Living with Sarcoidosis

Im a 43 year old male. I had a Mole removed from my back and biopsied. The Biopsy could not rule out Melanoma so I was referred to a surgical oncologist (SO). My SO had me take a special PET scan involving nuclear material which pools in areas in the body of increased metabolic activity (typically cancer)and lights those areas up on the PET scan. I lit up like a Christmas tree with bright spots throughout my chest, in the bones in my arms and pelvis and at the base of my skull.

Based upon this scan, my SO told me and my wife that what was taken off my back was indeed melanoma and had spread through-out my body into stage 4 (there is no stage 5) cancer and that at best I had a couple years left. At that point I asked “what are the chances this is some form of rare disease other than cancer?” and got the response ” Ive been doing this for 20 years and have never seen a case like this turn out to be anything other than cancer”. A subsequent biopsy of one of the areas in my chest came back as Sarcoidosis (I got to walk around as a dead man for a week and also break my mothers heart before getting it right).Further biospies (of the bones) resulted in similar doagnosis.

Its taken me a year to get over the emotional damage caused by the miss-diagnosis but I believe Im finally getting there. My Sarcoid, while prevalent, hasnt progressed nor recessed. I dont have the phsyical symptons other associate with the disease. Skin lesions, tiredness. I do sleep 8 hours per night but my Gen Practitioner states that is normal. As such, Im glad its Sarcoid.