Forum Replies Created

Viewing 15 posts - 1 through 15 (of 44 total)
  • Author
    Posts
  • in reply to: New diagnosis…scared and anxious! #64456
    bon15
    Participant

    I didn’t talk to the dermatopathologist. I raised my concern with my dermatologist who then contacted the dermatopathologist with my questions who then kindly wrote a letter and sent it directly to me.

    I would mention that I from the UK and paid privately for my treatment rather than go through the NHS.

    in reply to: New diagnosis…scared and anxious! #64454
    bon15
    Participant

    I was in the same position as you when diagnosed with a 0.72mm Clark level 4 melanoma in February 2012. Mine was also in the invasive radial growth phase and I also questioned this with the dermatopathologist who did the report, given the apparent contradiction.

    His reply was that my melanoma was “only” superficial Clark level 4 and that he had cut fifteen levels throughout the melanoma, none of which showed any mitotic activity, and he also judged that the largest nest of cells were at the junction of the epidermis and dermis rather than being within the dermis and therefore classified the grwth phase as invasive radial. He said that the decision re the cells was subjective and this often is the case

    .

    I was tempted to get a second opinion but the person who I would have gone to, a professor of dermatopathology, spoke very highly of my dermatopathologist. Anyway, pathology is an art as well as a science so even if you get a second opinion who is to say which one is correct. I was even told by my dermatologist sometime later that the dermatopathologist said someone else may have judged it to be severely atypical but he had a gut feeling it was melanoma.

    Anyway, I have been fine so far inspite of having a very anxious nature and going into regular meltdowns about this or other symptom! I would also add that I did not have an SLNB.

    I wish you all the best.

    in reply to: Follow up guidelines #63488
    bon15
    Participant

    Under the National Heath Service in the UK, for stage 1a it’s a visit to the dermatologist every 3 months for one year and then discharged! No scans or blood work whatsoever.

    I personally think that a year’s follow up is too short and I have chosen to see a consultant dermatologist on a private basis every six months since the end of the first year.

    in reply to: Going outside… #59859
    bon15
    Participant

    I fully agree with Cohanja.

    I was diagnosed with stage 1a melanoma on my leg last year at the age of 54 and can honestly say that I had not exposed my leg at all to the sun for at least the previous 15 years, nor much else of myself for that matter as I never laid out in the sun or went to tanning salons. I am convinced my melanoma stems from my childhood when I had at least several bouts of bad sunburn, causing redness and prolific peeling but not blisters.

    I do enjoy walking and, since my diagnosis I do wear long sleeved SPF clothing rather than sunscreen when walking on holiday (and I’ve been to Costa Rica, Spain, Italy, the South Pacific, Australia and New Zealand since being diagnosed! All fairly hot places) and also wear a hat and cream on my face and hands. I do think that it is good to get some sun on my arms and face towards the end of the afternoon as i really don’t think that anything I do now is going to have any influence over whether my melanoma progresses or I get another one- the damage was unfortunately already done in my childhood and early adulthood when the maximum sunscreen I used was factor 6 and that was considered high!

    I would add I have very, very few moles so I can understand someone younger with a lot of moles that are hard to keep track of being extra cautious in the sun.

    in reply to: SLNB Questions #60025
    bon15
    Participant

    Thanks Catherine, you give me hope!

    in reply to: SLNB Questions #60022
    bon15
    Participant

    The profession in the UK adhere to the “Revised UK guidelines for the management of cutaneous melanoma”. this states that”SLNB can be considered in stage 1B melanoma and upwards” but also says “SLNB is normally considered for patients with melanoma more than or equal to 1mm”.

    I have no reason to believe that these guidelines are not followed throughout the UK although there may be regional differences regarding easy access to a centre equipped to perform the procedure. I would imagine, though, that any clued up patient who knows that he should strictly have an SNLB would have no trouble getting one free under the NHS (if not already automatically offered one) if he fell within the eligibilty criteria.

    I do not see an oncologist as I am stage 1A (0.72mm depth, zero mitosis) and instead see a consultant dermatologist. He advised me that even if I’d been stage 1B I wouldn’t get an SNLB as my melanoma was less than 1mm in depth. Even though I was prepared to pay privately, he said he knew of no one he could refer me to as it would be outside the guidelines. This is why it is so frustrating when there are posts on this board which say you are on the borderline for needing an SLNB if your depth is 0.75mm or more, regardless of Stage 1A or 1B, as there is very little chance of having the procedure in the UK if your depth is between 0.75mm and 1mm even if you are prepared to pay!

    in reply to: SLNB Questions #60017
    bon15
    Participant

    Of course they do SLNB in England and at the same time as the WLE and have been doing so for some years. The guidelines followed are based on the latest AJCC report, namely for melanomas of stage 1b and above.

    in reply to: Catherine, SLNB clarification please for thin melanomas #59961
    bon15
    Participant

    Thank you for your reply Catherine.

    There still seems to be a lack of clarication, however, on the situation regarding SNLB and stage 1a melanomas between 0.75mm and 1mm in depth. By virtue of being staged a 1a, such melanomas have neither ulceration or mitoses.

    I have looked at the UPENN (Univerity of Pennsylvania?) website and have watched the melanoma video in respect of early stage melanomas. With regards SNLB, the video states 1mm as the start point for this procedure unless there are higher risk factors (presumeably ulceration or mitoses, which would be stage 1b anyway).

    The modernmedicine website link states;

    “Dr. Bichakjian says AAD guidelines do not recommend SLNB for patients with melanoma in situ or T1a melanoma (less than or equal to 1 mm thick, no ulceration, and mitotic rate (MR) less than 1 per mm2, according to American Joint Committee on Cancer/AJCC guidelines;”

    Therefore for stage 1a patients, who by definition of having no ulceration or mitoses, there still seems to be no basis in your reply for their having an SLNB if their depth is between 0.75 and 1mm. I can also find no recent research on the internet that promotes an SNLB in such cases. Indeed, this would contradict the AJCC guidelines.

    I do see that T1b melanomas less than 1mm should be offered SNLB in certain cases and this may well be where your 0.76mm cut off in previous posts is coming from.

    Sorry to labour the point regarding clarication but I do think that it is important that stage 1a patients with a depth between 0.75 and 1mm are clear that they do not need an SNLB.

    in reply to: clinically benign #59920
    bon15
    Participant

    Yes. Apparently in Australia they don’t even report on it.

    in reply to: clinically benign #59918
    bon15
    Participant

    As someone diagnosed with an invasive radial growth phase for a 0.72mm melanoma superficial Clark 4, I questioned the dermatapathologist who read my slides. From his written reply, it appears that no one in the UK and Australia takes any notice of thos at all and only report on it in the UK as it is in the guidelines to do so. From my own thorough research, it seems that all the research into this is at least 10 years old and mainly stems from a group of people in the US. There seems to be no recent research at all. The dermatapahologist also told me that the determination of invasive RGP is often very subjective, as it was iny case, and his advice was to concentrate on the Breslow depth for prognosis.

    in reply to: Stage 3 #59877
    bon15
    Participant

    Catherine, I surprised to hear you say that 0.75mm is usually the demarcation for having an SLNB when the AJCC guidelines say 1mm unless there is ulceration or a mitotic rate over 1, neither of which were mentioned by the opening poster. With a depth of 0.72mm, there was no way my consultant dermatologist in the UK was going to refer me for an SNLB in spite of my wanting one and at stage 1a you would not be under an ocologist either.

    in reply to: Questions over accuracy of Breslow depth measurements #57238
    bon15
    Participant

    Catherine, the author of the essay seems like an expert to me….

    Is Assistant professor (“Oberarzt”) at the Center of Dermatology and Andrology of the University of Giessen. He is member of the editorial board of the journal “Dermatopathology: Practical and Conceptual”, Historian of the International Society of Dermatopathology, Director (together with Carlos Diaz, M.D.) of the Center for Dermatopathology, Freiburg, Germany, member of the Executive Committee of the European Society of Dermatopathology, Member of the editorial board of the journal, “American Journal of Dermatopathology”. He took part to the organization of the 15th Congress of the German Society of Dermatopathology (ADH) in Freiburg (together with M. Braun-Falco).

    in reply to: Questions over accuracy of Breslow depth measurements #57234
    bon15
    Participant

    My melanoma was also Clarks IV and I now wonder whether in some cases sample shrinkage can possibly explain the discrepancy between a relatively thin Breslow depth and Clarks IV if, as in my case, the week long gap between the initial punch biopsy (melanoma fully removed by the 6mm punch) and carrying out the pathology report led to greater than average shrinkage (as my dermatologist admitted had happened with the WLE) and the melanoma actually started off deeper.

    in reply to: Worried that I have a recurrence #56495
    bon15
    Participant

    Spoke to my dermatologist who advised I had an ultrasound to ascertain whether the lump was fluid. Foot surgeon had not suggested this as he understood that could still be a metastasis if had some fluid, although very unlikely, but dermatologist reassured me that this would only happen if any metastic lump had been there some time and was breaking down on itself (or something like that!). So had an ultrasound today and pleased to report that, with “99.99% certainty” it is a ganglion cyst so very relieved. Thank you for all your support.

    in reply to: Worried that I have a recurrence #56493
    bon15
    Participant

    Unfortunately, yes. I asked the same question but apparently you need a torniquet around your thigh and you don’t want to move your foot whilst being operated on because there are tendons and nerves etc. The lump is also quite deep.

    As regards second opinions, this isn’t standard practice in the UK. When you see a hospital consultant, you need to be referred by your GP or another consultant (I was referred to the surgeon by my consultant dermatologist). To get a second opinion I would need to return to my dermatologist and ask him. I’m fortunate to live near a large hospital with good facilities and I am already seeing the top foot specialist within that hospital so I am happy that he is good enough. I’m also paying privately for all my treatment rather than using the NHS- this means I can specify who I see and also speeds up the whole process.

Viewing 15 posts - 1 through 15 (of 44 total)