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Please help. Frustrated with melanoma

Forums General Melanoma Community Please help. Frustrated with melanoma

  • Post
    Mamarose0403
    Participant

    I was diagnosed with a-b lentigo v malignant melanomas. Two shave biopsies were performed and pathology showed Breslow depths of .18mm & the other at least .6mm with tumor present in deep margins as well as peripheral. I was referred to an oncology team but after reviewing my labs they referred  me to a general surgeon without seeing me. I have since had the the excision but was told not to test lymph nodes at this time. The surgeon cut between 6-8 centimeters down into my forearm and about 6 inches in length. Recovery is not going as easy as I had hoped. I have quite a bit of nerve pain that the prescribed medication doesn't seem to help with and I am unable to bend my arm due to the incision nor can I straighten it because the skin was stretched so tightly when sutured.  My arm is also very cold in certain spots affected by the surgery. I was only told to be concerned if the surgical site was hot not ice cold. I am still worried about lymph nodes and metastasis but the discomfort it taking a front seat. My follow up isn't until sept 1 even though I have made an effort to make it sooner. I thought I was pretty tough in general but this experience is making me feel like I'm being overly dramatic which is not usually my nature. I have a Jewish mother for that department! Please help.  

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  • Replies
      Elliemae216
      Participant

      I am very sorry to hear of your diagnosis.  I can comment about the nerve pain, as I too had the same issue.  My dermatologist describe it this way….  Our nerves  constantly communicate with each other.  When we had our surgery to remove a tumor, the nerves were also cut, thus stopping the nerves talking to each other.  The nerve now has a ridge to cross, and it will take time for the nerve to build a bridge to the other side. In the mean time, the nerve tries to communicate but is not receiving a response.   I hope that made sense to you.  My surgery was last December.  My Melanoma was located on my back in the upper mid region.  It was very difficult for me not to tear my wound, which I did.  I recall rolling over one night in bed and feeling the wound tear. It was horrible pain, and took months to heal.  The nerve portion is much better today but occassionally feel a little burning.  Also, I see the dermatologist every 3 months and the oncologist on rotating months.  Last week, my dermatologist taught me how to start doing lymph node checks.  I believe it's everyone Melanoma survivor's fear that their melanoma has spread… that's why I am on this site today…  looking for answers.  You are not alone in your fears and questions. 

       

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      Elliemae216
      Participant

      I am very sorry to hear of your diagnosis.  I can comment about the nerve pain, as I too had the same issue.  My dermatologist describe it this way….  Our nerves  constantly communicate with each other.  When we had our surgery to remove a tumor, the nerves were also cut, thus stopping the nerves talking to each other.  The nerve now has a ridge to cross, and it will take time for the nerve to build a bridge to the other side. In the mean time, the nerve tries to communicate but is not receiving a response.   I hope that made sense to you.  My surgery was last December.  My Melanoma was located on my back in the upper mid region.  It was very difficult for me not to tear my wound, which I did.  I recall rolling over one night in bed and feeling the wound tear. It was horrible pain, and took months to heal.  The nerve portion is much better today but occassionally feel a little burning.  Also, I see the dermatologist every 3 months and the oncologist on rotating months.  Last week, my dermatologist taught me how to start doing lymph node checks.  I believe it's everyone Melanoma survivor's fear that their melanoma has spread… that's why I am on this site today…  looking for answers.  You are not alone in your fears and questions. 

       

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        Mamarose0403
        Participant

        Thank you Ellen. That does help. 

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        Mamarose0403
        Participant

        Thank you Ellen. That does help. 

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        Mamarose0403
        Participant

        Thank you Ellen. That does help. 

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      Elliemae216
      Participant

      I am very sorry to hear of your diagnosis.  I can comment about the nerve pain, as I too had the same issue.  My dermatologist describe it this way….  Our nerves  constantly communicate with each other.  When we had our surgery to remove a tumor, the nerves were also cut, thus stopping the nerves talking to each other.  The nerve now has a ridge to cross, and it will take time for the nerve to build a bridge to the other side. In the mean time, the nerve tries to communicate but is not receiving a response.   I hope that made sense to you.  My surgery was last December.  My Melanoma was located on my back in the upper mid region.  It was very difficult for me not to tear my wound, which I did.  I recall rolling over one night in bed and feeling the wound tear. It was horrible pain, and took months to heal.  The nerve portion is much better today but occassionally feel a little burning.  Also, I see the dermatologist every 3 months and the oncologist on rotating months.  Last week, my dermatologist taught me how to start doing lymph node checks.  I believe it's everyone Melanoma survivor's fear that their melanoma has spread… that's why I am on this site today…  looking for answers.  You are not alone in your fears and questions. 

       

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      273c
      Participant

      ((((Hugs)))) I wish I had more to offer.  I would call on the cold arm.  Sure sounds like it isn't getting enough blood circulation.  I'd even mention that you were concerned about that then someone might be a bit more interested in seeing you sooner for follow up.  Hard for your body to heal if there is no circulation to the area. 

       

      I think it is also fair to start asking about appointments to get scans, who is putting in the referrals for those? which scans will they be doing?  And most importantly can you get a referral to a melanoma expert? 

      I have read conflicting info on sentinel lymph node biopsies.  I would push to get in with a melanoma expert rather then push the docs you have to do a SLNB. 

       

      Kathy

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      273c
      Participant

      ((((Hugs)))) I wish I had more to offer.  I would call on the cold arm.  Sure sounds like it isn't getting enough blood circulation.  I'd even mention that you were concerned about that then someone might be a bit more interested in seeing you sooner for follow up.  Hard for your body to heal if there is no circulation to the area. 

       

      I think it is also fair to start asking about appointments to get scans, who is putting in the referrals for those? which scans will they be doing?  And most importantly can you get a referral to a melanoma expert? 

      I have read conflicting info on sentinel lymph node biopsies.  I would push to get in with a melanoma expert rather then push the docs you have to do a SLNB. 

       

      Kathy

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        Mamarose0403
        Participant

        Thank you Kathy. 

        Here lies yet another issue. There are no melanoma specialists in my medical group nor are there any surgical oncologists.   I've pretty much been left to figure things out for myself. Which is why I am looking for answers here. Maybe it's just time to take out a loan and go out of network for care. Any thoughts?? 

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        Mamarose0403
        Participant

        Thank you Kathy. 

        Here lies yet another issue. There are no melanoma specialists in my medical group nor are there any surgical oncologists.   I've pretty much been left to figure things out for myself. Which is why I am looking for answers here. Maybe it's just time to take out a loan and go out of network for care. Any thoughts?? 

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        kylez
        Participant

        Leah, do they tell you that they had staged the melanoma they took out? That means categorizing it by a variety of factors including depth. There are general guidelines according to stage. From the treatments you've gotten it sounds like it's probably stage 1.

        In my own experience no scans were done for either of my stage 1 primaries. They did the sentinel lymph node biopsies in both cases. I don't know what the guidelines are for when it's done and when it isn't. But in either case, I don't know if a sentinel node biopsy could be done post-excision in your case. I've always figured they would be done at the same time. 

        I don't remember what kind of surgeon did my first excision. The more recent one was done by a plastic surgeon. I didn't see a melanoma specialist oncologist or any kind of oncologist until much later when metastases were found when looking at another medical issue. But for stage 1 as far as I know they don't do scans. 

        If you doubt the care you're receiving, as I had done at one point, I got a second opinion. I didn't switch treatment teams from my HMO mid-insurance period. I didn't want to take out a loan either. But my HMO doctors were more than happy to consult/hear the second opinion. If your staging is stage 1, maybe the kind of second opinion to look for would be at a multi-disciplinary melanoma clinic. At mine (I did switch away from the HMO eventually) there is a dermatologist whose specialty is melanoma patients.

        In other words, not sure it's time to take out a loan. Self-pay for a second opinion if you find a melanoma specialist/clinic may cost, but hopefully not that much!

        – Kyle

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        kylez
        Participant

        Leah, do they tell you that they had staged the melanoma they took out? That means categorizing it by a variety of factors including depth. There are general guidelines according to stage. From the treatments you've gotten it sounds like it's probably stage 1.

        In my own experience no scans were done for either of my stage 1 primaries. They did the sentinel lymph node biopsies in both cases. I don't know what the guidelines are for when it's done and when it isn't. But in either case, I don't know if a sentinel node biopsy could be done post-excision in your case. I've always figured they would be done at the same time. 

        I don't remember what kind of surgeon did my first excision. The more recent one was done by a plastic surgeon. I didn't see a melanoma specialist oncologist or any kind of oncologist until much later when metastases were found when looking at another medical issue. But for stage 1 as far as I know they don't do scans. 

        If you doubt the care you're receiving, as I had done at one point, I got a second opinion. I didn't switch treatment teams from my HMO mid-insurance period. I didn't want to take out a loan either. But my HMO doctors were more than happy to consult/hear the second opinion. If your staging is stage 1, maybe the kind of second opinion to look for would be at a multi-disciplinary melanoma clinic. At mine (I did switch away from the HMO eventually) there is a dermatologist whose specialty is melanoma patients.

        In other words, not sure it's time to take out a loan. Self-pay for a second opinion if you find a melanoma specialist/clinic may cost, but hopefully not that much!

        – Kyle

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        Mamarose0403
        Participant

        Thank Kyle ,

        yes I am stage 1a on both rumors. There were two separate ones in the same area. Glad to hear your doctors were open to the second opinions. 

        I've read the pros and cons of the sentinel node biopsy but my surgeon felt it was better to cross that bridge only if necessary since I am still in my 30's and need my lymph nodes. Said the risks of being put under a second time were far less than the risks of removing lymph nodes. I will find out tomorrow if the margins were all clear on my excision and what the future holds for me. Thank you for taking the time to respond to me. 

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        Mamarose0403
        Participant

        Thank Kyle ,

        yes I am stage 1a on both rumors. There were two separate ones in the same area. Glad to hear your doctors were open to the second opinions. 

        I've read the pros and cons of the sentinel node biopsy but my surgeon felt it was better to cross that bridge only if necessary since I am still in my 30's and need my lymph nodes. Said the risks of being put under a second time were far less than the risks of removing lymph nodes. I will find out tomorrow if the margins were all clear on my excision and what the future holds for me. Thank you for taking the time to respond to me. 

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        Mamarose0403
        Participant

        Tumors not rumors!! Sorry. 

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        Mamarose0403
        Participant

        Tumors not rumors!! Sorry. 

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        Mamarose0403
        Participant

        Tumors not rumors!! Sorry. 

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        kylez
        Participant

        I hear what your doctor is saying about risks. So a SLNB can be done separately if judged necessary — OK. Good luck tomorrow getting the pathology results. Janner here says to always ask for a full copy of the dermatopathology report. – Kyle

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        kylez
        Participant

        I hear what your doctor is saying about risks. So a SLNB can be done separately if judged necessary — OK. Good luck tomorrow getting the pathology results. Janner here says to always ask for a full copy of the dermatopathology report. – Kyle

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        kylez
        Participant

        I hear what your doctor is saying about risks. So a SLNB can be done separately if judged necessary — OK. Good luck tomorrow getting the pathology results. Janner here says to always ask for a full copy of the dermatopathology report. – Kyle

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        Mamarose0403
        Participant

        Thank Kyle ,

        yes I am stage 1a on both rumors. There were two separate ones in the same area. Glad to hear your doctors were open to the second opinions. 

        I've read the pros and cons of the sentinel node biopsy but my surgeon felt it was better to cross that bridge only if necessary since I am still in my 30's and need my lymph nodes. Said the risks of being put under a second time were far less than the risks of removing lymph nodes. I will find out tomorrow if the margins were all clear on my excision and what the future holds for me. Thank you for taking the time to respond to me. 

        Loading spinner
        kylez
        Participant

        Leah, do they tell you that they had staged the melanoma they took out? That means categorizing it by a variety of factors including depth. There are general guidelines according to stage. From the treatments you've gotten it sounds like it's probably stage 1.

        In my own experience no scans were done for either of my stage 1 primaries. They did the sentinel lymph node biopsies in both cases. I don't know what the guidelines are for when it's done and when it isn't. But in either case, I don't know if a sentinel node biopsy could be done post-excision in your case. I've always figured they would be done at the same time. 

        I don't remember what kind of surgeon did my first excision. The more recent one was done by a plastic surgeon. I didn't see a melanoma specialist oncologist or any kind of oncologist until much later when metastases were found when looking at another medical issue. But for stage 1 as far as I know they don't do scans. 

        If you doubt the care you're receiving, as I had done at one point, I got a second opinion. I didn't switch treatment teams from my HMO mid-insurance period. I didn't want to take out a loan either. But my HMO doctors were more than happy to consult/hear the second opinion. If your staging is stage 1, maybe the kind of second opinion to look for would be at a multi-disciplinary melanoma clinic. At mine (I did switch away from the HMO eventually) there is a dermatologist whose specialty is melanoma patients.

        In other words, not sure it's time to take out a loan. Self-pay for a second opinion if you find a melanoma specialist/clinic may cost, but hopefully not that much!

        – Kyle

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        Mamarose0403
        Participant

        Thank you Kathy. 

        Here lies yet another issue. There are no melanoma specialists in my medical group nor are there any surgical oncologists.   I've pretty much been left to figure things out for myself. Which is why I am looking for answers here. Maybe it's just time to take out a loan and go out of network for care. Any thoughts?? 

        Loading spinner
      273c
      Participant

      ((((Hugs)))) I wish I had more to offer.  I would call on the cold arm.  Sure sounds like it isn't getting enough blood circulation.  I'd even mention that you were concerned about that then someone might be a bit more interested in seeing you sooner for follow up.  Hard for your body to heal if there is no circulation to the area. 

       

      I think it is also fair to start asking about appointments to get scans, who is putting in the referrals for those? which scans will they be doing?  And most importantly can you get a referral to a melanoma expert? 

      I have read conflicting info on sentinel lymph node biopsies.  I would push to get in with a melanoma expert rather then push the docs you have to do a SLNB. 

       

      Kathy

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      CHD
      Participant

      Sometimes the damaged nerves will hurt after a surgery and it takes time for that to heal.  I am not sure why the cold spots.  The hot would be indicating infection, but the cold I haven't heard of.  Do you have OK circulation into your hand and fingers?  My thought is that when in doubt, call the office or hospital and ask, to make sure all is well.

      My surgeries were quite painful but they were in the vulvar region and all I can say is that is not the best place to have a surgery.  As far as pain goes, though, it did teach me that the best way to cope with it is to stay ahead of it.  Make sure you ask for a decent pain medication, take some time off so you won't have to drive on it, and take it around the clock for the first few days.  That is what worked for me, and I definitely learned it the hard way.  It seems like people have different experiences with this.  My husband had a nonmelanoma skin cancer on his arm removed and wound up with a 3-inch incision for what had been a tiny little spot.  It didn't even hurt him enough to take Motrin!  He's a bit of a John Wayne type but he said it really didn't hurt.  I once had a tiny little spot biopsied off my left forearm and it burned like heck all night.  But my hard-earned advice is to stay ahead of pain when it is severe, as best you can.

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      CHD
      Participant

      Sometimes the damaged nerves will hurt after a surgery and it takes time for that to heal.  I am not sure why the cold spots.  The hot would be indicating infection, but the cold I haven't heard of.  Do you have OK circulation into your hand and fingers?  My thought is that when in doubt, call the office or hospital and ask, to make sure all is well.

      My surgeries were quite painful but they were in the vulvar region and all I can say is that is not the best place to have a surgery.  As far as pain goes, though, it did teach me that the best way to cope with it is to stay ahead of it.  Make sure you ask for a decent pain medication, take some time off so you won't have to drive on it, and take it around the clock for the first few days.  That is what worked for me, and I definitely learned it the hard way.  It seems like people have different experiences with this.  My husband had a nonmelanoma skin cancer on his arm removed and wound up with a 3-inch incision for what had been a tiny little spot.  It didn't even hurt him enough to take Motrin!  He's a bit of a John Wayne type but he said it really didn't hurt.  I once had a tiny little spot biopsied off my left forearm and it burned like heck all night.  But my hard-earned advice is to stay ahead of pain when it is severe, as best you can.

      Loading spinner
      CHD
      Participant

      Sometimes the damaged nerves will hurt after a surgery and it takes time for that to heal.  I am not sure why the cold spots.  The hot would be indicating infection, but the cold I haven't heard of.  Do you have OK circulation into your hand and fingers?  My thought is that when in doubt, call the office or hospital and ask, to make sure all is well.

      My surgeries were quite painful but they were in the vulvar region and all I can say is that is not the best place to have a surgery.  As far as pain goes, though, it did teach me that the best way to cope with it is to stay ahead of it.  Make sure you ask for a decent pain medication, take some time off so you won't have to drive on it, and take it around the clock for the first few days.  That is what worked for me, and I definitely learned it the hard way.  It seems like people have different experiences with this.  My husband had a nonmelanoma skin cancer on his arm removed and wound up with a 3-inch incision for what had been a tiny little spot.  It didn't even hurt him enough to take Motrin!  He's a bit of a John Wayne type but he said it really didn't hurt.  I once had a tiny little spot biopsied off my left forearm and it burned like heck all night.  But my hard-earned advice is to stay ahead of pain when it is severe, as best you can.

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