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  • Post
    Ericka
    Participant

    Hi Everyone,

    Hi Everyone,

    I am new to the board.  My husband was just diagnosed with Stage IV about a week ago.  He is young (35) so this comes as a huge shock, which I'm sure it is a shock no matter what age.  We were told by the dermatologist and have not seen an oncologist yet.  That appointment is in 2 days.  Basically we were not given much information, and were told to research online.  So far I have not seen much good from what I have read.  We are kind of in the dark and do not know what to expect.  I'm really scared and not sure how to react.  I don't know what to say, what questions to ask, or what to do from here.  I guess I need some advice or encouraging words if anyone has them to give. 

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  • Replies
      Janner
      Participant

      First off, what makes him stage IV?  Are you SURE?  Stage IV means there is spread to the organs.  CLARK'S LEVEL IV means the lesion has penetrated the dermis.  The two terms are often confused in the newly diagnosed, but they ARE NOT THE SAME.  I'd guess that if you have not seen an oncologist yet and have not had any scans done, this is a Clark's Level IV lesion.  This could still be STAGE I.  PLEASE do not research stage IV until you know for sure that is where your husband is!

      When you see the oncologist, s/he should be able to sort this out better.  Ask for a copy of your pathology report.  This gives important information.  Breslow depth or the depth of the lesion is the most important prognostic indicator.  (Keep copies of all reports for your own records).

      Until we have more information, we can only speculate.  But I'm still wondering if this is, in fact, Clark's Level IV.  BTW, I was originally diagnosed with stage I at age 29.  Still here 18 years later, still stage I.

      Best wishes,

      Janner

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      Janner
      Participant

      First off, what makes him stage IV?  Are you SURE?  Stage IV means there is spread to the organs.  CLARK'S LEVEL IV means the lesion has penetrated the dermis.  The two terms are often confused in the newly diagnosed, but they ARE NOT THE SAME.  I'd guess that if you have not seen an oncologist yet and have not had any scans done, this is a Clark's Level IV lesion.  This could still be STAGE I.  PLEASE do not research stage IV until you know for sure that is where your husband is!

      When you see the oncologist, s/he should be able to sort this out better.  Ask for a copy of your pathology report.  This gives important information.  Breslow depth or the depth of the lesion is the most important prognostic indicator.  (Keep copies of all reports for your own records).

      Until we have more information, we can only speculate.  But I'm still wondering if this is, in fact, Clark's Level IV.  BTW, I was originally diagnosed with stage I at age 29.  Still here 18 years later, still stage I.

      Best wishes,

      Janner

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        Ericka
        Participant

        Thanks for the reply.  The pathology report does say he is a Clarks level IV but the Breslow depth is 10.8 mm.  I'm not sure all the terminology yet.  My grandfather passed away from Melanoma 4 years ago but I didn't get involved in the medical part of his disease.  The dermatologist did say stage IV, but we will be going to the surgical oncologist tomorrow.  Hopefully they just told us wrong, it was a pretty nasty looking tumor though.  It had grown from an irregular mole to an ulcerated blob.  Here's hoping, I will keep my posts updated.

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        Ericka
        Participant

        Thanks for the reply.  The pathology report does say he is a Clarks level IV but the Breslow depth is 10.8 mm.  I'm not sure all the terminology yet.  My grandfather passed away from Melanoma 4 years ago but I didn't get involved in the medical part of his disease.  The dermatologist did say stage IV, but we will be going to the surgical oncologist tomorrow.  Hopefully they just told us wrong, it was a pretty nasty looking tumor though.  It had grown from an irregular mole to an ulcerated blob.  Here's hoping, I will keep my posts updated.

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        Carver
        Participant

        Hi Ericka,

        I wanted to tell you that until they run further tests and see whether there is any metastatic disease you won't be able to be fully staged. I also had a deep primary. Mine was 6.9 mm breslow and I also had another 2.8 mm of additional melanoma removed during the wide excision (my initial biopsy didn't get it all). I had the sentinel node biopsy and only had one node with micromets of melanoma. I then had the groin node dissection with another 10 or 12 nodes removed none of which had melanoma. That was March of 2005 and I haven't had any recurrences thus far, knock wood. It is scary with a deep primary and my doctors thought it looked pretty bad at first but I had a full body PET/CT scan and there wasn't any spread to organs. Just wanted you to know that there is a chance your primary hasn't spread in which case I think you'd be IIC. Best of luck, Carver

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        Carver
        Participant

        Hi Ericka,

        I wanted to tell you that until they run further tests and see whether there is any metastatic disease you won't be able to be fully staged. I also had a deep primary. Mine was 6.9 mm breslow and I also had another 2.8 mm of additional melanoma removed during the wide excision (my initial biopsy didn't get it all). I had the sentinel node biopsy and only had one node with micromets of melanoma. I then had the groin node dissection with another 10 or 12 nodes removed none of which had melanoma. That was March of 2005 and I haven't had any recurrences thus far, knock wood. It is scary with a deep primary and my doctors thought it looked pretty bad at first but I had a full body PET/CT scan and there wasn't any spread to organs. Just wanted you to know that there is a chance your primary hasn't spread in which case I think you'd be IIC. Best of luck, Carver

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      jolainajo
      Participant

      Hello, I too am too young, I am 37 and fight with the thought of my age and this monster all the time. Just like I am tonight. I was diagnosed almost 1 yr ago with stage 4 also, and felt very helpless and alone. There was not much out there for support, and I have pretty much had to find my own way through the maze of finding treatment in the eyes of Doctors who pretty much say there is nothing they can do but clinical trials. I went through the IL-2, went to Maryland in Late may and june, went through chemo and til clinical trial, only to be told that it had spread to my brain, and had radiation almost 2 mths now. I am doing the Ipi trial now and have high hopes, but, the thing that keeps me going is my Kids, my husband, and my friends and family. DONT give up! Life seems to be moving quickly for those of us with this cancer, and we cannot look to the future, but to tomorrow. Only grasp what you can today, and thank god for today everyday. I have my moments of crying, and breaking down. But, I try to keep busy and not think about the what if's to much, and just keep trying the new trials. I know that you feel like your world is crumbling around you at this moment, as I did a yr ago. But,,, know,,, that your husband needs your support and strengh, tell him daily as much as you can how much he means to you, and treasure every moment, even the ones when he is angry and upset and everything, because that happens too, but just be patient with him, you both will grow closer. If you need support or just need answers to your many questions please feel free to email me. [email protected]. I know how hard this is right now for you both, I know…. BUT,,, stay strong.

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      jolainajo
      Participant

      Hello, I too am too young, I am 37 and fight with the thought of my age and this monster all the time. Just like I am tonight. I was diagnosed almost 1 yr ago with stage 4 also, and felt very helpless and alone. There was not much out there for support, and I have pretty much had to find my own way through the maze of finding treatment in the eyes of Doctors who pretty much say there is nothing they can do but clinical trials. I went through the IL-2, went to Maryland in Late may and june, went through chemo and til clinical trial, only to be told that it had spread to my brain, and had radiation almost 2 mths now. I am doing the Ipi trial now and have high hopes, but, the thing that keeps me going is my Kids, my husband, and my friends and family. DONT give up! Life seems to be moving quickly for those of us with this cancer, and we cannot look to the future, but to tomorrow. Only grasp what you can today, and thank god for today everyday. I have my moments of crying, and breaking down. But, I try to keep busy and not think about the what if's to much, and just keep trying the new trials. I know that you feel like your world is crumbling around you at this moment, as I did a yr ago. But,,, know,,, that your husband needs your support and strengh, tell him daily as much as you can how much he means to you, and treasure every moment, even the ones when he is angry and upset and everything, because that happens too, but just be patient with him, you both will grow closer. If you need support or just need answers to your many questions please feel free to email me. [email protected]. I know how hard this is right now for you both, I know…. BUT,,, stay strong.

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      Jim in Denver
      Participant

      Hi Erica,

      I think Janner has a very good point about whether your husband is Stage IV.  As one who was diagnosed as Stage IV last March, I can speak to your anxiety and fear.  Many dernatologists do not really understand melanoma as well as they should.  Advising you to go do your own research is actually not a bad thing, but I am sure you have Googled up a bunch of information that is not very encouraging (to put it mildly), just like I did. 

      The good news is that you have found  a group here that has an great amount of collective knowledge and experience who can help you learn more. I can also tell you that the statistics you have seen only look backward, not forward.  There are very promising treatments being developed righ now for melanoma, some are close to being FDA approved, that will greatly change those statistics going forward.  There is real progress in treating melanoma that offers hope for Stage IV patients, like myself, and your husband if he is in fact Stage IV.

      Your husband is not a number, either, so please don't get caught up in that game.  Find the best Oncologist available – preferably one who is a Melanoma Specialist.  If what you are being told does not seem right, or is not making sense to you, get a second opinion.  Work on developing a plan to move forward, medical but also deling with a range of personal considerations, and be a strong advocate for your husband.  It is not unusual to go though the stages shock, denial, and depression beffore coming out that with an attutude that you will do what it takes to fight this and support each other in the journey. 

      Best Wishes,

      Jim

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      Jim in Denver
      Participant

      Hi Erica,

      I think Janner has a very good point about whether your husband is Stage IV.  As one who was diagnosed as Stage IV last March, I can speak to your anxiety and fear.  Many dernatologists do not really understand melanoma as well as they should.  Advising you to go do your own research is actually not a bad thing, but I am sure you have Googled up a bunch of information that is not very encouraging (to put it mildly), just like I did. 

      The good news is that you have found  a group here that has an great amount of collective knowledge and experience who can help you learn more. I can also tell you that the statistics you have seen only look backward, not forward.  There are very promising treatments being developed righ now for melanoma, some are close to being FDA approved, that will greatly change those statistics going forward.  There is real progress in treating melanoma that offers hope for Stage IV patients, like myself, and your husband if he is in fact Stage IV.

      Your husband is not a number, either, so please don't get caught up in that game.  Find the best Oncologist available – preferably one who is a Melanoma Specialist.  If what you are being told does not seem right, or is not making sense to you, get a second opinion.  Work on developing a plan to move forward, medical but also deling with a range of personal considerations, and be a strong advocate for your husband.  It is not unusual to go though the stages shock, denial, and depression beffore coming out that with an attutude that you will do what it takes to fight this and support each other in the journey. 

      Best Wishes,

      Jim

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      lhaley
      Participant

      Welcome to the board, a place no one wants to be. We have learned how to help each other and will guide you as much as possible.  You now have one more day of waiting to get some of your information, but expect more waiting to occur. A few questions: Has your husband had any tests done yet?  I'm talking about either CT scans or PET scans. If the answer is no, then he hasn't been staged yet – you can take a deep breathe then.  I would really think as Janner said that the derm gave you the Clark's level. 

      I am stage IV and do not have mel in a life threatenng organ, but I do have it widely spread in the body. It's appeared in the breast, bladder, arm and now under the collarbone. However, I am also NED – no evidence of disease!! Over the years mine has been surgically resected.

      You have been referred to a surgical oncologist. That means they are planning a wide excision. That's when the Dr. takes a margin around the original insision site to try and make sure they get the loose cells before they go further – you want clean margins!  The scar will be nasty but I promise, life goes on and scars will fade.  If your primary mole was thick enough they may also do a PET/CT or a SNB (sentinal node biopsy) to see if it has traveled to the node system.  A SNB must be done at the same time as the wide excision!! Usually suggested if the primary was ulcerated a thickness of .75 or greater. In not ulcerated 1mm. 

      I saw you live in Ky. If they discover that your husband is beyond stage I make sure that the oncologist there is a melanoma specialist, not just someone who is one for their institution deemed that because he has the melanoma patients.  Not sure how far you live from either Charlotte or Pittsburg but both of those areas have melanoma oncologists.  I hope that you don't need one but these are things to consider!  I have a local oncologist and a melanoma specialist. Sometimes it's not feasable to run with every little thing when you have to travel. They work well together,

      My first primary was a Clark's level 4 in 1979. I then had several more primaries including a Clark level 5. Now they usually use terms such as Breslow thickness and the miotic rate.  My point is I'm still here, my disease has progressed but at this moment in time I'm doing great!

      One step at a time. Just gather your information. Always request a hard copy of scan reports, blood work reports and a cd of your scans. That way when you have a question in the future your answers are there. Also, if you change Doctors you have all of the info they will request.  Also expect each hospital you go to will re-read the original slide.

      Best wishes,

      Linda

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      lhaley
      Participant

      Welcome to the board, a place no one wants to be. We have learned how to help each other and will guide you as much as possible.  You now have one more day of waiting to get some of your information, but expect more waiting to occur. A few questions: Has your husband had any tests done yet?  I'm talking about either CT scans or PET scans. If the answer is no, then he hasn't been staged yet – you can take a deep breathe then.  I would really think as Janner said that the derm gave you the Clark's level. 

      I am stage IV and do not have mel in a life threatenng organ, but I do have it widely spread in the body. It's appeared in the breast, bladder, arm and now under the collarbone. However, I am also NED – no evidence of disease!! Over the years mine has been surgically resected.

      You have been referred to a surgical oncologist. That means they are planning a wide excision. That's when the Dr. takes a margin around the original insision site to try and make sure they get the loose cells before they go further – you want clean margins!  The scar will be nasty but I promise, life goes on and scars will fade.  If your primary mole was thick enough they may also do a PET/CT or a SNB (sentinal node biopsy) to see if it has traveled to the node system.  A SNB must be done at the same time as the wide excision!! Usually suggested if the primary was ulcerated a thickness of .75 or greater. In not ulcerated 1mm. 

      I saw you live in Ky. If they discover that your husband is beyond stage I make sure that the oncologist there is a melanoma specialist, not just someone who is one for their institution deemed that because he has the melanoma patients.  Not sure how far you live from either Charlotte or Pittsburg but both of those areas have melanoma oncologists.  I hope that you don't need one but these are things to consider!  I have a local oncologist and a melanoma specialist. Sometimes it's not feasable to run with every little thing when you have to travel. They work well together,

      My first primary was a Clark's level 4 in 1979. I then had several more primaries including a Clark level 5. Now they usually use terms such as Breslow thickness and the miotic rate.  My point is I'm still here, my disease has progressed but at this moment in time I'm doing great!

      One step at a time. Just gather your information. Always request a hard copy of scan reports, blood work reports and a cd of your scans. That way when you have a question in the future your answers are there. Also, if you change Doctors you have all of the info they will request.  Also expect each hospital you go to will re-read the original slide.

      Best wishes,

      Linda

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      fliberdy
      Participant

      Hi, I too am new am fairly new to the board and newly diagnosed. Still waiting to get my stage. I have nothing to add to all the wonderful advise you will get from these wise ones but I agree that its unlikely the dermatologist  would give your husband that  stage without more tests.

      Just wanted to send some positive thoughts your way.

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      fliberdy
      Participant

      Hi, I too am new am fairly new to the board and newly diagnosed. Still waiting to get my stage. I have nothing to add to all the wonderful advise you will get from these wise ones but I agree that its unlikely the dermatologist  would give your husband that  stage without more tests.

      Just wanted to send some positive thoughts your way.

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      bluepeople
      Participant

       Hi, I'm am sorry that you have had to come here, but welcome to this board.  It is really a supportive and informative place to be.  My husband was diagnosed stage 2C in August so I understand how you feel finding out that your spouse has cancer.  It really is a kick in the gut and we are still dealing with it.  We have a 1 year old so it makes me especially anxious. 

      As others have said, I don't think a dermatologist can diagnose stage IV so you may be confusing that, but it is still scary, no matter what stage you are.  You will hear many discouraging stories, but also many hopeful, uplifting experiences.  Hopefully once you get a more detailed diagnoses, information from this site can help you to decide on the next step.  Feel free to click on my profile to read my hubbies experience so far, or email me.  I don't have tons of information like other people may have here, but I can understand the feelings you may be having at this time. 

      Good luck

      Akilyn  

      [email protected]

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      bluepeople
      Participant

       Hi, I'm am sorry that you have had to come here, but welcome to this board.  It is really a supportive and informative place to be.  My husband was diagnosed stage 2C in August so I understand how you feel finding out that your spouse has cancer.  It really is a kick in the gut and we are still dealing with it.  We have a 1 year old so it makes me especially anxious. 

      As others have said, I don't think a dermatologist can diagnose stage IV so you may be confusing that, but it is still scary, no matter what stage you are.  You will hear many discouraging stories, but also many hopeful, uplifting experiences.  Hopefully once you get a more detailed diagnoses, information from this site can help you to decide on the next step.  Feel free to click on my profile to read my hubbies experience so far, or email me.  I don't have tons of information like other people may have here, but I can understand the feelings you may be having at this time. 

      Good luck

      Akilyn  

      [email protected]

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      Wendi Lynn
      Participant

      Hi there!

      I'll add my two cents in here about jumping at the sound of a number too.  My dermatologist called me into the office to tell me that I had melanoma.  At that point, I really didn't think anything of it (figured it was a skin cancer and they were all cureable – silly me).  Then she said "I'm sorry, I know this is hard to hear."  Now, I start to get scared.  Then they hand me the pathology report and it say IV on it.  Now I'm hysterical thinking I have stage IV, but it was Clarks LEVEL IV.  It wasn't until I was able to sit down and look up what that meant that I was finally able to calm down a little.  So, as everyone else has suggested, verify that first.  Second, if there is something you don't understand, ask your doctors.  I've come to find they don't always know the answers either, but it's a good start.  Third, always go in with the most information you can.  You are responsible to make sure the doctor is doing everything they can/should.  This board has provided me with tons of great information!  Lastly, take a deep breath and exhale. 

      Feel free to email me if you'd like to chat!

      [email protected]

      Wendi

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      Wendi Lynn
      Participant

      Hi there!

      I'll add my two cents in here about jumping at the sound of a number too.  My dermatologist called me into the office to tell me that I had melanoma.  At that point, I really didn't think anything of it (figured it was a skin cancer and they were all cureable – silly me).  Then she said "I'm sorry, I know this is hard to hear."  Now, I start to get scared.  Then they hand me the pathology report and it say IV on it.  Now I'm hysterical thinking I have stage IV, but it was Clarks LEVEL IV.  It wasn't until I was able to sit down and look up what that meant that I was finally able to calm down a little.  So, as everyone else has suggested, verify that first.  Second, if there is something you don't understand, ask your doctors.  I've come to find they don't always know the answers either, but it's a good start.  Third, always go in with the most information you can.  You are responsible to make sure the doctor is doing everything they can/should.  This board has provided me with tons of great information!  Lastly, take a deep breath and exhale. 

      Feel free to email me if you'd like to chat!

      [email protected]

      Wendi

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      Deron in Ky
      Participant

      Hi Erica. I know what you're going through. I was dix. alittle over two years ago with a deep primary 8.8mm that was ulcerated (2c).I live in cental Ky. and my fam. Dr. inturned at U K  Med Cent. so  I was refered to Dr.Kennedy and Dr.Rienhart at Markey Cancer Center. Both are very good, and I am very pleased with the care I have recieved there. I had no trouble getting apointments and the waitting room time was realy short. Dr. Kennedy is a highly regared surg. onc and is very personable. Good luck . and try to stay positive. Pease keep us posted.

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      Deron in Ky
      Participant

      Hi Erica. I know what you're going through. I was dix. alittle over two years ago with a deep primary 8.8mm that was ulcerated (2c).I live in cental Ky. and my fam. Dr. inturned at U K  Med Cent. so  I was refered to Dr.Kennedy and Dr.Rienhart at Markey Cancer Center. Both are very good, and I am very pleased with the care I have recieved there. I had no trouble getting apointments and the waitting room time was realy short. Dr. Kennedy is a highly regared surg. onc and is very personable. Good luck . and try to stay positive. Pease keep us posted.

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        Ericka
        Participant

        Hi Deron

        Thanks for the post, it's really encouraging that you have seen the Doctors we are going to see tomorrow.  Not really sure what to expect the first time.  Any advice on what to ask or what may happen?  I have a list of questions and thoughts, but I don't really know what happens on the first visit. 

        I will update as soon as we get home from the appointment tomorrow.

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        Ericka
        Participant

        Hi Deron

        Thanks for the post, it's really encouraging that you have seen the Doctors we are going to see tomorrow.  Not really sure what to expect the first time.  Any advice on what to ask or what may happen?  I have a list of questions and thoughts, but I don't really know what happens on the first visit. 

        I will update as soon as we get home from the appointment tomorrow.

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      Deron in Ky
      Participant

      Hi Erica. I know what you're going through. I was dix. alittle over two years ago with a deep primary 8.8mm that was ulcerated (2c).I live in cental Ky. and my fam. Dr. inturned at U K  Med Cent. so  I was refered to Dr.Kennedy and Dr.Rienhart at Markey Cancer Center. Both are very good, and I am very pleased with the care I have recieved there. I had no trouble getting apointments and the waitting room time was realy short. Dr. Kennedy is a highly regared surg. onc and is very personable. Good luck . and try to stay positive. Pease keep us posted.

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      Deron in Ky
      Participant

      Hi Erica. I know what you're going through. I was dix. alittle over two years ago with a deep primary 8.8mm that was ulcerated (2c).I live in cental Ky. and my fam. Dr. inturned at U K  Med Cent. so  I was refered to Dr.Kennedy and Dr.Rienhart at Markey Cancer Center. Both are very good, and I am very pleased with the care I have recieved there. I had no trouble getting apointments and the waitting room time was realy short. Dr. Kennedy is a highly regared surg. onc and is very personable. Good luck . and try to stay positive. Pease keep us posted.

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