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Brand New to This – Help me please

Forums Cutaneous Melanoma Community Brand New to This – Help me please

  • Post
    kbc123
    Participant

    Hello ~  This is totally new to me and I am looking for answers, support, sanity, sleep, not all in that order.

    Hello ~  This is totally new to me and I am looking for answers, support, sanity, sleep, not all in that order.

    I am currently in the very beginning stages of my new life-  with Melanoma.  I had a strange mole on my back that was removed last week, got the "unfortunately its Melanoma"  telephone call on Friday.  By Monday, I was seen by a doctor in our local Cancer Institute (CINJ)  who really gave me a better outlook on things, but nonetheless, I am petrified.  I am going for a lymphoscintigraphy and for more surgery to take off more skin/tumor area and I will have a lovely scar on my back ( who really cares about that anyway).   I will take all the scars they can give me, but I want my life back.

    Someone on here, please tell me I am going to get through this, because as of last night, my brain can't deal with this. Sleep is minimal, I can't turn it off. 

    I will owe you the world if someone could just give me peace of mild. 

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  • Replies
      Jerry from Cape Cod
      Participant

      Hi,

      The first thing is to take a very deep breath and relax. Do you have a copy of the pathology report?  If not, your doctor's office can give you a copy?  Highly recommended that you always get copies of every report in the future.

      With the info on the pathology report the members will be able to assist you better, but for the time being it sounds like you are in good hands at your center.  At some point you may want to get to a melanoma center or a melanoma expert, but that can wait for the out come of you Wide Excision pathology and the Sentinal node biopsy. 

      After your doctor has those reports he/she can give you a far better consultation.

      Try to relax and know that you have a good group of folks here to support you. 

      My recommendation to you is to NOT start looking up everything you think you know about melanoma because you will most likely just scare the living S*IT out of yourself with worry.  Don't go scrolling through the posts on this board until you have a better understanding of where you are.

      When you have your pathology reports post the info here and I'm sure that you will get a pretty good rate of response with real grounded information.

      Also, most oncologists are not specialists in melanoma and believe it or not many oncologists do not know the level of treatment that is now available for advanced disease.

      Best of luck and sorry that you had to join the "club"

      Jerry from Cape Cod

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      Jerry from Cape Cod
      Participant

      Hi,

      The first thing is to take a very deep breath and relax. Do you have a copy of the pathology report?  If not, your doctor's office can give you a copy?  Highly recommended that you always get copies of every report in the future.

      With the info on the pathology report the members will be able to assist you better, but for the time being it sounds like you are in good hands at your center.  At some point you may want to get to a melanoma center or a melanoma expert, but that can wait for the out come of you Wide Excision pathology and the Sentinal node biopsy. 

      After your doctor has those reports he/she can give you a far better consultation.

      Try to relax and know that you have a good group of folks here to support you. 

      My recommendation to you is to NOT start looking up everything you think you know about melanoma because you will most likely just scare the living S*IT out of yourself with worry.  Don't go scrolling through the posts on this board until you have a better understanding of where you are.

      When you have your pathology reports post the info here and I'm sure that you will get a pretty good rate of response with real grounded information.

      Also, most oncologists are not specialists in melanoma and believe it or not many oncologists do not know the level of treatment that is now available for advanced disease.

      Best of luck and sorry that you had to join the "club"

      Jerry from Cape Cod

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        kbc123
        Participant

        Thank you Jerry for respondng so quick.   My name is Kathy by the way…This is the scariest shit i have seen.  And YES, i have been on hte internet searching, looking, nausea setting in….

        I have to say, the doctor called it stage 2.  I do have the report.  I actually want to keep a copy of everything under the sun now. 

        The report states a diagnosis of a "mid back melanoma, approximately 1.01 mm in thickness"  No evidnce of ulceration, regression or lymphovascular invasion.  Edges are free of melanoma.

        There is full discription – I can put that out there as well.  Just lots of info.  Words like Nests of englarged melaocytes with granular cytoplastm.  All stuff that I read and KNOW is not good.  Ugh, I wish I had it in me to handle this.

        You do mention Melanoma centers.  That is the information I really want.  I am all for getting other opinions.   I lost my Mom to Breast cancer in 07.  If we didnt go to other doctors, she would have been dead 6 years earlier. 

        My doctor that I did see in the Cancer Institute of New Jersey is a oncology surgeon.  He and his other two associates see any melanoma patients.  He did tell me that I was the 5th patient that day with a diagnosis of melanoma.  He seemed very well versed on everything.  I did ask him about going to Cancer Center of America in Philidelphia and he really has no problem with me going, just states that CINJ gives them their info/clinical trials etc.  This is where I am looking for other input from here.  ( I am happy there are people out here for support, trust me….) I am 41 years old (going to be 42 very soon) and I am really not ready to believe that I have that C word.

        Thanks so much for listening and any information is welcomed ( well, maybe not all information UGH)

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        kbc123
        Participant

        Thank you Jerry for respondng so quick.   My name is Kathy by the way…This is the scariest shit i have seen.  And YES, i have been on hte internet searching, looking, nausea setting in….

        I have to say, the doctor called it stage 2.  I do have the report.  I actually want to keep a copy of everything under the sun now. 

        The report states a diagnosis of a "mid back melanoma, approximately 1.01 mm in thickness"  No evidnce of ulceration, regression or lymphovascular invasion.  Edges are free of melanoma.

        There is full discription – I can put that out there as well.  Just lots of info.  Words like Nests of englarged melaocytes with granular cytoplastm.  All stuff that I read and KNOW is not good.  Ugh, I wish I had it in me to handle this.

        You do mention Melanoma centers.  That is the information I really want.  I am all for getting other opinions.   I lost my Mom to Breast cancer in 07.  If we didnt go to other doctors, she would have been dead 6 years earlier. 

        My doctor that I did see in the Cancer Institute of New Jersey is a oncology surgeon.  He and his other two associates see any melanoma patients.  He did tell me that I was the 5th patient that day with a diagnosis of melanoma.  He seemed very well versed on everything.  I did ask him about going to Cancer Center of America in Philidelphia and he really has no problem with me going, just states that CINJ gives them their info/clinical trials etc.  This is where I am looking for other input from here.  ( I am happy there are people out here for support, trust me….) I am 41 years old (going to be 42 very soon) and I am really not ready to believe that I have that C word.

        Thanks so much for listening and any information is welcomed ( well, maybe not all information UGH)

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        Shaggy
        Participant

        Hi Kathy

         

        Greeting from England.Let me put you straight…Firstly dont panic.Theres still plenty do do out there.I was diagnosed with stage 3 MM back in 1995 and im still here.Ive been on this site since 2002…so a bit of an old hand….well not so old.

        Best source of information is this site…its written by people directly affected by MM,not some author thats read about it in a book.So try to stay possitive.

        Also have a good sense of humour…that helps as well.Well it does help when you live in eNGLAND LIKE I DO…FREEZING COLD WEATHER…SNOW…RAIN..AND THATS IN THE SUMMER…LOL

        My name is Ian,but i go by the name of shaggy on here.

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        Shaggy
        Participant

        Hi Kathy

         

        Greeting from England.Let me put you straight…Firstly dont panic.Theres still plenty do do out there.I was diagnosed with stage 3 MM back in 1995 and im still here.Ive been on this site since 2002…so a bit of an old hand….well not so old.

        Best source of information is this site…its written by people directly affected by MM,not some author thats read about it in a book.So try to stay possitive.

        Also have a good sense of humour…that helps as well.Well it does help when you live in eNGLAND LIKE I DO…FREEZING COLD WEATHER…SNOW…RAIN..AND THATS IN THE SUMMER…LOL

        My name is Ian,but i go by the name of shaggy on here.

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        kbc123
        Participant

        Nice to meet you Shaggy (Ian)   It's really a comfort talking to people that are or have gone thru this before.  No one can really relate to this feeling.  The word MELANOMA is such a life changing word.  I previously heard that about someone and thought, oh God, that is it.  But there are so many different avenues with this disease.  I am finding out first hand from all of you great people on here.

        Truth be told, I do have to – NOT panic.  I am telling myself that however my brain isn't listening.  Stage 3, you are still here, God love ya for saying it like that ! 

        and FYI we are freezing here too !  New Jersey just had more snow.  after the 30 + inches we had two weeks ago.  UGH!

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        kbc123
        Participant

        Nice to meet you Shaggy (Ian)   It's really a comfort talking to people that are or have gone thru this before.  No one can really relate to this feeling.  The word MELANOMA is such a life changing word.  I previously heard that about someone and thought, oh God, that is it.  But there are so many different avenues with this disease.  I am finding out first hand from all of you great people on here.

        Truth be told, I do have to – NOT panic.  I am telling myself that however my brain isn't listening.  Stage 3, you are still here, God love ya for saying it like that ! 

        and FYI we are freezing here too !  New Jersey just had more snow.  after the 30 + inches we had two weeks ago.  UGH!

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      lhaley
      Participant

      Jerry has given you great advice!  While it's good to be educated you don't know yet what you are dealing with and you most likely are reading information that is not pertinant to you. Do repost with your path report that gives information like Breslow depth, mitosis, even the Clarks level if that is listed (many labs do not list that anymore).  YOu will find much information from members of this board once you have all of your information.  I'm sorry you've had to join us.

      Also let us know what part of the country you are from so we can help if needed with melanoma specialists locations. I know you said you are being treated at CINJ but I'm only guessing that stands for New Jersey.

      For right now, breathe deeply, occupy yourself with something or someone you love.

      Linda

      dealing with mel since 1979

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      lhaley
      Participant

      Jerry has given you great advice!  While it's good to be educated you don't know yet what you are dealing with and you most likely are reading information that is not pertinant to you. Do repost with your path report that gives information like Breslow depth, mitosis, even the Clarks level if that is listed (many labs do not list that anymore).  YOu will find much information from members of this board once you have all of your information.  I'm sorry you've had to join us.

      Also let us know what part of the country you are from so we can help if needed with melanoma specialists locations. I know you said you are being treated at CINJ but I'm only guessing that stands for New Jersey.

      For right now, breathe deeply, occupy yourself with something or someone you love.

      Linda

      dealing with mel since 1979

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        kbc123
        Participant

        Hi Linda –

        Thank you TOO for the warm welcome :(   I appreciate all that you are telling me.  I did post some of that report but there is more.  I am assuming  I should put it all out there……here we go.

        Specimen is a shave biopsy of skin 0.7 x 0.5 x 0.1

        Asymmetrical compound melanocytic lesion.  wtihin the epidermis there are nests of enlarged melanocytes with grey-grannular cytoplasm.  Nests of melanocytes are present at all levels of the epidermis. There are also foci of single crowded melanocytes again present at all levels of  epidermis.  Within the dermis, there are irregular and confluent nests of similar melanocytes showing no maturation with progressive descent into the reticular dermis.

        DIAGNOSIS- Mid Back melanoma approximately 1.01 mm thickness

        Melanoma is present in the reticular dermit to a depth of approximately 1.01 mm. there is approximately 1 mitotic figure per millimeter squared of tissue.  there is no evidence of ulceration, regression or lymphovascular invasion.  The edges of the biopsy are free of melanoma in the planes of sections examined though appropriatel excision is warranted. .

         

        UGH – that is about it.  This is what my whole world comes down to.  A single pathology report. 

        I have lymphoscintigraphy set up and lymph node surgery as well as surgery to take more off and sew me up –

         

        Thanks so much.  I feel like a baby after reading so of these other stories.  Linda I didnt read about your info yet but Jerry, God bless you – you have gone through so much.  how are you doing as of now? 

        Thanks, thank you, really.

        Kathy in NJ

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        kbc123
        Participant

        Hi Linda –

        Thank you TOO for the warm welcome :(   I appreciate all that you are telling me.  I did post some of that report but there is more.  I am assuming  I should put it all out there……here we go.

        Specimen is a shave biopsy of skin 0.7 x 0.5 x 0.1

        Asymmetrical compound melanocytic lesion.  wtihin the epidermis there are nests of enlarged melanocytes with grey-grannular cytoplasm.  Nests of melanocytes are present at all levels of the epidermis. There are also foci of single crowded melanocytes again present at all levels of  epidermis.  Within the dermis, there are irregular and confluent nests of similar melanocytes showing no maturation with progressive descent into the reticular dermis.

        DIAGNOSIS- Mid Back melanoma approximately 1.01 mm thickness

        Melanoma is present in the reticular dermit to a depth of approximately 1.01 mm. there is approximately 1 mitotic figure per millimeter squared of tissue.  there is no evidence of ulceration, regression or lymphovascular invasion.  The edges of the biopsy are free of melanoma in the planes of sections examined though appropriatel excision is warranted. .

         

        UGH – that is about it.  This is what my whole world comes down to.  A single pathology report. 

        I have lymphoscintigraphy set up and lymph node surgery as well as surgery to take more off and sew me up –

         

        Thanks so much.  I feel like a baby after reading so of these other stories.  Linda I didnt read about your info yet but Jerry, God bless you – you have gone through so much.  how are you doing as of now? 

        Thanks, thank you, really.

        Kathy in NJ

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        Jerry from Cape Cod
        Participant

        Kathy,

        I really haven't been throught what many have.  I'm laying claim to the luckiest guy in the world lable.  Great group of people here, ready to help with advise and encouragement.

        After you get the next set of results I'd suggest you post a question asking for info about Melanoma specialists / centers close to you.

         

        Plan to live and then live the plan.

        Jerry from Cape Cod

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        Jerry from Cape Cod
        Participant

        Kathy,

        I really haven't been throught what many have.  I'm laying claim to the luckiest guy in the world lable.  Great group of people here, ready to help with advise and encouragement.

        After you get the next set of results I'd suggest you post a question asking for info about Melanoma specialists / centers close to you.

         

        Plan to live and then live the plan.

        Jerry from Cape Cod

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        kbc123
        Participant

        Plan to live – then live the plan…. I am looking for the strength to BELIEVE and know I will be okay.

        How are you doing as of now? 

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        kbc123
        Participant

        Plan to live – then live the plan…. I am looking for the strength to BELIEVE and know I will be okay.

        How are you doing as of now? 

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        Jerry from Cape Cod
        Participant

        I'm 2 years out from stage IV dx.  Doing very well, waiting for one stubborn lung problem to resolve other than that I'm doing great.  I'm not ready to do the NED dance yet, but I'm still able to see the grass (if I shovel the snow)

        Jerry from Cape Cod

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        Jerry from Cape Cod
        Participant

        I'm 2 years out from stage IV dx.  Doing very well, waiting for one stubborn lung problem to resolve other than that I'm doing great.  I'm not ready to do the NED dance yet, but I'm still able to see the grass (if I shovel the snow)

        Jerry from Cape Cod

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      Joan C
      Participant

      The mention of 1.01 suggests a Breslow depth, to me.  Without ulceration, that would put you at a Stage 1B, if I'm not mistaken (and I am not as fluent in staging as many on here).

      It sounds like they will do a Sentinel Node Biopsy before the Wide Local Excision, but that is likely the only thing you'll need at this point.  Stage 1B is a pretty good place to be at, if you have to have melanoma.

       

      If you opt to go to Philadelphia, I highly recommend going to Penn – they have a huge amount of experience in treating melanoma.

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      Joan C
      Participant

      The mention of 1.01 suggests a Breslow depth, to me.  Without ulceration, that would put you at a Stage 1B, if I'm not mistaken (and I am not as fluent in staging as many on here).

      It sounds like they will do a Sentinel Node Biopsy before the Wide Local Excision, but that is likely the only thing you'll need at this point.  Stage 1B is a pretty good place to be at, if you have to have melanoma.

       

      If you opt to go to Philadelphia, I highly recommend going to Penn – they have a huge amount of experience in treating melanoma.

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        kbc123
        Participant

        Thank you Joan for that info.  Penn was one place I was tossing around.  The Cancer Center of America was another just because i hear so much about it.  I did hear John Hopkins as well but I am sure Penn is a bit closer to me than Hopkins. ( not that it matters, I will travel the earth to find out what I should be doing…)

        I too thought it was 1B but the doctor stated Stage 2? He read what I read so I am not sure.  I just pray the lymph nodes come back clean.  He says 90 percent chance they are fine.  I hope that is true (99 percent would be better however,….)

         

        I am so happy I posted on here.  No information and guessing is worse than dealing with melanoma itself…Its consuming me…..

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        kbc123
        Participant

        Thank you Joan for that info.  Penn was one place I was tossing around.  The Cancer Center of America was another just because i hear so much about it.  I did hear John Hopkins as well but I am sure Penn is a bit closer to me than Hopkins. ( not that it matters, I will travel the earth to find out what I should be doing…)

        I too thought it was 1B but the doctor stated Stage 2? He read what I read so I am not sure.  I just pray the lymph nodes come back clean.  He says 90 percent chance they are fine.  I hope that is true (99 percent would be better however,….)

         

        I am so happy I posted on here.  No information and guessing is worse than dealing with melanoma itself…Its consuming me…..

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        Joan C
        Participant

        Well, again I am no expert on staging.  But here is a link to a PDF.  Scroll down to staging, and you see that stage 1B is for 1-2 mm with no ulceration.  You can also read the Stage II details too and compare to your pathology report.

         

        I know Johns Hopkins is good too, but I don't think it is any better than Penn and not worth the extra distance (I say this having a family member treated at JH for melanoma, and me being treated at Penn.  Although I am stage iA, so my treatment is essentially good derm visits, nothing more at this point, which I hope you will be at soon!)

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        Joan C
        Participant

        Well, again I am no expert on staging.  But here is a link to a PDF.  Scroll down to staging, and you see that stage 1B is for 1-2 mm with no ulceration.  You can also read the Stage II details too and compare to your pathology report.

         

        I know Johns Hopkins is good too, but I don't think it is any better than Penn and not worth the extra distance (I say this having a family member treated at JH for melanoma, and me being treated at Penn.  Although I am stage iA, so my treatment is essentially good derm visits, nothing more at this point, which I hope you will be at soon!)

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        Janner
        Participant

        Maybe the doctor was a little confused… at 2.00mm you would be stage II.  As it stands now, you are stage IB given the information you've shared here.

        At this time, you are just worried about the WLE (wide local excision) and SNB (sentinel lymph node biopsy).  Until both of those are completed, you are in limbo.  If the SNB comes back negative, then you will essentially be followed by a derm and your skin monitored.  If the melanoma has spread to a lymph node, then it's a different beast.  Until you know those results, you really can't make any plans.  You're basically on the borderline for the SNB – typically 1mm is the cutoff unless there are higher risk factors.  So…your lesion could still be considered low risk at this point.

        Cancer Treatment Center of America.  At this point, I wouldn't go there.  In general, they really don't offer anything different for advanced melanoma patients (at least that's what has been reported here) – and I can't see any reason they'd do anything different for an early stage individual.   I'd pick Penn over any of those you listed.  They have a very good melanoma department there – lots of research and trials.   You can send your path slides for a second opinion if you feel it is necessary.  I'd also make sure your surgeon has done plenty of SNB's.  Other than that, a second opinion really isn't necessary until you know the results of the SNB.  If you have a positive lymph node, then you can look at adjuvant therapies, etc.  If your lymph nodes are negative, there really are no treatment options for stage IB.  One doctor really can't offer you more than another in terms of treatment for stage IB.

        Best wishes,

        Janner

        Stage IB since 1992, 3 MM primaries

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        Janner
        Participant

        Maybe the doctor was a little confused… at 2.00mm you would be stage II.  As it stands now, you are stage IB given the information you've shared here.

        At this time, you are just worried about the WLE (wide local excision) and SNB (sentinel lymph node biopsy).  Until both of those are completed, you are in limbo.  If the SNB comes back negative, then you will essentially be followed by a derm and your skin monitored.  If the melanoma has spread to a lymph node, then it's a different beast.  Until you know those results, you really can't make any plans.  You're basically on the borderline for the SNB – typically 1mm is the cutoff unless there are higher risk factors.  So…your lesion could still be considered low risk at this point.

        Cancer Treatment Center of America.  At this point, I wouldn't go there.  In general, they really don't offer anything different for advanced melanoma patients (at least that's what has been reported here) – and I can't see any reason they'd do anything different for an early stage individual.   I'd pick Penn over any of those you listed.  They have a very good melanoma department there – lots of research and trials.   You can send your path slides for a second opinion if you feel it is necessary.  I'd also make sure your surgeon has done plenty of SNB's.  Other than that, a second opinion really isn't necessary until you know the results of the SNB.  If you have a positive lymph node, then you can look at adjuvant therapies, etc.  If your lymph nodes are negative, there really are no treatment options for stage IB.  One doctor really can't offer you more than another in terms of treatment for stage IB.

        Best wishes,

        Janner

        Stage IB since 1992, 3 MM primaries

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        kbc123
        Participant

        Thank you, Janner for the helpful words.  I did hear that from the Cancer Center I am going to right now, that the Cancer Treatment Center in Phili gets there information from the Institute.  I was told that people come to this hospital for SNB – I am sure that makes a difference.  When all is done, I will take it from there.  I am praying for a clean bill of health and then I get on with my three month check ups.  I feel kind of silly taking this so hard when there are so many people on here dealing with more difficult stages.  I was truly hit in the face with this.  Its just a mole that came out of no where.  No other things going on. Just a mole. And life changes as we know it…..

         

        Thanks a bunch – I will be on here looking for moral support and I appreciate all that you can give !

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        kbc123
        Participant

        Thank you, Janner for the helpful words.  I did hear that from the Cancer Center I am going to right now, that the Cancer Treatment Center in Phili gets there information from the Institute.  I was told that people come to this hospital for SNB – I am sure that makes a difference.  When all is done, I will take it from there.  I am praying for a clean bill of health and then I get on with my three month check ups.  I feel kind of silly taking this so hard when there are so many people on here dealing with more difficult stages.  I was truly hit in the face with this.  Its just a mole that came out of no where.  No other things going on. Just a mole. And life changes as we know it…..

         

        Thanks a bunch – I will be on here looking for moral support and I appreciate all that you can give !

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      triciad
      Participant

      Hi Kathy,

      I'm sorry to welcome you hear to this board, but the people here are wonderful, helpful,  and full of information.  I live in NJ, too…Bergen County…diagnosed stage 3B in July 09.  Two other great places with experts in Melanoma are Sloan Kettering in NY (Dr. Jed Wolchok) and NYU (Dr. Anna Pavlik.)  After reading your posts, and if you are stage 2, most likely you will have the wide excision, along with a sentinel node biopsy.  If the SNB is clear, I think you will be done.  There really aren't any treatments for stage 2.  Board members, please correct me if I'm wrong…an expert I am not!

      Good luck to you, and please let us know how everything turns out.  Again, people here are going through similar journeys and want to help.

      Tricia

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      triciad
      Participant

      Hi Kathy,

      I'm sorry to welcome you hear to this board, but the people here are wonderful, helpful,  and full of information.  I live in NJ, too…Bergen County…diagnosed stage 3B in July 09.  Two other great places with experts in Melanoma are Sloan Kettering in NY (Dr. Jed Wolchok) and NYU (Dr. Anna Pavlik.)  After reading your posts, and if you are stage 2, most likely you will have the wide excision, along with a sentinel node biopsy.  If the SNB is clear, I think you will be done.  There really aren't any treatments for stage 2.  Board members, please correct me if I'm wrong…an expert I am not!

      Good luck to you, and please let us know how everything turns out.  Again, people here are going through similar journeys and want to help.

      Tricia

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        kbc123
        Participant

        Thank you Tricia in Bergen County –

        I am in Middlesex County, and Sloan was another one of my options for a second opinion.  CINJ in New Brunswick is where you go around here – if you have an issue .  I wouldn't dare go to an individual oncologist, not that it is a bad thing for some people, i just have a bad taste in my mouth from when my mother was terminal with breast cancer.  It doesnt seem like they know as much as the Cancer Centers. 

        Im praying for clear SNB and check ups galore.  Im good with that, just want my life back.  I appreciate your comments and your help right now. 

         

        Kathy

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        kbc123
        Participant

        Thank you Tricia in Bergen County –

        I am in Middlesex County, and Sloan was another one of my options for a second opinion.  CINJ in New Brunswick is where you go around here – if you have an issue .  I wouldn't dare go to an individual oncologist, not that it is a bad thing for some people, i just have a bad taste in my mouth from when my mother was terminal with breast cancer.  It doesnt seem like they know as much as the Cancer Centers. 

        Im praying for clear SNB and check ups galore.  Im good with that, just want my life back.  I appreciate your comments and your help right now. 

         

        Kathy

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      Kim K
      Participant

      Sorry you had to join us but I remember exactly where you are when I went through it.  I promise it DOES get better with time and the "Brain chatter" will diminish.  I put many miles on my eliptical machine to help.  Eventually you get so tired you fall asleep and get in great shape!  What you are experiencing is NORMAL.

      Search the archives for SNB experiences.  I will warn you that the Tc-99 hurts like a mother!  It is like a venoumous wasp sting combined with holding your hand on a hot stove.  It only lasts for a short time though.  Your plan of care is fine.  The waiting for results is nerve racking.  Try to stay busy, or with friends.  If it helps then research the topic, if it makes things worse then don't, we are all different.

      I am the research type.  It gave me some sense of control over something that isn't controllable.  Also remember there are many that were in the same boat as you but don't post because they have moved on with their lives.  This community has a high percentage of patients who had relapses or progression, and are of advanced stages.  By their posts you can see how amazingly we adapt our outlook and cope.  Now as a stage IV patient 8 years after my initial diagnosis, I can say mel isn't trying to kill me today, I have no symptoms (and am NED!!!) so life is good.  Others are doing great and say, hey, I have stable disease and am doing well, and that is good enough.

      I know when I had one remaining tumor in my chest wall, I was fine with it because it wasn't growing, was small, I had no symptoms, and heck, who cares if it is in my chest muscle, it's not like its in my brain or anything – sheesh, what's the big deal?!  (OK so an exaggeration, but still, I was no longer panicked).

      You can look at my profile if you like.

      Kim K stage 2A 7/02, IV 7/09 now NED 7/10, after VATS lung surgery and IL-2.

      (I also am a single mom of two wonderful girls aged 2 and 5.  I told my docs I am not a statistic as documented by my history, and that I needed another 20 years at least.  They did the eye roll thing as if I was nuts.  Well, I am still here kickin' mel's A$$.)

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      Kim K
      Participant

      Sorry you had to join us but I remember exactly where you are when I went through it.  I promise it DOES get better with time and the "Brain chatter" will diminish.  I put many miles on my eliptical machine to help.  Eventually you get so tired you fall asleep and get in great shape!  What you are experiencing is NORMAL.

      Search the archives for SNB experiences.  I will warn you that the Tc-99 hurts like a mother!  It is like a venoumous wasp sting combined with holding your hand on a hot stove.  It only lasts for a short time though.  Your plan of care is fine.  The waiting for results is nerve racking.  Try to stay busy, or with friends.  If it helps then research the topic, if it makes things worse then don't, we are all different.

      I am the research type.  It gave me some sense of control over something that isn't controllable.  Also remember there are many that were in the same boat as you but don't post because they have moved on with their lives.  This community has a high percentage of patients who had relapses or progression, and are of advanced stages.  By their posts you can see how amazingly we adapt our outlook and cope.  Now as a stage IV patient 8 years after my initial diagnosis, I can say mel isn't trying to kill me today, I have no symptoms (and am NED!!!) so life is good.  Others are doing great and say, hey, I have stable disease and am doing well, and that is good enough.

      I know when I had one remaining tumor in my chest wall, I was fine with it because it wasn't growing, was small, I had no symptoms, and heck, who cares if it is in my chest muscle, it's not like its in my brain or anything – sheesh, what's the big deal?!  (OK so an exaggeration, but still, I was no longer panicked).

      You can look at my profile if you like.

      Kim K stage 2A 7/02, IV 7/09 now NED 7/10, after VATS lung surgery and IL-2.

      (I also am a single mom of two wonderful girls aged 2 and 5.  I told my docs I am not a statistic as documented by my history, and that I needed another 20 years at least.  They did the eye roll thing as if I was nuts.  Well, I am still here kickin' mel's A$$.)

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        kbc123
        Participant

        Kim –

        You have such a great attitude.  God love ya! Brain chatter ! That is it! That is what is happening with me.  Thank you for the words of confidence – IT WILL go away.  That is what I want to hear.  Now maybe I should get on the eliptical. 

        I did hear that the SNB hurts like a bitch.  I am panicing about that but what the hell options do you have?  It is what it is.  I need it, have to have it, so be it. 

        you are a single mother.  of little kids.  Wow.  I applaude you.  Really.  I am 41. Going to be 42 soon. Real soon.  I have a 20yr 13yr and 12 yr step daughter.  I was remarried five years ago.  I was widowed at 29 – my son 6 yrs old and  pregnanyt with my daughter. So needless to say, my kids know nothing yet, and wont know until I know something positive.  I cant bring myself to telling them.  My two lost their father and now to have a sick Mom?  Cant do it.  Just cant.  We have a great family unit, I am remarried to an absolutely wonderful man who is 1000 percent supportive.  And I am still having a hard time.  I dont know what I would be doing without him right now…..I know what you mean about asking for 20 more years.  Eye roll, NOT.  I believe you and understand totally.  And fabulous you are KICKING ASS.

        Thanks Kim – I appreciate the info…

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        kbc123
        Participant

        Kim –

        You have such a great attitude.  God love ya! Brain chatter ! That is it! That is what is happening with me.  Thank you for the words of confidence – IT WILL go away.  That is what I want to hear.  Now maybe I should get on the eliptical. 

        I did hear that the SNB hurts like a bitch.  I am panicing about that but what the hell options do you have?  It is what it is.  I need it, have to have it, so be it. 

        you are a single mother.  of little kids.  Wow.  I applaude you.  Really.  I am 41. Going to be 42 soon. Real soon.  I have a 20yr 13yr and 12 yr step daughter.  I was remarried five years ago.  I was widowed at 29 – my son 6 yrs old and  pregnanyt with my daughter. So needless to say, my kids know nothing yet, and wont know until I know something positive.  I cant bring myself to telling them.  My two lost their father and now to have a sick Mom?  Cant do it.  Just cant.  We have a great family unit, I am remarried to an absolutely wonderful man who is 1000 percent supportive.  And I am still having a hard time.  I dont know what I would be doing without him right now…..I know what you mean about asking for 20 more years.  Eye roll, NOT.  I believe you and understand totally.  And fabulous you are KICKING ASS.

        Thanks Kim – I appreciate the info…

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      Jim in Denver
      Participant

      Hi Kathy,

      Tkae a deep breath, and learn all you can before you make decisions.  I was diagnosed as Stage IV last March, with no prior diagnosis, so I know what it feels like to read all this negative stuff out there. You are not a statistic, so don't pay much attention to those, ok?  Either Stage1a or II puts you in the "curable by surgery" category, with generally good prognosis.  So please stop freaking out and work on coming up with a plan that is based on facts and research.  You can get good information  from both patients and caregivers here, a large proportion who are dealing with Stage III and IV melanoma but have information relevant to your situation as well.

      My own 2 cents is to suggest you find a Melanoma Specialist, and do not rely on any regular Oncologist, Dermatologist, or Surgeon (if possible).  On the East Coast, you should consider Memorial Sloan Kettering (MSK), U Penn, Hopkins, and the National Cancer Institute (NCI), which are the well known melanomal specialists (especially MSK and NCI). I won't offer any info on individual Docs, but there are a number from whihc you could choose.  In my csee, I chose the hospital first (MD Anderson), then the Doc, but that is not the only way to do it.

      You have caught this early enough that your prospects are very good.  Just remember, you are the one in charge, not disease.  Having a plan and taking control will help you feel better about your situation.  Be a patient, and not a victim.

      Best Wishes,

      Jim

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      Jim in Denver
      Participant

      Hi Kathy,

      Tkae a deep breath, and learn all you can before you make decisions.  I was diagnosed as Stage IV last March, with no prior diagnosis, so I know what it feels like to read all this negative stuff out there. You are not a statistic, so don't pay much attention to those, ok?  Either Stage1a or II puts you in the "curable by surgery" category, with generally good prognosis.  So please stop freaking out and work on coming up with a plan that is based on facts and research.  You can get good information  from both patients and caregivers here, a large proportion who are dealing with Stage III and IV melanoma but have information relevant to your situation as well.

      My own 2 cents is to suggest you find a Melanoma Specialist, and do not rely on any regular Oncologist, Dermatologist, or Surgeon (if possible).  On the East Coast, you should consider Memorial Sloan Kettering (MSK), U Penn, Hopkins, and the National Cancer Institute (NCI), which are the well known melanomal specialists (especially MSK and NCI). I won't offer any info on individual Docs, but there are a number from whihc you could choose.  In my csee, I chose the hospital first (MD Anderson), then the Doc, but that is not the only way to do it.

      You have caught this early enough that your prospects are very good.  Just remember, you are the one in charge, not disease.  Having a plan and taking control will help you feel better about your situation.  Be a patient, and not a victim.

      Best Wishes,

      Jim

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        kbc123
        Participant

        Jim –

        Wonderful information. I do want to be in charge and I believe that no derm, surg or reg oncologist should be treating this.  I am a big fan of having specialist in the field.  I need to find out about NCI- I am dealing with the Cancer Institute of New Jersey and very much like them, just want to get another opinion after all is said and done.  How are you doing with stage IV since last year? are you on treatment?  I love to hear all of this info from everyone.  I am mad as hell at this and I dont want to and will not be a victim. Thank you for your input.  Really.

         

        Kathy

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        kbc123
        Participant

        Jim –

        Wonderful information. I do want to be in charge and I believe that no derm, surg or reg oncologist should be treating this.  I am a big fan of having specialist in the field.  I need to find out about NCI- I am dealing with the Cancer Institute of New Jersey and very much like them, just want to get another opinion after all is said and done.  How are you doing with stage IV since last year? are you on treatment?  I love to hear all of this info from everyone.  I am mad as hell at this and I dont want to and will not be a victim. Thank you for your input.  Really.

         

        Kathy

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        Jim in Denver
        Participant

        Hi Kathy,

        Keep that fighting spirit – always.  I don't know anything about the Cancer Institute of New Jersey, but I have always thought that competence and expertise is most important in medical treatment .  I liked my locals initially, but they were not able to offer treatments that would help me, so I decided to find a place where I had more and better options.  I am confident that I have a team of specialsts who are among the absolute best on the planet.  I have been enrolled in a clincal trial since last August that combines Ipilimumab, which is a promising treatment for metastic melanoma very near FDA approval, and Temodar, which has shown some effectiveness against melanoma.  The treatment has stabilized my disease (lung mets, unknown primary), so I am cautiously optimistic about my prognosis.

        Please keep us posted and best wishes to you.

        Best,

        Jim

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        Jim in Denver
        Participant

        Hi Kathy,

        Keep that fighting spirit – always.  I don't know anything about the Cancer Institute of New Jersey, but I have always thought that competence and expertise is most important in medical treatment .  I liked my locals initially, but they were not able to offer treatments that would help me, so I decided to find a place where I had more and better options.  I am confident that I have a team of specialsts who are among the absolute best on the planet.  I have been enrolled in a clincal trial since last August that combines Ipilimumab, which is a promising treatment for metastic melanoma very near FDA approval, and Temodar, which has shown some effectiveness against melanoma.  The treatment has stabilized my disease (lung mets, unknown primary), so I am cautiously optimistic about my prognosis.

        Please keep us posted and best wishes to you.

        Best,

        Jim

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      BethA in VA
      Participant

      I am confident that all these posts are giving good advice.  This is a great, supportive group of people.  I'm just sending you my positive thoughts and adding some prayers.  You will be fine Kathy.  Stay strong and keep us informed.   Beth 3/B

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        davekarrie
        Participant

        Hi Kathy,

        This is Dave and I am also relatively new to the club. I was diagnosed back in November and my DR. said I was a stage IV, he meant Clarks Level IV.  I am fairly certain that given your path report you are at a Stage Ib and a clarks Level II, or level of invasion. Since you have no ulceration that is very good, a mitotic rate of 1 is low. my mitotic rate was 4 and it made it to 1 lymph node so I am a stage IIIa. 2 surgeries later I continue to recover and have chosen the watch and wait approach.  I hate it when Dr.s confuse stage with clarks level, this should be basic training they get with melanoma increasing so much, ugh.

        I have done tons of reading on this stuff as well, stay positive and you will beat this! Best of luck!

        Dave

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        davekarrie
        Participant

        Hi Kathy,

        This is Dave and I am also relatively new to the club. I was diagnosed back in November and my DR. said I was a stage IV, he meant Clarks Level IV.  I am fairly certain that given your path report you are at a Stage Ib and a clarks Level II, or level of invasion. Since you have no ulceration that is very good, a mitotic rate of 1 is low. my mitotic rate was 4 and it made it to 1 lymph node so I am a stage IIIa. 2 surgeries later I continue to recover and have chosen the watch and wait approach.  I hate it when Dr.s confuse stage with clarks level, this should be basic training they get with melanoma increasing so much, ugh.

        I have done tons of reading on this stuff as well, stay positive and you will beat this! Best of luck!

        Dave

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        davekarrie
        Participant

        Hi Kathy,

        This is Dave and I am also relatively new to the club. I was diagnosed back in November and my DR. said I was a stage IV, he meant Clarks Level IV.  I am fairly certain that given your path report you are at a Stage Ib and a clarks Level II, or level of invasion. Since you have no ulceration that is very good, a mitotic rate of 1 is low. my mitotic rate was 4 and it made it to 1 lymph node so I am a stage IIIa. 2 surgeries later I continue to recover and have chosen the watch and wait approach.  I hate it when Dr.s confuse stage with clarks level, this should be basic training they get with melanoma increasing so much, ugh.

        I have done tons of reading on this stuff as well, stay positive and you will beat this! Best of luck!

        Dave

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        davekarrie
        Participant

        Hi Kathy,

        This is Dave and I am also relatively new to the club. I was diagnosed back in November and my DR. said I was a stage IV, he meant Clarks Level IV.  I am fairly certain that given your path report you are at a Stage Ib and a clarks Level II, or level of invasion. Since you have no ulceration that is very good, a mitotic rate of 1 is low. my mitotic rate was 4 and it made it to 1 lymph node so I am a stage IIIa. 2 surgeries later I continue to recover and have chosen the watch and wait approach.  I hate it when Dr.s confuse stage with clarks level, this should be basic training they get with melanoma increasing so much, ugh.

        I have done tons of reading on this stuff as well, stay positive and you will beat this! Best of luck!

        Dave

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      BethA in VA
      Participant

      I am confident that all these posts are giving good advice.  This is a great, supportive group of people.  I'm just sending you my positive thoughts and adding some prayers.  You will be fine Kathy.  Stay strong and keep us informed.   Beth 3/B

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      MRFUser2011
      Participant

      Hi Kathy,

      I just joined the board today.  I can remember the day I got my melanoma diagnosis like it was yesterday (it was 4/08).  It was a scary feeling and I have to say, finding out today that I am probably Stage IV now was actually LESS scary than just finding out I had melanoma.  I think it is such an unexpected diagnosis that is just smacks you in the face!  And it is not something we hear about on the news or in magazines or from people we know nearly as much as some other cancers.  

      I agree with what others have posted regarding waiting until post-op to start researching (hell, I waited nearly two YEARS post-op to start, that is why I am here now!)  It is hard to get it out of your mind – for me, reading books on healing helped and so did watching comedies. I still make an effort to laugh for awhile every day, no matter what.  I have laughed a lot today, despite "bad" news.  I like what someone else posted to you – plan to live and then follow the plan!

      Hope you are sleeping soundly by now!
      Shari

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      MRFUser2011
      Participant

      Hi Kathy,

      I just joined the board today.  I can remember the day I got my melanoma diagnosis like it was yesterday (it was 4/08).  It was a scary feeling and I have to say, finding out today that I am probably Stage IV now was actually LESS scary than just finding out I had melanoma.  I think it is such an unexpected diagnosis that is just smacks you in the face!  And it is not something we hear about on the news or in magazines or from people we know nearly as much as some other cancers.  

      I agree with what others have posted regarding waiting until post-op to start researching (hell, I waited nearly two YEARS post-op to start, that is why I am here now!)  It is hard to get it out of your mind – for me, reading books on healing helped and so did watching comedies. I still make an effort to laugh for awhile every day, no matter what.  I have laughed a lot today, despite "bad" news.  I like what someone else posted to you – plan to live and then follow the plan!

      Hope you are sleeping soundly by now!
      Shari

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      HI Kathy,

      As you can see, you are never alone here on this board.  Lots of people watching out for each other. 

      Those first few days are really scary especially when the internet is right there at our finger tips.  I know it scared the —- out of me.  You are getting your diagnosis at a time of huge change for melanoma so all of those stats (I believe)will soon to be blown out of the water.  Even I feel that with every month I stay stable, science is on it's way to major breakthroughs.  I am one of the fortunate ones to have made it into the Roche B-raf trail and there are more on the way. 

      You caught yours early.  Take a deep breath and breathe.  Breathe again… and again.  Get yourself some mantras to repeat to yourself, to help calm yourself. Repeat it all the time until it calms you.  and BREATHE.

       Mine is "There is no place that God is not."  This always reminded me that no matter what I am feeling, God is with me and ALL will be OK.   

      I will hold you in prayers.

      Peace and light,

      Shelly

       

       

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      HI Kathy,

      As you can see, you are never alone here on this board.  Lots of people watching out for each other. 

      Those first few days are really scary especially when the internet is right there at our finger tips.  I know it scared the —- out of me.  You are getting your diagnosis at a time of huge change for melanoma so all of those stats (I believe)will soon to be blown out of the water.  Even I feel that with every month I stay stable, science is on it's way to major breakthroughs.  I am one of the fortunate ones to have made it into the Roche B-raf trail and there are more on the way. 

      You caught yours early.  Take a deep breath and breathe.  Breathe again… and again.  Get yourself some mantras to repeat to yourself, to help calm yourself. Repeat it all the time until it calms you.  and BREATHE.

       Mine is "There is no place that God is not."  This always reminded me that no matter what I am feeling, God is with me and ALL will be OK.   

      I will hold you in prayers.

      Peace and light,

      Shelly

       

       

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        Vermont_Donna
        Participant

        Dear Kathy,

           Very sorry to hear of your diagnosis, but you have come to the right place for information/education, to hear of everyone's personal struggles and treatment paths chosen, and for support. You will learn a whole new language dealing with this cancer (melanoma equals "the BEAST"), WLE, SNB, ELND or LND, etc and then all the names for the treatments, interferon, leukine, ipilimumab, etc and so many more. People are right…dont read more into your diagnosis as you research…wait til you have the definitive results, research your treatment options (ie talk with your melanoma oncologist, and look here at MPIP to see what else there could be, look at treatment facilities) but above all……whatever PLAN you go with, have NO REGRETS! We all are faced with choices as we have gone along our melanoma journey and we decide what fits US, our lives, our beliefs, our caregivers, our families, our jobs, etc. Stay positive and diligent….get to KNOW your body,……your melanoma was on your back…..you need to check monthly (maybe weekly at first for peace of mind or whatever the docs recommend)…get a full length mirror and LOOK at your body, look for CHANGES…..have your significant other check on a regular basis…I have "found" every single one of my melanomas (now totaling about 50 tumors) on my right leg, some appeared as moles, some blue smudges, some sub q's…just note and have checked anything that changes. And LIVE each day to your fullest and best possible…thats all we really have right?? The day ahead of us to live as best we can. 

        Best of luck,

        Vermont_Donna

        stage 3a, currently doing an Ipilimumab trial

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        Vermont_Donna
        Participant

        Dear Kathy,

           Very sorry to hear of your diagnosis, but you have come to the right place for information/education, to hear of everyone's personal struggles and treatment paths chosen, and for support. You will learn a whole new language dealing with this cancer (melanoma equals "the BEAST"), WLE, SNB, ELND or LND, etc and then all the names for the treatments, interferon, leukine, ipilimumab, etc and so many more. People are right…dont read more into your diagnosis as you research…wait til you have the definitive results, research your treatment options (ie talk with your melanoma oncologist, and look here at MPIP to see what else there could be, look at treatment facilities) but above all……whatever PLAN you go with, have NO REGRETS! We all are faced with choices as we have gone along our melanoma journey and we decide what fits US, our lives, our beliefs, our caregivers, our families, our jobs, etc. Stay positive and diligent….get to KNOW your body,……your melanoma was on your back…..you need to check monthly (maybe weekly at first for peace of mind or whatever the docs recommend)…get a full length mirror and LOOK at your body, look for CHANGES…..have your significant other check on a regular basis…I have "found" every single one of my melanomas (now totaling about 50 tumors) on my right leg, some appeared as moles, some blue smudges, some sub q's…just note and have checked anything that changes. And LIVE each day to your fullest and best possible…thats all we really have right?? The day ahead of us to live as best we can. 

        Best of luck,

        Vermont_Donna

        stage 3a, currently doing an Ipilimumab trial

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      kbc123
      Participant

      Well I made it through the next step !  Had Lymphscintigraphy today.  IT HURT LIKE A S.O.B!   Needless to say, I am happy that its over.  I had my preadmissions and am scheduled for two weeks from now for lymph node biopsy and excision on my back.  I feel like I am half way there and I am sleeping now..Still very fearful, but very positive. 

      Thanks to all for your input. I will keep you updated !

       

      Kathy

      Stage who knows yet !

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      kbc123
      Participant

      Well I made it through the next step !  Had Lymphscintigraphy today.  IT HURT LIKE A S.O.B!   Needless to say, I am happy that its over.  I had my preadmissions and am scheduled for two weeks from now for lymph node biopsy and excision on my back.  I feel like I am half way there and I am sleeping now..Still very fearful, but very positive. 

      Thanks to all for your input. I will keep you updated !

       

      Kathy

      Stage who knows yet !

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About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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