New SLNB post for PTgal and any others in need

Hey Edster!

I think the questions you pose are good ones.  And as I noted in my comments…the data of better outcomes by delaying SLNB by 40+ days…is certainly counter intuitive.  Alternatively, there has been a good deal of data noting that a delay of 1-2 months before SLNB has not adversely affected outcomes.  I had BOTH my SLNB's within 2-3 weeks of my cutaneous biopsy results back in 2003 and 2007. (Maybe that's why I progressed to Stage IV!!  Ha!  Who knows?)   In theory, one would assume that researchers took the time frame of the patient's diagnosis and treatment changes into account.  However, I can't be sure about that.  One other factor to be considered is that adjuvant treatment for NED Stage III or IV patients is a relatively new thing…and many of these peeps would not have had treatment unless they had active disease.  But….it is still an important point to think about when we know the landscape of melanoma treatment has changed so radically just since 2011.  The complete article is in English if you have a mere $39.95!  Hee hee!  https://link.springer.com/article/10.1684/ejd.2017.3065  

I don't think that this article is enough to change current practice…though it is something researchers should think about.  Mostly, it should be very reassuring to those who find themselves…for whatever reason…going longer than they like before having their SNLB.  I know I wanted the suckers out of there!  I  have worked with many here on this forum and via my blog going nutters about any delay, so this should help provide a bit of prospective.

For another point relative to that post…I don't really agree with the new guidelines for SNLB.  For instance, I would still not technically qualify…as my first primary was only 0.61mm with no ulceration.  Yet, I had a positive node, developed a second primary 4 years later, and developed brain and lung mets 3 years after that.  NOT THAT EVERYONE DOES THIS!!!!!!!!!!!!!!!!   But, the more important point is that the positive node, took me from Stage 1b to Stage IIIa in one fell swoop.  Back then – it didn't matter very much.  There was no treatment.  TODAY, it makes a world of difference, because as you pointed out – ADJUVANT care!!!  Soooooo important and now thankfully exists and is FDA approved.

Additionally, the factors that make a difference for a thin melanoma are younger age (less than 40), mitotic rate (which folks don't really look at any more), higher Clark level, and sex.  Ultimately, guidelines are JUST guidelines.  A framework for a starting point…not the end all be all.  It remains very rare for thin melanomas to have lymph node involvement.  However, with a 5% chance of that positive node, now that we have various adjuvant treatment options…finding out if you are in that 5% makes a bigger difference.  

And as to the most important part of your comment – HAPPY 100th TREATMENT day, to you!!!!  I would totally have baked you a cake and had a Timmy with you!!  Salud!! You rock!!  Love you bunches…from a fairly cold Chatt town.  (Do I get to claim being cold if it's 34 degrees????) – c

There are at least two key points that you addressed, Janner:

1.  Many (in fact, MOST!!!) folks with a thin melanoma NEVER progress and live fabulous, long lives with no further issue with melanoma no matter if they do an SLNB (sentinel lymph node biopsy),  much less a CLND (complete lymph node dissection).

2.  We now have a ton of data that confirms that all patients respond best to treatment with the least possible disease burden/tumor volume.

First and foremost, especially now (unlike when I was diagnosed in 2003) given the fact that there ARE adjuvant treatment options, it seems super important to determine if you are dealing with Stage I melanoma vs Stage III.  If you ARE Stage III and do not know it….you do not even get to have the discussion of whether or not to do a CLND or adjuvant treatment.  There are many reasons not to do either one of those….but if you don't know you have a positive node…you are not even having the conversation.  Likewise, monitoring for a Stage I melanoma patient is very different from that of a Stage III patient.  Insurance companies will not cover scans you and your doc may want you to have down the road if Stage III status was not documented through SNLB.  Additionally, though the risk of a positive node in thin melanomas is about 5%, many folks will feel much more reassured to KNOW that their SNLB was in fact, NEGATIVE.

From a public health perspective, you have to balance the risk, expense and benefit of 19 negative SNLB's against the risk, expense and benefit of the one positive result in this population of 20 patients with thin melanomas.  I would argue that the benefit of knowing that you the one Stage III patient, out of those 20 peeps, outweighs the risk and cost experienced by the 19 who learn that they are not Stage III.  However, that is a subjective decision and hinges on the individual's tolerance for risk.

Using my own case as an example, I think the guidelines are not specific enough.  Given the particulars of my situation (being younger than 40, etc) and all the many melanoma facts I've learned over these almost 18 years, I suspect that my risk of a positive node was more like 10-15% than the 5% that is touted.  While knowing I had a positive node and it's removal didn't do anything for me in 2003 or 2007 given the barren landscape of melanoma treatment options at that time….if I were to gain that information TODAY, it would make a world of difference in my treatment options and possibly the course of my disease.  Just imagine, if in 2003 after a 0.61mm cutaneous lesion and a positive node I had had adjuvant nivolumab.  Perhaps I would not have gone on to develop a second primary lesion and avoided all the fun and games of brain and lung mets.  As it is, I had nivo after being rendered NED with surgery and radiation (last dose in June of 2013) and thankfully have remained NED.  And to answer your specific question, I think YES!, learning you have a positive node, despite a thin cutaneous lesion, would make a difference for a significant number of individuals, given current treatment options and the fact that waiting for a clinically apparent disease occurrence is much worse prognostically.

I am a firm believer that knowledge is power.  I have learned through personal and shared experience with other melanoma patients that melanoma sucks great big green hairy wizard balls and is unpredictable at best.  Given the craziness that is melanoma, deciding what is the best treatment road to travel must be rooted in knowledge and personal approach to risk and life.  We ratties have endured what we have to save ourselves.  But, we also hope that individuals and science learn from us as well.  I don't want folks to endure what I have if there is ANY way to prevent it.  And…in melanoma world today….there just might be.

I, FINALLY, am feeling quite hopeful about the future for melanoma peeps.  May 2018 be bright and beautiful for us all…and especially, you, Janner.  Your knowledge, reassurance and thought provoking responses have been a blessing to ever so many folks over all these years, my friend.  I wish you well.  c

No, I've never been tested for any genetic stuff or mutations other than BRAF…unless it was done in my trial (some was) and as such, sadly, I am not privy to it. (If I recur I would certainly look at that.)

I don't know whether adjuvant immunotherapy would prevent someone like yourself from developing additional primary lesions.  My gut says it would, and as more of us with Stage III and IV disease are treated with immunotherapy as adjuvant and fail to develop additional lesions (cutaneous or otherwise) that would lend some evidence toward my feeling.  However, as adjuvant immunotherapy remains super new…and folks without measureable disease have to be followed a loooooong time to demonstrate a return on investment….real data that could truly answer that question is far from existing.

I have remained silent on most of the SLNB discussions on this board over the years because I am fully aware that I'm the weirdo out of the 20 and don't want to frighten folks!  Because:

1.  Most folks with thin lesions will NEVER turn out like me!!!

2.  When there were no effective treatments (interferon) or only treatments laden with a high risk of side effects (ipi) there was little argument for doing it as risk was often deemed higher than benefit. 

But…there are many folks who could be more easily convinced to go on with their lives if we COULD tell them they did NOT have disease in a node and others who might find nivo a treatment option they can get behind.  To your point regarding choice ~ ABSOLUTELY!!!!  SLNB (and certainly CLND) is NOT for everyone.  There are a zillion factors to consider before doing an SLNB:  age, health, other disease complications, the desire or tolerance for additional treatment even if it does demonstrate a positive node.  If you can live with not knowing if there is a positive node present or if you don't want to seek treatment beyond observation – there is no reason in the world to do a SLNB.  But….if you want to know, if you want to seek adjuvant treatment if your node is positive…I think it should be the patient's choice.  Yes…I know that is a bit of a pipe dream.  But, hey!  Really effective treatment for melanoma was a pipe dream when I started this journey!  Thank goodness things keep advancing, even if it makes old timers like us have new concepts and possibilites to wrap our heads around!!  

If I do ever run across any data re immunotherapy and folks with multiple primaries….you'll be the first to know!!  yours, c