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New here. Clarks IV, Breslow 1mm. Need reality check.

Forums Cutaneous Melanoma Community New here. Clarks IV, Breslow 1mm. Need reality check.

  • Post
    Sunny Sea
    Participant

    Hi Everyone. 

    Hi Everyone. 

    I'm so glad to have found this site.  This is so overwhelming…..the people around me who seem to actually "get" how serious this is are few and far between.  Most telling me "dont worry" ….yeah right.   The complete loss of control over my future …..I mean, from now on, this *thing* is a central component of my existence.   I can never "not worry" that it will come back…..someplace.   And now, every little ache or pain i have is the cancer spreading.  I feel like i'm losing my mind.  And I'm kicking myself for pulling a wait-and-see approach when i noticed the thing changing about a year ago.  All i'd ever known about skin cancer was basal cell or squamous cell…..(cut it off, it's gone) so i didnt feel any urgency about getting it checked.  The fact that skin cancer can kill….I was so clueless.    —and i'm a freaking RN, you'd think i might have known better. 

    I know it all comes down to reports and results.  This is my biopsy report.  I had one mole taken from my back that my dermatologist found (it was atypical) and then the one on my wrist which was melanoma. 

    DIAGNOSIS:
         A.  Skin, right upper back, punch biopsy:
                – COMPOUND LENTIGINOUS MALANOCYTIC NEVUS WITH ARCHITECTURAL DISORDER AND MILD MELANOCYTIC ATYPIA
         B.  Skin, right forearm, excision:
                – MALIGNANT MELANOMA, SPINDLE CELL TYPE.
                – CLARK'S LEVEL:  IV
                – DEPTH OF INVASION:  1.0 MM
                – NO ULCERATION
                – NO REGRESSION
                – NO PERINEURAL OR ANGIOLYMPHATIC SPACE INVASION
                – THE MARGINS ARE CLEAR OF BOTH MELANOMA IN SITU AND INVASIVE MELANOMA
    COMMENT:
         Dr. Buckley, Dr. Frazier has also reviewed specimen B and concurs with the interpretation of spindle cell melanoma.
    ______________________________________________________________________________________________________________
     
    CLINICAL INFORMATION:
    41 y/o caucasian female
    A) irregularly shaped dark brown macule.  R/O atypia
    B) irregularly shaped multiclored macule with dark brown center.  Nevus. R/O melanoma in situ.
     
    GROSS DESCRIPTION:
        A.    Labeld with the patient name and "right upper back".  A pigmented skin punch measuring 0.8 cm in diameter and 0.5 cm in length.  Bisected.
        B.    Labeled with the patient name and "right forearm".  A skin ellpse 1.4 x 1.0 x 0.4 cm  No orienting marks are identified.  Inked, breadloafed, and submitted in one cassette. 
     
    MICROSCOPIC DESCRIPTION:
        A.    An asymmetric lentiginous proliferation of melanocytes in variably sized nests as well as individually at the tips and alongside rete pegs with extension into the dermis, highlighted by immunohistochemical stains for pan-melanocyte antigens, controls appropriate.  Broad zones of confluent melanocyte proliferation along the junction extending beyond three rete ridges in width or significant upward pagetoid migration are not observed.  There is a variable host fibroinflammatory reaction including melanophages.   Mild degrees of melanocytic atypia are identified.  The biopsy margins appear clear in the plane of section. 
       B.     Sections show broad, irregularly-nested and solitary atypical junctional melanocytes overlying sun-damaged skin.  Dermal cells are spindled with superficial mitotic figures identified.  There is no perineural or angiolymphatic space invasion identified.  The pan melanocytic marker highlights the spindled dermal melanocytes within the reticular dermis measuring to 1.0 millimeter.  There is no ulceration or regression.  Tumor infiltrating lymphocytes is absent.  A Ki-67 proliferating marker shows low proliferative activity of the dermal melanocytes.  An HMB-45 immunoperoxidase stain shows weak positive staining of the dermal spindled cells.  A pHH3 mitotic stain highlights a rare dermal mitosis.   The margins are clear of both melanoma in situ and invasive melanoma. 

     

    So, I had the initial biopsy in mid-February, they got the results a week later and referred me to a surgical oncologist.  The soonest appointment was March 1.  He in turn set me up for a WE and SNB which will be done this Thursday (3/31).  So, about 2 months have gone by since this thing was removed…..could it have been spreading or causing more problems while i'm sitting here WAITING…(the waiting is horrible).  

    If the WE removes all the tissue from around the site, HOW can the thing come back in the same area??   Can the still leave "stray" cells behind even when they're removing so much surrounding skin?   If it does come back, will it show up on the surface of the skin or just pop up in some random place in my body?   Could it not already BE somewhere else?  Is there a reason why they wouldnt have done a PET scan yet?  Wouldnt that be a logical step to take while we're waiting for the surgery date?   Ok, as you can see….i'm overthinking this and driving myself nuts.   I try to remember to take one day, one moment, one step at a time.   That's much easier said than done.  

    Thank God for all of you and the courage that you have to be on here, helping us "newbies" while continuing your own fight.   I'm sure the "freak-out" factor must get old after a while but i know that if anyone can understand it, it is those of you who have been here before.   Any help or guidance you can give would be appreciated.  

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Viewing 15 reply threads
  • Replies
      JerryfromFauq
      Participant
      Welcome to our scared group. Great people here that understand what you are feeling.
      Dependent upon what the WE and SNB show you hopefully will be stage I. Statistics are good when one’s melanoma are found at that stage. Janner has a site to help low stagers, us stage 4 people tend to add much fear to low stage people.
      Hang in there and don’t freak out too much without the info to know for sure.
      You need to get to a Melanoma specialist, not just a general Oncologist. Too much is happening in the Melanoma field for a generalist to keep up.
      It is good to learn the terms and to learn to keep a watch on oneself. Yes, melanoma may come back even when the doc’s think they have it all removed. A higher percentage of melanoma cells can take up residence in other locations than for most cancers. They say that everyone has cancer cells in our bodies, but that our immune systems take care of most of them for us.
      The main place to watch out for is the area around the tumor location and the lymph nodes nearest the location pf the tumor. (neck and armpit). Even a sore /swollen lymph node in those areas does not automatically say melanoma spread. They should be checked out immediately though. There are so many reasons lymph nodes can swell.
      Yes, it would be reasonable to do a PET/ST before the SNB. My General surgeon never even mentioned an SNB. I had to find the swollen lymph node and then get it removed then a {ET/CT to learn that many lymph nodes were affected.
      Let us know what you learn, WE ARE interested!

      JerryfromFauq Stage IV for over 4 years
      PS – Sunny what Sea are you near?

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        JerryfromFauq
        Participant
        PS. even a hot spot on a PET does not insure cancer. It just means that the glucose has gathered in that location and it should be checked further. (I knew my knee was busted up in car wreck 30 years ago and that I had had dental surgery.)
        Good luck.

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        JerryfromFauq
        Participant
        PS. even a hot spot on a PET does not insure cancer. It just means that the glucose has gathered in that location and it should be checked further. (I knew my knee was busted up in car wreck 30 years ago and that I had had dental surgery.)
        Good luck.

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        Sunny Sea
        Participant

        Jerry, thanks for responding.  I'll definitely take your advice about getting a melanoma specialist…..once the SNB is done.   No point holding things up at this point. 

        Oh, I'm not actually near any "sea"….I live on the east coast though.  :)

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        Sunny Sea
        Participant

        Jerry, thanks for responding.  I'll definitely take your advice about getting a melanoma specialist…..once the SNB is done.   No point holding things up at this point. 

        Oh, I'm not actually near any "sea"….I live on the east coast though.  :)

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        Sunny Sea
        Participant

        Jerry, thanks for responding.  I'll definitely take your advice about getting a melanoma specialist…..once the SNB is done.   No point holding things up at this point. 

        Oh, I'm not actually near any "sea"….I live on the east coast though.  :)

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        Sunny Sea
        Participant

        Jerry, thanks for responding.  I'll definitely take your advice about getting a melanoma specialist…..once the SNB is done.   No point holding things up at this point. 

        Oh, I'm not actually near any "sea"….I live on the east coast though.  :)

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      JerryfromFauq
      Participant
      Welcome to our scared group. Great people here that understand what you are feeling.
      Dependent upon what the WE and SNB show you hopefully will be stage I. Statistics are good when one’s melanoma are found at that stage. Janner has a site to help low stagers, us stage 4 people tend to add much fear to low stage people.
      Hang in there and don’t freak out too much without the info to know for sure.
      You need to get to a Melanoma specialist, not just a general Oncologist. Too much is happening in the Melanoma field for a generalist to keep up.
      It is good to learn the terms and to learn to keep a watch on oneself. Yes, melanoma may come back even when the doc’s think they have it all removed. A higher percentage of melanoma cells can take up residence in other locations than for most cancers. They say that everyone has cancer cells in our bodies, but that our immune systems take care of most of them for us.
      The main place to watch out for is the area around the tumor location and the lymph nodes nearest the location pf the tumor. (neck and armpit). Even a sore /swollen lymph node in those areas does not automatically say melanoma spread. They should be checked out immediately though. There are so many reasons lymph nodes can swell.
      Yes, it would be reasonable to do a PET/ST before the SNB. My General surgeon never even mentioned an SNB. I had to find the swollen lymph node and then get it removed then a {ET/CT to learn that many lymph nodes were affected.
      Let us know what you learn, WE ARE interested!

      JerryfromFauq Stage IV for over 4 years
      PS – Sunny what Sea are you near?

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      Kim K
      Participant
      Hi Sunny Sea, Sorry if too long….

      Glad you found us, sorry you had to join….

      I promise the dear in the headlights stage WILL pass. You are lucky in that a shave wasn’t done and neither was a WLE until your SNB. Wishing you well. On the upside, you have a low mitotic rate with no ulceration (yippie!!!). Hopefully it was slow growing and this will be the end of mel for you from here on out.

      Regarding the SNB – the Tech-99 hurts like a mother f*ker, kind of a burning hot iron stinging venom type thing – worse than a bee sting… Gladly it passes after a minute or two. You will have the prettiest smurf blue pee afterward.

      Your SNB will probably drain to one or both of your armpits. Needless to say I HAD to disregard my Dr’s advice to not shave or use deoderant for a week after. Yeah right! I was in South GA mid August sweating like a muther with razor sharp stubble. It lasted 3 days after which I shaved gently and used tweezers to rid myself of the particularly annoying hairs near my incision. I felt much better afterward. I used deoderant strategically placed around my pit. Sweat plus stubble and stink just didn’t do well for healing as far as I was concerned….

      Oh yeah, and I did wear a bra, one of the sports type or a cami with a built in bra… Going braless on top of everything didn’t work either. My WLE was on my bra line. My bra helped to keep my bandage in place and prevent oozing to my clothes.

      I am a DVM and had a white lab coat at the time…. It wasn’t in good form to have a blood spot on my back, bounce around up front, and smell like a hippie in an upscale Atlanta small animal practice – lol!

      Yes, I went back to work the next day. For me, work kept me sane and my mind occupied while wating for the results. Was I going to live, or die? I was only 34 when initially diagnosed.

      The scanxiety never gets easier, the waiting for tests is the worst. Don’t let people give you crap about medical professionals being terrible patients. I ask for my results ASAP and screw the “Only the Dr. can give you the results shit”. I made them put in my records that it is OK to release my results as soon as they are in hand.

      I need the time to figure out what to do next if anything bad comes back. Having my results ASAP lets me sleep if all is well, and if not, then do the needed research to make the most out of my appointment to follow. It allows me to get over the Oh crap it’s back part and come up with a battle plan.

      The systems in place that make you jump through hoops to get your results is cruel. Hopefully your Dr. is OK with that. You have the training and knowledge on what to do with the info until you can be seen for the official “results”.

      I am getting ahead of my self…. Hopefully your SNB is NED and then all you need to keep up with are the follow up exams. For your stage, if you have a clean SNB – there usually isn’t much follow up as far as scans. Just PE’s and possibly a chest X-ray. The other tests are too low yield, or too super sensitive and pick up false gumbies leading to worry and surgery to find scar tissue.

      Wishing you the best. Give us your results. Our arms are reaching out giving cyber hugs and to hang on to you when they inject that shit into your back.

      May you wake up without drains in your armpits…. Enjoy the blue pee and freak your friends out!’

      Kim K
      Stage IIA 7.11.02, Stage IV 7.09 – NED since 8.10 high dose IL-2.

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        Sunny Sea
        Participant

        Kim, i SO love your attitude!   I've been in need of a good laugh.  Not that ANY of this is funny, but the "blue smurf pee" got the better of me!   Also, it's good to know that the SNB will rank right up there with shoving bamboo under my fingernails.  WooHoo….fun fun fun :P

        Good that you were able to get back to work.  They're putting me out for a month.  Because the MM was about 2 inches above the wrist on my dominant hand, they're afraid that after the excision, the skin will be so tight that i could accidentally rip it back open.  They're trying to avoid a skin graft but it's going to be tight for a good while and they want the skin to have plenty of time to heal before i put any stress on it.   My right arm will be splinted and put in a sling so that i remember not to use it.  In preparation for this 30 day challenge, I've tried to practice functioning as a leftie…..it hasnt gone so well.  Brushing my teeth was a comedy of errors (my gums will never forgive me), showering was difficult at best – im thinking a jacuzzi and a bottle of Mr Bubble may be a better way to go.     I gave up hope of being "prepared" when, after several pathetic attempts, i concluded that  we need to install a bidet….immediately.   My husband was amused, i am not.   LOL.     guess my dignity will be a casualty of war.   m(__)m

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        Sunny Sea
        Participant

        Kim, i SO love your attitude!   I've been in need of a good laugh.  Not that ANY of this is funny, but the "blue smurf pee" got the better of me!   Also, it's good to know that the SNB will rank right up there with shoving bamboo under my fingernails.  WooHoo….fun fun fun :P

        Good that you were able to get back to work.  They're putting me out for a month.  Because the MM was about 2 inches above the wrist on my dominant hand, they're afraid that after the excision, the skin will be so tight that i could accidentally rip it back open.  They're trying to avoid a skin graft but it's going to be tight for a good while and they want the skin to have plenty of time to heal before i put any stress on it.   My right arm will be splinted and put in a sling so that i remember not to use it.  In preparation for this 30 day challenge, I've tried to practice functioning as a leftie…..it hasnt gone so well.  Brushing my teeth was a comedy of errors (my gums will never forgive me), showering was difficult at best – im thinking a jacuzzi and a bottle of Mr Bubble may be a better way to go.     I gave up hope of being "prepared" when, after several pathetic attempts, i concluded that  we need to install a bidet….immediately.   My husband was amused, i am not.   LOL.     guess my dignity will be a casualty of war.   m(__)m

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        Ranisa
        Participant

        Now I secretely wish that I check my pee out!

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        Ranisa
        Participant

        Now I secretely wish that I check my pee out!

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      Kim K
      Participant
      Hi Sunny Sea, Sorry if too long….

      Glad you found us, sorry you had to join….

      I promise the dear in the headlights stage WILL pass. You are lucky in that a shave wasn’t done and neither was a WLE until your SNB. Wishing you well. On the upside, you have a low mitotic rate with no ulceration (yippie!!!). Hopefully it was slow growing and this will be the end of mel for you from here on out.

      Regarding the SNB – the Tech-99 hurts like a mother f*ker, kind of a burning hot iron stinging venom type thing – worse than a bee sting… Gladly it passes after a minute or two. You will have the prettiest smurf blue pee afterward.

      Your SNB will probably drain to one or both of your armpits. Needless to say I HAD to disregard my Dr’s advice to not shave or use deoderant for a week after. Yeah right! I was in South GA mid August sweating like a muther with razor sharp stubble. It lasted 3 days after which I shaved gently and used tweezers to rid myself of the particularly annoying hairs near my incision. I felt much better afterward. I used deoderant strategically placed around my pit. Sweat plus stubble and stink just didn’t do well for healing as far as I was concerned….

      Oh yeah, and I did wear a bra, one of the sports type or a cami with a built in bra… Going braless on top of everything didn’t work either. My WLE was on my bra line. My bra helped to keep my bandage in place and prevent oozing to my clothes.

      I am a DVM and had a white lab coat at the time…. It wasn’t in good form to have a blood spot on my back, bounce around up front, and smell like a hippie in an upscale Atlanta small animal practice – lol!

      Yes, I went back to work the next day. For me, work kept me sane and my mind occupied while wating for the results. Was I going to live, or die? I was only 34 when initially diagnosed.

      The scanxiety never gets easier, the waiting for tests is the worst. Don’t let people give you crap about medical professionals being terrible patients. I ask for my results ASAP and screw the “Only the Dr. can give you the results shit”. I made them put in my records that it is OK to release my results as soon as they are in hand.

      I need the time to figure out what to do next if anything bad comes back. Having my results ASAP lets me sleep if all is well, and if not, then do the needed research to make the most out of my appointment to follow. It allows me to get over the Oh crap it’s back part and come up with a battle plan.

      The systems in place that make you jump through hoops to get your results is cruel. Hopefully your Dr. is OK with that. You have the training and knowledge on what to do with the info until you can be seen for the official “results”.

      I am getting ahead of my self…. Hopefully your SNB is NED and then all you need to keep up with are the follow up exams. For your stage, if you have a clean SNB – there usually isn’t much follow up as far as scans. Just PE’s and possibly a chest X-ray. The other tests are too low yield, or too super sensitive and pick up false gumbies leading to worry and surgery to find scar tissue.

      Wishing you the best. Give us your results. Our arms are reaching out giving cyber hugs and to hang on to you when they inject that shit into your back.

      May you wake up without drains in your armpits…. Enjoy the blue pee and freak your friends out!’

      Kim K
      Stage IIA 7.11.02, Stage IV 7.09 – NED since 8.10 high dose IL-2.

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      Carmon in NM
      Participant

      Hi Sunny Sea – yes, we have all been where you are and we survived that horrible first stage of consuming fear and loss of control. I think one of the things I hated the most was all of the people around me who dismissed what I was going through by saying 'Well it's just skin cancer and they got it all didn't they?'

      Everyone else has given you outstanding advise and information so I won't repeat it. Once you have a full set of answers and a treatment plan in place, you will begin to feel better and more in control. A big thing to remember is that even in the three years since I was diagnosed, treatments have changed dramatically and will continue to change. There are many, many people on this forum who have been LIVING with melanoma for many years now.

      For me, having people I could talk out my fear with was the most important thing. Fear left unacknowledged just keeps building and eating you up. I was lucky to have a great counselor who is a cancer survivor and also friends who let me tell them the same things over and over and over again until it no longer had any power over me. I also resorted to using xanax for anxiety and to help me sleep at night. I only used it for about a month but it did get me through those initial anxiety attacks and I think there should be no shame in asking for that kind of help.

      Please keep coming back and updating us on your treatment and decisions. This is a place where you can safely express whatever you need to so use it!

      Carmon in NM

      Stage 3b 9/2008, Stage 4 6/2010

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        Sunny Sea
        Participant

        Thanks Carmon,

        It is frustrating that there is so much misconception about skin cancer.  As i said, i'm an RN and even with my medical background, i never considered that skin cancer could be anything more than a mild inconvenience that resulted in a scar (heaven forbid).    Getting the quick and dirty education that i did, i cant believe that there isnt more education about how dangerous this is!   

        I did talk to one of my docs about the anxiety and sleeplessness.  I was put on Klonopin which (at first) knocked me out for about 10 hours.  Now, i'm not seeing much difference with it……insomnia strikes again.    I really hate taking meds anyway so, i dont know what i'm going to do about the meds.  I do have a great support group.  Now if i can just get the big picture in focus so i can get a plan and regain some sense of control……ugh. 

        I will definitely keep coming back.  I was so glad to find a group like this.  I think everyone here is amazing.  Just wish we had all met for happier reasons. 

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        Sunny Sea
        Participant

        Thanks Carmon,

        It is frustrating that there is so much misconception about skin cancer.  As i said, i'm an RN and even with my medical background, i never considered that skin cancer could be anything more than a mild inconvenience that resulted in a scar (heaven forbid).    Getting the quick and dirty education that i did, i cant believe that there isnt more education about how dangerous this is!   

        I did talk to one of my docs about the anxiety and sleeplessness.  I was put on Klonopin which (at first) knocked me out for about 10 hours.  Now, i'm not seeing much difference with it……insomnia strikes again.    I really hate taking meds anyway so, i dont know what i'm going to do about the meds.  I do have a great support group.  Now if i can just get the big picture in focus so i can get a plan and regain some sense of control……ugh. 

        I will definitely keep coming back.  I was so glad to find a group like this.  I think everyone here is amazing.  Just wish we had all met for happier reasons. 

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      Carmon in NM
      Participant

      Hi Sunny Sea – yes, we have all been where you are and we survived that horrible first stage of consuming fear and loss of control. I think one of the things I hated the most was all of the people around me who dismissed what I was going through by saying 'Well it's just skin cancer and they got it all didn't they?'

      Everyone else has given you outstanding advise and information so I won't repeat it. Once you have a full set of answers and a treatment plan in place, you will begin to feel better and more in control. A big thing to remember is that even in the three years since I was diagnosed, treatments have changed dramatically and will continue to change. There are many, many people on this forum who have been LIVING with melanoma for many years now.

      For me, having people I could talk out my fear with was the most important thing. Fear left unacknowledged just keeps building and eating you up. I was lucky to have a great counselor who is a cancer survivor and also friends who let me tell them the same things over and over and over again until it no longer had any power over me. I also resorted to using xanax for anxiety and to help me sleep at night. I only used it for about a month but it did get me through those initial anxiety attacks and I think there should be no shame in asking for that kind of help.

      Please keep coming back and updating us on your treatment and decisions. This is a place where you can safely express whatever you need to so use it!

      Carmon in NM

      Stage 3b 9/2008, Stage 4 6/2010

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      Janner
      Participant

      You've got some good advice but I'll add a few things.

      Give yourself a year.  Then you'll be surprised how things will mellow out.  Melanoma will no longer be the biggest thing on your plate.  They don't typically do scans for early stage individuals.  The scans are rarely positive, and scans tend to find other things that need to be checked out (biopsied, repeat scans) that are rarely melanoma.  So if your SNB is negative, you will just be a stage I individual who gets their skin checked periodically.  If your SNB is positive, they will probably do scans for a baseline and go from there.

      If you were to have a recurrence, it could happen a couple of ways.  You could have a local recurrence at the scar or it could spread to the lymph nodes in your armpit.  Rarely, it can spread via the blood supply to an organ with no other signs.  I believe that spindle cell, if caught early, is more likely to have a local recurrence and less likely to spread systematically.  (Generalizations, but spindle cell is a rare subtype of melanoma).  Being aggressive in removing tissue at the primary site is probably key for spindle cell melanoma. 

      Good luck and let us know how things go.  And yes, waiting is the toughest part.  Now when you do tests on your patients and they want the results NOW, you'll have a glimmer of how we patients hate to wait! smiley

      Best wishes,

      Janner

      3 MM primaries, stage I since 1992

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        Sunny Sea
        Participant

        Hey Janner,

        Thanks for your input.    A year seems so far off right now.  I know I'll get there, i just hate waiting for anything….patience is a virtue (but it's one i've never possessed). 

        Good to know that the early stage scans are usually negative.  I still plan to ask my doc for one at my next visit.  If i dont, i'll constantly  worry that something is lurking.  

        The additional info about spindle cells was helpful  and it did ease my mind a little. 

        Wishing you much health & happiness.

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        Sunny Sea
        Participant

        Hey Janner,

        Thanks for your input.    A year seems so far off right now.  I know I'll get there, i just hate waiting for anything….patience is a virtue (but it's one i've never possessed). 

        Good to know that the early stage scans are usually negative.  I still plan to ask my doc for one at my next visit.  If i dont, i'll constantly  worry that something is lurking.  

        The additional info about spindle cells was helpful  and it did ease my mind a little. 

        Wishing you much health & happiness.

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      Janner
      Participant

      You've got some good advice but I'll add a few things.

      Give yourself a year.  Then you'll be surprised how things will mellow out.  Melanoma will no longer be the biggest thing on your plate.  They don't typically do scans for early stage individuals.  The scans are rarely positive, and scans tend to find other things that need to be checked out (biopsied, repeat scans) that are rarely melanoma.  So if your SNB is negative, you will just be a stage I individual who gets their skin checked periodically.  If your SNB is positive, they will probably do scans for a baseline and go from there.

      If you were to have a recurrence, it could happen a couple of ways.  You could have a local recurrence at the scar or it could spread to the lymph nodes in your armpit.  Rarely, it can spread via the blood supply to an organ with no other signs.  I believe that spindle cell, if caught early, is more likely to have a local recurrence and less likely to spread systematically.  (Generalizations, but spindle cell is a rare subtype of melanoma).  Being aggressive in removing tissue at the primary site is probably key for spindle cell melanoma. 

      Good luck and let us know how things go.  And yes, waiting is the toughest part.  Now when you do tests on your patients and they want the results NOW, you'll have a glimmer of how we patients hate to wait! smiley

      Best wishes,

      Janner

      3 MM primaries, stage I since 1992

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      dian in spokane
      Participant

      Hi Sunny, and welcome to the board.

      You've already gotten a bunch of great info from others. The only thing I would add, because I didn't see anyone mention it, is the size of your scar. Almost everyone who comes here as a new patient is shocked and surprised at how big their initial scar is. Thats' because they need to get those 'clear margins' and they need to take an elliptical shaped slice of your skin in order to get all the surrounding tissue. So even with small, early stage melanoma, you can end up with a substantial scar.

      that is…of course…NO PROBLEM, and is a badge of survivor honor. But, a surprise nevertheless.

      Kim's right about the sharp and sudden pain during the injection for the SNB..but I don't think that pain lasted two minutes for me, I think more like 30 seconds.

      Good Luck to you, and again, welcome. Hope you will keep us posted.

      dian in spokane

      stageIV, NED 22 months

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        Sunny Sea
        Participant

        Hi Dian,

        The doc told me the scar would be about 3 inches long and will go pretty much all the way across my arm.  Not worried about the scar itself, wondering more about the contour of my arm with that much tissue removed.    I know smaller excisions tend to get the "dog ears" on either end of the eliptical incision and it looks like a "bite" has been taken out from the middle.   My arm still looks pretty weird from the first excision and that one was only about 1" long. 

        Thanks for the reassurance that the pain from the SNB will not last too horribly long.   It does seem like they'd find a better way to do that.  With all the pain meds available, people just shouldnt have to hurt as a part of medical treatment. 

        I will definitely keep you posted.  

        good luck to you too. 

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        Sunny Sea
        Participant

        Hi Dian,

        The doc told me the scar would be about 3 inches long and will go pretty much all the way across my arm.  Not worried about the scar itself, wondering more about the contour of my arm with that much tissue removed.    I know smaller excisions tend to get the "dog ears" on either end of the eliptical incision and it looks like a "bite" has been taken out from the middle.   My arm still looks pretty weird from the first excision and that one was only about 1" long. 

        Thanks for the reassurance that the pain from the SNB will not last too horribly long.   It does seem like they'd find a better way to do that.  With all the pain meds available, people just shouldnt have to hurt as a part of medical treatment. 

        I will definitely keep you posted.  

        good luck to you too. 

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        dian in spokane
        Participant

        I have scars on my left arm, my left leg, my back, and my chest. Those are the WLE scars. I have a dozen or more smaller, biospy scars from over the years.

        The one on my arm is the worst. Mine curves around the outside of my elbow, so keeping it immobilized was not that easy and the scar stretched and just doesn't look good. But that's okay..one learns not to give a rip about a few scars. More disturbing for me was the numbness I had in my forearm for months and months..well..I still have SOME of that 8 yrs later.

        But I have full use of my arm, and play my guitar for sometimes 4 or 5 hours at a stretch.

        I think you are so smart to be practicing using your other hand!!

        You'll do fine with that SNB, really, the pain is quick and done. I've had plenty of worse procedures!

        Good Luck!

        dian

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        dian in spokane
        Participant

        I have scars on my left arm, my left leg, my back, and my chest. Those are the WLE scars. I have a dozen or more smaller, biospy scars from over the years.

        The one on my arm is the worst. Mine curves around the outside of my elbow, so keeping it immobilized was not that easy and the scar stretched and just doesn't look good. But that's okay..one learns not to give a rip about a few scars. More disturbing for me was the numbness I had in my forearm for months and months..well..I still have SOME of that 8 yrs later.

        But I have full use of my arm, and play my guitar for sometimes 4 or 5 hours at a stretch.

        I think you are so smart to be practicing using your other hand!!

        You'll do fine with that SNB, really, the pain is quick and done. I've had plenty of worse procedures!

        Good Luck!

        dian

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      dian in spokane
      Participant

      Hi Sunny, and welcome to the board.

      You've already gotten a bunch of great info from others. The only thing I would add, because I didn't see anyone mention it, is the size of your scar. Almost everyone who comes here as a new patient is shocked and surprised at how big their initial scar is. Thats' because they need to get those 'clear margins' and they need to take an elliptical shaped slice of your skin in order to get all the surrounding tissue. So even with small, early stage melanoma, you can end up with a substantial scar.

      that is…of course…NO PROBLEM, and is a badge of survivor honor. But, a surprise nevertheless.

      Kim's right about the sharp and sudden pain during the injection for the SNB..but I don't think that pain lasted two minutes for me, I think more like 30 seconds.

      Good Luck to you, and again, welcome. Hope you will keep us posted.

      dian in spokane

      stageIV, NED 22 months

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      CKasper
      Participant

      I don't know the inital staging as I was first staged in 1984…but the good thing is the date….1984, I've been through alot and I'm still here….so think positive thoughts, and fight fight fight.

       

      C

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        Sunny Sea
        Participant

        Thanks for the encouragement, C. 

        Keep fighting, you give me hope. 

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        Sunny Sea
        Participant

        Thanks for the encouragement, C. 

        Keep fighting, you give me hope. 

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        Carol Taylor
        Participant

        Hi Sunny Sea,

        You say you're on the east coast.  If you're close to Duke, I can highly recommend Duke Morris Cancer Clinic & melanoma specialist Dr. Douglas Tyler…he even does a special melanoma clinic.

        I will add only one thing and that is to use this as an opportunity to educate others about melanoma every chance you get.  I was diagnosed July 2008 and by October I'd had 2 surgeries to remove all nodes under left arm (by all means get all suspicious moles removed to 1 mm depth and pathed!), lymphedema set in by November, so I've been wearing a very obvious compression sleeve & glove.  It gets stares, and people will ask why I wear it.

        Someone said our scars are our "badge of honor", true.  I call my sleeve and glove my "mark of grace."  They open the door for me to tell people my story and to keep a check on their own skin and moles.  I've had people get back to me and tell me they've made apps and had moles removed.

        We've all probably got those stories.  Don't let fear bog you down and don't put so much stock in being an RN.  No offense.  I'm a pastor!  It took this to convince me I'm not mortal! 

        Stay positive.

        Grace and peace,

        Carol stage 3b

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        Carol Taylor
        Participant

        Where's the "edit" when you need it?! I AM mortal!  See? I'm still not convinced!  What a Freudian Slip!

        Carol

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        JerryfromFauq
        Participant

        Well, Ms Pastor,

          I  have to tell you what my pastor told me.  "We're all mortal, No one gets  out of here alive."  I asked if  he didn't believe the story of Elijah  in the Bible.  He looked at me and responded, "I don't think you're in  the same category!"  Oh well, probably not, even if my wiffe says she thinks that after all i've been through that I'm just too stuborn to die!

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        Carol Taylor
        Participant

        Too funny, Jerry! I like Elijah's style, too.  Nothing like going out in a blaze of glory. I know there's nothing funny about melanoma, or any cancer, (I want to say that before anyone might take offense at this little bit of comic relief), but life does go on and keeping a sense of humor and being able to laugh is important and good for the soul.  And healing.  Amazing the things science studies and learns!  Laughing is good for us!

        So, Sunny, in all the seriousness of what's happening in your life, try not to let it get the best of you or overwhelm you.  Keep your spirits up and that will actually be good medicine…and it's FREE…and you don't have to worry about insurance covering it!

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        Carol Taylor
        Participant

        Too funny, Jerry! I like Elijah's style, too.  Nothing like going out in a blaze of glory. I know there's nothing funny about melanoma, or any cancer, (I want to say that before anyone might take offense at this little bit of comic relief), but life does go on and keeping a sense of humor and being able to laugh is important and good for the soul.  And healing.  Amazing the things science studies and learns!  Laughing is good for us!

        So, Sunny, in all the seriousness of what's happening in your life, try not to let it get the best of you or overwhelm you.  Keep your spirits up and that will actually be good medicine…and it's FREE…and you don't have to worry about insurance covering it!

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        JerryfromFauq
        Participant

        Well, Ms Pastor,

          I  have to tell you what my pastor told me.  "We're all mortal, No one gets  out of here alive."  I asked if  he didn't believe the story of Elijah  in the Bible.  He looked at me and responded, "I don't think you're in  the same category!"  Oh well, probably not, even if my wiffe says she thinks that after all i've been through that I'm just too stuborn to die!

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        Carol Taylor
        Participant

        Where's the "edit" when you need it?! I AM mortal!  See? I'm still not convinced!  What a Freudian Slip!

        Carol

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        Carol Taylor
        Participant

        Hi Sunny Sea,

        You say you're on the east coast.  If you're close to Duke, I can highly recommend Duke Morris Cancer Clinic & melanoma specialist Dr. Douglas Tyler…he even does a special melanoma clinic.

        I will add only one thing and that is to use this as an opportunity to educate others about melanoma every chance you get.  I was diagnosed July 2008 and by October I'd had 2 surgeries to remove all nodes under left arm (by all means get all suspicious moles removed to 1 mm depth and pathed!), lymphedema set in by November, so I've been wearing a very obvious compression sleeve & glove.  It gets stares, and people will ask why I wear it.

        Someone said our scars are our "badge of honor", true.  I call my sleeve and glove my "mark of grace."  They open the door for me to tell people my story and to keep a check on their own skin and moles.  I've had people get back to me and tell me they've made apps and had moles removed.

        We've all probably got those stories.  Don't let fear bog you down and don't put so much stock in being an RN.  No offense.  I'm a pastor!  It took this to convince me I'm not mortal! 

        Stay positive.

        Grace and peace,

        Carol stage 3b

        Loading spinner
      CKasper
      Participant

      I don't know the inital staging as I was first staged in 1984…but the good thing is the date….1984, I've been through alot and I'm still here….so think positive thoughts, and fight fight fight.

       

      C

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      CatLvrBBW
      Participant

      Good luck with the waiting.  You have all the good advice.  I'm another with about the same stats.  Diagnosed at the end of April-surgery wasn't until almost Memorial Day.  Mine was on my back-ended up with drainage under both arms.  I did not wear a bra for at least 2 weeks-I had some swelling in the areas even though they were just SNB.  I am overweight which probably contributed to that.   They did do a CT scan before surgery.  nothing found.  And at the end of April will be 8 years NED.  Don't drive yourself crazy.  And if you do, we are here on the board.

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      CatLvrBBW
      Participant

      Good luck with the waiting.  You have all the good advice.  I'm another with about the same stats.  Diagnosed at the end of April-surgery wasn't until almost Memorial Day.  Mine was on my back-ended up with drainage under both arms.  I did not wear a bra for at least 2 weeks-I had some swelling in the areas even though they were just SNB.  I am overweight which probably contributed to that.   They did do a CT scan before surgery.  nothing found.  And at the end of April will be 8 years NED.  Don't drive yourself crazy.  And if you do, we are here on the board.

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      Sunny Sea
      Participant
      Hello again everyone,
      I’m sorry it’s been so long since my last post. I’ve just started to feel somewhat like myself again. I had some issues post-op and stayed pretty heavily medicated until last week (then it was TAX CRUNCH). Maybe i should have done my taxes on meds…. I’m sure i could have gotten a better return that way, lol.
      My surgery went well. You’re right, the scars are impressive. Even though i knew what to expect, seeing them the first time was something else.
      I had to go back to the ER the night of the surgery. Percocet apparently does nothing for nerve pain. Not sure what happened but after i was home, i tried to reposition my arm. I had this sudden sharp pain in the back of my upper arm (not near either of the surgical sites) then the skin over that area went numb. I assumed i had just moved wrong and tried to reposition my arm again with the same result but slightly lower. I quit trying to move my arm and looked over my post op instructions to see if they said anything about this. nothing. my husband called the doctor and of course gets the “if this is an emergency, call 911” pre recorded message. About that time, and for no apparent reason, it felt like someone plowed the back of my arm with a burning hot razor from shoulder to elbow and the entire back of my arm felt like it had been injected with lidocane — skin went completely numb. UNfortunatey the burning hot razor was still there with absolutely no apparent way to make it stop. Long story short, i managed to scare the living crap out of my entire family (screaming like a banshee tends to do that) and I got to meet the wonderful staff at the local ER ….after passing out and having a blood pressure of 150/130. It took IV meds to get the pain back under control — dilaudid is great stuff. The next 4 days consisted of taking pain meds, sleeping, waking up, and taking meds again.
      The skin over my triceps is still numb but the nerve pain is not nearly as intense as it had been and I’ve found that when it gets bad, direct pressure & ice packs help. I’ve lost some range of motion in my shoulder and my wrist. The doc says he didn’t go into muscle so any loss of movement should improve as the skin stretches out. Nevertheless, i’ll be starting physical therapy to get things moving again as soon as possible. If it wasnt my dominant arm, i probably wouldnt worry about it, but there’s enough of a change that daily activities are difficult.
      All that being what it is, i’ll take it. I got my biopsy report back and the lymph nodes and wide excision were all free of cancer! I wish that meant i’d never have to think about cancer again, but i know that isnt the case.
      No one really said when i was supposed to schedule my next dermatology appointment. Will a melanoma specialist do regular skin checks or should i be doing those with my dermatologist?? With a history of melanoma, what criteria do they use for determining what moles to remove? Do they remove them for having a single sign of cancer or do they wait for them to look more suspicious? just wondering because i have several large moles, a few that are multicolored, and others with irregular boarders. Is ONE sign enough for biopsy now or will they wait until they look more suspicious?
      I cant help but feel that i’m just getting a reprieve from this battle. I had 3 moles checked, one was normal, one atypical, and one melanoma…..and there are many many many more. Will i always feel like there’s more melanoma that hasnt been detected?

      I hope that all of you are doing well and that none of you were affected by all the recent tornadoes.

      Hugs & best wishes

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        Janner
        Participant

        Sorry you had such a battle with your surgeries.

        As for your last question….

        First, only about 8% of the melanoma population EVER have a second melanoma primary.  So your odds are still pretty good of avoiding that.  As for you existing moles, you really don't just look for one cancer sign.  Almost all of my moles fit one criteria.  I obviously pay attention to the ABCDE's of melanoma.  But for me, foremost, is CHANGE.  A weird mole that has never changed is just weird.  A normal mole that changes and starts to have ABCDE features is candidate for biopsy. Then there is the ugly duckling.  This is usually why people's first melanoma is removed.  They have a mole that looks different from all their other moles.  That rule still applies.   If you have a lot of moles, you might consider having some photos taken.  That gives you an independent eye when watching for change.  (I know my imagination has run away with me before, but when I pull out my photos, everything looks as expected).   My first melanoma looked "classic", my other 2 did not.  Neither were outwardly suspicious for melanoma, but both had changed.  Maybe given time, they would have looked more classical, but I chose to biopsy them when I noticed change.  Most derms look for change, too.

        Janner

        Stage IB since 1992, 3 MM primaries

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        Sunny Sea
        Participant

        Thanks for the information Janner.  I feel like I've gotten better & more complete information here than i have from my doctors.  Good idea about the pictures.  I'll have to get my hubby to take some pics for me so I can keep track.   The moles that dont present the "classic" signs are the ones that worry me.  I've heard a lot of stories about people who had to argue with their doctors to get biopsies done & then had them turn out to be cancerous.  I suppose I'll eventually relax about all this.  I'm really glad to have found this forum..   

        Sunny

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        Janner
        Participant

        Go with your gut.  I find it more reliable than anything else.  If you REALLY feel something should come off, just insist.  Tell the derm it has changed, or tell him to guarantee in writing it isn't melanoma.  ;-)   My cutanous oncologist didn't think my last primary was anything special.  And truthfully, it looked ok EXCEPT I just knew I didn't have this dark mole on my back for long. So change dictated its removal.  Now my derm asks my gut feeling about anything I want off.  I rarely have biopsies because I don't have many changing moles.  But that has been my defense for 19 years now and I'm still stage I.

        Best wishes,

        Janner

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        Janner
        Participant

        Go with your gut.  I find it more reliable than anything else.  If you REALLY feel something should come off, just insist.  Tell the derm it has changed, or tell him to guarantee in writing it isn't melanoma.  ;-)   My cutanous oncologist didn't think my last primary was anything special.  And truthfully, it looked ok EXCEPT I just knew I didn't have this dark mole on my back for long. So change dictated its removal.  Now my derm asks my gut feeling about anything I want off.  I rarely have biopsies because I don't have many changing moles.  But that has been my defense for 19 years now and I'm still stage I.

        Best wishes,

        Janner

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        Sunny Sea
        Participant

        Thanks for the information Janner.  I feel like I've gotten better & more complete information here than i have from my doctors.  Good idea about the pictures.  I'll have to get my hubby to take some pics for me so I can keep track.   The moles that dont present the "classic" signs are the ones that worry me.  I've heard a lot of stories about people who had to argue with their doctors to get biopsies done & then had them turn out to be cancerous.  I suppose I'll eventually relax about all this.  I'm really glad to have found this forum..   

        Sunny

        Loading spinner
        Janner
        Participant

        Sorry you had such a battle with your surgeries.

        As for your last question….

        First, only about 8% of the melanoma population EVER have a second melanoma primary.  So your odds are still pretty good of avoiding that.  As for you existing moles, you really don't just look for one cancer sign.  Almost all of my moles fit one criteria.  I obviously pay attention to the ABCDE's of melanoma.  But for me, foremost, is CHANGE.  A weird mole that has never changed is just weird.  A normal mole that changes and starts to have ABCDE features is candidate for biopsy. Then there is the ugly duckling.  This is usually why people's first melanoma is removed.  They have a mole that looks different from all their other moles.  That rule still applies.   If you have a lot of moles, you might consider having some photos taken.  That gives you an independent eye when watching for change.  (I know my imagination has run away with me before, but when I pull out my photos, everything looks as expected).   My first melanoma looked "classic", my other 2 did not.  Neither were outwardly suspicious for melanoma, but both had changed.  Maybe given time, they would have looked more classical, but I chose to biopsy them when I noticed change.  Most derms look for change, too.

        Janner

        Stage IB since 1992, 3 MM primaries

        Loading spinner
      Sunny Sea
      Participant
      Hello again everyone,
      I’m sorry it’s been so long since my last post. I’ve just started to feel somewhat like myself again. I had some issues post-op and stayed pretty heavily medicated until last week (then it was TAX CRUNCH). Maybe i should have done my taxes on meds…. I’m sure i could have gotten a better return that way, lol.
      My surgery went well. You’re right, the scars are impressive. Even though i knew what to expect, seeing them the first time was something else.
      I had to go back to the ER the night of the surgery. Percocet apparently does nothing for nerve pain. Not sure what happened but after i was home, i tried to reposition my arm. I had this sudden sharp pain in the back of my upper arm (not near either of the surgical sites) then the skin over that area went numb. I assumed i had just moved wrong and tried to reposition my arm again with the same result but slightly lower. I quit trying to move my arm and looked over my post op instructions to see if they said anything about this. nothing. my husband called the doctor and of course gets the “if this is an emergency, call 911” pre recorded message. About that time, and for no apparent reason, it felt like someone plowed the back of my arm with a burning hot razor from shoulder to elbow and the entire back of my arm felt like it had been injected with lidocane — skin went completely numb. UNfortunatey the burning hot razor was still there with absolutely no apparent way to make it stop. Long story short, i managed to scare the living crap out of my entire family (screaming like a banshee tends to do that) and I got to meet the wonderful staff at the local ER ….after passing out and having a blood pressure of 150/130. It took IV meds to get the pain back under control — dilaudid is great stuff. The next 4 days consisted of taking pain meds, sleeping, waking up, and taking meds again.
      The skin over my triceps is still numb but the nerve pain is not nearly as intense as it had been and I’ve found that when it gets bad, direct pressure & ice packs help. I’ve lost some range of motion in my shoulder and my wrist. The doc says he didn’t go into muscle so any loss of movement should improve as the skin stretches out. Nevertheless, i’ll be starting physical therapy to get things moving again as soon as possible. If it wasnt my dominant arm, i probably wouldnt worry about it, but there’s enough of a change that daily activities are difficult.
      All that being what it is, i’ll take it. I got my biopsy report back and the lymph nodes and wide excision were all free of cancer! I wish that meant i’d never have to think about cancer again, but i know that isnt the case.
      No one really said when i was supposed to schedule my next dermatology appointment. Will a melanoma specialist do regular skin checks or should i be doing those with my dermatologist?? With a history of melanoma, what criteria do they use for determining what moles to remove? Do they remove them for having a single sign of cancer or do they wait for them to look more suspicious? just wondering because i have several large moles, a few that are multicolored, and others with irregular boarders. Is ONE sign enough for biopsy now or will they wait until they look more suspicious?
      I cant help but feel that i’m just getting a reprieve from this battle. I had 3 moles checked, one was normal, one atypical, and one melanoma…..and there are many many many more. Will i always feel like there’s more melanoma that hasnt been detected?

      I hope that all of you are doing well and that none of you were affected by all the recent tornadoes.

      Hugs & best wishes

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