Home Forums Melanoma: Newly Diagnosed – Stages I & II New diagnosed 1B from Canada looking for support

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  • #23090
    point30
    Participant

    Hi everyone,

    While of course nobody wants to be an active member of a forum like this- I am happy that I have come across it. Looking through some of the posts it seems like there are alot of people here that either have gone through what I am going through, or are like me- new to being diagnosed with melanoma.

    Here is what I know for now:

    I am classed a 1B

    I believe my thickness is 0.54mm

    I believe my mitosis is 2

    I do not believe there is ulceration

    margins were definitely clear

    Now that this language is new to me I will likely ask for a copy of my pathology report during my next visit. If someone can please provide any insight to what I think is where I am please let me know. I am all about getting the right information.

    I am scheduled for a second incision as my initial diagnoses was in situ; however, the final results were those I mentioned above. The oncologist said that he did not think a lymph node biopsy was not necessary, and while the initial excision likely removed the cancer- he wanted to do a second one another 5mm from the scar to ensure the margins were clear.

    One item I am nervous about is the mitotic rate of 2. I have read different things- and I believe he said it would be more of a concern if it was over 40? Again- I wish I had recorded or written all of this down- which I will when I go back for my surgery in two weeks.

    Secondly- I am a 1B with a 0.54mm depth (I believe). I thought this would have been a stage 1a but he said that it was a 1b. Can someone explain this difference?

    Look- this is likely my first post. I am hoping for a positive prognosis so I can hopefully then help others in future that will go through what I am about to- starting with my diagnosis.

    Thank you- I look forward to meeting new friends- I live in Canada and am happily married with 2 children. You have very likely gained a very new passionate member :)

    #69821
    point30
    Participant

    To add the melanoma was superficial melanoma.

    #69822
    jennunicorn
    Participant

    The mitotic rate is what makes it a 1B instead of 1A. Either way, you caught it early and that is great! Definitely get your pathology report in writing, always best to read exactly what it says, since it can be hard to remember everything the doc says during a visit.

    I am a little confused about how they determined in situ and then ended up with depth? Was it just an informal thought from the doctor prior to getting the biopsy results?

    #69823
    point30
    Participant

    I am not sure of the initial biopsy report other than it was excised and came back in situ. It was a large flat mole and the biopsy only took a portion of it.

    After the entire mole was removed the pathologist made the discovery of the .54mm in an area of the mole.

    I will followup with my report once I return to my doctor and will publish the results to allow some more of the experience members give me their thoughts.

    Jennunicorn thank you for the words…just hearing other people’s thoughts is comforting as this is still quite new to me.

    #69824
    Catherine Poole
    Keymaster

    Hi and welcome! Please utilize our resources here under the Webinars, we have an excellent one on pathology, also a section on it. And would be happy to send you my book at no charge if you email your address to me: cpoole@melanomainternational.org

    The cut off for SLNB is .76 usually. But the mitotic rate should be questioned. Hope this helps.

    #69825
    point30
    Participant

    Thank you Catherine for the warm welcome and offer. I have sent you an email.

    I will post the final pathology results in a few weeks once I go back. Of course I think of getting a copy, or taking a picture of it with my iphone, in retrospect. So for any other ones going through a diagnosis this is a good first thing to remember when you are returning to review your results.

    From what I recall he said he did not think a SLNB was necessary and that there was some conflicting research regarding it for my stage with my results.

    I think, like others, I am feeling like I have cancer throughout my body, but realistically think/hope it was caught early enough. What I have noticed from this forum is that people often have joined, talked about their issue, and then disappeared. I am assuming that is a good thing- but it would be nice to hear from any 1b people out there regarding their experiences. If someone happens to read this in future please by all means PM me!

    Finally I wanted to share something with you that I would recommend. Retinal 3d scan of your eyes. I was fortunate that I did this in 2010 and it was discovered that there is an ‘eye freckle’ in the back of my eye. So I had them rescan me again yesterday in 2017 and it discovered very little (if any) growth. The reason I am suggesting this is that having a benchmark scan is much better than knowing if the spot was new or growing. Now- after discovering I have (or hopefully can say had) 1b melanoma- it was much more comforting to have in retrospect and I am glad I had it done.

    Thanks everyone- hope to connect with more members soon!

    #69826
    point30
    Participant

    Can anyone explain the relevance and prognosis of a mitotic rate of 2 (vs a 1 or a 5 or a 10 or 40 etc.) in superficial melanoma stage 1b ?

    There are so many variations of this on the internet.

    #69827
    Catherine Poole
    Keymaster

    Mitotic rate is the rate at which the melanoma cells are dividing. 1-2 is ok, usually the high numbers say you had a tiny lesion with shallow depth but a mitotic of 8, then a SLNB might be done. My lesion, 27 years ago was a .76 with a mitotic of 2, no SLNB discovered yet. close follow up is important though.

    #69828
    point30
    Participant

    Thank you for the response.

    I will share a pre-meeting email I did receive without the specific details. I will not share my oncologist name/details however.

    Quote:


    The pathology showed a thin melanoma that has been completely excised. This means that it was very early and prognosis is very good. As the final pathology showed it was slightly more than a melanoma in-situ I typically do a second excision of the scar for extra security. We will do this when you have healed enough, so another few weeks yet. This does NOT mean that there is any melanoma left in your scalp only that I usually take bigger margins than I do with melanoma in-situ. Therefore in summary it was slightly deeper than we thought from the biopsy but still very early and the only other treatment you will need is a small amount of extra skin taken.

    Catherine, may I ask, were you a 1b when you were first discovered? Have you ever had it come back in any other way? Did any later stages come up?

    Also to add, the cancer was on my right side of my head above my ear in my scalp.

    Hearing people respond, with pretty straight forward language, is really comforting …. thank you.

    #69829
    Catherine Poole
    Keymaster

    Head and neck lesions can be higher risk. I would make sure there is a good opinion on the pathology of the specimen. (teaching university) I have had no recur or other problem since.

    #69830
    TreeFrog
    Participant

    Hi point30,

    Glad you found the forum! It was a great help and reassurance to me in 2010, when I was diagnosed very similarly to you (superficial spreading melanoma on leg, .48mm thick, Stage 1a. “2 mitoses per high-power field”). The criteria of staging were adjusted just after my diagnosis, so I think these days my mitosis might have put me in Stage 1b. All depends on how big a “high-power field” is compared with a mm squared.

    I have had no recurrence. Melanoma is seldom on my mind anymore. You are quite right that it’s easy to freak out reading forums and blogs, because most of the folks who continue to post are those few who have recurrences and other issues. That’s one of the reasons I look in here from time to time – to show there are lots out there who get a diagnosis of a low-risk melanoma, take the steps to deal with it, and have no further issues. :)

    In my case, which is a bit unusual, doctors (the dermatologist and the surgeon, neither of whom was an oncologist nor consulted with one) slated me for an SLNB. I took issue with this approach, having done the research and found SLNB was likely of no utility in a case as low risk (lesion less than .75mm) as mine. Eventually they agreed – but it was a stressful time, and info I received via members of this forum lowered my stress. :) I simply had the WLE, and that was that.

    Best wishes!

    ~Wendy in Canada

    #69831
    point30
    Participant

    Wendy- thank you for taking the time to come back and respond! It is more comforting to hear stories like yours, so the fact that you took the time to write your story means a lot.

    Yes, I have lots of things going through my head now- and am starting to question every issue I have in my body, whether it’s cancer or not. It sounds like you can really relate. How long did it take for you to kind of relax and not regularly think about it?

    #69832
    TreeFrog
    Participant

    Hi again,

    Well, I admit I was pretty preoccupied with it for quite a while. Knowledge is power, though (and reassuring, too). I did my best to pay attention only to up-to-date, accurate info, and NOT read personal horror stories online that have nothing to do with me (and may even be made up – yes, there are evil trolls out there who do just that!).

    Realizing that the risk of this recurring was less than 5% was an important step for me as well. I put it in perspective, in a way – other things are MORE than 5% likely to happen to me, eventually – like a serious accident, for instance. And yet I don’t worry about accidents from day to day. So, it follows that if serious accidents are “under my worry radar,” well then, so should melanoma recurrences be.

    Other great thing is that there are new and better treatments every year, so even if I WAS on the wrong side of the statistic, by that time it might not be such a big hairy deal.

    To your question, though – even with all my logic, I still gave this a lot of attention for about a year. I felt preoccupied by it often. It’s a natural response to being threatened, but the good news is – it does play itself out. This forum was a great help!

    Best wishes,

    ~Wendy

    #69833
    point30
    Participant

    Well hearing stories like yours is very helpful. That is also why I named this forum very specifically- stage1B – so hopefully out conversation will help others out there that shared a similar diagnosis as us.

    I am going for my next procedure later this month to take out an additional margin. The oncologist said this was a safety precaution. I too will keep posting and checking up on this site as well…..

    I do feel pre-occupied- everything that everyone has said on here I can totally relate.

    #69834
    Catherine Poole
    Keymaster

    Thank you both! I am 28 years out now from a .76 melanoma. No recur! There are plenty of us around..

Viewing 15 posts - 1 through 15 (of 29 total)
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