HI,

Jemma has given great advice & the link to Melanoma Focus explains it really well.

From a personal perspective - I was 1b in 1996, long before a SLNB would have been offered. My melanoma didn't travel to the sentinel node but 13 years later a lump in my groin revealed melanoma had bypassed the sentinel node & lodged in an inguinal & a pelvic node. So I was in the 2% quoted on the Melanoma Focus link. I asked my dematologist (I was still under her after 13 years for other reasons) if a SLNB would have picked this up & she said no, because some bypass the sentinel node. So I lived in complete innocence for 13 years, not realising I wasn't cured as I thought.

So, the SLNB isn't a treatment but helps to accurately stage the patient. Yes, it's an invasive procedure & makes recovery longer but it depends if you are the type of person that wants to know now, categorically, what stage you are. So it helps some patients from a mental health point of view. Also, if found to be Stage 3, it means adjuvant drug treatment can be started earlier whereas, waiting for a lump to appear in the months or years ahead can cause further problems down the line. A full node clearance is a far more invasive treatment than a SLNB and it carries more chance of side effects (lymphoedema, cellulitis & seroma - I had all 3 2 weeks post surgery & lymphoedema for life). 

It really is a personal decision depending on what type of person you are - anxious & want to get it sorted & know exactly what you're dealing with asap and happy to have the SLNB along with the WLE, OR you prefer not to have the extra procedure & you are happy to wait & see if you are one of the unlucky 20% further down the road. Only you can decide. Have you asked - if you decide against the SLNB will they offer you regular ultrasounds of the node area? Some hospitals will do this and it may pick up any activity before it spreads further.

I have also sent you a friend request. If you accept it and you have any further questions etc we can then talk by private message.

Good luck with whatever choice you make,

Angie (Stage 3 melanoma patient since 2009)

Hi Angie, good to hear that despite everything you are doing pretty well some 15 years after your initial diagnosis.  I also had a Melanoma removed in 2009, Stage 1, 0.3mm, in the leg, with no recurrence.

To be honest, I don't quite follow your thinking.  I am told there is no survival benefit from taking the SLNB option, so why would I feel better taking this route.  Similarly, as you state, a clear SLNB diagnostic does not mean there has been no spread, so anyone undertaking a SLNB and the Lymph Nodes being clear should not believe that they are clear of the Melanoma, only that the probability is somewhat less.  If the patient is an anxious type of person, they will still likely worry, as clear SLNs does not guarantee they are clear.

FYI.  From discussions with my doctor and from what I have read, I believe that full node clearance is no longer the standard practise in the event of positive SLN; I believe adjuvent treatment is now practised.

As for ultrasound monitoring of the lymph nodes, this will be part of my ongoing monitoring.  From what I read it is useful, but again is not a definitive technique for spotting spread (none of the scanning techniques are wholly successful from what I understand).

The health service is learning every day, and treatments continue to change and improve.  In due course I will find out how this new Melanoma progresses (or not). In the meantime life will trundle along.

Kind regards and best wishes, Paul

Hi Angie, good to hear that despite everything you are doing pretty well some 15 years after your initial diagnosis.  I also had a Melanoma removed in 2009, Stage 1, 0.3mm, in the leg, with no recurrence.

To be honest, I don't quite follow your thinking.  I am told there is no survival benefit from taking the SLNB option, so why would I feel better taking this route.  Similarly, as you state, a clear SLNB diagnostic does not mean there has been no spread, so anyone undertaking a SLNB and the Lymph Nodes being clear should not believe that they are clear of the Melanoma, only that the probability is somewhat less.  If the patient is an anxious type of person, they will still likely worry, as clear SLNs does not guarantee they are clear.

FYI.  From discussions with my doctor and from what I have read, I believe that full node clearance is no longer the standard practise in the event of positive SLN; I believe adjuvent treatment is now practised.

As for ultrasound monitoring of the lymph nodes, this will be part of my ongoing monitoring.  From what I read it is useful, but again is not a definitive technique for spotting spread (none of the scanning techniques are wholly successful from what I understand).

The health service is learning every day, and treatments continue to change and improve.  In due course I will find out how this new Melanoma progresses (or not). In the meantime life will trundle along.

Kind regards and best wishes, Paul

Hi Paul,

Perhaps I didn't explain myself properly regarding survival benefit. Yes, the SLNB is not a treatment BUT, if 20% of patients with a positive SLNB start their adjuvant treatment quicker, they have a better chance of survival whereas someone who doesn't have the SLNB & then finds a swollen node some time later - their chances of having a better outcome are lower because of the speed of the treatment. Waiting until it's spread further (either nodes or organs) doesn't improve successful treatment. You will find over time that speed of diagnosis & treatment is far more important with melanoma than many other cancers. Also, melanoma is the most unpredictable of all cancers which throws up it's own problems.

At the moment they don't have the statistics regarding the 20% of positive SLNB patients who start adjuvant treatment quickly versus those who wait until they become Stage 3 & then receive treatment. Adjuvant treatment for Stage 3 patients was only available from September 2018 and for Stage 2 patients from last year. It takes several years to collect & publish the statistics so it will be a few years yet before we know if a SLNB, indirectly, helps the chance of successful treatment further down the line. Even consultants don't agree about the efficacy of the SLNB - some don't see the point whilst some are very positive about them. All you can do is see what you feel better choosing.

A full node clearance is no longer standard practice, however, many consultants still do them and then follow them up with adjuvant treatment. There is currently at least one study/trial looking at whether adjuvant treatment BEFORE or ALONGSIDE a full node clearance has a better outcome than after the clearance or adjuvant alone. Some consultants don't do a full clearance if melanoma is found in more than one nodal area, preferring to see if the adjuvant treatment will shrink the tumours. Mine was in my groin & pelvis - I recently asked my consultant, if I presented with the same today what would he do - he said try adjuvant first & only surgery if they don't respond whereas, if only found in one node he would do surgery & then adjuvant. That's the thing about consultants - they all differ & that's why sometimes our melanoma patients seek second opinions about treatment they've been offered. I believe the study re adjuvant treatment first or alongside full node clearance is showing promising results so far but it's early stages. 

I've seen how rapidly treatment has changed since being diagnosed Stage 1 28 years ago & then Stage 3 15 years ago to now & it's hard to keep up with sometimes. That's why our group has a wonderful advocate who is up to date with research etc across the UK and Europe. My dermatologist and plastic surgeon are leading figures in the field of melanoma (both are trustees of Melanoma Focus, give presentations at our annual Melanoma Patient Conference and my dermatologist (once the head of NICE for melanoma) now specialises in genetic melanoma versus UV caused melanoma). I'm just thankful that my surgeon did a full node clearance on me (before even successful drug trials were available) because I & a few other of my fellow Leeds patients are only here because of that surgery. It doesn't work for everyone but I'm forever grateful it worked for me.

Good luck & best wishes, Angie

Sorry Paul, I forgot to add - with regard to a clear SLNB not 100% guaranteeing a patient is clear. You are correct, but it 98% guarantees they are clear as only 2% find their melanoma had bypassed the sentinel node. 98% is better than nothing (says I who have been in two 2% clubs - 2% chance of a 0.7mm melanoma spreading and (unconnected) 2% chance of getting pancreatitis after an ERCP to remove a stone in my bile duct). I just wish my odds were as good to win the Lottery!

Hi Angie.  I am delighted that the treatment you have been receiving has been successful.

I do believe I did understand your views, but I don't see clear logic in them.  e.g. you state "if 20% of patients with a positive SLNB start their adjuvant treatment quicker, they have a better chance of survival whereas someone who doesn't have the SLNB & then finds a swollen node some time later "  then "it will be a few years yet before we know if a SLNB, indirectly, helps the chance of successful treatment".

I think you 'feel/think' that the SLNB route should be better, for all the reasons you suggest, but then recognise there could be unknowns (perhaps the Sentinel Lymph node has a protective effect??) that means in the future a different approach is adopted.

As you say "Even consultants don't agree about the efficacy of the SLNB - some don't see the point whilst some are very positive about them. All you can do is see what you feel better choosing." Which is exactly what I have heard from my doctor.  So, again, my logic is to take the unknown 'risk' of not having the SLNB avoiding the known 'low risk' of surgery.

Also reference your subsequent reply, There are no 'guarantees' relating to the 98% vs 2%, just differing probabilities.

Keep well, Paul

I just quote the stats given by Melanoma Focus Paul. What matters is that you make the choice that is best for you. It's good to learn all you can to make a well informed choice. As my dermatologist always says 'Don't be afraid to be your own advocate. Some consultants may not like it, but you have every right to fight for what you believe to be best for you.' Good luck, Angie