Hello venus989

I can sympathise with your frustration. I too went to the Dr with shoulder pain and was referred to physio. It hurt like hell so I paid to see an Osteopath who quickly picked up on swollen lymph nodes on my collar bone and under my arms. I told the Dr who referred me urgently for a scan and biopsy. This pain started in July and since October I've had chest and neck ct, us with biopsy, chest xray, mammogram, pet scan, endoscopy, colonoscopy and another abdominal ct next week. They know now that my lymph nodes have secondary cancer cells from the biopsy but they haven't found the primary source yet. I'm in a lot of pain in my shoulder and arm but am hopeful the last scan of my "offal area" will show the primary tumour so I know what we're dealing with and can have treatment. 

Surprisingly enough I feel well in myself. The tests can be worrying and I've been sent via haematology, ent, breast clinic, back to ent and finally landed at gastroenterology, which I'm now assured is the correct route for people in my situation. The waiting for results is very stressful but remember, most people come out the other end with a good result, you just have to ride the waves. Good luck and please take any scans or biopsies offered for your own peace of mind. Xx

Hi,

Thank you for your reply. sorry it's taken me so long to come back. I suppose I was again hoping I'd get a magic fix. 

I hope you've started making progress! 

Since my last post I've had an x-ray of the shoulder which the Dr wanted to check in her words "nothing was going on in the chest" the results I got just said "joint bone appears normal NFA" 

Obviously I've now had to.make another appointment and wait for it as an unfruitful x-ray has not helped me. 

I now have: pain on the left side: back of tongue/ tonsil area (I have no tonsils) paindown my neck, in shoulder, across clavicle in armpit and sometimes into top of breast. 

Interestingly there are no massive swelling or anything glaringly obvious just immense pain. 

I'm at a point where I feel its clear it's something bad and the more time it takes the worse I am getting. 

Any advise on getting the GPs to speed up? It's been a year since this started. 

Hi,

Thank you for your reply. sorry it's taken me so long to come back. I suppose I was again hoping I'd get a magic fix. 

I hope you've started making progress! 

Since my last post I've had an x-ray of the shoulder which the Dr wanted to check in her words "nothing was going on in the chest" the results I got just said "joint bone appears normal NFA" 

Obviously I've now had to.make another appointment and wait for it as an unfruitful x-ray has not helped me. 

I now have: pain on the left side: back of tongue/ tonsil area (I have no tonsils) paindown my neck, in shoulder, across clavicle in armpit and sometimes into top of breast. 

Interestingly there are no massive swelling or anything glaringly obvious just immense pain. 

I'm at a point where I feel its clear it's something bad and the more time it takes the worse I am getting. 

Any advise on getting the GPs to speed up? It's been a year since this started. 

Hi

I'm afraid you just have to keep pushing your GP. I too made sure I saw a different one to the 2 appointments that sent me down the physio route. My pain has peaked beyond description over the last 6 weeks, my clavicle lymph nodes are huge and pressing on nerves and I cant help feeling an earlier diagnosis would have given me some treatment before I became unable to physically function and on steroid tablets. I've got my first oncology on Jan 8th and can't wait to start.

My only advice would be to keep on at the gp. I also kept ringing the hospital to find out when my scans etc were and that seemed to help a bit because quite often they'll make an appointment with you on the phone as long as the gp has written and you are on the system. If not, back to gp again! You may just have an underlying infection but you are obviously still concerned and need peace of mind. I wish you well. Xx

Hi,

Gosh I'm really sorry to hear it's ended up at a point where your pain is unmanageable! It doesn't seem fair when you have been trying to get the help!

Can I ask, can you personally feel the swollen Lymph nodes as there's nothing obvious on me! (Except for 1 in my neck which a consultant felt for 2 seconds and said he wasnt concerned and discharged me) Just pain at a lot of their sites but no infection showing on bloods. 

Let's hope they can get the swelling down for you and at least relieve the pain.

Thanks,

Hi, 

Yes, unfortunately the clavicular ones are golf ball size at the front and and back of my shoulders. They've grown so fast over 6 weeks, paralysing one vocal chord, causing a dry cough and cramps like I've never known. I've been told I have cancer in them but they can't find the primary source. The important thing now is to get treatment to relieve the symptoms and stop the cancer cells. Hopefully at some time the primary will be found and zapped but sometimes the nodes can mop it up and it disappears. All very uncertain at the moment.

I don't wish to alarm you with my diagnosis but as I started off being told I'd pulled a muscle in my shoulder and now find myself in this position, I would advise anyone to keep on pushing until you are happy with the outcome. All the best. Xx

Hi I know this was a while ago but how did you get on? I have exactly the same symptoms, couldn't have described the throat thing better and weirdly I also had a tonsil stone. I just finished breast cancer treatment last year and am terrified.

Can't feel lumps on collar bone area just squidgy like fluid but not .. if u know what I mean .. my glands up on neck on side small lumps there .. it's driving me mad thinking all sorts what could be wrong and no one listening .. unless I pay privately which is expensive

Hi 

I know this is an old thread but just wanted to check [@Venus989]‍ how things are now and if you found out the cause?

I too, have been having pain at the bottom of my neck (front) in the centre of my collar bone and left side of my neck. Like a tugging, sharp pain. Had all bloods checked and everything was fine and not related to thyroid, also suffering from sinusitis symptoms that won't shif. Can't feel any lumps or swelling. 
 

did anybody get a diagnosis for what this pain was?

Thanks and wishing you all well 

Hi! 

I am still on the NHS roundabout. 

1 GP found arthritis in both joints of my clavicle from an old injury. Some steroid injections ease this. 

He however is concerned RE jaw/neck/armpit pain. Everything has been on hold from covid and they basically fobbed me off. I'm going back this week. So fingers crossed 

Hi there, 

I hope you don't mind, but I am wondering if you have an update?

I came across your post. I have been getting pain in my collarbone, hips, legs and ankles for some time. It feels like something is gnawing at my bones only way I can describe it is it feels like a stinging pain. Very uncomfortable. It came and go to start with, however it is now regular. 
 

I have had bloods taken which came back normal and I have had a stool test, which showed no signs of inflammation. MY GP basically told that because of my age -30 year old male - and because of COVID I've got next to no chance being referred for tests. Not helpful at all and at a loss really.

I hope you're well.

Adam

Hey, [@Venus989]‍  and [@plyydm]‍ 

I'm wondering if anyone else is finding it abit of a hassle trying to get through the GPs recently. I'm only very young, but when I was younger I had a really rare form of leaukemia. Since august this year I've been back and forth to the GP first with an incredibly painful sore throat that I got told with tonsilitis, but unfortunately I've spent the last 4 months with a tonsil with very large cavities in it and a white spot, no pain, but the occasional sore throat. I've been referred to an ENT and I'm petrified that it could be something bad again. I've recently just started getting sharp collar pains and the doctor said my lymph nodes are swollen on my neck and collar bone.  She said it's related to a sinus infection, but honestly with how much I've had to fight recently to even get help I'm really petrified and sleepless that it's something bad going on again.

I've had about 10 different phone calls with different people their advice ranging from gargle salt water to I'll give you antibiotics if it will stop your anxiety, which I think is highly unprofessional. Being so young however it's hard for people to take me seriously, but I have underlying health conditions such as hypothyroidism, asplenia and I'm an ex cancer patient! But they all lump me in with a crazy anxious person and it's just so hard.

I hope you're both managing okay in these times, I've turned to this forum because honestly I'm scared and it's probably not cancer, most cases arent but I'm so scared I just wanted someone to understand me.

Stay safe everyone

I'm experiencing these same problems.  I'm worried sick.  Left clavicle area puffy and squidgy no significant lump as such just a mass of fluid lije swelling.  It never goes away and I'm now experiencing dull left neck left shoulder ache which is constant.  I'm tired a lot and don't feel "right" gp referred me for ultrasound but still waiting and I'm now starting to get palpitations (maybe worrying too much) the neck ache is getting more and more I think. Such a worry. I'm 47 and fairly healthy otherwise.