Hello and many thanks for your post,

I am sorry to learn of your situation, this must be a difficult time.

You may have seen this already, we have information about sentinel node biopsy (SNLB) which includes the advantages and disadvantages.

Some patients with 1B melanoma will be offered a SNLB depending on the size of the melanoma and whether there are risk factors that the cancer may have spread such as if there is broken skin on the melanoma (ulcer), if there are cancer cells in the lymph vessels or blood vessels of the melanoma or if the cells are dividing quickly.   

The role of sentinel node biopsy remains optional because it is not seen as a treatment. Although there is no evidence that this procedure improves overall survival from the disease it will provide more information about the melanoma and give doctors more guidance about what may happen. If you did have the test done and it was found the node was found to have cancer cells, this will change the stage of the melanoma to stage 3 which means you could have adjuvant treatment, to reduce the risk of the melanoma coming back.

A positive lymph node is found in 1 in 5 people (20%) who have the procedure done. You can read more about this on the Melanoma Focus website, they also have a helpline that you can contact at 0808 801 0777. 

I know you have already spoken with your specialist, but it may be worth having another chat with them as they know your situation and will be able to give you more clarification about what was found when they did the biopsy.

I hope this helps a little. Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care all the best,

Jemma

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)

I think you're logic is really good. It's improved survival rate vs risk of permanent side effects. That's always a trade-off. And the final decision should always be the patient's. But I personally would always follow the doctors advice, or seek a second opinion. 
Your question "What is the 5 year survival rate compared with a separate 100 Stage 1B patients who choose not to have the SNB?" is an excellent one. But the doctor may not have a meaningful answer. All cancers are different. He may not want to give you statistics that may feel, to him, like comparing apples with pears. But if the doctor can give you an estimate of survivals rates (with or without SNB), for your own cancer, based on his expertise and experience, then that would be very useful. 
You could even ask him 'If you were in my shoes, would you have the SNB?" but medics are sometimes reluctant to answer questions like that.

 

Harry, I have gone round this and researched as much as I can.  As you allude to, there is no black/white on this, there are too many variables.  The net is, there is no statement forthcoming that survival rate is affected by SLNB.  I apply logic, not feelings, in these situations and my conclusion therefore is to not have it.  No known outcome benefit vs potential (if low) surgical risk.

Another example of my applied logic was when I had a Basal cancer removed from my back some years ago.  The diagnostic excision removed the Basal cancer.  This was then reviewed with the medical team, who stated there was no risk from Basal cancer other than it might grow back if not fully removed, and asked if I would like a second WLE.  I stated that I did not see the point - either they had removed the whole cancer (which has been the case) or if not, it would grow back and they could do a full WLE then.  The doctor said my logic was flawless, but that most patients chose to have the second WLE.  I see this as a waste of NHS money, performing clinically unnecessary surgery. Some my argue that it makes some patients 'feel better', but should tax payers cover this cost?  Using the 'feel better' logic, why not perform SLNB on Melanomas under 1mm?  (A cost benefit line has to be drawn - which is what NICE tries to achieve.)

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

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

Not exactly on topic but my husband has been.diagnosed with Merkel cell carcinoma on his scalp After  a pet scan something showed in 2 lymph nodes neck Im assuming you like me are a proud Mancunion apologises if I'm not correct Our consultant advised a fine needle biopsy to check if the something was cancer It was and on Monday he is having a pre op.and a  consultation with the anesthetist to check that at 81 with atrial fibulation he's OK for general anaesthetic and possibly 5 hour surgery Surgery will involve removal of 2 lymph nodes the tumour and plastic surgery If its a no no tumour will.be removed but he will have radiotherapy which our consultant says is very effective When we meet him next week I'm going to raise lymph node removal versus radiotherapy I need to be sure that my husband gets the best treatment given his particular circumstances I can't stand by and accept without ensuring I have all the pros and cons

Best wishes 

Celia