Hi.Ive not been well for 4mts cough bad throat etc had  heart scan chest scan had chest infection. That went then had pleurisy that went still poorly sent for lung cancer scan that came back clear but noticed a lump in my neck.1cm had that checked was told thyroid was enlarged  still poorly went hospital for a scan and biopsy but biospy not needed.4 lumps there now instead of one and the lumps on my collar bone are associated to problems with breast ..So waiting for boob scan now so there saying its not thyroid causing the problem .x

Hi there 

I have been reading posts for ages like this so thought I would tell my story so far. I developed a small pea size node behind my right ear in Dec I was sent for an urgent referral to ENT as I was feeling very lethargic too. I had a camera up my nose and into my throat and all was ok and was told as the node was tiny he suspected nothing. I have raised esr and crp markers in my blood and have done for several years which I have now been referred to rheumatology for as they suspect an auto immune condition with me. Since lockdown I noticed a bigger node in my neck on the left side. I haven't had any known infections or virus'. It's moveable soft to touch but it's bigger but some days feels smaller than others. I'd say it was 2cm maybe smaller on other days. I rang the doctor and have been referred for an urgent ultrasound. This was done on the 1st April but due to lockdown haven't been seen as of yet. Since then I have another three tiny nodes develop at the side of the bigger one. I have had a achey throat off and on since Xmas but not have developed a chesty cough however my daughter's has had one so I do suspect it's just that. I am just concerned it's something sinister although I have come to thinking that no amount of worrying will change or help my situation. I do have health anxiety too and rely heavily on Dr Google to self diagnose myself which is my downfall. All I want is the relevant tests to out rule cancer but it's very difficult at this time. I just don't understand why some days it's bigger than others but don't think it's grown much in the time I've detected it. I have a multitude of aches and pains all over my body but again due to sensitivity points I'm questioning if I have fibro or an auto immune condition. I have also has a raises rheumatoid factor result too. My worries have affected my day to day life and have found myself pushing my loved one away which isn't good. I am 37 a mother to three one being autistic so I'm very much needed and I just want to know what wrong with me so I can either get treated or move on without being in this awful limbo I am in. 

Sorry for the long post like I say I have read these posts for a long time so thought I'd share my story 

Thanks 

Yes I was happy to get the appointment and no the other side of me feels ignorance is bliss and I don't know if I can handle bad news but that's the negative side of me and I'm trying not to pay much attention. Are you not able to ring your consultants secretary?? Got to be a way of at least expressing your concerns so they know something has changed. It's such an uncertain time isn't it but services need to resume soo or else the NHS definitely will not be able to cope and more lives lost. I hope you feel better soon xx

Hi Everyone

Last June (after waiting 6 months) I was able to see an ENT dr and I had a camera up my nose to check my thoat area (cant remember procedure name). This being as I could feel a lump (which I now know to be submandibular gland) and It felt uncomfortable. The dr. wasn't convinced anything was wrong, in which I became frustrated. It wasn't until I strained my neck (tilting my head as back as i could) the doctor run his ringer down my neck and felt a "slight" lump.. to which he likened to a "cyst" and that I was to have an ultrasound Scan.

1 month later I was given my US. The doctor who performed the scan was extremely concerned. I found this startling as up until now, the general concencus was that I was a hypochondriac. Her exact words were, "things are absolutely NOT alright with your US, you need to speak to the Dr about the results".

2 weeks later, I met with the dr at the hospital (waited 2 hours) and the dr had LOST my scan but wasn't concerned as I do have an underactive thyroid. I wasn't impressed and got in touch with my GP. The scan was found and sent to my GP who went through the scan with me over telephone. Everything was "fine" and not to worry. 

Fastforward to Feb (I was on holiday with my partner in Florida.. after saving for YEARS).. and I felt a big lump under my chin. I almost wanted to cry on the way to Disney. It wasn't painful and hasn't been the whole time i've had it. I still have it now. I phoned when I got home Mar 13 (my Bday) and an expedited referal to ENT was sent. ENT by this point had discharged me so I was being treated as a "new patient".

I phoned the other day and I told that Mon 15th I would have a phone consulation with a doctor, then I guess from there I will be given an ultraround. By this point, if they make me wait ANOTHER x amount of time for an US I will just go to A&E and ask for an US as I can feel it as an obstruction. It's ALWAYS there and I am having somewhat trouble swallowing (things sticking to my throat)

I am also having blood forms sent to my home address to check full blood count & nodes etc.

I KNOW something is wrong. They continuously tell me I am over reacting. My Submandibular gland has to be at least 2cm, I can feel it in my thumb & index). I work front line NHS, Its always on my mind. I just dont know which was to turn. 

Sorry this is happening to you, I would think you need a biopsy with your ultrasound, I'm surprised they didn't do that if they suspected something was wrong. They did tell me not to worry when I had mine done and said it could be a thyroid problem, they were also very wrong, my biopsy showed lymphoma. You need to have the biopsy to put your mind at ease. Such a bad time for all this happening to you, hang in there and push for help. Take care

Oh I'm so sorry to hear your going through such an awful time. Isn't it hard when you feel there is something wrong and no one will listen. When you had the ultrasound and the doc said it wasn't normal did you tell your consultant this was said? I don't see how one doc can say it's abnormal then the consultant to say its fine. Sending you hugs 

The consulant said that the person who performed my US "didnt know" I had a underactive thyroid.. and that the US results didn't show anything suspicious other than my nodes slightly enlarged. Also, I have been told by 2 separate gp's no abnormalities and not to worry hense discharge..

Now a lump has appeared, hasnt gone away since feb, havent been able to speak to anyone until next monday (whilst im in work on a long day working on the front line NHS which is going to be horrendous as I havent a precise time the consultant is going to ring) and I am going to have to wait X amount of time for another US because of Coronavirus 

Hi again sorry for delay. I was referred on the 4th of April for an US and am still waiting however I did have an urgent appt with ENT who said he wasn't concerned but would give me an US to my mind at ease and I have already had a chest x ray. I was already under ENT so I think that helped me. US are still happening but again prioritised. Is the lump itself movable. My heart goes out to you. I still have raised nodes myself but I've come to the point where I feel worrying isnt helping me so I have to wait but in the mean time I'm very aware that waiting could be dangerous but what can we do in this situation. 

Hi there, I hope you are doing well. Mine is a long one but I will shorten. 5 years ago began having swallowing problems and enlarged lymph nodes.  Ultrasound showed reactive lymp nodes with absence of hilum, thickened cortices and irregular shape.  Pointed it out but not taken any notice of.

I was then told I had Hashimotos an auto immune disease. I subsequently had a total thyroidectomy removal of the thyroid. Fast forward ear ache swollen left side face, around the jaw with a lump sticking out. Ultrasound shows lymp node has grown still described as abnormal irregular, absence of hilum etc now 2cm .

Saw a doctor through rapid access who says he thinks all is OK but has carried out loads of blood tests and also referred to a specialist maxillofacial surgeon who btw is on holiday until October. I see my ENT doctor next week.  Any advice I should be asking. My face looks like I have been punched in the jaw and the lump quite defined. I am really worried and anxious. Anyone can relate. Other symptoms nausea, profound headaches.

Hi, sorry you are having these problems, unfortunately I cannot help you with these symptoms, they don't sound like lymphoma but when you see your ENT doctor, he will put a small camera up your nose and be able to see if there is anything wrong right away. If he is concerned he will send you for a biopsy and ultrasound. I have auto immune problems, I was interested when you said you had hashimotos, at the moment I have swallowing problems, food is quite sore especially first thing in the morning, I have a very dry mouth, it worries me a bit as my lymphoma is in my submandibular gland and I know when I was bad the first time, I had virtually no salivia in my mouth which used to make me choke me a bit. I'm getting bloods taken every month with my own GP and I'm showing low white blood count atm. I havnt been able to see my haematologist since December because of COVID but I have now got an appointment for October, I hope this one doesn't get cancelled as I was used to seeing her every three months because my lymphoma returned after treatment but I don't have any B symptoms so they don't usually do treatment till your stage 3/4, I'm only at 2 just now with no other symptoms apart from a little enlarged lymph node, this is a worrying time for you, I hope the doctor sees you and puts your mind at rest, everything takes so long, bisopies take weeks to get results as do ct scans etc but my ENT doctor which was the first I saw told me everything in my mouth looked fine but felt as I have auto immune problems I was higher at risk and sent me for a biopsy which at the time the lump on my neck was very noticible but I had no pain at all. You won't need to ask much, the doctor will talk you through all the steps, They can usually tell a reactive node but if you are still worried just tell him as the only way to put your mind at rest is a biopsy which they do with the ultrasound. When I had mine done the doctor said he thought it was a thyroid problem, how wrong he was. Best wishes and good luck x

Thank you for replying. I am due an appointment with my ENT doctor next week but awaiting an urgent appointment with the maxillofacial surgeon.

Having read what you have said about your symptoms it sounds very much like Sjogrins which is an autoimmune disease which affects saliva and its productivity or lack of.

I have head once you have on autoimmune immune you are destined for another.

I came across something called IgG4 disease which covers a number of my symptoms so now sending an extensive letter to my oncology doctor I am seeing at the moment to rule out anything sinister.

So sorry to hear your going through this. I also don't know about this symptoms I'm just glad youre being seen and can get answers. 

Scones I had my ultrasound which came back normal and my chest x ray too. My neck is still sore so I think perhaps it could be something auto immune but I'm still awaiting my rheumatology appt. How have you been feeling x 

So sorry to hear your going through this. I also don't know about this symptoms I'm just glad youre being seen and can get answers. 

Scones I had my ultrasound which came back normal and my chest x ray too. My neck is still sore so I think perhaps it could be something auto immune but I'm still awaiting my rheumatology appt. How have you been feeling x 

Hi lisawolves, so glad you got the all clear, thats great news. Hope you get  a good rheumatologist, I have been feeling good, have been shielding since March but at last in Scotland we are allowed out lol. It's been a strange  old world. Take care, good to hear from you x

Awww I didn't know you were in Scotland. My friend has just gone on holiday there for 2 weeks. I've been diagnosed with sleep apnoea which totally shocked me as I hardly snore lol have a telephone appt Thursday to see what they plan on doing as it's only mild to moderate x

Hi , Everyone.. I wrote back anout 2 months ago about finding a pea size lump under my chin which doesn’t move and i can feel it when I press in , I went to my gp and she felt around and she said it doesn’t look like it’s anything sinister and said I have a few swollen lymph nodes. But I remember last year anothet GP said the same to me I had swollen lymph nodes and she done bloods on me then which came back fine I keep thinking could they have stayed swollen and I’ve not known all this time My current GP done some bloods on me this time which came back fine aswell. 

Im still worried about these 2 lumps even though they haven’t grown in size they have been there for about 5 months is when I noticed them and the fact there hard and don’t move worries me more.... If request for a scan can my GP deni me one?? Has anybody else suffered with this just looking for something to make me feel better  

Thanks  

Hi, I've had lymphoma and had treatment for it. Unfortunately mine came back after treatment but it's just a small pea sized lump which I'm glad has not got any bigger. I think if they are small they won't do any treatment on them at this size, but I am now on watch and wait. If you are worried you should ask for an ultrasound and tell them you are worried. I would also check under your arm as well, I didn't know I had an enlarged lymph node under there till the doctor told me.. My ct scan showed I had them at side of my lungs as well. At the moment I am only graded as stage two and they don't usually do treatment till it gets worse. It's a lot different than other cancers. Check your groin area as well, these are the things they check when I go to the hospital although I havnt been since December but I do check these areas myself. I've also got no "B" symptoms, again this is a good sign. I had everything the first time round. My GP checked me the first time and referred me urgently to ENT. I hopefully think doctors would be able to tell which lumps are more worrying. Lymph nodes go up and down, my first lump got bigger and bigger before I went to the doctor, it went down a little though before my treatment. A biopsy is the only way they can tell if it's lymphoma but even the ultrasound can tell them if it's a reactive node or if it's more sinister they will do a biopsy. Please go back to your doctor if you are really worried.

Hi Scones , Thank you for your reply....yes I was reading your other reply’s to other people I seen that you have been a big help, I have none in my groin that I can feel or my armpits. Literly is just them 1 under my chin 1 in my neck..I have a lump on the side of my neck that moves around I had a scan on that with no biopsy the scan reveald it was benign. The one under my chin I’m concerned about I have no other symptoms with it and it hasn’t grown In size I feel really healthy. Its litterly is like a pea to. Noway they can not give you treatment if it’s small. I’m only 27 My bloods came back fine to I’m guessing that is a good sighn , my g.p looked and she didn’t seem concerned either Can lymph nodes stay hard and not move and just be lymph nodes with nothing else serious??? Yes I’m going to go back next Tuesday...

Hi, I'm not sure if they can stay hard, mine does but I've had a biopsy on it when the doctor found it six weeks after my treatment, it was the same kind of lymphoma and it's a slow growing one. I guess the treatment didn't kill all of it although my ct scan at the time showed it was all clear. The other thing she did was to send me for an X-ray which also showed it back in my lungs. The thing is I've experienced being quite ill, losing weight, night sweats and had no appetite, so I'm happy that I don't have those symptoms and there is no treatment just now, but again you have to vigilant that it could turn aggressive and that's a different ball game. I'm hoping I get a ct scan when I get to see my haematologist in September that's if it isn't cancelled. Try not to worry I'm sure if your doctor is happy with it, it should be ok. At the same time keep checking yourself, doctors do get it wrong and without proper biopsy they can't tell. When you get diagnosed it's a team of doctors that decide when treatment is required.in my case my haematologist told me they decided it was too soon for more treatment which I was delighted, you have to put your trust in them but at the beginning it was hard to live with. Take care, I hope your doctors can help you with this.

Hey scones,, I really hope this goes okay for you you seem very calm but I guess you have been threw the worst of it I’ve seen others on here go for a scan and not need a biopsy and they are fine. I doo check it everyday it isn’t getting any bigger atall it’s so small it’s literally rite in the center under my chin. I can only feel it when I push in you Carnt see it other wise. It’s more scary because I never check that bit of my chin probley  like thousands of others don’t I I keep thinking if I’ve had it for a long time it would of grown. I’ve been suffering with pleurisy I do have asthma, now I’m thinking is it all related, it’s crazy what the mind can do to you I’m going to back to the doctors and ask for a scan,, I can not think what else the lump could be that would be like this though. I hope you get better darling your a helpfull person X 

Hi I found a pea size lump in the same area as you, I went to doctors within 2 days as I worry and don't like to leave it. She checked my neck, told me not to worry and sent me for ultrasound, within 4 weeks I had scan and the scan man can't think of the word. Said he couldn't see anything sinister, within 2 days doctor rang to say I had to have biopsy on my thyroid, obviously I just *** myself but like a lot of people I straight away thought cancer. I'm now waiting for biopsy to happen.

I have done a lot of research and to be honest I'm less worried now I have had time to think and read about it is a rare cancer and people to go on to have normal lives but I was always taught that all the worry in the world won't make it go away. Just be positive and ask for that scan it's your right it's your body and please don't worry because you could make yourself ill and it would be for nothing.

good luck to all of you and

Hi all,

im in a pretty similar situation as the rest of you. I have what I think is a swollen tonsillur lymph node (under corner of my jaw left side), I've been obsessed with it for the last 3 months when I found it. It's hard to feel I need to push quite hard to feel it and doctors always struggle to find it when I go for an appointment. I was referred to ent as an emergency last month, had the camera and also an ultrasound the following week. The ultrasound showed that I had a benign lymph node and I was free to go, I was really happy and left the hospital. 4 weeks later it's still there and I'm becoming obsessed again, it's still hard to feel and the same size (sometimes feels like a marble other times like a grape!). I've also been having night sweats like every night although I have suffered with these for years! I'm going for another doctors app on the 27th so I'll keep everyone informed. I forgot to mention I had blood tests and everything came back clear.

sam x

Hi everyone. 
 

Been reading through all these posts and wanted to add my situation. About 5 weeks ago I found a lump in my neck on the right side at the back. Went to docs straight away and she said she didn't think it was much to worry about. Did bloods. She said white blood count was slightly low so I was probably fighting off a virus. 
 

Since then the lump has gone down a little but not gone. And I of course have been in major panic mode since. Last night I was having a feel around and have now found two really small nodes alongmy collar bone and the base of my neck. Smaller than a pea. I reckon about 5mm. I've got no other symptoms to really speak about. I'm always tired but then I hardly sleep. 
 

Should I be worried? I suffer from major health anxiety so doc has referred me for a scan but as she said 'not because she is worried but to set my mind at rest'. 
 

but I can't help thinking she's doing it because she thinks something is wrong and she doesn't want to panic me.