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Just got diagnosed with Melanoma

Forums Cutaneous Melanoma Community Just got diagnosed with Melanoma

  • Post
    msnow
    Participant

      Hello, hope for some insight for a superficial spreading melanoma.  Two weeks ago had this suspicious mole removed by plastic surgeon by excision.  Trying to gather as much info to ask my surgeon at follow up appointment.                                                                Lab results:                                                               Clark’s level III with Breslow thickness of 0.7mm.  Epidermal ulceration not identified.                           Mitotic rate 1/mm.                                                                                                                                                  Margins clear.                                                               Lab staging is pT1a pnx.  

      Surgeon wants to do another excision to get 10mm margins.  She wrote on report staging melanoma instu and did not mention SLN Biopsy.  Upon initial research my lab results suggest stage 1a.  Should I push for SNL Biopsy and what is significance of non brisk results? Thank you very much for any help and information!  

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    • Replies
        Janner
        Participant

          Stage 1a as you thought.  As for the SLNB, you're on the borderline.  It used to be the cutoff was 1mm but now it is stage 1b or .8mm.  I'm sure you could go either way.  The SLNB is sugery with it's own complications (requiring general anesthesia) where the WLE can be an office procedure.  You're choice.  Non-brisk means the body really hasn't come in to fight the lesion but – at this time – has no real prognostic value.  I didn't have a SLNB for any of my lesions (deepest .88mm) because my institution used 1mm.  That was 17 years ago and I'm still stage 1b.  I'm totally good with that but you have to do what is right for you.  The excision with 1cm margins is standard.

            msnow
            Participant

              Thanks Janner, appreciate your reply.  With stage 1a should I be worried cancer cells have traveled or would clear margins with no evidence of lymph nodes affected in my lab report be enough peace of mind?  

              Janner
              Participant

                Clear margins cannot guarantee lymph nodes are not affected.  Your lesion is considered low risk but not no risk.  There are a small percentage of people who will have positive nodes.  However, a negative SLNB cannot guarantee you won't have further spread either.  There are again a small percentage of people who progress with a negative SLNB.  SLNB are not recommended for lesions with your depth because statistically the number of people with positive nodes doesn't justify the risk in performing the procedure.

                stars
                Participant

                  I would have thought that mitosis 1/mm would make you a stage 1b. As for SLNB, in Australia it's 1mm or 0.75mm if any concerning features, and you don't meet either criteria so no. It is a little close to the line so you could do it for peace of mind, but keep in mind SLNB is a staging tool only, not any kind of 'cure'. It's simply a more in-depth staging method than the usual wide level excision (WLE). In your shoes, I would not opt for an SLNB as your melanoma does not meet the fairly stringent criteria for one.

                  Janner
                  Participant

                    Staging update:  Staging changed in 2018 and stage 1a is defined as tumors < 0.8mm without ulceration.  Mitotic rate is no longer used as a staging criteria.

                  MMH
                  Participant

                    Hello to you. I am sorry you are here, but you are in good company.  I had a .6mm removed in August and struggled with next steps. My decision was made easier by the fact that my dermatologist (Johns Hopkins) did not provide an option of SLNB for my depth/characteristics. While I worry daily, I have to follow their lead and assume that they know what they are doing. Easier said than done, but if you are seeing a melanoma specialist that you trust, that will help you reach a decision. All the best to you, and keep us posted.    

                      msnow
                      Participant

                        Thank you all for your positive thoughts and insightful info!  This is all new territory for me and my family as there is no family history of melanoma.  Along with the importance of having a melanoma specialist, what additional things can I do to be proactive and watch for recurrence?  And would this be a new skin lesion or lymph nodes swelling etc?  I plan on gathering as much knowledge as possible, keeping up on appointments and trying to live my life without too much anxiety…I’m sure this will be easier said than done.  Thanks again for all the support.  

                        Janner
                        Participant

                          Your risk of a recurrence (depending on where you read) is generally less than 10%.  Probably lower but just generalizing.  Your risk of another primary lesion is about 10%. 

                          Ask your derm to tell you how to palpate the most likely lymph node basin to check for regional metastasis.  Then do a monthly skin and lymph node exam.  Continue to watch your skin for the ugly duckling or new and changing.  Recent studies show melanoma arises on new lesions 75% of the time, 25% on existing lesions.  Be sun safe and live life!

                          MMH
                          Participant

                            I asked the same exact questions as you are asking now.  It is difficult to do nothing, so better to feel like we are doing something. Do everything Janner already mentioned, and keep your dialogue going with your doctor so you always feel like you have a team. My melanoma was on my right arm and I was told to check my right underarm lymph nodes on an ongoing basis.  Ask your doctor which area to check. Others on this site have said that their doctors agreed to do ultrasounds of the potentially impacted lymph node region periodically.  My doctor declined unfortunately, as that is not their protocol.  I do weekly self-checks, on a weekday so if there is enlargement I can get right in to my doctor for a second look.  (At first I was doing them daily and driving myself insane.)  In addition to my 3-month dermatology skin checks, my primary doctor says I should come in every 6 months and she will feel for enlargement. Most importantly, I see a therapist who is trying to help me move forward mentally while still being vigilant (a tough balancing act).  Again, all the best to you and please keep us posted.  

                            MMH
                            Participant

                              I asked the same exact questions as you are asking now. It is difficult to do nothing, so better to feel like we are doing something. Do everything Janner already mentioned, and keep your dialogue going with your doctor so you always feel like you have a team. My melanoma was on my right upper arm and I was told to check my right underarm lymph nodes on an ongoing basis.  Ask your doctor which area to check.  Others on this site have said that their doctors agreed to do ultrasounds of the potentially impacted lymph node region periodically.  My doctor declined unfortunately, as that is not their protocol.  I do wekkly self-checks, on a weekday so if there is enlargement I can get right to my doctor for a second look.  (At first I was doing them daily and driving myself insane.)   In addition to my 3-month dermatology skin and lymph node checks, my primary doctor says I should come in every 6 months and she will feel for enlargement.  Most importantly, I now see a therapist who is trying to help me move forward mentally while still being vigilant (a tough balancing act).  In reality, there is nothing we can do but wait and see, but that is so, so tough.  Again, all the best to you and please keep us posted.  

                            MelanomaMike
                            Participant
                              Well, welcome to the club, we dont have jackets but we do have decent, VERY knowledgeable folks here to help you through, im NOT one of those “smarty mcmatry’s” but thank God their here! You will find comfort here..stay deligent & keep us informed, the more we know the more we can help!…
                              bjeans
                              Participant

                                I’m sorry you’re going through this, but found the right place to ask questions and get support. I’d add only two things: 1) Don’t assume every doctor is right; advocate for yourself and if something bugs you, run it by the folks here, and don’t hesitate to get a second opinion. 2) Stay off the internet other than tried and true places. Tons of melanoma info is outdated or wacky. 

                                And back to #1, I’m not referring to your current doctor. I don’t know enough to have an opinion, just talking in general. I’m the wife, not the patient, and my husband and I are extremely pleased at the care he’s getting (in VA, btw), but if something changed and he had to make a tough decision, that’s when we’d probably seek out a second opinion from a big dog. 

                                Hang in there – 

                                Beth the Wife 

                                  msnow
                                  Participant

                                    Thanks you all for your kindness and support!  Just trying to wrap my mind from online stories of stage 1a developing into stage IV within a couple years.  Are these mostly new legions or cells traveling from the primary legion stage 1a?  The past two days I have consulted with my dermatologist, a melanoma surgeon and two oncologists wjo soecializes in melanomas.  Wondering why when I ask them about possible chance of future mastitis from this current legion they focus solely on explaining about possibility of another legion reoccurrence.  If mastitis reoccurrence is possible then why would those in 1a, like me, not be offered lymph node testing???  I’m confused!  Also, already had my legion excised staged 1a with clear margins.  Going to have another excision with larger margins, should I expect the second lab results upstaging my 1a to a high stage?  Glad to have found you all…..thanks again!  

                                    msnow
                                    Participant

                                      Thanks you all for your kindness and support!  Just trying to wrap my mind from online stories of stage 1a developing into stage IV within a couple years.  Are these mostly new legions or cells traveling from the primary legion stage 1a?  The past two days I have consulted with my dermatologist, a melanoma surgeon and two oncologists who soecializes in melanomas.  Wondering why when I ask them about possible chance of future mastitis from this current legion they focus solely on explaining about possibility of another legion reoccurrence, hence importance of three month checks.  If mastitis reoccurrence is possible then why would those in 1a, like me, not be offered lymph node testing???  I’m confused!  Also, already had my legion excised staged 1a with clear margins.  Going to have another excision with larger margins, should I expect the second lab results upstaging my 1a to a high stage?  Glad to have found you all…..thanks again!  

                                      Janner
                                      Participant

                                        Doctors discuss a new lesion because the odds are higher for you to have a new primary than they are for you to have a metastasis of your stage 1a lesion.  Since your original biopsy had clean margins, the WLE will not change your staging.  The WLE is done to try and make sure that any rogue cells are removed that might have escaped the original biopsy.  Surgery is still the best option and most likely all of your melanoma has been removed.  And as I said before, the odds are so low of having a positive SNB that the benefit is not there.  You make 98% of the people have unnecessary surgery for the 2% who may have a positive lymph node.  That's why it isn't offered.  But that's why palpating your lymph node basin makes sense at your 3 month visits (as well as home exams).  The vast majority of stage 1a folks never deal with melanoma again.  Beside the newly diagnosed, people who end up on this site are the "exceptions" who end up having melanoma return.  This site is NOT representative of the real world.

                                        msnow
                                        Participant

                                          Thanks for the great info.  In regard to monthly self checks of lymph nodes do I specially check certain areas more closely or all lymph node areas?  Trying to find research on possible lymph nodes affected by original lesion on upper left shoulder. 

                                           

                                          msnow
                                          Participant

                                            Thanks for the great info.  In regard to monthly self checks of lymph nodes do I specially check certain areas more closely or all lymph node areas?  Trying to find research on possible lymph nodes affected by original lesion on upper left shoulder. 

                                             

                                            Janner
                                            Participant

                                              Ask your doctor which basins to check – but most likely the left armpit, left clavicle and left neck.  Neck nodes swell more than other nodes from any type of trauma/infection so you need to be a bit more forgiving and patient when checking those nodes.  In addition, any trauma (including your surgeries) can cause these nodes to swell.  Swollen nodes don't have to be melanoma but nodes that stay swollen for several months should be checked.  It can take at least a month for neck nodes to go back to normal after a cold.  In addition, some nodes may never return to their normal size – they are called reactive nodes.  Enlarge and stay that way and are totally benign.  You can always compare left side to right side.  But again, specifically ask your doctor for their guidance in how to check and where to check.

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