Hi all,

I'm just after some advice if someone has been in a similar situation to myself trying to get a diagnose of Sarcoid vs Lymphoma.

A bit of history June'25 i developed quite suddenly severe joint pain, and im talking everywhere... i couldnt sleep, walk or move my arms without being in agony, also severe swelling across both ankles, as well as the worst fatigue ive ever felt, i couldnt make it past 4 hours awake without having to nap for an hour. This led me to the doctors where after several blood tests, chest Xrays, ultrasounds, CT scans etc and then finally an EBUS TBNA  they diagnosed me with sarcoidosis, the joint pain lessened over these months without having to be medicated. So thought fantastic im getting better. However in this time i started developing a tightness over my chest which is sometimes painful. In November, they wanted to see how the sarcoid was doind so they performed another CT scan. The mediastinal and hilar lymphadenopathy had worsened, and i have developed some nodules on my lungs. The radiologist was concerned and said although Sarcoid is still in the differential, Lymphoma couldnt be ruled out. 

Last week, i had a PET CT scan, results came through on Friday as follows

" There are FDG-avid lymph nodes at the thoracic inlet that extend extensively into the mediastinum (anterior, bilateral paratracheal, prevascular, AP window, subcarinal, posterior mediastinal), hila and anterior diaphragmatic regions. For example, a 1.8cm right paratracheal node SUVmax = 25.2. Below the diaphragm there are active portal, portocaval, para-aortic, mesenteric and bilateral external iliac nodes. For example, a 2.7cm node at the porta hepatis SUVmax =19.1.

The spleen is not enlarged and shows normal activity.

A 0.8cm right upper lobe pulmonary nodule shows focal activity. There is also a 0.5cm active left upper lobe nodule. There is increased linear activity associated with the left anteroapical pleura. There are no pleural or pericardial effusions."

However my bloods are broadly ok, ive been taking extra strength vitamin D which was brought my levels back in the normal range "normal FBC apart from a lymphopaenia of 1.06, normal LFTs, normal ESR 10mm/h, normal LDH"

My doctor is a little flumoxed how my scan can look so bad but i feel generally well, he is putting me forward for another ebus this week, but using a larger needle, rather then the fine needle aspriate i have had previously. The fatigue continues as well as the chest pain, but otherwise i feel ok. Has anyone had anything similar and then been told it is just sarcoid? and if so what treatment was then recommended? The worry of being possibly diagnosed with lymphoma is terrifying me at the moment