Diagnosing Lymphoma

Wondering if someone has information about next steps for a possible lymphoma diagnosis.

I’ve been feeling unwell (breathlessness, tight chest, sore neck / throat, fatigue, some night sweats) for a few months but had put some of it down to the stresses of being recently made redundant. Now that I’m off work I’ve realised just how rubbish I’m actually feeling and am due at the GP tomorrow. I’ve already had bloods done after a trip to Urgent Care last week which apparently were normal.

Are there scans that identify affected lymph nodes? I’m driving myself mad looking up symptoms (which I probably shouldn’t have started doing!) and am aware that there are other potential diagnoses as well. Lymphoma is definitely one I’m concerned about though.

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Hi @CaroTheLibrarian a great big welcome to our forum.
If you have been ‘Googling’ you will realise that the symptoms you describe could be down to many conditions, but it must be a very scary, anxious time for you which will perhaps make some of your symptoms worse.
I am not medically trained but perhaps write down all your symptoms and all your fears, questions, medical history, stresses, medications, allergies, family history etc and then cover everything with your GP tomorrow.
Making a diagnosis often takes time and awaiting tests, awaiting results, awaiting appointments etc is so stressful and the worst time.
Please let us know how you get on and be kind to yourself

Hello @CaroTheLibrarian, a warm welcome to our community, though I’m sorry you’re feeling so anxious at the moment. It’s really good to hear you have a GP appointment today. We’d really encourage you to let your GP know about your concerns around lymphoma, and let them know of every single on of your symptoms and how long you’ve been experiencing them. You may find this page useful in your conversations.

On this page of our website, there are some questions which you may find useful to ask your GP

Questions to ask your doctor

If you go to get checked out, here are some questions you might want to ask your doctor:

  • I’m worried about blood cancer – is that something you can rule out?
  • Do I need a blood test?
  • Do I need a lymph node biopsy?
  • Do I need any scans?
  • Do you need to take a urine sample?
  • As my symptoms might be blood cancer, can I be referred for tests on the two-week suspected cancer pathway?

This webpage here talks through different tests to diagnose or rule out blood cancers - Blood cancer tests | Blood Cancer UK, including bone marrow and lymph node biopsies.

As it says on our webpage above, most people who have symptoms described on this page won’t have blood cancer. But it’s worrying to have symptoms you can’t explain, and important to find out what’s causing them, if only to set your mind at rest.
If you have just one symptom that you can’t explain, that goes on for a long time, or is unusual for you, book an appointment with your GP. If you suddenly feel very unwell at any time, get medical help straight away by calling 999 or going to A&E.

We’re only at the end of the phone on 0808 2080 888 if you want to talk this through with the support services team so please don’t hesitate to give us a shout if it might be useful.

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Bloods didn’t show anything unusual with me but it turned out via a biopsy that I had a rare Non Hodgkin’s Lymphoma called Mycosis Fungoides.I don’t know why it didn’t show in the blood but it doesn’t always apparently.A CT Scan definitely shows swollen lymph nodes but only a biopsy of them will provide the answer as to why they are swollen.From what doctors have told me they often swell because of infection rather than because cancer has entered them.I don’t think that they will remove them until they reach about 15mm in size although they do initially.I know a few people who have had swollen lymph nodes and not had cancer including my sister, cousin and a family friend.

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Thanks @Kevan7 we are complex beings aren’t we and i can see why making a diagnosis is so difficult.
Look after yourself

Thank you for all the information. First appointment at the GP resulted in them wanting to rule out allergies and reflux, but 2 weeks of medication hasn’t made much difference. I’ve got another appointment early next week and I’m just going to ask if we should be looking at blood cancers as a possibility.

The not knowing is just awful though. My elderly parents are visiting this weekend and although they know I’m not feeling 100% I don’t want to worry them. I’m also due to start a new job in the next few weeks so the timing really isn’t great. I think I’m beating myself up a bit as they symptoms have been ongoing over months so I’m wishing I’d acted a whole lot sooner. Your kind thoughts are appreciated anyway.

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Hi @CaroTheLibrarian please let us know how your appointment goes next week.
Perhaps there is never a good time to be in your situation.
Yes, the not knowing is absolutely awful and. I know it is easier said than done, but try not to beat yourself up, you are just human.
Be kind to yourself and you and your parents spoil yourselves.

It’s not always that simple @CaroTheLibrarian so no need to beat yourself up. It’s natural to worry but better not to speculate until you have some concrete information from your doctor. Are you a librarian? I’ve been once for most of my life which is getting to be a long time now :slight_smile:

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Hi @CaroTheLibrarian I have been wondering how you are doing.
Look after yourself