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Newly diagnosed, uninsured, is Sentinel Node Biopsy worthwhile?

Forums General Melanoma Community Newly diagnosed, uninsured, is Sentinel Node Biopsy worthwhile?

  • Post
    Matt Durfee
    Participant

      Hey all,

       

        I'm a 33 year old male living in Albany, NY.  I have been newly diagnosed with a malignant melanoma on my left calf, at the site of a large mole I've had for many years.  It seemed bigger than I remembered it a few months back and after scheduling a biopsy with a dermatologist, I've been referred to a plastic surgeon who's scheduled for a wide excision in their office in just over a week or so.  I'm having a hard time deciding about a Sentinel Node Biopsy at the time of excision.  

        I will preface any clinical info about the melanoma itself with this: I'm a musician who works part-time in the food-service industry who has been uninsured for many years, and without a primary doctor to turn to for advice on this.  

         I feel pretty comfortable with both the dermatologist and the plastic surgeon, but I don't think either of them are melanoma specialists (and I don't say that to demean their capabilities, just that both of them work at practices that are more cosmetic than medically drivien).  

         The clinical test results (which I'll post for reference here) seem to mostly point to a SNB being unnecessary, but the plastic surgeon mentioned a couple of times that that b/c I'm young, it would be something to consider (I've read that for people under 40 with malignant mel., SNB is recommended).  The plastic surgeon (who, of course, I would never expect to give a definitive "yes you should" or "no, you shouldn't" answer to) said that if he were in my position, he would consider having it done as the Breslow thickness is close to the range they would recommend testing for anyway.  In his own words, he's "on the fence" about it.  He also mentioned that complications, possibly long-term, can occur with node removal, such as fluid pooling in areas associated with whatever lymph they remove.

       

        Here are some of the clinical details

         White male, 33 years old, smoker

         Mel. Location: Left Calf

        Type: superficial spreading

        Breslow Thickness: 0.88mm

        Clark level: 3

        Mitotic Rate: 1/mm2

        Vertical growth phase present

        No ulceration, no regression, no microsatellitosis, no angiolymphatic invasion, no neurotropism

        TIL's: non-brisk

        Precursor lesion: present, intradermal nevus

        Pathologic stage: T1b NxMx

        No family history

       

        Can anybody argue for or against a SNB in this context?  I feel reassured that the thickness of the tumor is in the low range, but knowing how long the spot has been on me and NOT knowing exactly how long it has been cancerous has me a little stressed about making the desicion, and wondering if anybody has any wisdom to impart concerning low-stage diagnosis and the desicion to go ahead with or skip the SNB.

         I mention again here that I'm uninsured.  An in-office wide excision of the mole (I don't have the exact number here, but I think the dermatologist said 16mm across at the widest point) will run about $1500 out of pocket at the plastic surgeon, and uninsured hospital bills associated with a SNB will be far more than that I'm sure.  I realize there is no price to put on your health, but I earn just a few hundred dollars over any kind of Medicaid assistance levels, working for a small mom-and-pop shop that hasn't been able to raise my wages in any meaningful way in over 5 years due to their own financial struggles, and while I'd be GREATLY, GREATLY relieved to find a node biopsy returned a negative diagnosis, I'd be hit pretty hard in the purse if I raked up several thousand dollars (I'm guessing at least?) for the sake of the knowing…

        For the most part, the clinical results say SNB wouldn't be needed, but I've become a bit worried that some of the constantly feeling run down and almost sick all the time isn't just a reflection of my lifestyle, but possibly indicitave of something else.  If I understand correctly, you have to decide before they remove the melanoma otherwise they can't pinpoint the lymph associated with it before t, which is a tough desicion to make quickly.

         So a few quick questions and then I'll wrap up with hopes of getting some help from what seems to be a great community of supportive folks:

         Why is SNB reccomended for people under 40 even if the initial biopsy results and clinical info seem to point to not needing it?  Is it because they have better resilience to removal of a node, or is it because lymph node cancer can build for longer periods of time in young people before they start noticing it, hence the idea of catching it early?  I didn't get to ask the plastic surgeon about that b/c I forgot, not b/c he wasn't attentive to my questions.

          How often do people experience permanant or long term complications based on the removal of a lymph-node for the purpose of a SNB?  I've heard that fluid draining can be an issue after removal, and I wonder what kind of long term that in itself needs.  Do you need to regularly drain fluids in a medical environment for areas affected by a lost node, or will being active and on your feet all the time take care of itself naturally?  Does anybody have any stories about this, good or bad?

         Should I consider a second opinion at this point?  I obviously want this thing to come off ASAP, but I'm wondering if someone with a bit more of specialty (melanoma specialists in Albany seem to be pretty few and far between) could be of better help in making this desicion.  I think that both docs that I've seen are very smart, capable men, and they've been quite patient with my questions, but again, neither are of them are my primary care physicians (I don't have one at this point and have used a medical clinic in downtown Albany for many years) with any knowledge of past health history, etc…

         Any ideas on low-cost, sliding-scale, specialists in the upstate NY area would be more than welcome too!

         Thanks to anybody who may be able to offer any insight on this!

        

    Viewing 5 reply threads
    • Replies
        Janner
        Participant

          I had the exact same lesion — Clark's III / 0.88mm, mitotic rate of 1 back in 2001. They didn't recommend the SNB back then for me and I didn't have it.  So it's 13 years later and I am still stage IB.  (I did have two primaries previous to 2001, one in 1992 and one in 2000.  I did not have a SNB for either of those either although the SNB didn't exist in 1992).  I honestly haven't heard any doctors say do the SNB for those under 40.  One alternative to the SNB that might cost less (and is currently in clinical trials) is ultrasound monitoring of the lymph nodes.  Just throwing that out there because you are right, the SNB will be expensive.  General anesthesia and a hospital visit will not be cheap.

          In general, most people don't end up with lymphedema from just the SNB.  It is typically experienced more if you have a positive SNB and a complete lymph node dissection is done.  However, it can happen with the SNB although much more rare.

          You might see if one of the major melanoma centers in your general area (MSKCC, UPenn, Hopkins) would do a phone consult for a second opinion.  Probably cheaper than going in person.  Not sure how often that is done but it doesn't hurt to ask.  If they have a copy of your path report, there is no reason they couldn't give their opinion. 

          BTW, I was 37 when I was diagnosed with this third primary.  Also, the calf (extremities) are considered a lower risk area than on the head or trunk.  My first two were on lower legs, my .88mm one was on my back.

          Janner
          Participant

            I had the exact same lesion — Clark's III / 0.88mm, mitotic rate of 1 back in 2001. They didn't recommend the SNB back then for me and I didn't have it.  So it's 13 years later and I am still stage IB.  (I did have two primaries previous to 2001, one in 1992 and one in 2000.  I did not have a SNB for either of those either although the SNB didn't exist in 1992).  I honestly haven't heard any doctors say do the SNB for those under 40.  One alternative to the SNB that might cost less (and is currently in clinical trials) is ultrasound monitoring of the lymph nodes.  Just throwing that out there because you are right, the SNB will be expensive.  General anesthesia and a hospital visit will not be cheap.

            In general, most people don't end up with lymphedema from just the SNB.  It is typically experienced more if you have a positive SNB and a complete lymph node dissection is done.  However, it can happen with the SNB although much more rare.

            You might see if one of the major melanoma centers in your general area (MSKCC, UPenn, Hopkins) would do a phone consult for a second opinion.  Probably cheaper than going in person.  Not sure how often that is done but it doesn't hurt to ask.  If they have a copy of your path report, there is no reason they couldn't give their opinion. 

            BTW, I was 37 when I was diagnosed with this third primary.  Also, the calf (extremities) are considered a lower risk area than on the head or trunk.  My first two were on lower legs, my .88mm one was on my back.

              JamesH
              Participant
                If by any chance you took even one Viagra, Cialis or Levitra pill before you were diagnosed with melanoma you should contact an attorney. The drug companies may have known about the additional cancer risks and attorneys are ready to fight for you. Check out viagramelanomaattorney.com
                ed williams
                Participant

                  James your repeated post on Viagra and finding a lawyer over the last month are really in bad taste. I thought that lawyer's only chased people around in the movies not on Melanoma forum pages.

                  JerryfromFauq
                  Participant

                    Agree, Ed.

                    JerryfromFauq
                    Participant

                      Agree, Ed.

                      JerryfromFauq
                      Participant

                        Agree, Ed.

                        ed williams
                        Participant

                          James your repeated post on Viagra and finding a lawyer over the last month are really in bad taste. I thought that lawyer's only chased people around in the movies not on Melanoma forum pages.

                          ed williams
                          Participant

                            James your repeated post on Viagra and finding a lawyer over the last month are really in bad taste. I thought that lawyer's only chased people around in the movies not on Melanoma forum pages.

                            JamesH
                            Participant
                              If by any chance you took even one Viagra, Cialis or Levitra pill before you were diagnosed with melanoma you should contact an attorney. The drug companies may have known about the additional cancer risks and attorneys are ready to fight for you. Check out viagramelanomaattorney.com
                              JamesH
                              Participant
                                If by any chance you took even one Viagra, Cialis or Levitra pill before you were diagnosed with melanoma you should contact an attorney. The drug companies may have known about the additional cancer risks and attorneys are ready to fight for you. Check out viagramelanomaattorney.com
                              Janner
                              Participant

                                I had the exact same lesion — Clark's III / 0.88mm, mitotic rate of 1 back in 2001. They didn't recommend the SNB back then for me and I didn't have it.  So it's 13 years later and I am still stage IB.  (I did have two primaries previous to 2001, one in 1992 and one in 2000.  I did not have a SNB for either of those either although the SNB didn't exist in 1992).  I honestly haven't heard any doctors say do the SNB for those under 40.  One alternative to the SNB that might cost less (and is currently in clinical trials) is ultrasound monitoring of the lymph nodes.  Just throwing that out there because you are right, the SNB will be expensive.  General anesthesia and a hospital visit will not be cheap.

                                In general, most people don't end up with lymphedema from just the SNB.  It is typically experienced more if you have a positive SNB and a complete lymph node dissection is done.  However, it can happen with the SNB although much more rare.

                                You might see if one of the major melanoma centers in your general area (MSKCC, UPenn, Hopkins) would do a phone consult for a second opinion.  Probably cheaper than going in person.  Not sure how often that is done but it doesn't hurt to ask.  If they have a copy of your path report, there is no reason they couldn't give their opinion. 

                                BTW, I was 37 when I was diagnosed with this third primary.  Also, the calf (extremities) are considered a lower risk area than on the head or trunk.  My first two were on lower legs, my .88mm one was on my back.

                                JerryfromFauq
                                Participant

                                  If a primary is between .75 and 1 mm then the main things that i've read to indicte if one should have a SLN biopsy is the Mitosis Rate (Low  or high, and whether or not ulceration is present.  Neither of yours is really bad.

                                  JerryfromFauq
                                  Participant

                                    If a primary is between .75 and 1 mm then the main things that i've read to indicte if one should have a SLN biopsy is the Mitosis Rate (Low  or high, and whether or not ulceration is present.  Neither of yours is really bad.

                                      delora
                                      Participant

                                        Based on my circumstance, I would recommend a SNB.  I have never heard of those issues happening unless there was a total node disection. I had melonoma 14 years ago, thankfully thet did do a SNB, which turned out to be positive and a lifesaver.  Last fall, I had a reoccurance.  The Dr chose not to do a SNB because the node was deep in my abdomen.  I had the secong surgery; unfortunetly, four months later..Stage IV.  I will obviously always wonder if we had done that 2nd SNB that it wouldn't have spread so quickly.  With melanoma, I air on the side of caution.

                                         

                                        Also, someone else mentioned some specialists in your area.  I would definitely look into that.  Clinical trials are often free if you get to that point.  I'm in a clinical trial now.

                                         

                                        Good luck to you.  I'm also 38.  No one has mentioned age as a factor when considering SNB.

                                        delora

                                        delora
                                        Participant

                                          Based on my circumstance, I would recommend a SNB.  I have never heard of those issues happening unless there was a total node disection. I had melonoma 14 years ago, thankfully thet did do a SNB, which turned out to be positive and a lifesaver.  Last fall, I had a reoccurance.  The Dr chose not to do a SNB because the node was deep in my abdomen.  I had the secong surgery; unfortunetly, four months later..Stage IV.  I will obviously always wonder if we had done that 2nd SNB that it wouldn't have spread so quickly.  With melanoma, I air on the side of caution.

                                           

                                          Also, someone else mentioned some specialists in your area.  I would definitely look into that.  Clinical trials are often free if you get to that point.  I'm in a clinical trial now.

                                           

                                          Good luck to you.  I'm also 38.  No one has mentioned age as a factor when considering SNB.

                                          delora

                                          delora
                                          Participant

                                            Based on my circumstance, I would recommend a SNB.  I have never heard of those issues happening unless there was a total node disection. I had melonoma 14 years ago, thankfully thet did do a SNB, which turned out to be positive and a lifesaver.  Last fall, I had a reoccurance.  The Dr chose not to do a SNB because the node was deep in my abdomen.  I had the secong surgery; unfortunetly, four months later..Stage IV.  I will obviously always wonder if we had done that 2nd SNB that it wouldn't have spread so quickly.  With melanoma, I air on the side of caution.

                                             

                                            Also, someone else mentioned some specialists in your area.  I would definitely look into that.  Clinical trials are often free if you get to that point.  I'm in a clinical trial now.

                                             

                                            Good luck to you.  I'm also 38.  No one has mentioned age as a factor when considering SNB.

                                            delora

                                          JerryfromFauq
                                          Participant

                                            If a primary is between .75 and 1 mm then the main things that i've read to indicte if one should have a SLN biopsy is the Mitosis Rate (Low  or high, and whether or not ulceration is present.  Neither of yours is really bad.

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