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I’m about to become a caregiver

Forums Cutaneous Melanoma Community I’m about to become a caregiver

  • Post
    archer
    Participant

    I admit my human frailties are in this area.  I have never been comfortable doing this but I will learn if it will help my wife.

    Only been married less than a year, her age 55.  She is the bubbliest, strongest female I have ever met.  We exercise daily and eat 90%  healthy.

    The diagnosis this past Thursday has turned our world upside down, (more so it seems for me than her)  She has the best attitude and there isn't any

    pity party going on.

     

    I admit my human frailties are in this area.  I have never been comfortable doing this but I will learn if it will help my wife.

    Only been married less than a year, her age 55.  She is the bubbliest, strongest female I have ever met.  We exercise daily and eat 90%  healthy.

    The diagnosis this past Thursday has turned our world upside down, (more so it seems for me than her)  She has the best attitude and there isn't any

    pity party going on.

     

    I can't understand how she got to this place.  On Jan. 15, 2011, she felt a lump in her armpit.  Went to family doc, he felt it said it didn't feel like cancer

    and thought is was an infection in the lymph.  Medicine for 10 days. Nothing changed.  Then on to a surgeon who immediately ordered an ultrsound

    and then they did a biopsy the same day.  This biopsy was taken to the local lab and then transferred to Mayo Clinic.  After waiting for 3 weeks, Mayo

    told us they couldn't find anything and asked for more tissue.  The surgeon suggested trying to remove the lump which she did.  She said it was the size

    of a golf ball.  She also said it was watery with some solids and no tentacles growing out of it.  That lump was again sent to Mayo Clinic and then we 

    found out it was sent from Mayo to the Massachusetts General Hospital.  So, again after 3 weeks, they tell us that it is a spindle cell that they feel is

    caused by a metastasized melanoma.  She never goes in the sun and there aren't any detected on her skin.  We are really confused and scared.

     

    We are to meet with an oncologist this week and see from there.  I am sure they want to make sure she does not have anymore cancer present in

    her body.  That is what we are hoping for.

    So, I hate that I have to be writing this story but for me, it seems to help to do this… Sort of a therapy.

    One question, I am wondering why it took 3 labs, different pathologists and 6 weeks to come up with this diagnosis.  Does that make sense to anyone?

    Is it a good idea at this stage to ask for a second opinion?

    Thanks for listening.  We are not sure what to do….

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  • Replies
      MichaelFL
      Participant

      Are you certain that this is a melanoma? You may wish to have her slides reviewed by a dermatopathologist, as a second opinion is never a bad idea at this point, to make sure exactly what it is that you both are dealing with.

      Be aware that occasionally, the spindle cells of desmoplastic melanoma can be negative for S100, making distinction from other spindle cell lesions difficult. Desmoplastic melanoma should be distinguished from other spindle cell lesions such as sclerosing melanocytic nevi, nodular fasciitis, atypical fibroxanthoma, dermatofibrosarcoma protruberance and spindle cell squamous carcinoma and scar tissue.

      Unlike immature scar tissue, in desmoplastic melanoma there is neurotropism, epidermal proliferation of melanocytes, and S100 and/ or HMB45 positivity.

      Yes, sometimes melanoma can slip by and there is not a primary location on the skin. Other times it is not caused by direct sun exposure itself, but maybe genetics. Sometimes it takes a pathologist or even dermatopathologist some time to figure out what is going on if no primary melanoma was found.

      If it is spindle cell melanoma, which is also known as desmoplastic melanoma, it is a rare form of melanoma that is locally aggressive and it may arise from a preexisting lesion or without a precursor. These lesions may be pigmented or flesh-colored. This subtype of melanoma is most common in elderly, male patients, but women are at risk as well

      Maybe this sit e will help you as well: http://www.histopathology-india.net/Des.htm

      Also, what else is being considered at this point? Second opinion? SNB-sentinel node biopsy? Scans? Clinical trial?

      Michael

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        archer
        Participant

        Thank you for replying.  I need to be talking to someone.  I wish I were as strong as my wife but at this moment, I'm not.

        You asked what is being considered at this point.  Well, we go to the oncologist today.  I suppose that will be the start.

        I really want to get a second opinion but the surgeon that read the results to us a few days ago said that since Mayo sent

        this to Mass General Hospital, that in itself was a second opinion.  So confusing…

        So, at this point we are at a stand still.  However, you mention some things or terms above that I don't know anything 

        but this is what is was called, which is different, I think, than what you mentioned.  He called it, metastatic malignant 

        epithelioid and spindle cell neoplasm.  Does that make sense.

         

        Thanks again.  I needed all these responses BADLY!

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        archer
        Participant

        Thank you for replying.  I need to be talking to someone.  I wish I were as strong as my wife but at this moment, I'm not.

        You asked what is being considered at this point.  Well, we go to the oncologist today.  I suppose that will be the start.

        I really want to get a second opinion but the surgeon that read the results to us a few days ago said that since Mayo sent

        this to Mass General Hospital, that in itself was a second opinion.  So confusing…

        So, at this point we are at a stand still.  However, you mention some things or terms above that I don't know anything 

        but this is what is was called, which is different, I think, than what you mentioned.  He called it, metastatic malignant 

        epithelioid and spindle cell neoplasm.  Does that make sense.

         

        Thanks again.  I needed all these responses BADLY!

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      MichaelFL
      Participant

      Are you certain that this is a melanoma? You may wish to have her slides reviewed by a dermatopathologist, as a second opinion is never a bad idea at this point, to make sure exactly what it is that you both are dealing with.

      Be aware that occasionally, the spindle cells of desmoplastic melanoma can be negative for S100, making distinction from other spindle cell lesions difficult. Desmoplastic melanoma should be distinguished from other spindle cell lesions such as sclerosing melanocytic nevi, nodular fasciitis, atypical fibroxanthoma, dermatofibrosarcoma protruberance and spindle cell squamous carcinoma and scar tissue.

      Unlike immature scar tissue, in desmoplastic melanoma there is neurotropism, epidermal proliferation of melanocytes, and S100 and/ or HMB45 positivity.

      Yes, sometimes melanoma can slip by and there is not a primary location on the skin. Other times it is not caused by direct sun exposure itself, but maybe genetics. Sometimes it takes a pathologist or even dermatopathologist some time to figure out what is going on if no primary melanoma was found.

      If it is spindle cell melanoma, which is also known as desmoplastic melanoma, it is a rare form of melanoma that is locally aggressive and it may arise from a preexisting lesion or without a precursor. These lesions may be pigmented or flesh-colored. This subtype of melanoma is most common in elderly, male patients, but women are at risk as well

      Maybe this sit e will help you as well: http://www.histopathology-india.net/Des.htm

      Also, what else is being considered at this point? Second opinion? SNB-sentinel node biopsy? Scans? Clinical trial?

      Michael

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      lhaley
      Participant

      I'm sorry you've had to join us but you will get lots of support here. We have both patients and caretakers. 

      I don't know why it took so long for the labs unless since they weren't looking for melanoma they had several check out the pathology. 

      Your next step will be that the oncologist will order scans. Most likely a PET/CT and perhaps an MRI.  As you said they need to see if it is anywhere else.  We have several on this board that have unknown primaries.  You do not need to be a sunlover to have melanoma.  Spindle cell is a very unique type of mel that perhaps others can help with.

      Just know that there is hope!! 

      Linda

      Stage IV  since 06

      stable

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        archer
        Participant

        Thank you Linda.  Your note was encouraging and God knows how badly I need that…

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        archer
        Participant

        Thank you Linda.  Your note was encouraging and God knows how badly I need that…

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      lhaley
      Participant

      I'm sorry you've had to join us but you will get lots of support here. We have both patients and caretakers. 

      I don't know why it took so long for the labs unless since they weren't looking for melanoma they had several check out the pathology. 

      Your next step will be that the oncologist will order scans. Most likely a PET/CT and perhaps an MRI.  As you said they need to see if it is anywhere else.  We have several on this board that have unknown primaries.  You do not need to be a sunlover to have melanoma.  Spindle cell is a very unique type of mel that perhaps others can help with.

      Just know that there is hope!! 

      Linda

      Stage IV  since 06

      stable

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      premedy
      Participant

      I would say that the two most importnat things to accomplish at this point is to make sure you see an oncologist that is a melanoma specialist and get a PET Scan/CT scan done asap.  Sounds like a unique situation but maybe some others can comment on that type of melanoma specifically.  This board is filled with great people that are really knowledgable and helpful. You came to right place.

      all the best,

      pat

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        Becky
        Participant

        My son also had an unusual tumor which went to 3 pathologists. One result was "spindle cell melanoma" but becuase of my sons age (21) and the location of the tumor (tip of his tongue), it was sent to a third at Mass General. Was yours wife's sent to Dr Mihm? That is who our 3rd pathologist was and according to my son's surgeon, he is the international expert.

        In anycase, you came to the right place here for information and support. Let us know what the oncologist says.

         

        Becky

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        archer
        Participant

        Hi Becky,

        No, the Dr. name is Paula M. Arnell from Mass General

        So confusing to know what to think or do.

        Thanks for replying.

         

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        archer
        Participant

        Hi Becky,

        No, the Dr. name is Paula M. Arnell from Mass General

        So confusing to know what to think or do.

        Thanks for replying.

         

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        Becky
        Participant

        My son also had an unusual tumor which went to 3 pathologists. One result was "spindle cell melanoma" but becuase of my sons age (21) and the location of the tumor (tip of his tongue), it was sent to a third at Mass General. Was yours wife's sent to Dr Mihm? That is who our 3rd pathologist was and according to my son's surgeon, he is the international expert.

        In anycase, you came to the right place here for information and support. Let us know what the oncologist says.

         

        Becky

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        archer
        Participant

        We have discussed going to a specialist in melanoma and it appears they are about 45 minutes away.

        We will probably go that route if we have too.

        Thanks for replying to me….

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        archer
        Participant

        We have discussed going to a specialist in melanoma and it appears they are about 45 minutes away.

        We will probably go that route if we have too.

        Thanks for replying to me….

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        lhaley
        Participant

        Listen carefully to the oncologist today, then ask your questions. Do not leave without a complete understanding of the vocabulary they are working with! 

        When I had my recurrance in 06 I had my pathology and my scans all sent to Dana Farber (we live in SC) as a second opinion, Dana Farber sent the pathology onto Mass General. My insurance company actually organized it for me!  I have since been told that Mass G. does many second opinions.

        Your wife really does need to get to a melanoma specialist. There have been many changes lately and you need someone uptodate with the latest options and knowledge.  My first few appointments with my mel specialist was unbelivable. He spent hours from with us!  When I left he gave me his e-mail address for the questions I had later.  Part of that time was him reading through my rather thick file and asking me many questions. Now I confident that he truly knows my individual history.  You are going to find that melanoma is extremly individual and we each seem to respond so differently to the different options that are out there.

        Please post tonight and let us know your next move.  Hopefully after the scans she will be told that she is NED (no evidence of disease)!

        Linda

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        lhaley
        Participant

        Listen carefully to the oncologist today, then ask your questions. Do not leave without a complete understanding of the vocabulary they are working with! 

        When I had my recurrance in 06 I had my pathology and my scans all sent to Dana Farber (we live in SC) as a second opinion, Dana Farber sent the pathology onto Mass General. My insurance company actually organized it for me!  I have since been told that Mass G. does many second opinions.

        Your wife really does need to get to a melanoma specialist. There have been many changes lately and you need someone uptodate with the latest options and knowledge.  My first few appointments with my mel specialist was unbelivable. He spent hours from with us!  When I left he gave me his e-mail address for the questions I had later.  Part of that time was him reading through my rather thick file and asking me many questions. Now I confident that he truly knows my individual history.  You are going to find that melanoma is extremly individual and we each seem to respond so differently to the different options that are out there.

        Please post tonight and let us know your next move.  Hopefully after the scans she will be told that she is NED (no evidence of disease)!

        Linda

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        carol b
        Participant

        Sounds real close to what i went thru. I found tumor under my arm in Nov. Had four biopsies and they finally figured out it was metastatic melanoma stage 4. Sorry you have to be here on this board cause it only means one thing. Im still new to this place so i cant really give alot of info about anything except that you will find great advice from people on here. Pay attention to what they say and things will be much easier to figure out. You have found the best place to be. I have found all my answers here on this board. Your journey has just begun. There will be lots more information that you are going to need. You will find it here. Come as often as you like because everyone here cares. They are angels. They are cancer warriors and they are survivors that has been going thru it for years. Once again im so sorry you have to be on this board but so happy that you found it. I will be praying for you and your wife as will others here.

        Carol b

        Metastatic Melanoma Stage 4

        Clavical, chest, armpit tumors

        16 bags of Interleukin 2

        Vanderbilt in Nashville TN. for treatments

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        carol b
        Participant

        Sounds real close to what i went thru. I found tumor under my arm in Nov. Had four biopsies and they finally figured out it was metastatic melanoma stage 4. Sorry you have to be here on this board cause it only means one thing. Im still new to this place so i cant really give alot of info about anything except that you will find great advice from people on here. Pay attention to what they say and things will be much easier to figure out. You have found the best place to be. I have found all my answers here on this board. Your journey has just begun. There will be lots more information that you are going to need. You will find it here. Come as often as you like because everyone here cares. They are angels. They are cancer warriors and they are survivors that has been going thru it for years. Once again im so sorry you have to be on this board but so happy that you found it. I will be praying for you and your wife as will others here.

        Carol b

        Metastatic Melanoma Stage 4

        Clavical, chest, armpit tumors

        16 bags of Interleukin 2

        Vanderbilt in Nashville TN. for treatments

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        archer
        Participant

        Thank you.  You don't know how much reading these messages helps me. 

        I am not doing well but I want to be doing well for her.  I just got off the phone making an appt with a specialist for next

        Tuesday.  I haven't told me wife yet because she is gone for the day.

        I hope the news today is hopeful.  I would take anything at this point.

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        archer
        Participant

        Thank you.  You don't know how much reading these messages helps me. 

        I am not doing well but I want to be doing well for her.  I just got off the phone making an appt with a specialist for next

        Tuesday.  I haven't told me wife yet because she is gone for the day.

        I hope the news today is hopeful.  I would take anything at this point.

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      premedy
      Participant

      I would say that the two most importnat things to accomplish at this point is to make sure you see an oncologist that is a melanoma specialist and get a PET Scan/CT scan done asap.  Sounds like a unique situation but maybe some others can comment on that type of melanoma specifically.  This board is filled with great people that are really knowledgable and helpful. You came to right place.

      all the best,

      pat

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      Carol Taylor
      Participant

      All the best to you and your wife as you start this. My melanoma specialist is over 2 hours away and worth every minute of the drive to get to…don't let 45 minutes stand in your way.  You & your wife really need a specialist and I'd advise not making any huge decisions until she sees one.

      Also, I get ideas for posts on the Melanoma Prayer Center page from what I read on this forum, I like to try and hit things others are dealing with. You reminded me of the role & absolute importance of our care-givers, so today's post is my tribute to all care-givers. You can hit the link and read from facebook…you don't have to belong to fb to read.

      http://www.facebook.com/pages/Melanoma-Prayer-Center/136617429740982

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      Carol Taylor
      Participant

      All the best to you and your wife as you start this. My melanoma specialist is over 2 hours away and worth every minute of the drive to get to…don't let 45 minutes stand in your way.  You & your wife really need a specialist and I'd advise not making any huge decisions until she sees one.

      Also, I get ideas for posts on the Melanoma Prayer Center page from what I read on this forum, I like to try and hit things others are dealing with. You reminded me of the role & absolute importance of our care-givers, so today's post is my tribute to all care-givers. You can hit the link and read from facebook…you don't have to belong to fb to read.

      http://www.facebook.com/pages/Melanoma-Prayer-Center/136617429740982

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        archer
        Participant

        Thank you for replying.  I did make the appt with the specialist for next Tuesday.

        Will be interesting to see the reaction of the oncologist we are visiting with later today.

        Thanks again.

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        archer
        Participant

        Thank you for replying.  I did make the appt with the specialist for next Tuesday.

        Will be interesting to see the reaction of the oncologist we are visiting with later today.

        Thanks again.

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      Carmon in NM
      Participant

      Hi Archer – just  a word of support here. I was 55 too when I was diagnosed and tomorrow will be my 58th birthday! In spite of being Stage 4 now, I'm doing really great and have no plans of disappearing anytime soon!

      My diagnosis was incredibly hard on my husband too but in many ways it has brought us even closer together and we have both learned to live with joy in every moment. Just be good to each other and keep talking! Even if it seems really scarey, for me being able to talk about what I was experiencing was the most important part of getting through treatments. Your wife is very lucky to have you there to step in and help with the things you are doing.

      My thoughts and prayers with you both –

      Carmon in NM Stage 3b 9/2008, Stage 4 6/2010

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      Carmon in NM
      Participant

      Hi Archer – just  a word of support here. I was 55 too when I was diagnosed and tomorrow will be my 58th birthday! In spite of being Stage 4 now, I'm doing really great and have no plans of disappearing anytime soon!

      My diagnosis was incredibly hard on my husband too but in many ways it has brought us even closer together and we have both learned to live with joy in every moment. Just be good to each other and keep talking! Even if it seems really scarey, for me being able to talk about what I was experiencing was the most important part of getting through treatments. Your wife is very lucky to have you there to step in and help with the things you are doing.

      My thoughts and prayers with you both –

      Carmon in NM Stage 3b 9/2008, Stage 4 6/2010

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        archer
        Participant

        Thank you for sharing that.  I can't seem to get a grip on my emotions with all of this.  Very little sleep, not eating much

        and a racing mind all day.  I know. sounds like depression coming but I don't want that to happen.

        At least I know I am not the only person falling apart with this.  I feel so sorry for my wife and we haven't even begun to

        go to the oncologist yet.

        WOW

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        archer
        Participant

        Thank you for sharing that.  I can't seem to get a grip on my emotions with all of this.  Very little sleep, not eating much

        and a racing mind all day.  I know. sounds like depression coming but I don't want that to happen.

        At least I know I am not the only person falling apart with this.  I feel so sorry for my wife and we haven't even begun to

        go to the oncologist yet.

        WOW

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      nickmac56
      Participant

      Archer – sorry to hear about this news. Similar to what happened to my wife (age 50). Misdiagnosed as breast cancer at first, until another lump on her back thought to be a lypoma and followed by her doc and dermatologist for 3 years was taken out. Never any outward sign of melanoma. Agree with all the other comments – get the scans and get thee to a melanoma specialist. We are headed to NIH after failing many treatments. I've got a blog that has some topics that may be of interest to you in your journey as caretaker. best of luck.

      http://cancercabanaboy.blogspot.com/

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      nickmac56
      Participant

      Archer – sorry to hear about this news. Similar to what happened to my wife (age 50). Misdiagnosed as breast cancer at first, until another lump on her back thought to be a lypoma and followed by her doc and dermatologist for 3 years was taken out. Never any outward sign of melanoma. Agree with all the other comments – get the scans and get thee to a melanoma specialist. We are headed to NIH after failing many treatments. I've got a blog that has some topics that may be of interest to you in your journey as caretaker. best of luck.

      http://cancercabanaboy.blogspot.com/

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        archer
        Participant

        Thank you for replying and sharing the story.

        I will go to the blog soon.

        Prayers….

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        archer
        Participant

        Thank you for replying and sharing the story.

        I will go to the blog soon.

        Prayers….

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