Hello CalamityJayne86

I'm sorry to hear that you've been dealing with these health concerns for a while. It sounds as if it's been a difficult time for you but I'm glad to hear that the Consultant is trying to get the necessary biopsies arranged for you. 

We know that many of our members here will understand how difficult and frustrating it can be waiting for tests and result. It's natural for anxiety levels to increase during these times. I do hope that they are able to go ahead with the biopsy next week and that it brings you closer to some answers and possible treatment options. 

If there's anything you'd like to speak to one of our nurses about then you're welcome to call them. They are available on 0808 800 4040, Monday to Friday 9am to 5pm. 

Best wishes, 
Jenn
Cancer Chat moderator

Hello, I've just come across your post and was wondering how you got on with the biopsy etc.   I tend to have a look on here every few days, but I must have missed your message, although it's a while since you put it on.    I too have had scans and biopsies, again unsure if its sarcoidosis or lymphoma. 

Hope you're doing ok.    Colin. 

Hi Colin, 

Thanks for your reply! Unfortunately none of my tests are confirming what's going on with me, the biopsy from a node in my neck has suggested it's not lymphoma though. I've had more bloods, ECG and lung function tests, I've also just finished a course of steroids and am continuing to take antiviral and antibacterial medications, I can't see that the steroids did much other than lighten the marks on my legs though as the chest discomfort/pain is still the same. I've been told it's a very challenging case and have been referred to the Thoracic Team who I am advised will want another biopsy. My consultant also advised they are liaising with Brompton Hospital for help because it is so difficult. It's been stressful but I'm confident they'll figure out what's going on in the end, I look forward to getting things under control and managing whatever this is!
 

How are you getting on? 

Hello CalamityJayne86,

Sorry to hear that you're having a long-drawn-out diagnostic process, as is Colin, and so am I. Lymphoma vs Sarcoidosis, same as you.

My blood test was normal except for the red blood cell count which was a bit low. An endoscopy and a neck biopsy were both inconclusive, so I'm getting an appointment for a mediastinoscopy under general anaesthetic (date not set yet).

The waiting is the worst. Even unwelcome news will set the stage for starting treatment.

Roger.

Hi Roger, 

Sorry to hear you're in this boat too! The waiting is certainly tough. I had been told I would be having a mediastinoscopy at first because they felt the neck node wouldn't give them enough information. They then decided they would do the neck first as it is less invasive - however the fact that they initially said this wouldn't give enough information concerns me and I wish they'd just do the mediastinosocpy - get in there and have a right good look around! 
 

Good luck and let us know how the investigations go, I hope the mediastinoscopy provides you with some answers. 
 

Rachael 

Thanks for your comments Rachael.

The consultant who did my neck biopsy said that it provides a diagnosis in 90% of cases. I'm certainly glad they tried that first, since the mediastinoscopy is a much more major procedure.

I like your positive attitude towards it ("get in there and have a right good look around"). My attitude is unfortunately more grudging ("it makes sense to do it, but I don't feel enthusiastic about it"). I don't like that it's done under general anaesthetic, whereas I found the endoscopy and neck biopsy to be quite interesting procedures, and marvels of modern medicine.

Roger.

Colin, I know it was Rachael who you were asking what her chest discomfort was like, but I'll chip in about mine anyway.

It's an odd and unfamiliar discomfort. At my last appointment I was unable to really describe it. I've thought about it since then, and the closest I can get is to say it's as if my chest contains a slightly warm liquid metal which slowly moves around (like the wax in a lava lamp). It feels weird but not painful.

Sometimes, though, there's also a feeling of pressure behind my sternum (breastbone), and that's a much more "ordinary" feeling.

Thanks for the reply Roger, mine is difficult to describe, but you're probably right about the feeling of pressure.   It seems worse since my chest biopsies but I might be just imagining it. 

Take care.  Col. 

Ah so we're the unfortunate 10% whose bodies are unwilling to offer a diagnosis! Very frustrating but I am trying to remain positive. As soon as we know what it is, we can manage it! 
 

My chest discomfort/pain is also difficult to describe, and it can be different day to day. Sometimes it feels tight and heavy, a dull aching across the entire chest region. Other times I have stabbing pains which could be in my chest or lower and to the sides. Sometimes it's like the feeling you get when you've just had a shock or a fright only my chest isn't recovering from that fright. It can make me feel very nauseous and is especially uncomfortable when laying down. I also have back pain with it.