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Stage IV melanoma of unknown primary

Posts: 1
Joined: Jun 2015

just diagnosed on 7/10.  Metastasis was a subcutaneous tumor on back left calf.  Pathology says clear margins, PET scan negative for other mets. but,the unknown primary tumor diagnosis means the Cancer came from elsewhere, as yet undiscovered.  I am now considered NED , watchful waiting.  treatment will be surgery in the case of recurrence, possibly other adjuvant treatment.  The anxiety of this is debilitating, and I am going to retire as soon as I can (in the next six weeks).  I have scans and blood work scheduled for September 15.  Anyone have any wisdom to share regarding Stage IV, NED, and watch and wait?  this is so very new and I am finding that the unknown primary tumor situation makes my potential treatment outlook seem pretty sketchy. thanks in advance for your thoughts,.

Posts: 2
Joined: Aug 2015

Hi there. I completely understand your anxiety as I am a stave IV melanoma survivor. I had a mole on my shoulder removed about 20 years ago...it was stage II. It was removed by surgery, no chemo and I never thought about it again. I went on with life and had 3 children. After my youngest was born (13 years ago) I fell very ill and was diagnosed with stage IV melanoma. Most of the tumors were lodged in my spine, in fact my doctor said he had never seen so many tumors before. It caused several compression fractures and I was in severe pain. They also found tumors in my liver, lungs and brain. I was in the hospital for 3 weeks and did radiation at that time. Upon my release I did chemotherapy and once that was finished I went on Temodor as a maintenance treatment. I have to admit that a lot of my experience is a blur due to the fact that I was on heavy duty pain medications for the fractured spine. Most of the tumors shrunk and some completely disappeared. I was very, very sick and was not given high hopes of surviving, but as I said that was 13 years ago and I am completely healthy now. I know it is very frightening to think about the outcome of the situation and that is completely normal, but the best thing you can do is not let yourself become consumed with the fear. I was so scared for so long that I became debilitated with depression, it took me a few years to get out of bed and get moving. I guess what I am trying to say is don't let the statistics scare you. Believe in your own strength and determination. Do all the research you can and look at every possible alternative treatment. My husband at the time did so much research on the internet and had me taking all sorts of supplements which may have helped me beat the cancer. I also went to an accupuncturist who got rid of various pains I was having...it was like a miracle. I know the waiting is scary, but please know that your outcome doesn't have to be a grim one just because statistics tell you so. My doctors honestly didn't think I was going to leave the hospital, but I proved them wrong. My baby was only 5 months old at the tine and I believe she was my driving force to get better. I don't know if I really answered your questions but I am here if you would like to talk. I just want you to know that I beat the odds and so can you! 

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