Help!: Hello! I'm a 51 year old North... - Non Hodgkin's Lym...

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Help!

Inaquandary profile image
28 Replies

Hello! I'm a 51 year old North Yorkshire-ite, 3 months ago I went to GP with the swollen lymph node you can see on my neck. To cut a long story short I have a grape sized hard lump on my thyroid, all symptoms of underactive thyroid but bloods say otherwise. Pointed towards thyroid cancer after ultrasounds and biopsies but apparently thyroid cancer doesnt have my symptoms... Very tired and drained, hot then cold, aching legs. Consultant today said he wants to rule out lymphoma. I think he's a bit baffled. If anyone has similar experience let me know as I'm now very worried!

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Inaquandary profile image
Inaquandary
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28 Replies
Shar0n profile image
Shar0nVolunteer

Hi lindsaydawson603, Welcome to NHL Friends. Sorry to hear you are going through this stressful time waiting for a diagnosis. It sounds as if your consultant is being very wise in wanting to eliminate other causes of your swelling before proceeding.

My lymphoma started with a swollen lymph node in my neck. Tiredness and sweats can be symptoms of lymphoma but also of thyroid problems or menopause so the best thing to do is to have all the tests and wait for the results.

Even if it turns out to be lymphoma or a thyroid tumour, remember that both of these cancers are very treatable nowadays and many people are living in remission from them. Please come back and let us know how you get on - we've all been there so - good luck!

jamoza profile image
jamoza

I think Shar0n's reply is very wise, Lindsay. I had a lump on my neck and my GP 'wasted' months treating me with antibiotics before non-Hodgkins follicular lymphoma was diagnosed. If you do have lymphoma (and I pray that it's something non-malignant) then take encouragement from my experience - diagnosed in 2012 at Stage 3b and five years (so far) with no treatment needed. After initial shock I changed my lifestyle and diet - took up running and the gym, stopped eating ready meals and processed foods, and went Healthy/High Fat, Low-Carb (after listening to podcasts featuring Dr Tim Noakes). I'm fitter and healthier now, at 64, than at any time in the last thirty years or so. Just ran five marathons on five successive days for charity, to celebrate my five years great health. Wishing you all the best.

Inaquandary profile image
Inaquandary in reply to jamoza

Wow that's encouraging. Can I ask - did you have any other symptoms prior to diagnosis? Im exhausted all the time, hot then cold!

jamoza profile image
jamoza in reply to Inaquandary

I was always a tired person, but didn't link it to NHL until after diagnosis.

nellynaim profile image
nellynaim in reply to jamoza

How high fat diet is healthy?

jamoza profile image
jamoza in reply to nellynaim

Fats are not the health problem, sugars are! For an expert's view, look up Dr Tim Noakes, podcast is AskProfNoakes.

More info here:

foodmed.net/2016/04/18/noak...

jamoza profile image
jamoza in reply to jamoza

Well thank you for saying that but I'm just an ordinary bloke really 😊

laylalulu profile image
laylalulu in reply to jamoza

So just curious do you find yourself tiring more easily? I too keep active most of the time, I love golfing, walking and running a bit. I'm more tired now than I used to be. I thought if I was in remission I wouldn't be feeling so tired all the time??

jamoza profile image
jamoza in reply to laylalulu

I tire especially when I try to sit down for any length of time. I haven't had any treatment at all so don't know about tiredness during remission. Sorry for taking a while to rely.

Janekite2015 profile image
Janekite2015 in reply to nellynaim

It's true sugars are a problem, but recommendations are to have about 30% of calories from fat. I eat mostly complex carbs, colorful veggies, fruit and whole grains. When my husband had nhl all he could keep in were couple cans of ensure and ice cream, so that's what he ate. He's been gone almost 10 years now.

laylalulu profile image
laylalulu in reply to jamoza

You are awesome!

nellynaim profile image
nellynaim in reply to jamoza

but high fat diet is not healthy either

jamoza profile image
jamoza in reply to nellynaim

Eating proper, healthy fats is much better for you than eating low-fat alternatives which have additives put in to replace the flavour lost through having the fat removed. Fats don’t make you unhealthy, sugars do!!!

jamoza profile image
jamoza

Hope you're feeling less anxious today, Lindsay 😊

Inaquandary profile image
Inaquandary

Hello! Not too bad, trying not to stress as I know it doesn't help. Should hopefully get scans etc this week. Its just the waiting......... Seems endless x

jamoza profile image
jamoza in reply to Inaquandary

Love your cute doggie!!!

Inaquandary profile image
Inaquandary in reply to jamoza

She's 9 months old and a real handful. Its dteadful as I havent got the energy to walk her, have to rely on others

jamoza profile image
jamoza in reply to Inaquandary

That's a real shame. We used to have three dogs, which kept me busy!! Lost the last one a couple of weeks after getting cancer diagnosis - not my best month. Will pray for you, if that's ok?

Inaquandary profile image
Inaquandary in reply to jamoza

If you like although I'm not a great believer in prayer. But every lttle helps!!

nellynaim profile image
nellynaim

you have to have a biopsy

Inaquandary profile image
Inaquandary in reply to nellynaim

If you read my post you will see I have had biopsies... All inconclusive

Smileyman profile image
Smileyman

Hello

Sorry to read about your situation. Last September I saw my GP with lump under chin, gentle night sweats and frequent fatigue ( I thought these to be warmer water related) .... at the ultrasound I was diagnosed with swollen lymph node and suspicious thyroid nodule. The core & fine needle biopsy were inconclusive (wish these had been skipped, just delayed the next stage and prolonged the agonising what it might be). After MRI scan I had double surgery for partial the road removal and to remove the lymph node. The thyroid was clear (but now need thyroxine for rest of my life), the lymph node was follicular lymphoma. After PET scan I was told there are several growing nodes in the mesenteric area, ie other end of the body.

So, what next? Well FL is a slow growing condition, and when necessary generally responds well to treatment. Getting an early diagnosis is key to mental wellbeing, (but unless acute probably not going to impact long term survivability) and once diagnosed just get on and enjoy life, with current and upcoming treatments you can have every expectation to live a full life, I am just a few years older than you and do expect to reach my 70's, or even 80''s. I also work full time too.

Ask about MRI and/or PET scans asap, and remember FL can not be diagnosed until after a biopsy which is key so ask about this too.

Inaquandary profile image
Inaquandary in reply to Smileyman

That's really reassuring, thank you! MRI and CT scans today. Just want answers. Quite agree about the 2 FNAs, waste of time !

Shar0n profile image
Shar0nVolunteer in reply to Inaquandary

Re FNA's - my oncologist told me that the only result that is accurate is a positive; many false negatives with these!

Smileyman profile image
Smileyman in reply to Smileyman

Warmer weather, not water! ! (mobile phone predictive text woes)

Super60 profile image
Super60

This is more for encouragement.1984 they gave me five years for my thyroid cancer which did change into lymphoma later.I had all the symptoms you are experiencing.Over the years I had five more cancers and last month I was told I am in remission 😀They really have come along ways in treatments.

Inaquandary profile image
Inaquandary

Update... Had MRI and CT scans today, results due on Tuesday.

Judyhoneycomb profile image
Judyhoneycomb in reply to Inaquandary

Wishing you the best...

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