Melanoma Stage 1A - WLE - do I really need this!?

Hi everyone. I’ve had reason over the years to lose a lot of confidence in the medical profession, particularly private medicine. I’ve been left to feel that we’re all part of a very efficient money-making machine where simple remedies have not been suggested but with which I have effectively self-cured.

 

So here I am with Stage 1A melanoma (0.7mm) inside my right leg above the ankle and ‘In Sit-up in the middle of my chest. The current biopsy wound on the leg (16mm x 12mm) is still not healed 2 months later.

 

Clear margins on both biopsies and now they want to cut (Wide Local Excisions) 1cm all around the 1A and 0.5cm around the in-situ. My surgeon has said he would check with his peers at a regular consultants meeting as to whether to do the smaller incision as they’ve already taken out 2/3 mm margins and this will be an operation to cut out the same. I’m sure the answer will be “don’t take any risks - the patient might sue you” and the medical profession will follow their rule book.

 

I’ve managed to get them to agree to delay any operation until early September as I have a complete summer of traveling - there is apparently “no evidence of how delaying the WLE effects patient outcome”. 

 

This has given me more time to consider whether I want this/these operations at all or whether I follow a number of other options included completely removing sugar from my diet which I have done since diagnosis at the end of May. In 2 months I’ve also lost 13KG - a very welcome ‘fringe-benefit’!

 

It just seems extreme to go through this procedure and to have a hole 1cm deep x 4.5cm radius cut into my leg ...as a precaution! Belt and braces is the phrase... but what are the stats on melanoma recurrence without the WLE?

 

With the skin graf /flap, it’s going to take 6 months to heal and I’m seriously considering not having it done. 

 

Of course, if I don’t get it done BUPA will probably not insure me as I haven’t followed medical recommendations......

 

Anyone got any thoughts, advice, experience here? 

 

Sorry for long post!

 

Thanks

 

Peter

  • Hi PeterDOB. Welcome to the forum.

    What does "In Sit-up in the middle of my chest." mean?  Do you have two melanomas, one on your leg and one on your chest? 

  • Hi,

    Firstly can I answer telemando's question - In sit up should read In-situ. If I read it correctly, Peter had two moles removed, one being Stage 1a and one 'In situ'.

    Peter, I can completely understand you thinking that surely the amount of surgery is 'over egging' the pudding, however, let me tell you my experience & those of others that I know. It won't surprise me if they come back and say that a WLE of the in-situ is not required because the initial surgery should have removed it all. In situ is contained in the top layer of skin and therefore doesn't spread. If they say they recommend a WLE on the in situ you would have every right to consider not having this procedure as it most likely will make no difference to your prognosis.

    A WLE on the Stage 1a is a different thing altogether. I know it's only one step deeper than an In situ but there is a much greater chance that it can spread years down the line if a WLE isn't carried out. I was diagnosed 1a in 1996 (long before melanoma diagnosis & it's treatment was so prolific). It was on my shin & was 0.7mm depth. I was due to have a WLE and skin graft but on admission my plastic surgeon (not my current one) was happy that a good margin had already been removed so I didn't need further surgery but it was my choice. Of course, I chose no further surgery.

    Fast forward 13 years and a lump appeared in my groin - I was diagnosed with Stage 3 melanoma in my groin & pelvic nodes which meant a full clearance of nodes from those areas - a huge surgery. Now, if I'd known what I know now, I would have still gone ahead with the WLE and skin graft because that's a walk in the park compared to what happened later - major surgery and 2 steps closer to an advanced prognosis. Of course, these days the choice is still yours, however the consultants ensure that the patient knows all the facts as to what can happen should a WLE not be carried out. I'm not the only one that this has happened to - I have several melanoma patient friends who also progressed from Stage 1a. Statistics show that only 5 - 7% of Stage 1a patients progress, however melanoma patients learn not to pay too much attention to stats as melanoma is the most unpredictable of cancers and can return at anytime, even 25 years later. 

    So, my advice is to think very carefully about your decision. A large amount of discomfort for a short amount of time now could help to prevent the chance of a major amount of discomfort, more surgical disfigurement, possible lymphoedema and infections and a major change (in some cases) to your lifestyle in the future - as well as being possibly Stage 4 and terminal. My treatment has always been with the NHS under a wonderful dermatologist and plastic surgeon (both literally saved my life but that's another story). I can't advise on how BUPA would react should you refuse the treatment, that is something you would have to discuss with them. 

    A lot to think about I know. Good luck and please let us know how things go,

    Angie (Stage 3 melanoma since 2009)

  • Hi Angie,

     

    Thanks very much for your quick reply which makes a lot of sense. Humbling to hear your story, I hope everything is OK now?

     

    I’ll hook up with you as a ‘friend’ and continue to pick your brain if you don’t mind although I think I’m pretty resigned to having the op now.

     

    I’ve managed to delay it until September (from biopsy results early June) and they can’t give me any data on how long this could be delayed ....I’ve got a lot of travelling to do to the U.S. (end September and early December ) and Japan (3 weeks from mid October) - I’m guessing there will be advice not to fly long haul after the op?

     

    Thanks again for stepping up for me - I can see you’ve been quite prolific on here over the years - very kind of you to want to help and support so many others.

     

    Best regards

     

    Peter

  •  

    Hi Peter,

    I think that Angie has given you a very open and honest opinion as to what you should choose to do. Have you asked your surgeon what the stats on melanoma recurrence without the WLE are? He should be able to give you this information before you have to decide.

    I have had 2 bouts of breast cancer in the past 10 years and 3 lesions which were questionable malignant melanoma in the past 1½ years (one on my face, just below my eye, one on my back and one on my leg, just above my ankle). My GP referred me to a dermatologist who dismissed the lesion on my back, but referred me to the plastic surgeon for the one on my face. While I was with the plastic surgeon, I showed him some other lesions and he decided to do a wide local excision on my face and my leg. Fortunately, both turned out to be benign, much to everyone's surprize.

    The lesion on my face cleared so well that you can hardly notice where it was taken from. Like your lesion, the one on my leg took 3 months to heal, along with a couple of courses of antiboiotics. I have just been back for my 3 month review and, was concerned at how much more obvious the scarring onmy leg still is. My surgeon seemd unconcerned and, advised that it was likely to take about a year to heal properly. I have also been advised to keep a check on these areas and told that they are highly likely to recur.

    Like Angie I have stuck to the NHS path with these, but I agree that private insurance, seems to give the medical profession a licence to print money. When we have it we are much more likely to be offered a surgical option instead of a simpler solution to a problem. As many of these lesions are caused by exposure to the the sun, be careful to keep yourself out of the sun, or covered up, when you are on your travels.

    Please let us know what you decide and, how you get on. We are always here for you.

    Kind regards,

    Jolamine

  • Hi Peter,

    I hope the surgeon can arrange a date that fits in with your flight plans. If a skin graft is needed there may be a delay on when you can fly long haul.

    I'm fine thanks - just coming up to my 10th anniversay of being Stage 3 and having No Evidence of Disease. I have my last check up at the end of the year before I would normally be discharged but I'm asking to be transferred to dermatology for annual checks (my old dermatologist has agreed to this) so I at least won't lose my 'safety net!'

    If I can be of any further help then just ask. Good luck,

    Angie