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Just got diagnosed with Melanoma on my rt thumb nail bed

Forums General Melanoma Community Just got diagnosed with Melanoma on my rt thumb nail bed

  • Post
    jvictoria
    Participant

    Hi all,

    Wanted to see if there was some insight on where to go, best place to get treated, what to expect. I'm playing the waiting game with my doctors to see what next steps might be.

    I had an initial biopsy of the affected area July 2014… biopsy can back negative for cancer, positive for Lichen Planus. May 2015, same area was biopsied again… Biopsy came back melanoma positive… the unusual part of the melanoma is that it doesn't have any dark spots (aka colorless)

    Was hoping for some insight as to where it would be best to treat this type of melanoma… I have a few options…

    – Univeristy of Miami (Florida) Sylvester Cancer Clinic

    – Northwestern University Chicago

    – Moffitt Clinic Tampa, FL

    Also, any general advice would be very helpful.

    Thanks!

Viewing 8 reply threads
  • Replies
      Janner
      Participant

      Moffitt!  Definitely a place that specializes in melanoma.  Melanoma without color is called amelanotic.  It happens to a smaller percentage of the melanoma population but it certainly isn't unheard of.

      Janner
      Participant

      Moffitt!  Definitely a place that specializes in melanoma.  Melanoma without color is called amelanotic.  It happens to a smaller percentage of the melanoma population but it certainly isn't unheard of.

      Janner
      Participant

      Moffitt!  Definitely a place that specializes in melanoma.  Melanoma without color is called amelanotic.  It happens to a smaller percentage of the melanoma population but it certainly isn't unheard of.

      arthurjedi007
      Participant

      Like janner said definitely mofffitt. Dr weber is the best melanoma doc there but I'm sure there are others as well.

      Artie

      arthurjedi007
      Participant

      Like janner said definitely mofffitt. Dr weber is the best melanoma doc there but I'm sure there are others as well.

      Artie

      arthurjedi007
      Participant

      Like janner said definitely mofffitt. Dr weber is the best melanoma doc there but I'm sure there are others as well.

      Artie

      A
      Participant

      I am very sorry about your diagnosis!

      Could you please describe how your melanoma/affected nail area looked like? Since it was colorless, I believe it is important to be aware of the signs. Thank you.

        jvictoria
        Participant

        Thanks everyone for the feedback.

        The whole thing started as a ridge/line down the center of my nail. I paid no notice to it since I have other ridges that appear to be normal. One day the nail split in two and began to fall off the finger… I thought it was odd but, I assumed that the nail would just grow back so again I did not seek medical attention. Time passed and the nail did not grow back normally and at the bottom where the nail bed was what looked like a small patch or reddened/inflamed skin. At that time, I sought out medical attention and the first biopsy was performed.

        jvictoria
        Participant

        Just got an update from the hospital that did the original Biopsy in July 2014… I had informed them of the current malenoma findings from the current biopsy; they went in and did a deeper study of the original biopsy and found malenoma… frustrating to say the least.

        Marianne quinn
        Participant

        Juan- sorry about your diagnosis. Melanoma under the thumbnail is very rare.my husband is NED after yervoy and surgery. Please contact me through the website or read my posts for more info. I hope to hear from you. Marianne . He had melanoma on his left thumb nail bed .

        Patti
        Participant

        Juan I too have this same type of melanoma – under my left thumb nail bed – it sounds very similar to your story with the split nail and the anil falling off.  I had to have half of my thumb amputated in Dec 2014.  The melanoma had not apread to my lymph nodes and the pet scan was clear so it is just a watch and wait for now!  I hope you find a great surgeon and oncologist.  Patti

        Patti
        Participant

        Juan I too have this same type of melanoma – under my left thumb nail bed – it sounds very similar to your story with the split nail and the anil falling off.  I had to have half of my thumb amputated in Dec 2014.  The melanoma had not apread to my lymph nodes and the pet scan was clear so it is just a watch and wait for now!  I hope you find a great surgeon and oncologist.  Patti

        Patti
        Participant

        Juan I too have this same type of melanoma – under my left thumb nail bed – it sounds very similar to your story with the split nail and the anil falling off.  I had to have half of my thumb amputated in Dec 2014.  The melanoma had not apread to my lymph nodes and the pet scan was clear so it is just a watch and wait for now!  I hope you find a great surgeon and oncologist.  Patti

        Marianne quinn
        Participant

        Juan- sorry about your diagnosis. Melanoma under the thumbnail is very rare.my husband is NED after yervoy and surgery. Please contact me through the website or read my posts for more info. I hope to hear from you. Marianne . He had melanoma on his left thumb nail bed .

        Marianne quinn
        Participant

        Juan- sorry about your diagnosis. Melanoma under the thumbnail is very rare.my husband is NED after yervoy and surgery. Please contact me through the website or read my posts for more info. I hope to hear from you. Marianne . He had melanoma on his left thumb nail bed .

        jvictoria
        Participant

        Surgery tomorrow… thumb amputation and centinal node removal at Moffitt. Had a small side issue where I got a blood clot in my lower left leg complicating issues a bit.

        Juan

        jvictoria
        Participant

        Results are back… Amputation went as well as can be expected. Sentinel node came back 2 of 10 nodes removed had cancer. Moffit is recommending full nodal removal in left arm and potentially go on a clinical trial. All your thoughts on this are welcome.

        I have been getting some conflicts on this… some people are saying that the full node removal sholdn't be done and I should go directly on a trial… then I hear yo can't go on a trial unless you have all your nodes removed.

        Juan

        tekpc81
        Participant

        Hi Juan, 

        I am just wondering if there are any updates on your condition. I happened to come to this site during some research into the condition. I hope you are doing better and looking forward to hearing from you on the outcome. thank you.

        tekpc81
        Participant

        Hi Juan, 

        I am just wondering if there are any updates on your condition. I happened to come to this site during some research into the condition. I hope you are doing better and looking forward to hearing from you on the outcome. thank you.

        tekpc81
        Participant

        Hi Juan, 

        I am just wondering if there are any updates on your condition. I happened to come to this site during some research into the condition. I hope you are doing better and looking forward to hearing from you on the outcome. thank you.

        jvictoria
        Participant

        Results are back… Amputation went as well as can be expected. Sentinel node came back 2 of 10 nodes removed had cancer. Moffit is recommending full nodal removal in left arm and potentially go on a clinical trial. All your thoughts on this are welcome.

        I have been getting some conflicts on this… some people are saying that the full node removal sholdn't be done and I should go directly on a trial… then I hear yo can't go on a trial unless you have all your nodes removed.

        Juan

        jvictoria
        Participant

        Results are back… Amputation went as well as can be expected. Sentinel node came back 2 of 10 nodes removed had cancer. Moffit is recommending full nodal removal in left arm and potentially go on a clinical trial. All your thoughts on this are welcome.

        I have been getting some conflicts on this… some people are saying that the full node removal sholdn't be done and I should go directly on a trial… then I hear yo can't go on a trial unless you have all your nodes removed.

        Juan

        jvictoria
        Participant

        Surgery tomorrow… thumb amputation and centinal node removal at Moffitt. Had a small side issue where I got a blood clot in my lower left leg complicating issues a bit.

        Juan

        jvictoria
        Participant

        Surgery tomorrow… thumb amputation and centinal node removal at Moffitt. Had a small side issue where I got a blood clot in my lower left leg complicating issues a bit.

        Juan

        jvictoria
        Participant

        Just got an update from the hospital that did the original Biopsy in July 2014… I had informed them of the current malenoma findings from the current biopsy; they went in and did a deeper study of the original biopsy and found malenoma… frustrating to say the least.

        jvictoria
        Participant

        Just got an update from the hospital that did the original Biopsy in July 2014… I had informed them of the current malenoma findings from the current biopsy; they went in and did a deeper study of the original biopsy and found malenoma… frustrating to say the least.

        jvictoria
        Participant

        Thanks everyone for the feedback.

        The whole thing started as a ridge/line down the center of my nail. I paid no notice to it since I have other ridges that appear to be normal. One day the nail split in two and began to fall off the finger… I thought it was odd but, I assumed that the nail would just grow back so again I did not seek medical attention. Time passed and the nail did not grow back normally and at the bottom where the nail bed was what looked like a small patch or reddened/inflamed skin. At that time, I sought out medical attention and the first biopsy was performed.

        jvictoria
        Participant

        Thanks everyone for the feedback.

        The whole thing started as a ridge/line down the center of my nail. I paid no notice to it since I have other ridges that appear to be normal. One day the nail split in two and began to fall off the finger… I thought it was odd but, I assumed that the nail would just grow back so again I did not seek medical attention. Time passed and the nail did not grow back normally and at the bottom where the nail bed was what looked like a small patch or reddened/inflamed skin. At that time, I sought out medical attention and the first biopsy was performed.

      A
      Participant

      I am very sorry about your diagnosis!

      Could you please describe how your melanoma/affected nail area looked like? Since it was colorless, I believe it is important to be aware of the signs. Thank you.

      A
      Participant

      I am very sorry about your diagnosis!

      Could you please describe how your melanoma/affected nail area looked like? Since it was colorless, I believe it is important to be aware of the signs. Thank you.

Viewing 8 reply threads
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