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My wonderful wife was diagnosed with melanoma. Any insight appreciated.

Forums General Melanoma Community My wonderful wife was diagnosed with melanoma. Any insight appreciated.

  • Post
    Brettuss
    Participant

       

       

      My wife has what the dermatologist calls an "extremely high" number of atypical moles. Her father had melanoma, Stage III and is still alive and cancer free after 12 years. She went into the dermatologist on July 19th and they did a shave biopsy (I think) on the maximum number of moles they could do, five. Unfortunately, one of them came back positive for melanoma.

      This scared the crap out of us. We have a 4 month old son. I can't imagine a future without her. She just became a nurse. We are finally hitting our stride. We are only in our late 20's.  This is insane.  Fortunately, the dermatologist thinks they got it all with the biopsy. Here are the official stats:

      Depth of .75 mm, Clark's Level III, no ulceration, no mitotic evidence, margins clear.

      They are going in on August 18th to take an extra 1 cm from around the site of the mole. If the tests there show no melanoma cells, and they have said they think it will, she will be given an 'all clear'. Based on the pathology results, there are no plans to do a sentinel node biopsy.

      Is this news as good as we think it is? No melanoma would be better, but aside from in-situ, I think these results are pretty good – or am I grasping for something that isn't there? For those with experience, would you suggest pushing for a SNB even though it isn't officially recommended?

      This was a huge wake up call to us. Her making her dermatology visit is also a direct result of the "Dear 16 Year Old Me" video, so THANK YOU to the people who posted that video. You probably saved her life.

      Are there any of you who track your moles at home? What method do you use?

      I want to make sure that we catch every last one of these bad moles right when/if they start.

    Viewing 11 reply threads
    • Replies
        goldengirls2011
        Participant

          My understanding is that a depth of .75mm or more usually warrants a SNB to be on the safe side. Overall, it looks as though you caught it early. I recently was diagnosed with .2mm, so I am very fortunate. Since I am fair skinned, blue eyed with many moles & freckles and there is alot of melanoma in my family, I had pictures taken professionally of my entire body. I used DermaTrak, but I'm sure there are many other companies out there to choose from. Mole mapping is the word for it.

          I see my derm every 3 months, and have been NED for 3 months. Good luck, and keep us posted.

          goldengirls2011
          Participant

            My understanding is that a depth of .75mm or more usually warrants a SNB to be on the safe side. Overall, it looks as though you caught it early. I recently was diagnosed with .2mm, so I am very fortunate. Since I am fair skinned, blue eyed with many moles & freckles and there is alot of melanoma in my family, I had pictures taken professionally of my entire body. I used DermaTrak, but I'm sure there are many other companies out there to choose from. Mole mapping is the word for it.

            I see my derm every 3 months, and have been NED for 3 months. Good luck, and keep us posted.

            MichaelFL
            Participant

              Hi, and welcome.

              As far as melanoma goes, no ulceration, no mitosis and clear margins are all a good sign as far as diagnosis.

              You are correct, based on the pathology report, a SNB is not warranted unless the melanoma Breslow depth is greater then .75 mm deep if not ulcerated, and 1.0 mm if ulcerated.

              If you wish to track moles at home, get a good digital camera and take pictures monthly and watch them for change. I have several I watch on the computer. Or, if they do it locally, you can have her derm (or someone) perform mole mapping.

              I would also like to make you aware that only about 8% of the melanoma population has more than one primary. Just because someone has atypical moles, it does not mean they will ever become melanoma, as most never do.

              Keep up the derm visits an Watch for change".

              Michael 1b

                Brettuss
                Participant

                  Michael, 

                  Thank you for your reply.  Her dermatologist does mole mapping, but I want to really, really, really be proactive about this thing.  I think our digital camera, a ruler, and a few body/mole charts will be the way to go.

                  Thank you for the insight regarding the SNB.  It is reassuring to hear that she may be OK for now.  I am a numbers/statistics guy, I trust science and math, and it is great to hear that only 8% have > 1 primary.  With her being female, and us catching it early, I really believe the numbers are on our side.

                  I appreciate the information.

                  MichaelFL
                  Participant

                    I hear you. I am a research/numbers/statistics guy as well! I took statistics and logic in college and loved it! I filled up an entire notebook in statistics.

                    Yes, the numbers ar on her side, just keep up the derm visits, and watch for change.

                    I have my pics of the ones I am concerned about on the computer, and I copy and paste them together with dates. You may both find that you are better at watching for change than anyone. No one knows their body better than the person who owns it.

                    Michael

                    MichaelFL
                    Participant

                      I hear you. I am a research/numbers/statistics guy as well! I took statistics and logic in college and loved it! I filled up an entire notebook in statistics.

                      Yes, the numbers ar on her side, just keep up the derm visits, and watch for change.

                      I have my pics of the ones I am concerned about on the computer, and I copy and paste them together with dates. You may both find that you are better at watching for change than anyone. No one knows their body better than the person who owns it.

                      Michael

                      Brettuss
                      Participant

                        Michael, 

                        Thank you for your reply.  Her dermatologist does mole mapping, but I want to really, really, really be proactive about this thing.  I think our digital camera, a ruler, and a few body/mole charts will be the way to go.

                        Thank you for the insight regarding the SNB.  It is reassuring to hear that she may be OK for now.  I am a numbers/statistics guy, I trust science and math, and it is great to hear that only 8% have > 1 primary.  With her being female, and us catching it early, I really believe the numbers are on our side.

                        I appreciate the information.

                      MichaelFL
                      Participant

                        Hi, and welcome.

                        As far as melanoma goes, no ulceration, no mitosis and clear margins are all a good sign as far as diagnosis.

                        You are correct, based on the pathology report, a SNB is not warranted unless the melanoma Breslow depth is greater then .75 mm deep if not ulcerated, and 1.0 mm if ulcerated.

                        If you wish to track moles at home, get a good digital camera and take pictures monthly and watch them for change. I have several I watch on the computer. Or, if they do it locally, you can have her derm (or someone) perform mole mapping.

                        I would also like to make you aware that only about 8% of the melanoma population has more than one primary. Just because someone has atypical moles, it does not mean they will ever become melanoma, as most never do.

                        Keep up the derm visits an Watch for change".

                        Michael 1b

                        Janner
                        Participant

                          Sorry you had to join us here, but it sounds like things are progressing as you would want them to do.  The SNB doesn't appear warranted in the case of your wife.  Unless the lesion is considered high risk, 1 mm is typically the cutoff.  As for having dysplastic nevus syndrome (many atypical moles), I'd definitely try to find someone who can do "mole mapping" or whole body photography.  Have some professional pictures taken if you can.  Then you can monitor the moles that CHANGE.  It's tough when you have DNS, because you might have many moles that change.  But the changing ones are the ones you should pay the most attention to.  If you can't find someone professional to take the pictures, do it yourself using a good macro lens in lighting you can duplicate.  Lighting problems can cause you to think something has changed when it might really not have.

                          I'm a long term stage I survivor.  I have had 3 melanomas, but my first lesion was found when I was 29 in 1992!  It was .58mm and I am still NED (no evidence of disease) now.  I also had a .88mm lesion 10 years ago.  You' ve had your wakeup call.  Now you just pay attention to all those moles – and go on living!

                          Best wishes,

                          Janner

                          Janner
                          Participant

                            Sorry you had to join us here, but it sounds like things are progressing as you would want them to do.  The SNB doesn't appear warranted in the case of your wife.  Unless the lesion is considered high risk, 1 mm is typically the cutoff.  As for having dysplastic nevus syndrome (many atypical moles), I'd definitely try to find someone who can do "mole mapping" or whole body photography.  Have some professional pictures taken if you can.  Then you can monitor the moles that CHANGE.  It's tough when you have DNS, because you might have many moles that change.  But the changing ones are the ones you should pay the most attention to.  If you can't find someone professional to take the pictures, do it yourself using a good macro lens in lighting you can duplicate.  Lighting problems can cause you to think something has changed when it might really not have.

                            I'm a long term stage I survivor.  I have had 3 melanomas, but my first lesion was found when I was 29 in 1992!  It was .58mm and I am still NED (no evidence of disease) now.  I also had a .88mm lesion 10 years ago.  You' ve had your wakeup call.  Now you just pay attention to all those moles – and go on living!

                            Best wishes,

                            Janner

                            DonW
                            Participant

                              I recommend a second opinion by a melanoma surgeon — sometimes called a surgical oncologist — at a major medical center.  A derm is good for checking moles, but once you have melanoma, you definitely need a melanoma specialist. You didn't mention the location of her melanoma — trunk or extremeties. A trunk location has a worse prognosis. Also, the scrape is kind of scary with melanoma, so having a specialist review the whole situation — with possibly as second opinion on the pathology — is a good idea, or at least I think it is. This is the time to be proactive and try to head off further problems. Once melanoma speads, it's much more difficult to contain.

                              .75 mm usually has a great prognosis, but you should be covering all your bases.

                              DonW
                              Participant

                                I recommend a second opinion by a melanoma surgeon — sometimes called a surgical oncologist — at a major medical center.  A derm is good for checking moles, but once you have melanoma, you definitely need a melanoma specialist. You didn't mention the location of her melanoma — trunk or extremeties. A trunk location has a worse prognosis. Also, the scrape is kind of scary with melanoma, so having a specialist review the whole situation — with possibly as second opinion on the pathology — is a good idea, or at least I think it is. This is the time to be proactive and try to head off further problems. Once melanoma speads, it's much more difficult to contain.

                                .75 mm usually has a great prognosis, but you should be covering all your bases.

                                AZ_Gal
                                Participant

                                  Welcome, And so sorry to hear about your wife! I am new here as well and these guys really help to get you through it.

                                  Typically you would get an snb if the depth was closer to 1mm deep. mine was .99 and i just had my WLE ans SNB on the 5th.Having Melanoma SUCKS! & Let me tell you it will be all you two will think about for awhile.

                                  I am 26, with an amazing husband and 3 beautiful children, ages 6, 4, and 2. I was diagnosed June 1st, 2011 with Melanoma. .99 thickness,Clarks level IV, nodullar type, no ulceration, mitocise rate of 2/sq. mm, it was located on my back. I was crushed!

                                   

                                  If you want to see what the WLE will look like after they do it go here…

                                  http://www.facebook.com/media/set/?set=a.172871602782983.37336.100001804345017

                                  Those are my pics from Friday.

                                   

                                  If you or your wife ever need to talk about whats going on or have questions here is def the place to come….(other than your dr.s of course)

                                   

                                  ~Kim

                                  AZ_Gal
                                  Participant

                                    Welcome, And so sorry to hear about your wife! I am new here as well and these guys really help to get you through it.

                                    Typically you would get an snb if the depth was closer to 1mm deep. mine was .99 and i just had my WLE ans SNB on the 5th.Having Melanoma SUCKS! & Let me tell you it will be all you two will think about for awhile.

                                    I am 26, with an amazing husband and 3 beautiful children, ages 6, 4, and 2. I was diagnosed June 1st, 2011 with Melanoma. .99 thickness,Clarks level IV, nodullar type, no ulceration, mitocise rate of 2/sq. mm, it was located on my back. I was crushed!

                                     

                                    If you want to see what the WLE will look like after they do it go here…

                                    http://www.facebook.com/media/set/?set=a.172871602782983.37336.100001804345017

                                    Those are my pics from Friday.

                                     

                                    If you or your wife ever need to talk about whats going on or have questions here is def the place to come….(other than your dr.s of course)

                                     

                                    ~Kim

                                    Wally
                                    Participant

                                      I have no intention of alarming you but please read my profile and various postings. I also thought in-situ meant it would not come back – but it did – in my lungs – upgrade from stage 0 to stage iv immediately. This was removed and now they suspect it has progressed to my bones. I did not have the biopsy as planned before I left for the UK on holiday so will have this on my return to RSA on 7/9/11. To me this has been almost devetating especially as I do not know my status at this point in time. They traced the possible metastises on my ribs via a bone scan 2 days before I left due to ongoing pain I had on my ribs. I was given a nerve block like 4 hours before my flight was due to depart but the pain continues – not sure what this means and whether the nerve block should have relieved the pain. Pain tablets given me appear to be ineffective so the worry goes on.

                                      Whatever, I pray for your wife and trust she will be cleared of this scourge. All I say is, get whatever treatment /surgery is required to eradicate / mininise spread. God speed, Wally

                                      Wally
                                      Participant

                                        I have no intention of alarming you but please read my profile and various postings. I also thought in-situ meant it would not come back – but it did – in my lungs – upgrade from stage 0 to stage iv immediately. This was removed and now they suspect it has progressed to my bones. I did not have the biopsy as planned before I left for the UK on holiday so will have this on my return to RSA on 7/9/11. To me this has been almost devetating especially as I do not know my status at this point in time. They traced the possible metastises on my ribs via a bone scan 2 days before I left due to ongoing pain I had on my ribs. I was given a nerve block like 4 hours before my flight was due to depart but the pain continues – not sure what this means and whether the nerve block should have relieved the pain. Pain tablets given me appear to be ineffective so the worry goes on.

                                        Whatever, I pray for your wife and trust she will be cleared of this scourge. All I say is, get whatever treatment /surgery is required to eradicate / mininise spread. God speed, Wally

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