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  • #21833
    farang100
    Participant

    Hello Everybody

    I had a rather large 6.55 mm nodular melanoma removed from my calf three months ago.

    The pathology came back as a stage 2B melanoma.

    I went and hid overseas and came back and did a PET/CT scan last week which came back all clear.

    I went to an oncologist today who said I should do a SNB.

    My question is thou is there any point?

    There seems to be a lot of controversy over this procedure as it does have side effects and if it is positive then are you really better off anyway re quality of life and survival ?

    He is pushing me to do it but I as the scans are all clear and it is three months since the surgery maybe I should just adopt a wait and see policy.

    #63664
    Catherine Poole
    Keymaster

    Absolutely, all research shows it beneficial and possibly life saving. If any nodes are positive they will be removed. So please do go ahead and schedule the SLNB.

    #63665
    Anonymous
    Guest

    What Catherine said! Don’t assume with this disease, always stay in front of it. Knowledge is power so don’t be afraid of the data.

    If everything is ok, that’d be great and get on with life while keeping careful watch. But as Catherine said, the SN and maybe some of the surrounding nodes could be infected. It’s absolutely best to know and always best to rid yourself of the disease if it’s there.

    Jeff

    #63666
    Worrywart
    Participant

    With a lesion of that depth, I would absolutely have an SNB. If you aren’t properly staged (if your lesion is indeed stage III) then you will not have access to the treatments someone who is stage III has – which very well could save your life.

    #63667
    farang100
    Participant

    Are there side effects from the biopsy which involves a full general anaesthetic?

    If something is positive then I believe they take out all the lymph glands.

    That procedure can be quite debilitating cant it? ie quality of life is compromised with no guarantee of prolonged survival?

    And even if they take out the lymph glands there is no guarantee it wont spread anyway is there ?

    Lastly with very large or thick nodular melanomas from what I read there is not a lot of statistical advantage in the procedure?

    Sorry for all the questions but there is a lot of information out there and it is very confusing.

    #63668
    Anonymous
    Guest

    Yes, it is confusing. You’re going along just fine, enjoying life, had a mole removed and then…BAM. You have cancer. A nasty cancer.

    Q. Are there side effects from the biopsy which involves a full general anaesthetic?

    My answer: If they only take the SN and a couple of close nodes, there will most likely be some discomfort and reduced mobility while the wound heals. There may be some mild but quite managable lymphodema afterwards.

    Q. If something is positive then I believe they take out all the lymph glands.

    My answer: Maybe, depending on what they find (how many, macro or micro invasion..) but they will most like take out more as the goal is to remove the cancer with “clean margins” and that includes the lymph nodes.

    Q. That procedure can be quite debilitating cant it? ie quality of life is compromised with no guarantee of prolonged survival?

    My answer: Yes, it can be if extensive lymphodema develops afterwards. If you are fit, especially if you work out now, it tends to be less severe. But it is usually manageable though you will have to respect your limitations. There are no guarantees but consider this: If nothing is found, EXCELLENT, the surgery is relatively minor and you’re basically done but in the watch and monitor mode with regular visits to the derm. If they do find something, the cancer will be removed again. It’s always best to remove the cancer if you can. The data I’ve seen clearly says resection of the known cancer always improves survival. If you decide to do nothing and, in fact, there is cancer in the lymph nodes, you can almost bet, in time, it will spread.

    Q. Lastly with very large or thick nodular melanomas from what I read there is not a lot of statistical advantage in the procedure?

    My answer: I’m unaware of this, but proper staging is very important from treatment and insurance points of view.

    Could you please post your pathology report results? There are many experts here who can help you make sense of it. Also, do not be shy about getting more medical opinions and finding a derm and/or clinic that specializes in melanoma.

    Another thing to consider. The goal is to never, ever, get to stage IV. You ALWAYS have to stay ahead of this disease. That does not mean life stops and focuses on this disease but here an ounce of prevention is worth a ton of cure.

    IMO, you would be very wise to proceed with the SNB.

    Jeff

    #63669
    farang100
    Participant

    Thanks for your kind words.

    Yes I am a totally bewildered by all that has happened.

    No one even the surgeon thought it was a melanoma as it was just looked like a blister first then a cyst with no distinct colouring, itching or bleeding or ulceration.

    Macroscopic Description

    Lesion right calf An ellipse of skin 64 x 24 x 9mm with a central cream nodule 21 x 16 mm AHx 1ts KS

    Microscopic Description

    Sections show nests and nodules of atypical epitheloid melanocytes invading into the deep reticular dermis and elevating the epidermis. There is limited lentiginous proliferation and nesting of the melanocytes along the dermo epidermal junction near the centre of the specimen. There is no in situ melanoma extending beyond the dermal component. The cells have moderate to abundant pale eosinophilic cytoplasm enlarged and irregular nuclei and small eosinophilic nucleoli. The mitotic count is low 2 per sq mm. There is no ulceration, perineural invasion or lymphovascular space invasion identified.

    Conclusion

    Right calf – Melanoma nodular pattern. Clark level 4 Breslow thickness 6.55mm. The distance between the closest side and deep margins and tumour is 5mm

    #63670
    farang100
    Participant

    I had an FS with ultrasound today as they couldn’t do a SNP as I had a wide excision over three months ago.

    The guy who did the ultrasound said it was normal although he did find something that was 1.75mm but he said that it was too small to biopsy and just to check it next time I come in four months and that it was not unusual.

    A couple of hours later the specialist called me saying that it was abnormal and that I had the choice of wait and see or surgery on the leg for a wider margin with a graft and flap and then having the lymph node(s) taken out.

    Just when I thought it was okay now it is not okay again or maybe not.

    Anyway I wont have surgery unless I am sure so will wait and see.

    I just cant see how having surgery when they don’t know is going things better for me!

    #63671
    Catherine Poole
    Keymaster

    It sounds like you could use another opinion at a place of melanoma excellence. Where do you live? We can help you find that.

    #63672
    farang100
    Participant

    This was done at a centre of excellence for melanoma in Oz ie The Australian Institute for Melanoma.

    I am just confused with the findings in so far as the ultrasound doctor said that is was not unusual to have a small 1.75 finding and that the best course of action was to follow up in four months and in his opinion he classed the report as normal but the melanoma specialist then said it wasn’t normal but I could wait and see or have surgery.

    #63673
    farang100
    Participant

    I had my melanoma resected with a bigger safety margin but didn’t end up getting the SNB as there was conflicting results on the which was the sentinel node between the two LS that I did so I opted out of doing it.

    Doctor told me I could have a complete node dissection and radiation or wait and see. I have opted to wait and see. I couldn’t really handle doing something so radical that may not be needed and that can still be done at a later date.

    In the meantime I just have to try and get as healthy as possible. I have been reading up on supplements and Coenzyme Q10 is supposed to be help stop recurrences in melanoma patients.

    #63674
    Anonymous
    Guest

    “In the meantime I just have to try and get as healthy as possible. I have been reading up on supplements and Coenzyme Q10 is supposed to be help stop recurrences in melanoma patients.”

    Curious, where did you find this information?

    #63675
    Catherine Poole
    Keymaster

    I don’t know of any supplement that prevents melanoma recurrence. Even the therapies aren’t proven yet to do so in many cases. I think I might reconsider that SNB and make sure that any positive nodes are removed. You don’t want this to get more serious if possible. Nodular melanoma does skip the usual biological growth patterns and can be more aggressive.

    #63676
    TreeFrog
    Participant

    Hi All,

    The reference to Coenzyme Q10 is from an Italian study done some time back. I came across the reference myself when I was diagnosed with Stage I in 2011, and to tell you the truth, although my “credulity factor” is not high, I have been taking 250mg of CoQ10 daily since that time. The study’s results were compelling, but as far as I can see, no new study has been undertaken – Coenzyme Q10 being in the public domain and all. No profit motive for corporate backing.

    The sample size of the study was small – that was its major flaw. However, CoQ10 is considered low on side-effects, so it seemed like a little insurance. It’s just my personal choice – I understand why it can’t be officially recommended without further, much more robust investigation.

    I’ve found a reference on this forum, if it will let me post a link…

    http://www.z2systems.com/mif/viewtopic.php?f=53&t=2273&sid=d74f4504cb5477149b192b5be61e84df#p2273” class=”bbcode_url”>http://www.z2systems.com/mif/viewtopic.php?f=53&t=2273&sid=d74f4504cb5477149b192b5be61e84df#p2273

    ~Wendy

    #63677
    cohanja
    Participant

    The study I’ve seen was from MD Anderson with mice and seemed to show Turmeric had an effect, so I take that

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