Is it? Or Isn't it?

Hello I am hoping that somebody may of had a similar situation to me and could share.

6 months ago I went for bloodtests as I was suffering with night sweats and a sore finger knuckle. I ended with a vitamin D deficiency and presence of the rheumatoid factor. By the time I had the ultrasound, I had pain in my shoulder. The GP referred me to a Rheumatoligist and gave me cocodamol and naproxen. Also a shoulder x ray. In between a clear x ray, a cancelled Rheumatolgy appt, the GP simply extended the prescription. 2 months ago the pain had esculate into my chest, underarm and shoulder blade. I was told it was frozen shoulder booked of work and told to rest. 2 weeks later I had a severe dry cough, GP and A and E said that my lungs were clear and no infection. It stayed 2 weeks and disappeared. The shoulder, chest and rest still in serious pain and the painkillers didn't work ever. So 4 weeks ago I have appointment with Rheumatology who orders a load of bloods and also a CT and MRI but says she doesn't think anything will be wrong but will do a full check. 2 weeks ago I have CT results which showed nothing sinister but I do have swollen nodes in the lungs, so orders another CT in 3 months. At the same time I go to a physio about the frozen shoulder, but she is adamant it is not frozen shoulder due to my movement range so says she is going to look at the CT etc and see me last week. At that appointment a week ago today I see her and she says the CT results were strange and yet reports were very vague, after some touching and prodding, she is almost 100% sure it is an issue with my brachial plexus. Gives me an appointment for 26th next week. I have then done a bit of digging on the internet and thought it fits into the pancoast tumour cancer. All of it could be linked? I ring Rhematologist and raised my concerns, yesterday I get another CT Scan for this Saturday, so I'm assuming they are just as suspicious as me. But I have also been told that an MRI is far better at picking this type of apical cancer out. So maybe not? I am prepared for the diagnosis but I really just wanted someone who has possibly been through this prior to being diagnosed either way? Xxx

  • Hi Clabar. Welcome to the forum at what is a very difficult time for you.

    I'm not a doctor and I have no medical qualification. Apart from the nurses, I don't think anybody who hangs out here has any medical qualifications either. Please bear that in mind when you read our answers.

    In general, not many people ever accurately diagnose their own condition using Dr Google. So few, that we activiely discourage people from searching the web.  Google nearly always paints the worst case scenario.

    However, now you've raised the topic, Pancoast tumours are pretty rare, and are generally associated with people who have a long history of smoking, and/or long term exposure to asbestos, and/or industrial exposure to certain other metals and materials.  Does any of this apply to you? 

    CTs and MRIs work in different ways to provide different types of image which highlight different types of tissue. Having another CT may well provide a helpful comparision against your earlier CT result, but if you need an MRI you will get one. 

    I'm afraid you're in the awful situation that many of us here have been in. There's something wrong with you, but the doctors don't know what it is, and you're undergoing a series of tests, the results of which can be life-changing, and you're torn between hope and fear.  You really want this phase to be over, and to know where you stand, good or bad.  It's a dreadful place to be in, but you're not alone.