I was just diagnosed on Monday evening with metastatic melanoma. A little of my backstory before a couple questions:
Since August/September I've been having non-specific symptoms on and off: fatigue, chills, body aches, dry & tired eyes. At the same time, it felt like I had pulled a muscle in my armpit. After rest, both issues subsided after a couple days. But they would come back. Then I felt a sore lymph node in my neck that had swollen up, but it went back down. Then my armpit was sore again and it occurred to me that it wasn't a pulled muscle, but also a swollen lymph node. Again though, lymph nodes went back down, symptoms subsided.
In November I had enough of not being able to shake whatever this was so I saw my GP, who sent me for 31 separate blood tests over the course of November/December. Nothing came back as out of the ordinary except that I tested as ANA positive. The upshot of all the tests was that I was being sent to see a rheumatologist, because of the ANA positive result. The bloodwork also showed that I had an EBV infection sometime in the past, so perhaps that had been reactivated. The prescription was rest and vitamin C until the rheumatology consult.
About 3 weeks ago, my neck started to swell under my left ear, and it was quite painful. As the swelling increased I could feel the pain behind my left eye, up the back of the left side of my head, on the left side of my jaw, in my left ear. I called my GP to report my new symptoms and was told the doctor would call me back if he had any questions. A week later, his PA called to say wanted another CBC.
I had been voicing my frustration all along to my wife, who is an OR nurse. She had gotten fed up enough with my complaining to mention it to a surgeon that she works with, who asked her if she wanted him to order an ultrasound for me. She did, and the next morning I was having an ultrasound of my neck, which showed a bunch of enlarged lymph nodes. The day after that I was in his office for a fine needle aspiration, and the day after that I was at the hospital having the largest lymph node removed for biopsy. I think the surgeon was thinking this was going to be lymphoma, and we were all very surprised to hear on the following Monday (2/3) that the pathology report had come back and this was melanoma.
On Tuesday I was in an oncologist's office who gave me the rundown on the immunotherapy meds available, response rates, side effects, etc. He also ordered a PET scan and a head MRI for Friday the 14th, and a visit to a dermatologist on the 25th.
So after a long time of seemingly doing nothing, there has been a flurry of activity over the past week and a half that has resulted in this diagnosis.
I have a couple questions. First, there is no obvious primary site. The surgeon who removed the lymph node looked me over fairly thoroughly and didn't see anything that looked abnormal. Will a PET scan show a lesion on the skin? I had an eye exam in September as well, and they didn't see anything of note then, either. Is the PET the be all/end all for determining all the places the cancer is?
Second, its been a long week of waiting and trying to wrap my mind around this diagnosis, and it'll be another long week of waiting for the scans on Friday, and then however many days until they're read and communicated back to me. Its sorta like this is the calm before the storm - is there anything I should be doing physically to prepare for treatment?
Thanks for listening, and for any help/advice!