Hi, my first symptoms were fatigue, itchy skin on my scalp strangely enough. I was losing weight and not being able to eat much also drenching night sweats which I had to change bed at night. . After many visits to doctors who didn’t know what was wrong with me, I finally had a lump on my neck and was sent to an ENT doc. I have an auto immune problem and I think doctors just put it down to that. It was only after biopsy in neck I was told it was lymphoma, this is the only way they can diagnose lymphoma. I guess your lymph nodes swell for lots of reasons, mine did get bigger then went down a bit but never went away till I had chemo. I think my doctor could tell it was suspicious as she told me to still go to ENT even if it went down. The doctor who did my biopsy told me it was probably a thyroid problem so in my case it’s just as well they did biopsy. If it’s still there in a few weeks I’d go back. Also even if it is lymphoma and it’s indolent, most people go on watch and wait with no treatment. 

Hi Scones,

Just reading your post, I have all the same symptoms as you & had an ultrasound on Tuesday where I was also told the problem was my thyroid. My GP had asked for a biopsy too but the doc who did the ultrasound said there was no need. Luckily my GP is brilliant & yesterday she said she's not convinced so has now referred me to Haemotology, I have an appointment on Monday.

I am scared & extremely worried but I am not going to let this go until they find out what is wrong with me as I know there is something

I hope you are doing ok? xx

Update from me. I had a call from my referral doctor saying my CT showed more abnormal lymph nodes in my chest, so she wants to do a PET CT scan. I asked her what her diagnosis was but my biopsy results haven't come back yet. However she did say it's possible that I have hodgkin's, although not definite until the biopsy confirms. But I think she must be pretty convinced because PET CT scans are used to stage hodgkin's (I think, please correct me if I'm wrong) so I think that's probably going to be the verdict. I don't want to jump to conclusions yet, there's still some hope in me that the lumps will be benign.

I then had a call come through from another doctor (receptionist of another doctor) saying that I have a haemotology appointment tomorrow, but she wasn't able to say why/what it was for so I'm a bit confused about that. 

Hi, until the biopsy comes in, you won't know if it's lymphoma and what kind it is. I'm surprised you have to see haematologist so soon as they won't be able to do anything till the results are in. Its great they are rushing these tests through so quickly as mine took months before I saw the hematologist. The ct scan is the next port of call so to speak. I had it in my neck, side of lungs, under my arm and side of kidneys. and I wouldn't have known without the ct scan. I had no symptoms of anything wrong in those  areas.  If it's only in your neck and chest they may not do treatment and put you on watch and wait. Mine was stage 3/4 with B symptoms and they decided I needed treatment. Two years down the line, it's back in my neck and lungs and I'm on watch and wait. I had to have a bone marrow biopsy as well.  If it is lymphoma, the treatment is much better than it used to be, I'm really a wimp and I coped with it. Maybe your results will be in tomorrow and you will know very soon. I wish you all the best.

Hey,

Yeah the biopsy is the final bit I'm waiting for, at the moment. They did a CT scan on the same day as my biopsy and that's come back already showing more abnormal nodes in my chest.

At my haematology appointment the doctor said the pathologists who've been looking at my biopsy sample are pretty certain it's hodgkin's so she wanted to get me in ASAP to begin the process of taking more blood tests and scheduling other tests. Apparently there's a final definitive test they do on my biopsy sample which will confirm the diagnosis (although she said their pathologists are rarely wrong I guess there's a tiny glimmer of hope that it might not be).

I've got lung scans and another two appointments scheduled next week and I'll also get the call about the biopsy next week too.

I'm sorry to hear yours is back in your neck. How are you feeling about everything? If you don't mind me asking what was the treatment like? 

Hi, sorry to hear about what they found so far. They did another biopsy on one that was under my arm to check if it was aggressive or indolent, also a bone marrow one which turned out ok. All these tests tell them what kind of NHL it is as it helps them to decide what type of treatment is needed. It's the multidisciplinary team that decide if and when treatment is needed. Do you feel well? Are you losing weight and have night sweats? When my treatment started I was actually relieved as no more tests for the minute. The wait as over. I took my treatment one day at a time, told to drink loads of water which I did, rested when I needed to, first week after treatment I was jangling with the high steroids I was on. Second week I had no steroids  and third week I was fine again then the process starts again. It was actually ok, I coped well, I had a lot of minor problems with the drugs but the doctors and nurses were great, you could call them anytime if you were worried. My biggest thing was losing my hair, I got my wig and it looked great, I bought sleep hats for night as I hated the way I looked, vain I know, but it was my way  of coping. Also my head was cold at night. Your 6 treatments kind of take over your life for a while but it went in quickly and you soon forget about it. It did take me a while to get used to this watch and wait but you actually do get used to knowing you have cancer and not getting treatment for it. I started my treatment two years ago come July and finished it in December. My only worry now is not having regular ct scans to check if the ones in my chest are the same size and not growing, I feel ok though. Covid has changed the way appointments are done, it's only a telephone call now I get, no actually examinations every three months, but the first time I get any symptoms from the last time I will be on the phone to my haematologist who is super.  Let me know how you get on, best wishes.

Hey sorry to jump on! 
can I ask is bloods the normal way to go first when they think lymphoma is the problem?

went drs 2 weeks ago for lump in armpit, she was already sure if her self on the phone it was just a cyst but saw me an said yeah just a cyst, leave it see you later.. 

I did say I had other symptoms too keep getting hot and dripping in sweat from next to no actual activity (just walking to the toilet and I have no stairs!!) to the point of feeling faint an being sick, sleep literally all day an night, loosing weight etc. 

so managed to get myself another apt for second opinion this lady was amazing she said she was more concerned about the symtoms (thinks I might have diabetes) but then when she checked me she said there's another lump too which is for sure a node. 
she's ordered me blood tests which isn't until the 15th but she said she's going to do all tests other than hormones as she really doesnt think it's menopause. She then made me feel more worried because she then started to tell me now is the time I now HAVE to stop smoking, stop drinking and really eat healthy and make a healthy lifestyle (like does she know something I don't?!) 

sorry for blathering on I've been worried about this for weeks and only just been listened too. 

The lump in my neck was the first actual worrying sign for me. I have auto immune issues and thought the fatigue, weight loss, itching night sweats were part of those. I had been getting bloods checked because I also had chronic kidney disease but nothing showed up that would have caught doctors attention. After my GP checked my lump she referred me urgently to ENT. I think she knew it was serious. ENT referred me for a biopsy urgently after he examined me. The biopsy is the only way they can tell you it's lymphoma. My sweats were only during night where I'd wake up soaking.

Hey,

Sorry to hear about your situation, it can be quite stressful not knowing what's up and having a gp not pay too much attention!

My first test was a blood test, which my doctor requested after my lumps hadn't gone away after 4 weeks so yeah I would say it's probably the normal route. The bloods will then hopefully give them some indication of what's up.

Regardless of what the bloods show, if your lumps don't go away and your symptoms persist keep going back to the doctors. Hopefully it's not anything too serious but whatever it is the sooner you know the better so please be persistent. Sometimes it takes us as patients showing visible concern/worry before they escalate things so good to keep your finger on the pulse.

Wishing you luck and I hope it all works out well with your blood tests. 

Hey thanks for the reply! I've had the first one for at least 6 weeks now, second I didn't know about the dr found that and said it was a swollen node, and I have since now found a third one on my other arm, again nothing from drs and I'm still waiting for my blood test to be done 

Sorry to jump onto the thread. I wondered if anyone had any advice? 

I had Covid 2 weeks ago and also a previous virus right before that.

My neck has been hurting for 2.5 weeks now (like a muscle strain pain I think but has now moved to the back of my head, upper neck area). It hurts to yawn too. When I was feeling my neck I noticed a lump at the lower part of my neck, near my collarbone. It's pea sized, moves and doesn't hurt.

I also, weirdly, have a burning like rash appear on the right hand side of my neck last night. Doctor was stumped and said never seen anything like it. Not sure if this is relevant or not?

Anyhow, went to see GP about lump. They said to leave it for another 3 weeks. I'm going out of my mind with worry as I have two small children and I'm very anxious anyway. Is this the right way to go about things? I only found it because my neck hurt otherwise I'd never have checked so it could have been there ages! 

Hi how are you doing 

Hi how are you doing