remission. So 14 years of Dermatology treatments/clinics then my condition became aggressive so in late 2013 I had 6 cycles of R-EPOCH (750hrs), 45 radiotherapy zaps and two Allogeneic Stem Cell Transplants and was told in Sep 2016 I was in remission for the first time in over 17 years and doing great - there is always hope even when things get bad, very bad.
Good clear information is important - do not look at Dr Google.
Lymphoma Action has some very good information.
Wow, sounds like it really put you through the mill. So glad you made it through and its lovely you are here helping newbies out with support and inspiration. Thank you really appreciate it
I will check out your story and the website too. Thanks
Hey Frog. Your reaction is fairly normal and you might have quite a few tests left to go, so try to focus on the fact that if it is lymphoma it is very treatable.
Strange as it may seem, lymphoma is a cancer of the blood.
Keep us informed as you progress through the path to diagnosis. We know how stressful the time when you're waiting for answers can be.
Thanks so much for reaching out. I will definitely keep you posted.
My little boy had nightmares last night screaming out "mummies gone" Hes only 2 and I've not said anything to him...he must be getting some scary vibes from us.
Trying to keep my positive hat on and keep focused. It's tough though.
Remember what I said “......all the stress and worry in the world will make no difference as to what is found but will make a difference to how you (and the family) get through this”
Try and take some notes at your phone call as this helps a lot...... or record it.
((hugs))
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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