Home Forums Melanoma: Newly Diagnosed – Stages I & II Sigh, here we go again…

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  • #22151
    Profgal43
    Participant

    I wasn’t sure where to post this. I am newly diagnosed again. This is my fifth Stage 1 Melanoma diagnosis. The first four were on my right leg, this is on my left foot. I have had four this year. I have moles everywhere and new ones popping out all the time. None of my melanomas have looked strikingly different from my other moles. They were just new and growing. My question is for those of you who have been living with this disease for a while, how do you deal with the uncertainty when there are so many unknowns with this disease? I find myself obsessing about moles and wondering which one is the one I am missing. Thanks for listening and I would be happy to hear from anyone who can relate and anyone who has found coping strategies. We do use photography, but I have hundreds of moles and new ones all the time. Take care!! Karen

    #65302
    Catherine Poole
    Keymaster

    Do you go to a specialized pigmented lesion clinic? There are just a few across the country and I’m sure would be thoughtful and judicious about your situation.

    #65303
    olivermb
    Participant

    Hi Karen,

    I sure am sorry that you’re dealing with this. I can relate — three in situs, two on one foot/ankle area, and another on the other ankle. All within about 2 years (2 found within a couple of weeks).

    Like you, I have many moles, though new ones don’t come up too often, and they honestly don’t change all that much. But having the photos is a huge peace-of-mind thing for me.

    I totally understand being obsessed and paranoid. People kept saying that the paranoia gets better with time, and now I truly see that it does. People have different strategies for coping, so I’ll just throw out there what seems to work for me—

    a. Excercise — a huge stress reliever

    b. Meditation

    c. Avoiding searching too much on the Internet — it was too easy for me to obsess. This was probably the biggest thing.

    d. Trying to be diligent by doing monthly exams, having regular (4 month) appointments with my derm, and a yearly visit to the Pigmented lesion clinic at UPenn.

    e. Getting on with living life and just doing it with more awareness and care in the sun. I’m an avid scuba diver, and at first I thought this disease was going to take that away. But I’ve realized that I can totally continue to do what I’ve always done, but am just careful to wear better clothing, try to adjust when I do things, and to use sunscreen when I know it’s needed.

    f. Then I try to put it out of my mind. I have to rest in the knowledge that I’m doing everything I can. For a while, the life that I was so worried about was already being lost in troubled, worried thoughts.

    This forum and Catherine were instrumental to me. I thank everyone for helping me during the lower points in my life, and I hope, Karen, that your darker moments lessen up for you! Feel free to let me know if you want to talk on the phone ever. It’s nice to have someone to talk with who has been through similar things.

    Yours,

    Mary

    #65304
    Profgal43
    Participant

    Catherine Poole wrote:

    Do you go to a specialized pigmented lesion clinic? There are just a few across the country and I’m sure would be thoughtful and judicious about your situation.


    I see a melanoma specialist but I have not heard of specialized pigmented lesion clinics. I guess I am surprised my doc didn’t refer me if it would be helpful. How are they different from other melanoma clinics? Thank you so much for the information Catherine!

    #65305
    Profgal43
    Participant

    olivermb wrote:

    Hi Karen,

    I sure am sorry that you’re dealing with this. I can relate — three in situs, two on one foot/ankle area, and another on the other ankle. All within about 2 years (2 found within a couple of weeks).

    Like you, I have many moles, though new ones don’t come up too often, and they honestly don’t change all that much. But having the photos is a huge peace-of-mind thing for me.

    I totally understand being obsessed and paranoid. People kept saying that the paranoia gets better with time, and now I truly see that it does. People have different strategies for coping, so I’ll just throw out there what seems to work for me—

    a. Excercise — a huge stress reliever

    b. Meditation

    c. Avoiding searching too much on the Internet — it was too easy for me to obsess. This was probably the biggest thing.

    d. Trying to be diligent by doing monthly exams, having regular (4 month) appointments with my derm, and a yearly visit to the Pigmented lesion clinic at UPenn.

    e. Getting on with living life and just doing it with more awareness and care in the sun. I’m an avid scuba diver, and at first I thought this disease was going to take that away. But I’ve realized that I can totally continue to do what I’ve always done, but am just careful to wear better clothing, try to adjust when I do things, and to use sunscreen when I know it’s needed.

    f. Then I try to put it out of my mind. I have to rest in the knowledge that I’m doing everything I can. For a while, the life that I was so worried about was already being lost in troubled, worried thoughts.

    This forum and Catherine were instrumental to me. I thank everyone for helping me during the lower points in my life, and I hope, Karen, that your darker moments lessen up for you! Feel free to let me know if you want to talk on the phone ever. It’s nice to have someone to talk with who has been through similar things.

    Yours,

    Mary

    Thank you Mary! Great ideas and information. How long has it been since your last diagnosis? My first was four years ago. And yes the anxiety passed after a while though I kept up regular checkups. But this year it has been four melanomas. And I can totally relate to the feeling that anxiety is robbing you of the life you have. I’m trying to strike a balance: being realistic that at some point we may miss the melanoma but I’ll worry about that when we get there meanwhile living my life every day and not letting this disease rob me of joy in the moment. Feeling extra reflective as I lost a friend to cancer today.

    Thank you so much for your response, just knowing there are people who can relate is comforting.

    Karen

    #65306
    Catherine Poole
    Keymaster

    Where do you live? I would be happy to see if a clinic is in your area. They usually have a multi-disciplinary team that sees you, all specialities. They have photography, and have great knowledge about familial melanoma.

    #65307
    Broncogirl
    Participant

    Hello,

    I SO understand where you are coming from. I’ve had 2 melanoma in-situs in 5 years – the last was this last October. I’m actually going in today for another biopsy! My Derm told me I’m a Doctor’s worst nightmare because my melanomas do not look like melanoma. They don’t fit the ABC criteria, which is the scariest part. In fact, the last one was in the middle of my back and I just didn’t like it. He said it looked fine but based on my history, removed it and what do you know, it WAS melanoma. I think you just be as diligent as you can and don’t worry about being a “problem patient”. It is a rollercoaster but you just stay on top of it the best you can and be your own advocate. I haven’t looked into mole mapping or anything, but I do keep a list of ones I’m watching and if they change, I call immediately. My thoughts are with you.

    #65308
    1nth1
    Participant

    Sorry to hear you have had so many primary melanomas. I am 1 week post-op from my first WLE. The surgery site on my forearm looks like it’s healing well and I am scheduled to go back in another week. BUT….

    (always a but, eh?) I see another place a little closer to my wrist that I don’t like the looks of. I am torn between waiting the week/letting the derm look at it when I am scheduled, and going back in now for peace of mind. I know it’s paranoia. Cancer is scary. There’s family history, I am the poster child for skin cancer (fair, freckled, lived in the sun), and I am elderly (71). My whole skin has freckles and moles. So yeah, I can totally identify with your state of mind. Looking forward to seeing what more Catherine Poole says about pigmented lesion clinics. Meanwhile, you be well.

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