Home Forums Melanoma: Newly Diagnosed – Stages I & II Pathology Report/Diagnosis Questions

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  • #22452
    LeeWms
    Participant

    Hi, all!

    My diagnosis of malignant melanoma is a couple years old, but I still have questions about my pathology reports.

    In January of 2012, an area on the back of my arm itched. I noticed it was an odd red color, suspected melanoma (because of my many risk factors), and made an appointment with my dermatologist, who biopsied it with the shave method.

    The first path was completed at the dermatology center that my (then) physician was associated with and indicated that the lesion was .1mm. Once I became patient of the Duke University Pigmented Lesion clinic, I asked for second path, and it was determined to be .15mm.

    The first path reads:

    “Microscopic Descriptions:

    Sections show a melanocytic proliferation consisting of atypical melanocytes scattered along the dermal-epidemal junction as nests and solitary units in an asymmetrical fashion. Similar atypical melanocytes are seen in the papillary dermis. There is focally moderate lympocytic inflammation with few melanophages.

    Diagnosis: Malignant Melanoma

    Breslow Thickness = 0.1mm, Clark Level II

    No definitive angiolymphatic invasion or ulceration

    Mitosis less than equal to 1/mm

    Comment: This lesion extends to one lateral surgical margin.”

    The path report from Duke reads:

    “Pathologic Stage

    PATHOLOGIC STAGE (AJCC 7th Edition): pT1a pNX pMX

    Diagnosis

    MALIGNANT MELANOMA WITH FOCAL SUPERFICIAL DERMAL INVASION TO A BRESLOW

    DEPTH OF 0.15 MM, CLARK II. SEE NOTE.

    NOTE: Sections show an asymmetrical junctional proliferation of atypical nests

    and single melanocytes with areas of confluence. There is a rare superficial

    dermal nest at a depth of 0.15 mm. No ulceration, regression, mitotic figures

    or vascular invasion is identified.”

    My concern is that the diagnosis of Stage 1A may not be correct. My understanding is that shave biopsies are not recommended for suspected melanoma because accurate depth cannot be determined.

    Within two weeks of the initial biopsy a plastic surgeon (recommended by the dermatologist) performed a wide excision of 1.5 cm, instead of the recommended 1cm. I wonder if the decision for more than 1cm was because of the shave biopsy.

    The pathology from the wide excision reads:

    “Diagnosis

    Tiny microscopic focus of residual melanoma in situ adjacent to prior biopsy site, completely excised with a margin of 1.5 cm. Negative for residual invasive melanoma.

    Comment

    According to the attached pathology report this patient had a Clark’s level II, Breslow Thickness 0.1 mm invasive melanoma with no vascular or ulceration. Mitoses were less than 1 per square mm. Based upon the attached report and the current wide excision this is a T1a NX MX, AJCC stage 1A lesion.”

    I have difficulty understanding the technical jargon, but it seems as if there were not clear margins from the shave biopsy, but clear margins are indicated after the wide excision. So, my questions are:

    1- How accurate can my diagnosis be considering the biopsy was completed by shaving?

    2- The reports don’t indicate what type of melanoma (superficial spreading, lentigo, etc.). Is this important to know?

    3- Because I don’t understand the jargon of the reports, is there anything pertinent in the reports that I should be concerned about?

    Thanks very much!

    Lee

    #66933
    Catherine Poole
    Keymaster

    Hi,

    A shave biopsy is fine, it should be a deep shave if possible. I see nothing in your pathology report to be concerned about. This was a very low risk lesion, with shallow depth. That is the number one prognostic indicator. There was no mitotic factor (cell division) or anything else that would indicate more risk. And you had a wide excision to make sure any stray cells were removed. Any recurrence is likely to happen in the first two years, and you are beyond that! So congratulations on finding this early.

    #66934
    LeeWms
    Participant

    Thank you for the reply. My concern was that the path report doesn’t indicate how deep the shave was, leading to my concern that the lesion could have been deeper than indicated.

    On another topic, I’ve read many of the posts of newly diagnosed and can greatly empathize with the anxiety that is felt. I had extreme anxiety for the first several months, even though I was reassured by my (new) wonderful dermatologist at Duke that she would recognize anything that looked abnormal. I’m surprised that physicians who are giving cancer diagnoses aren’t directing their patients to someone who can help them through the first few weeks or months with therapy or medication.

    This is the absolute best melanoma website and forum on the internet. Thank you very much for your time and assistance.

    Lee

    #66935
    cohanja
    Participant

    I agree more should be done from a mental health standpoint. A cancer diagnosis is a traumatic event, and doctors/hospitals should be providing resources to newly diagnosed patients that direct them to where to go for psychological therapy when needed on dealing with such an event.

    #66936
    LeeWms
    Participant

    The diagnosis truly is traumatic.

    I knew I was high risk and sought care from another local university medical school (not Duke University) and was told to stop worrying.

    I also knew that melanoma caught early was extremely “curable.” I had a friend who had been diagnosed and a wide excision and all was well with him decades later. Yet once I was diagnosed those facts did not help ease my anxiety.

    I saw a dermatologist on a regular basis, as I had been doing since my mid 20s, but never felt as if any of the physicians took my (high risk) case seriously. I was already thinking I needed to once again seek out another dermatologist when I noticed my lesion. It wasn’t until after I was told it was melanoma that the she suggested I *may* consider the Pigmented Lesion clinic at Duke University. Why did she not send me there from the beginning, knowing I was high risk? She told me she was too busy to take photographs for comparison, and I needed to make sure my husband (who never wants to believe anything is wrong) checked my back.

    So even though my lesion was caught early (by me and not my physician), and I knew that it was highly curable with a further excision, my anxiety went into overdrive, and I believed every spot on my body was melanoma, or it wouldn’t be found underneath all my hair, or it was lurking inside my body. I am not afraid of dying, but I didn’t want death by melanoma to be my story.

    Fortunately, my new physician (a melanoma specialist) at Duke gave me her email, and I would send her pictures or ask her a question, and she would always reassure me, but I think I would have fared much, much better on anti-anxiety meds in those first few months. No amount of reasoning kept my anxiety at bay for an extended period. What really bothered me was the ABCD guideline. I am covered with all kinds of freckles and nevi, and many of them fit either the A, B, C, or D. Finally, the truth sunk in….the “ugly ducklings” are what we’re looking for.

    I’ll never forget that intense anxiety. I’m sure everyone has a different experience because we all have different brains, personalities, past experiences and support groups. But after reading several posts here, it seem clear many people do experience anxiety with the diagnosis, and I’m really shocked that there’s not more training for doctors to help their patients when it has to be obvious that some are suffering mentally and/or emotionally, even if it’s short-lived.

    Even two years out, I still have some concern…because my physician did a non-recommended shave biopsy! I truly believe if I had been a patient at Duke, my lesion would have been found sooner, and my anxiety would have been somewhat less.

    I saw several doctors within the first several weeks of my diagnosis, and I think it was clear I was in a state of high anxiety, but none of them suggested medication. I suppose sometimes we, as patients, need to request it (for those of us who believe ‘better living through chemistry!’) Although, I realize some prefer not to take medications and that there are other ways to treat anxiety, such as through prayer, meditation, therapy, etc. I would guess the best approach would be a combination of several interventions.

    And one intervention is this wonderful website and forum! Thanks to all for listening!

    Lee

    #66937
    cohanja
    Participant

    Everything you’re feeling is totally “normal” in this circumstance I believe. I’ve experienced many of the same things as you (I was diagnosed 2011 stage I). I also know the whole “if caught early, risk is low” etc….and it’s relatively easy for me to remember that and believe that when I’m telling it to other people who have an early melanoma, but I don’t apply that same knowledge to myself, for some reason for me I don’t believe it and my panic and anxiety was very high thinking this is going to be really bad. I think naturally it’s just easier to believe it when you’re talking about it for someone else, but it’s harder to believe it for yourself. I also had been seeing a dermatologist on a regular basis for as long as I can remember (since my 20s) and I would always mention my history of sunburns etc…but the Dr never removed anything until the melanoma. Sometimes I think I’m unlucky, couldn’t he have removed it sometime earlier when it was becoming melanoma but not melanoma yet? But then sometimes I think I was lucky because even when he did remove it he didn’t think it was anything bad, he said he was 99% sure it would be nothing. So he could have left it alone and it could have been much worse for me. I go back and forth with my thoughts on that. After my diagnosis, I also looked at my skin and thought almost every other pigmented spot I had looked sinister. I never thought anything about them before the melanoma, but after the melanoma I thought every one of them looked bad. I also think that is a natural thing to happen in such a circumstance. I’ve had about 60 biopsies since the melanoma and not one of them turned out to be anything more than mildly atypical. So the only biopsy I truly needed was the first one, not the 60 subsequent ones. Some of that is my own demanding of things to be removed, some is a function of the Dr treating me differently now that I’ve had a melanoma. Point is I have to just trust myself and my Dr that we will be vigilant enough to catch anything that pops up that needs to be addressed, but I can’t keep getting biopsy after biopsy until I have no pigmented spots left. I also think that not every therapist is necessarily helpful for this very specific thing. A “general” therapist I do not find as helpful as one specifically trained and educated in dealing with cancer patients, medical diagnoses, etc…. someone who specializes in and focuses on working with people who are experiencing anxiety due to a diagnosis, especially a cancer diagnosis. It’s traumatic. People can experience symptoms of PTSD, they sometimes need help controlling their thoughts and where their mind goes, etc…. I think what you’re describing, what you’re experiencing, sounds “normal” to be in the sense that it’s pretty much how it went for me too and I do think everyone has a little bit different experience based on their individual personality, etc…but I think some things are pretty common to most people going through this – a level of worry, fearing the worst, etc… I do think it helps to “vent” on forums like this with others who “get it”

    #66938
    Rojam
    Participant

    hi lee,

    having read your post i wanted to comment as so much of what you say is how i used to feel.

    please find below my post from 2013. this was how i felt three years after my diagnosis.

    i also waited nearly two years before i asked for catherines opinion on my path report. for me it was what i needed to do to put my anxiety to bed and take back control of my life.

    its nearly five years now since i was diagnosed and so applying sunscreen, wearing clothes that cover me up, seeking shade, working my days activities around the sun, skin checks etc etc etc are all automatic to me, its just who i now am. this means i finally have days where melanoma doesnt even enter my thoughts. its taken me a while to get here and i know we are all different but im sure you will get to this point too.

    kind regards

    jane

    Re: Physiological consequences of melanoma

    by Rojam » 19 Aug 2013 03:04

    hi,

    not sure if it will help but ill give you an insight into how i felt with my diagonisis.

    i was diagonised as originally 1b then changed a year later to 1a nearly three years ago.

    not a day goes by when i dont think about it. in the early days it was 24 hours per day now its just fleeting thoughts.

    for me i struggled with 1) will the original melanoma return suddenly in my organs. 2) are any of my hundreds of other moles also melanoma.

    my love in life apart from my husband and three kids is my horse totti. therefore i spend a lot of time outside and always feel like i am sun dodging and consistently reminded of my melanoma. i felt theres no escape from thinking about it.

    i really struggled with not being comfortable in the sun anymore. i stupidly used to love the sun but just didnt give it the respect it deserves.

    i found it hard that in the uk most people see melanoma as just a minor problem that you cut off and then youre cured. i didnt feel think anyone understood me. thankfully i then found this site, catherine and all the great people on here giving me great support and comfort.

    I felt my sense of humour had been wiped from me and my whole identity had changed. I’m not the carefree person I was but I am now happy with the new me.

    Someone on here once said its a diagnosis not a life sentence and that really stuck and helped me focus on moving on.

    looking back though i still wished id asked for counselling after my diagnosis and maybe told my gp how i was feeling with the view of going on short term anti anxiety meds.

    at the beginning i found it mental torture, like white noise. i was panicking about my kids, id wake feeling my lymph nodes in the middle of the night. id go into the changing rooms in shops to try clothes on and stay in there distracted by checking my moles in the mirrors (under different lights) for ages etc etc etc. but time is the biggest healer and it really does get better with time. i still have wobbles but i now only allow myself so much time thinking about it and then make myself move on. I am now in control of myself and never scan the Internet for information. I only use this site.

    i also now realise that although i was unlucky getting melanoma i was very lucky i caught it myself on the base of the back of my neck so early. i now believe the statistics that i am very unlikely to have to deal with my 1a ever again.

    i also feel if i can catch it there, then i can catch it anywhere and am confident i will spot anything that changes with the help of my photos i have had done.

    i am at last comfortable in my own moley skin again now, ive adjusted my life to fit the sun and will not let myself be consumed with what ifs. lifes to precious to miss out on

    your relative is lucky to have you.

    warm wishes

    jane

    Rojam

    Posts: 17

    Joined: 22 Oct 2012 11:14

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    #66939
    LeeWms
    Participant

    It is a comfort to hear other’s stories and know we, who experienced (pathological?) anxiety for a short time after diagnosis, can lead normal lives. It is sad that this anxiety isn’t taken more seriously by the health care providers.

    My life has always involved the sun. I grew up in the south and lived outdoors in the summer time, long before there was true sunscreen. I love outdoor activities and especially water sports. At first I thought I could never be in the sun again, but that too passed, and even though I always wore protection, after diagnosis, I stepped it up.

    I agree about therapists. It’s the same as finding a good doctor of any kind—it can take many trials before finding someone who fits our needs. I was seeing someone for at the time for grief counseling, and she did little to allay my irrational fears but did suggest medication, but she left it up to me to ask my primary care physician because she was a therapist and not an M.D.

    I believe the one thing that truly helped me was being in care of a specialist at the Duke Pigmented Lesion clinic.

    I believe dermatologists should be educated about helping their patients who receive the diagnosis, and my other strong feeling is that, if they have a patient who is high risk, they should refer them to a specialized clinic (if course, one is available within a reasonable travel distance).

    I attempted to change the subject but it didn’t change once posted.

    Thanks to all for sharing your stories!

    Happy Spring!

    Lee

    #66940
    winterlong
    Participant

    Hi Lee,

    You can never walk in another person’s shoes,

    that is for sure.

    I truly believe that an early stage melanoma is about as good as you could get as far as a cancer dx..barring the kind of skin cancers that people get burnt off every day.

    You have a team of people on your side,

    reading through the reports, even if they initially should not have done the shave biopsy,

    they certainly made up for that, and took ample in the wide biopsy.

    With diligent screening, you can now relax and get back to truly living your life.

    cancer can be an amazing teacher in your life.

    It helps you to appreciate every moment and make it precious.

    The stats for 1A and really, all stage 1 are excellent. Excellent!!

    let that sink in lee, and appreciate how fortunate you are.Perhaps you could invest in a PET scan, or at least a CT and bone scan, just to rid yourself of lingering anxiety?

    Perhaps a great counsellor, or some anti anxiety might help you transition away from constant worry?

    My advice is, do whatever it takes to get yourself to move on.

    You have had a horrible scare, but you have been delivered a beautiful miracle with an early stage dx.

    Consider those who are late stage. Consider those in between

    I myself have stage 3a breast cancer. I have chest node involvement as of my 3rd dx.

    I may have years and years ahead at stage 3. That is amazing!

    Gosh, anything could happen at any time with all the research for cancers. :)

    Challenge yourself lee,

    take yourself out of your comfort zone.

    Do something you always wanted to do.

    Don’t put off living.

    Tick off your bucket list one by one.

    remember, if ever it dies come back,

    and that is a big IF :)

    You don’t want to realise you just waste many years worrying about stuff that may never happen.

    I write this only to encourage you,

    and not in any way to disparage your very real worries and fears.

    winterlong.

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