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 

Hi, mine was large, you could clearly see it without even touching it, they told me at the ultrasound that they thought it was glandular and not to worry, but they were wrong even saying that. The second time after my treatment, my haematologist found a tiny pea size one on the same side again. After biopsy, she told me it was the same type of lymphoma, it was in my submandibular gland. It's still there, hence on watch and wait as they won't do treatment when it is that size. X-ray also showed its started at side of lungs again, but they regard it as grade 2 and this doesn't qualify for more treatment at the moment. It's worrying but I'm glad they are montintoring it, although because of this covid, my apppointment was cancelled so it's going to be 9/10 months before I get checked again, I'm being more careful checking. I didn't know I had one under my arm, so be vigilant and check there as well. Check your groin as well. These are the areas that lymphoma shows. I had to have ct scans which showed it was at side of lungs and side of each of my kidneys.. every hospital is different but I have every faith in my consultant. I also had a bone marrow biopsy the first time. They have to get loads of info before they make a decision on treatment. I also had a biopsy under my arm, all these tests took around three months before my treatment to make sure exactly the stage, type and if it was aggressive or indolent. Fortunately mine is indolent atm. Feel free to ask questions, I read everything. I could about it and it made sense when they start talking about it at your appointment. It gives you the heads up what they are talking about. My husband thinks I'm mad as he doesn't want to know anything and leave it to doctors. Xx

No I like to be informed,what confuses me is how some people don't get offered a biopsy when ultrasound isn't fail proof is it. My lumps are very soft and moveable but there has got to be a reason for them to keep appearing surely. I just keep hoping it perhaps fibro as I have many other symptoms and all the sensitive points in my body but again that appt has been cancelled. Fibro can make lympnodes swell but it's rare. We will see anyway what tomorrow brings won't we. Thanks for your help I appreciate it x 

Hi, I've heard of a lot of people when they get to ultrasound stage that they don't do it, I guess they could tell if it's an active lympnode or not, but after I had mine and what they said I would have been worried if they didn't do it. Mine showed a very black solid lump on the ultrasound, maybe if it doesn't do that they know, I'm not sure, I was quite lucky in that a consultant was teaching a doctor how to do the biopsy, he examined every gland in my face and explained everything to her, I think thats what made me believe it was glandular, but hey it wasn't. For your own piece of mind, hopefully they will give you hope.  Please let me know how you get on.

I will do thank you for taking the time out of your day to reply to me. Have a lovely day ️

Hi again so I went Thursday.the consultant said in his although enlarged my nodes are nothing sinister and in his words lots of people walk around with nodes gnus size but I'm am sensitive to them so they appear worse. He agreed to do an ultrasound and a chest xray. Made me feel like it was all in my head but he also knew i wouldn't just leave it as I don't feel all these nodes coming up is normal and if nothing sinister I'll accept it could be something autoimmune perhaps but I need to know. Hope your throat is better

Regards 

Hi, I'm pleased that he is continuing to do these tests. If they do just the ultrasound everything should be ok. If they are in any doubt they will do the biopsy. I think with lymphoma the chest X-ray is a matter of course to see if any lymph nodes are enlarged in chest area as mine was.  I hope you don't have long to wait for your ultrasound, again fingers crossed for you xx you are now one step ahead xx

The chest xray is because I've explained i have a pressure in my chest and soreness but it's very sparadic so no pattern as to when it comes on. Thanks again 

Hi again 

I had my chest x ray today anxious for results but what will be will be. How are you x 

Hi, that's good you got your X-ray, another wait, honestly the waiting around is the worst bit. I hope he still does the ultrasound to put your mind at rest. I'm good thanks, just a bit of a sore throat which is worrying me, I've had it for ages, it's only sore when I'm swallowing. Feel like food getting stuck a bit. All my appointments have been cancelled or I would mention it to my consultant. Thought it was an ulcer but it's not going away. Always something, when it's n your head it doesn't go away. I'm putting weight on with all this staying in so that for me is a good sign, and no new "B" symptoms. Just would like my bloods to be checked to make sure nothing creeping up on me. I was getting checked every three months but it got cancelled and my next appointment is not till October. That will be around 9 months since I've been checked. If I had any other symptoms I would call them, I just hope things start to get normal sooner than later. Wakening up far too early, 5.30 again groan. Hope you are keeping well xx

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

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.