Clyde's Journey with Skin Cancer - Melanoma

Patient: Skin Cancer - Melanoma

Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: over 4 years ago, Male, Age: 59, Stage IIA, BRAF mutation positive: Don't Know, c-kit positive: Don't Know

  1. 1
    • Clyde
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
    Clyde's Avatar


    Oh No

    Just found out and not even sure its a true diagnosis (7/16/12). Dr(s) not very communicative. Seem more interested in themselves, surgery and money than my health. Lots of conflicting information and lack of answers. Had to bully a couple of them into telling me anything. Wasted two days of appointments (hard appointments to arrange) to be told nothing more than I had learned from the website. Hospital badly run (unfiled paperwork, no communication between departments, Dr.s quitting without notice, no communication with me (appointments setup by offices without contacting me to give me the time and date)). Looking for a different medical facility somewhere in South Central Mo. St. Louis, KC, Columbia etc. Springfield a disaster. (Additional information) Just learned that the CT scan shows no mutation or spread (glad I insisted on this). Still want second opinion and ideas on what plan of action I should take.

  2. 2
    • Clyde
    • Experience with Skin Cancer - Melanoma
    about 4 years ago
    Clyde's Avatar

    Full lymph node dissection

    Procedure or Surgery

    I also had a hernia repaired at the same time (problems with anesthesia (any pharms actually), so combined the ops). As for the node, no issues of any kind (I marked disagree above because I expected issues which have not happened). I had expected to have limited movement in my arm etc, but nothing of the sort. The hernia is not healing as well as it could and the gas man botched placing the IV in my hand so I am having some problems there (three days later, limited movement and considerable pain). The second person to put the IV in went through my elbow which was no issue. Big problems with the pain meds. Hives, heightened temps, sweats etc. all of which I expected as this is usual for me (plus the lingering effects of the anesthesia). I am taking minimal pain meds to reduce the issues but having trouble sleeping due to hernia pain. Should get results tomorrow of the dissection. Nervous because of issues with chems so don't know if I'll be able to handle chemo or not if we need to go in that direction. Last Friday we took the remaining 26 nodes. All came back negative, so I consider that great news. But I had several side effects of the surgery that I didn't expect. From the surgeon, I found out today that they had to take a sensory nerve (news to me) but at least that explained the constant numbing sensations and occasional stabs of pain (nothing horrible, but a stab is a stab) and limited use of my arm which had me freaked out. The full anesthetic (twice in 8 days) caused dizziness, vision blurring, headaches, skin problems, bad breath, sleep problems---I really don't handle chems well---plus I had to deal with the drain. All together it meant 3 days of XXX. Today the surgeon explained that everything is going very well as far as healing and prognosis (St. III), that the numbing sensations will stop eventually (I can deal better with them now that I know why they exist) but the drain will probably be in for another 2 weeks min. Still, it could be worse. I feel fortunate to have a surgeon who takes pride in his work and is doing everything to make me the best I can be. He has explained the various tests and served as a sounding board for questions (The oncologist I am assigned is a nightmare and I'm going to change even if it means going to a different hospital.). But make no mistake, this is not an easy thing to go through and I'm only at the beginning. My heart goes out to all those who have endured far more.

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree