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

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.

So I have been searching forever for answers too .  .. I have swelling around my collar bone area both sides no fluid although that's what it looks like .. gets worse the more active I get I have had pain and difficulty breathing when it gets inflamed which is everyday . And a hoarse voice and small glands that are painful just below my jaw and on my neck .. No one can tell me why .. gp just says inflammation due to my fibromyalgia I have .. it really makes me feel unwell but just keep getting told fibro . Not sure what to do now .

Ktunny I can't believe I am experiencing nearly all the symptoms u are having do u have a constant sore throat as well x

Yes constant sore throat .. feels like I a constant flu symptoms my cousin has suggested I get tested for Cushing syndrome something to do with too much cortisone hormones .. not sure if is this but going to pay for private appt with rheumatologist and see what they say .. sick and tired of feeling sick and tired all the time . 

Hi,

I have very similar symptoms. Did you get a diagnosis?