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  • #22544
    Lilly1982
    Participant

    Hello all,

    I had a mole off about 3 weeks ago and had the results back last Friday.

    I’ve been told it’s a superficial spreading melanoma which was located on my back. All I know is it measures 1.2mm thick.

    I’m due to see my consultant tomorrow and was wondering if you could help to suggest any questions I should ask.

    Also having done some research on snb it would appear that it is suggested for tumours measuring between 1mm and 4mm thick so as far as I’m concerned I feel that I should be given one. What are people’s thoughts and experiences?

    Many thanks

    Laura

    #67352
    Lilly1982
    Participant

    So I saw my consultant the other day and in short where I live in the UK there is no funding for the snb which is madness. The crazy thing is if I lived 10 miles west I would get it in the next county how does that make sense?

    So I’ve requested one and I will be discussed at the multi skilled meeting on Tuesday and hope to be referred out of county. So keep all crossed for me.

    If I don’t get the funding I will have the WLE. So will keep you posted.

    #67353
    Catherine Poole
    Keymaster

    Yes, it would seem like madness, especially here, where some folks get SNLB at much lower depths. You are at the standard depth that it is recommended. Good for you educating yourself and being a great advocate for yourself.

    #67354
    Rojam
    Participant

    hi laura,

    sorry to hear your news. hope youre doing ok?

    you said you live in the uk. do you live in england?

    just wondering who is blocking your slnb? is it your gp or your hospital?

    my local hospital didnt deal with my melanoma very well and so i did some research, picked a couple of specialist melanoma nhs hospitals, went to my gp who looked at waiting times etc and asked for a referral there. im sure it was under the patient pathway where you can choose where you are seen. i was seen within a week. its the nice gudelines but im not sure how this works outside of england.

    as you probably know the slnb is only an indicator but if youre entitled to it under the nhs and you want it then you should get it done.

    i hope you manage to get seen at a good hospital.

    take care

    jane

    #67355
    Lilly1982
    Participant

    Hi Jane,

    Thank you for your reply it means a lot.

    I live in West Sussex, England and have been told by my consultant that they do not offer slnb regardless of tumour size. I’ve been told it comes down to budgets.

    So does that mean that people are walking round like a ticking time bomb? How can they be sure that you are staged correctly without it because from what I’ve read on here you could have a thin tumour with node involvement?

    I should find out tomorrow or Wednesday if they’ve approved it for me and if they have they will refer me to another county.

    In myself I must admit I’ve had a rough few days in my head but today has been better.

    I’ve had 8 surgeries on my bowel in the last year and was only given the all clear on that 4 days before this diagnosis so feeling like I need a break!

    Will keep you posted x

    #67356
    Lilly1982
    Participant

    So my consultant rung today and advises that the NHS wouldn’t be finding a Slnb but advised that he would be happy to refer me privately to have it done in London? How does that make sense?

    I’m so confused and stressed u don’t know what to do?!

    #67357
    Rojam
    Participant

    hi laura,

    im sorry, it sounds like youre having a rough time at the moment :(

    i dont really understand, are they saying the NHS has stopped funding slnb all together or just at that hospital/area cos theyve run out of money to fund it? if so have you asked if you can be referred out of area?

    have you tried ringing around the big hospitals/teaching hospitals near you or in london and tried speaking to the derm depts or macmillan support nurses there to see what they currently offer?

    i know it might seem overwhelming but if you would rather get the slnb done then unfortunately it seems only you can try and ensure you get it. i live in herts. my local hospital wasnt very good. they removed my melanoma but i then got myself referred to the barts and the london for my wle and initial follow ups and then after discussion with my consultant opted for continued care/check up etc at addenbrokes in cambridge. i needed to do that for my peace of mind to ensure i got the best treatment i could.

    keep your chin up. its an awful time and at the moment you’ll probably feel a bit out of control and like you have no proper plan moving forward. ive tried looking at the current guidelines for you but they seem pretty vague since the 2010 update. im sure youre entitled to a second opinion, maybe ring macmillan support line to see if they can offer you further advice on where to get this or whether you can appeal the decision already made.

    please keep in touch & take care

    jane

    #67358
    Lilly1982
    Participant

    Hi Jane,

    Thank you for your reply.

    I have been told by my consultant that there is no funding for it in Sussex, and now having read my referral letter to St George’s, London it reads that they don’t do it in West Sussex. I have spoken to my Macmillan skin specialist nurse and she states that it’s ‘research policy’ why they don’t do it here.

    My referral letter reads that I’ve been as an NHS/private patient so will see what they say.

    The whole situation is just so frustrating. I’m back at work and trying to get on as best as I can but without a difinitive plan of action in place I’m finding it hard to concentrate and sleep which I think is natural.

    You had your treatment in another area do you mind me asking how easy that was and was it covered by the NHS? I’ve been advised that if I go private for the slnb that any subsequent treatment or wle will have to be done privately as well? No one will make a difinitive answer and take me out of my misery!!

    Laura x

    #67359
    Rojam
    Participant

    hi laura,

    im so sorry for my late reply, ive just got back from being abroad for nine nights.

    have you been seen at St Georges yet? if not is your appointment soon?

    kind regards

    jane

    #67360
    Lilly1982
    Participant

    Hi Jane,

    Hope you had a nice holiday? I’m away in September, can’t wait!

    No appoinent as of yet, I’ve been advised that they have applied for my histology and hopefully they’ll get that soon and will discuss me at their multi skilled meeting on Thursday and then I’ll get an appointment xx

    #67361
    Rojam
    Participant

    hi laura,

    yes lovely time away with family and friends thankyou.

    glad to hear things are moving along for you. i really do hope the nhs decides in your favour and you get your slnb and wle done soon.

    please be a ‘squeaky wheel’ if you dont get an appointment through soon. please keep us posted.

    take care

    jane

    #67362
    Lilly1982
    Participant

    I’ve only just seen the second page on this feed I am sorry!

    So I was referred to St George’s in London which is a melanoma specialist centre. I had my appoinwnt in August and there was no question about not having slnb and was booked in 9 days later with wle at same time.

    I am 3 weeks post op having had nodes taken from both axilla and am sue results on 25th. I’ve found recovery quite hard and still have pain, extra sensitive, numbness and cording under left arm so am hoping that I’ll be referred for ohysio to help with this.

    Will let you know my results, feeling anxious xx

    #67363
    Lilly1982
    Participant

    Melanoma manager just called and confirmed that my results will be ready for tomorrow! Gosh that’s made me feel sick!! Lol! Xx

    #67364
    Lilly1982
    Participant

    Had good news today as the sentinel node was clear and also clear margins on my back! Happy days!! X

    #67365
    Rojam
    Participant

    hi laura,

    been thinking about you and its wonderful to hear your good news!

    i hope you have a speedy recovery from this now both physically and mentally.

    stay in touch

    take care

    jane

Viewing 15 posts - 1 through 15 (of 17 total)
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