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  • I have been diagnosed with malignant melanoma stage1

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    Old 02-01-2008, 02:05 AM   #1
    Lady_J_1_01
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    Smile I have been diagnosed with malignant melanoma stage1

    I have been diag, with malig.melanoma stage1, they removed a mole on upper back.. then found another one that was confirmed neg, and also the tissue around the first one.... they did a lung xray and said it was ok...
    Man this is so new and frightening to me.... The oncologyst said I will need to see a derm. every 3 months then every 6.
    Ive read on line of some people going every 8-10 weeks to be rechecked....Will I have grief from my insurance comapany do most cover this stuff? I have UHC.....I dont want to be neg. but Im not finding alot of people who have survived LONG term skin cancer...melanoma....it looks so bleek... Is there groups of people Im missing that are survivng and doing well?? I have found some blogs.. but they just end... (did they die)? So if there is anyone intrested in sharing with me... <removed>... please do contact me. I have felt so overwhelmed.. I get my two incisionial stiches out 2 -morrow... and to be honest I am beat.. between dressing changes and working 16's Im frazzled and cant wait for a few days of down time.... anyone with melenoma want a penpal??? Mattie
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    Last edited by mod-anon; 02-17-2008 at 03:31 AM. Reason: please keep these Boards anonymous

     
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    Old 02-15-2008, 10:09 AM   #2
    samsister
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    Talking Re: I need a pen pal w/melanoma...

    Hi Mattie - My name is Sam and I am from South Africa. I live with my exboyfriend who has stage 3 melanoma on his head and neck and he has survived 2.5 years, his oncologist has another patient who has come through 8 years. I am his full time carer and I don't know personally what it must feel like but I do know the anxiety you can feel -I witness his being. I have just started a course on palliative care with hospice as I believe this is my calling in life - I lost a dear friend whom I cared for to HIV, I lost a very close friend to breast/brain cancer and now my ex is my third "patient". Cancer is devastating but with a positive attitude and a healthy diet you will be amazed at how well you will be. Have you heard of mole mapping? I recommend it because you can have all you moles monitored and check ups will show any change in behaviour. Tomorrow is South Africa's shavathon whereby volunteers (like me) go to major shopping malls and shave the brave people's heads or spray colour on the not so brave in support for cancer. We hold the guinness book record for the number of people participating.

    Be well and remember a positive attitude goes a long way to a healthy body

     
    Old 02-15-2008, 07:23 PM   #3
    painaway
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    Re: I need a pen pal w/melanoma...

    Mattie...So sorry you're going through this! BUT, the fact that you had Stage 1 is awesome, with no other tissue involved. I know SEVERAL people who have had melanomas removed, and never had another problem. My mother is one of them...my best friend's sister is another...four friends at church...my grandmother...and the list goes on. They are all alive and well (after several years for some), and the key was catching them early. I have LOTS of moles, so I'm really thinking I need to get them checked. I just hate the thoughts of it, but I know it's necessary. Please don't think having a melanoma is a death sentence, because it's definitely not. I think people quit posting because they are no longer in crisis or worried about their situation. After they have them taken care of, they don't need the support from the boards any longer. That will be you one day!

    Just keep having them checked and rechecked...and I'd fight "tooth and nail" to get my insurance to pay for checks more often then every three months, if I were you. Again, the key here is getting them in the earliest stage possible. People like you, who are vigilant and proactive, are the success stories. Put your worries to rest...you're going to be just fine! You've got this under control with your doctors, and you are doing all the right things. Now, if you'll excuse me, I'm going to get my moles checked, LOL!!!! Seriously, I need to! I'll let you know how it goes...and please keep me informed about your rechecks. I'll be praying for you. Everything is going to be just fine.

    Last edited by painaway; 02-15-2008 at 07:26 PM.

     
    Old 02-17-2008, 07:49 AM   #4
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    Re: I need a pen pal w/melanoma...

    Hi, I saw your post and thought I would respond. I was diag with melig melanoma as well. It has been 22 years since my diag.

    From personal experience, self exams and close watching by a derm doc is the way to go. Moles that appear or change need to be looked at.

    I so understand how you are scared. It takes time to process info and deal with the diag of cancer. Regular exams are one way to help take control back and cope with fear.

    take care

     
    Old 02-18-2008, 10:09 PM   #5
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    Re: I need a pen pal w/melanoma...

    Mattie,

    My situation is almost exactly the same as yours. In December 2007, my family doctor found a spot on my upper back and sent me to a dermatologist to have it removed. He said if I had not heard anything in 10 days, assume it was nothing. Well in 10 days I got a call - malignant melanoma. Still thin .450mm Clark's level 2, but could not be for sure about the depth. He recommended a surgeon for wider excision and sentinal lymph node biopsy. I freaked out. I had an appointment with the surgeon 2 days later and he scheduled surgery 5 days after that. This was the longest, darkest week of my life. After the surgery, the doc told my wife he was 99% sure the lymph nodes were clear. Being the pessimist I am I could not get over the 1% chance. But when I returned to the surgeon he said the results were negative on the lymph node and the wide excision.

    I am slowly beginning to believe I might be OK. I went back to the dematologist for a complete check and he decided to remove a dark spot on my arm that I'd had for a long time. That came back negative (2 days later this time rather than 10!). So I feel emotionally a little better now, but still think about it all the time.

    Since I've had this I have run into many people who had melanomas removed years ago and are OK today. I too noticed that people stop posting on the internet about their melanoma and you wonder what happened. I think a prior poster is right when they said they think people find out they are going to be OK. I think the cure rate is like 95% for you and me (Stage 1). We're going to be OK!!!

     
    Old 02-19-2008, 10:54 PM   #6
    Lady_J_1_01
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    Re: I need a pen pal w/melanoma...

    thank you all for answering... They never did a node test? as far as mole mapping it is not avalible in my area... I guess I broke rules by asking for a pen pal.. (my bad) I will pop in and out of here though and keep learning... and praying... and LIVING.... Hugzzzzz Mattie
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    Old 02-19-2008, 11:05 PM   #7
    Lady_J_1_01
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    Re: I need a pen pal w/melanoma...

    Quote:
    Originally Posted by painaway View Post
    Mattie...So sorry you're going through this! BUT, the fact that you had Stage 1 is awesome, with no other tissue involved. I know SEVERAL people who have had melanomas removed, and never had another problem. My mother is one of them...my best friend's sister is another...four friends at church...my grandmother...and the list goes on. They are all alive and well (after several years for some), and the key was catching them early. I have LOTS of moles, so I'm really thinking I need to get them checked. I just hate the thoughts of it, but I know it's necessary. Please don't think having a melanoma is a death sentence, because it's definitely not. I think people quit posting because they are no longer in crisis or worried about their situation. After they have them taken care of, they don't need the support from the boards any longer. That will be you one day!

    Just keep having them checked and rechecked...and I'd fight "tooth and nail" to get my insurance to pay for checks more often then every three months, if I were you. Again, the key here is getting them in the earliest stage possible. People like you, who are vigilant and proactive, are the success stories. Put your worries to rest...you're going to be just fine! You've got this under control with your doctors, and you are doing all the right things. Now, if you'll excuse me, I'm going to get my moles checked, LOL!!!! Seriously, I need to! I'll let you know how it goes...and please keep me informed about your rechecks. I'll be praying for you. Everything is going to be just fine.
    Thank YOU! and yes DO get checked.. people just dont realize it.. I have so many moles also (Iwas one) who used tanning beds.. I like it so much I bought one... Foolish me... BUT for awhile even looking down at my moles on my arms made me sick.. it is getting better.. I think the fear of (what if it crops up in my brain or lungs later) now I need to let this go and know God is in control..I lose my barrings sometimes and get all lost in stuff... Panic, has a way of stealing your joy and making you a nervous wreck.. Hence ME *points to self*
    I love to hear such sweet things that you wrote of... long time survivors... What really pushed me over the edge was (oh, good now your in remission) I thought what?? me remission... no there is no more ~Im cured.... but I guess they never SAY that.. instead remission... which makes me subcousiously think "hidden".. *shutters* Im trying not to focus on this as much any more... I WILL contine to see the derm every 3 months...and stay covered etc... I just dont want to feel like a walking time bomb..... So I CHOOSE to think of myself as well and healed! Lets do keep in touch.... Hugz Mattie
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    Old 03-06-2008, 02:46 PM   #8
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    Re: I need a pen pal w/melanoma...

    Hi Mattie, I'm from Minnesota too and found this board to help me SOOOO much when I went through my melanoma scare.

    About 2 years ago I had a mole removed from my arm that came back Melanoma. Stage 1B. I am 33 years old and had been a SUNWORSHIPER since I was in Highschool. I spent summers on the boat with no sunscreen and winters in tanning booths- tanning as much as 4 times a week!!!!!! Since my diagnosis- my skin has not seen the sun since! I still go on the boat, but lather on the sunscreen and sit under the surry on the boat. Anywho- I had a wide excision done as well as a sentinal node biopsy. Tissue around mole came back clean as well as my lyphnodes. I go to the Dermatologist or Oncologist every 3 months and will do that for 5 years I believe and then it will go to once a year. I have had a yearly PET scan done and feel good about doing that even though my oncologist thinks that I only need a chest xray. But I still insisted on having the PET scans done. It brings peace of mind but after insurance I still have to pay over $2,000 out of my pocket.

    I was really scared when this all happened and probably for about a year after. But as more time passes I don't really think about as much nor do I fear the oncologist appts either. I have 3 moles removed since and all came back fine. You caught yours very early and will be fine. Your chance for survival is like 99% or something. Don't worry so much! As time passes you will feel better!

    Angie

     
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