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  • #65115
    alaskanmeg
    Participant

    Also, take solace in the fact that I was first diagnosed with Stage IV. After crying for a couple of hours, my psychologist called to make sure that had all the facts…Nope just Stage IIIa. I wish you well, and keep us posted. ;)

    #65116
    alaskanmeg
    Participant

    I’ve learned that mindfulness is a wonderful help. I suppose you already do that having a 5month old. :P

    #65117
    Happy_girl
    Participant

    I still see your posts I think- I see 3. Thanks for your encouragement! Btw- I teach 3rd graders…. Love them!

    * I was diagnosed stage 1 orginally- said nothing was found in lymph nodes. Then had a second opinion and they said they found 1 microscopic melanoma cell in my lymph node- bumping me to stage 3a if other lymph nodes come back clear.

    #65118
    alaskanmeg
    Participant

    With the information you have you can go to cancer.org and stage yourself. How did they determine you a node involved?

    When they mapped my lymph pathway (because it was in the middle of my back) the injected radioactive bits all the way around the biopsy site. Oh baby, does that ever hurt, but being a woman, just go ahead and roar. Bad take on the Helen Reddy song “I am Woman”. Sorry 😆

    #65119
    Happy_girl
    Participant

    I’ve been all over the place with my post-sorry. I had the wel and slnb-both originally came back clear. Then a second opinion in the lymph node- said there was 1 microscopic cell….. So now here I am. You are right… That shot hurt like crazy!

    #65120
    Catherine Poole
    Keymaster

    So a third opinion is a good idea now. I hope that is moving along. I know when I was going through this, when I went to a true place of melanoma excellence, the attitude and treatment really changed. It was far more relaxed and there was less anxiety among the doctors even. Pathologists are human and often make mistakes. So a few opinions is usually a good idea. Let us know how you are doing. Mindfulness meditation does help, but can be hard. Try looking at some of Jon Kabat-Zinn’s books/CDs etc. He is the pioneer. Also, seeing a therapist during this time can be very helpful as are some of the anti anxiety/anti depression meds. it does take a village to get through these stressful times.

    #65121
    Happy_girl
    Participant

    I called Sloan yesterday. They put me in the computer system and said someone would call me back in 24 hrs. I’m hoping that does include weekends. I’m trying to get this rolling…. Feels like I’m waiting forever- even though I’m def not. :). Trying to be positive and believe I can still be “ok”. Maybe see my daughter grow up! :). I appreciate everyone’s help and encouragement.

    #65122
    Happy_girl
    Participant

    I guess I am a little nervous because I think I am going to a place of excellence- uh- seidman center. But I’m concerned since he wants to do an outdated drug…. Still waiting to hear back from Sloan. My husband tells me not to expect it this weekend. He is so smart :)

    #65123
    alaskanmeg
    Participant

    When the took the original biopsy from me here in Alaska, it went from Elmendorf Air Force Base to the Pugent Sound VA in Seattle to Walter Reed in Maryland. I didn’t have my results back for close to 5 weeks. Yahoo Mt. Dew that was some waiting.

    I have been in a cancer support group for three years now. We meet every other week, and take turns updating the others about getting a test done, or just having the test done and waiting…waiting..waiting for the results. It’s insane. Find yourself a support group! I’m with 7 Vietnam Vets hahahahahaahahaha.

    Is your husband learning everything about melanoma with you? With cancer, it’s not just your life that is effected. The thing is, you’re just too sick to know it. But, I have high hopes that you can go for the “Wait and See” approach and be able to guide this new crop of young’ens on their journey of learning, and get a huge smile when your baby takes the first step. :D

    #65124
    alaskanmeg
    Participant

    Go to the NCCN guidelines. The National Comprehensive Cancer Network.

    http://www.nccn.org/professionals/physician_gls/f_guidelines_nojava.asp

    This was a great tool for helping me in my decision making and being informed.

    #65125
    Catherine Poole
    Keymaster

    Meg,

    Most advocates do not not find the NCCN guidelines to be very helpful or up-to-date for melanoma. You are much better off at a melanoma center where they are doing the research to get your advice.

    I do hope to work with this organization to bring this to light..

    #65126
    Happy_girl
    Participant

    Thank you both Meg and Catherine for your time. I meet with my oncologist tomorrow to hopefully discuss options- and am waiting to hear back from Sloan. I will update when I have more information.

Viewing 12 posts - 16 through 27 (of 27 total)
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