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Danielle T

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      Danielle T
      Participant
        Hi, I had a similar event. Stage 0 for one, then many years later a stage 1a. The stage 1a was sent for genetic testing. The genetic testing I had done tests certain genetic markers to group the melanoma into one of four groups from low risk to high risk. If high risk, your doctor could choose to check your lymph nodes or add extra surveillance, but the test results alone do not change your stage.

        You should ask your doctor what company is doing the genetic testing and you can likely find their website and get stats and sample result reports

        If you’d like more info I’m happy to share.

        By the way, my genetic test came back as the lowest risk.

        Danielle T
        Participant
          I have had 3 melanomas – one in situ, one stage T1a spitzoid type, and one in situ (was labeled probable melanoma). My only advice is to stay on top of your skin exams and take lots of pictures of your skin. It’s great that yours were caught as in situ
          Danielle T
          Participant
            I’ve had 3 primaries. A spitzoid melanoma in
            2011 that was in situ. Then, in 2020 I had two more, another spitz melanoma but .5mm invasive, then a nevoid melanoma in situ.
            I do have many moles and family history of moles, but I am the only one in family with melanoma. I have been hesitant to have genetic testing bc feel like the info will just make me anxious and not change my care.
            I also find it odd that I’ve had three melanoma with 2 different very rare subtypes.
            Danielle T
            Participant
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              Danielle T
              Participant
                Jammer my story is much like yours but I’m more newly into it.
                first melanoma in-situ in 2011, T1a in dec 2020 and another in situ in jan 2021. The odd thing is all of them were supposedly rare subtypes – two spitzoid and one nevoid.
                I see my dermatologist every 3 months, I take my own pictures monthly and had professional pictures done as well.
                I of course practice sun safety but I can’t achieve sun avoidance.
                Any advice for me to not have another melanoma? Did you get genetic tested?
                Danielle T
                Participant
                  The WLE area will be very sore especially the first couple of days. I was able to return to work quickly from home. With this being on his face, it would be beneficial if he could work from home until the stitches are out. Make sure you keep the WLE site moist to reduce scarring with the antibiotic you are given and then vasoline.
                  good luck tomorrow
                  Danielle T
                  Participant
                    The depth is what matters most and your melanoma is thin. The odds are you won’t have to deal with this again.
                    you should still get the bump on your breast checked but I don’t think you should be worried it’s melanoma.
                    good luck
                    Danielle T
                    Participant
                      Hi, I’ve had a spitzoid melanoma. My research has said if under 20 years old moles with spitzoid features are usually benign but over 20 years old they are not. It is very hard to determine the malignancy potential and spitzoid cells can move to the lymph glands and still not have malignancy potential.

                      your dermatologist can send the mole to Castle Bioscience – they have a specific test to determine whether borderline moles have a malignant potential. They will work with you and your insurance to ensure it is not high out of pocket expense.
                      you can also ask your dermatologist to send the mole for a second opinion to Mayo Clinic.

                      but it sounds like based on his age and they are saying just spitzoid features (do not mention melanoma) the additional excision is all that needs to be done.

                       

                      Danielle T
                      Participant
                        All of these suggestions are great. The only thing I’d add is I start my day with sun screen – as soon as I’m out of my morning shower. I feel it helps vs waiting once you are already outside.
                        I also try to seek shade as much as possible but try not to feel guilty if I am in the sun doing an activity I love.
                        this is definitely personal preference, but if being pale in the summer causes you discomfort you could try a self tanning lotion or spray.
                        My biggest melanoma problem area is my back so I try to always wear a sun shirt. I like both Coolio and Lands end.
                        Danielle T
                        Participant
                          I’m sorry you’ve had to join this community. I’ve had three primaries so I can relate on how it feels when you aren’t sure of your diagnosis. However, like you said with a thin melanoma the statistics are on your side to be cured after your WLE.  I’d try to stay off of the internet. I will tell you it gets better with time. Hang in there.
                          Danielle T
                          Participant
                            <p style=”text-align: left;”>I am unfortunately new to this forum so am not an ‘old’ friend. But, I am so sorry about your sweet son. Melanoma is just not fair.  I will pray for his peaceful transition.</p>
                            Danielle T
                            Participant
                              I’m in the Philadelphia area.

                              You definitely need a copy of your pathology reports.

                              The genetic test purpose is 1) god forbid if your melanoma was to ever progress this will inform doctors on what treatment is most likely to work 2) for our situation now it reduces  any gray area related to a pathology report.  If you do some research, you will find that it’s not that straight forward to diagnose a melanoma. I found some articles that said even if you gave the same pathologist the same lesion twice they often come up with a different diagnosis. As a result, doctors tend to be more aggressive – so if it might be melanoma they’d prefer to say melanoma so you get the best treatment. 3) I’m not sure if this is true for every melanoma but for spitzoids there’s a range of malignancy. The genetic test can tell you where your lesion falls in that range.  My understanding is dysplastic moles by definition share attributes with melanoma. It should help add clarity to your diagnosis. It will also inform you on whether or not you have familial melanoma, which comes with other cancer risks. I can let you know when I get mine back and how helpful (or not) it was. I’m hoping for results that show the legion is actually low risk.

                              I am praying for both of us to happily stay in stage 1 and never experience another primary. I know it could be so much worse but there’s still a lot of anxiety that comes with multiple primaries and thinking every spot on your skin is potentially one that could kill us.

                              Danielle T
                              Participant
                                Your case is definitely very concerning as melanoma patients feel security with no evolution.
                                What type of melanoma are they saying these lesions are? Certain kinds like nevoid and spitzoid are very difficult to identify versus a benign lesion as they have characteristics of both and doctors (rightly so) tend to be more aggressive. I would ask if your dermatologist is willing to send one to genetic testing. I am actually waiting for the genetic results of a T1a spitzoid melanoma as there was uncertainty in its malignant potential and the genetic test will tell us more definitely. I’ve come to learn dermapathology is an art and science.  My melanoma had significant changes though.  The genetic test costs $8,000 dollars and insurance doesn’t always pay but somehow my dermatologist convinced them to do it for free. I’m assuming it’s being used as a learning experience for them too.
                                I am similar to you with 3 melanomas:

                                spitzoid in-situ 2011

                                spitzoid T1a and nevoid in-situ in Dec 2020.

                                all had changes.

                                By the way, the tool you can buy is not an actual dermascope but it’s amazing how much you can see.
                                The $11 one was super eyes macro lens and the $100 was dermlite. The main difference is dermlite comes with a light.

                                there’s not a lot of people on here who comment on stage 1 cases so I appreciate finding someone like you on here

                                Danielle T
                                Participant
                                  I am assuming they aren’t changing enough that you can tell from a picture but they are changing from a dermascope perspective. I would recommend going onto Amazon and purchasing a tool you can use at home that will take magnified / lighted images of your moles – the tool can attach to your I-phone. That way you can take up close pictures monthly of the moles you are concerned about and see if they change in any way.  I bought one initially for $11 which worked fine but did upgrade to a $100 one recently.

                                  Have you asked your dermatologist what they think? What prompted them to remove the moles if they had not changed?

                                  Danielle T
                                  Participant
                                    I apologize for not responding to you sooner. I appreciate you taking so much time to answer my question. I go back and forth between being so frustrated with my scars to being thankful. Your words and knowledge are very much appreciated.
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