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Thread: Melanoma diagnosis advice/support appreciated

  1. #1
    Newbie New User
    Join Date
    Sep 2017

    Melanoma diagnosis advice/support appreciated

    Hi there,
    I've spent some time reading others stories trying to make sense of it all.
    I'm a 36 year old mom of 2, diagnosed with SSM two days ago. I have a copy of my path report, but it will be two weeks before I have further tests ( CT & Ultrasound) and meet with a dermatologist and oncologist to find out the stage etc. The wait is driving me mad, I have been dealing with anxiety for months, it took almost four months to get an appointment to have the lesion removed, it was done by a general surgeon and was not a WLE, he did happen to get clear margins though, although not 1cm all round as seems the norm. Now more waiting. I have had some other health issues over the past few months so my mind is going crazy making all kinds of connections between everything. The melanoma was in my neck a little below my ear, not a good place to start with.

    From what I understand from my report it doesn't look that bad, but the thought that it might have spread keeps me from being optimistic.
    My tumour thickness was 0.6mm
    Clark level 2
    No ulceration, no regression, no lymphovascular or perineural invasion noted
    there was however a mitotic rate of 2 per square millimetre that worries me the most
    It also mentions it's still in the radial growth phase, but I'm not sure if that is accurate given the Clark level?

    Any advice or personal accounts would be appreciated, from what I have read so far it seems many of you dealing with this are very well informed and that is comforting. The doctor that gave me the diagnosis chose to pick only the mitotic rate off my results and point out that she thought that was low and it looked good. After hours of research I now know that she clearly had no idea how to read my report and was grasping at straws. In her defence she is a young GP and clearly hasn't had to deal with these kinds of results often. However waiting 2 weeks to see a specialist is driving me mad. Sorry for a long rambling post, Iím new to all of this and not well informed on forum etiquette

  2. #2
    Dear Yvelee: Welcome to the forum, and someone who is familiar with melanoma should be along shortly. Being a newcomer to cancer is hard, and one the great challenges you first face is not knowing very much about your disease, and the options you have for treatment. This can bring on a fair amount of anxiety, you note that you "are going crazy making all kinds of connections". The one thing I want to warn you about is do not try to learn more about your disease from Dr. Google!! This is by far and away the greatest mistake newcomers make, and it's a very slippery slope that you do not want to walk on. Apart from the melanoma forum, you can look around in The Lounge and Inspirational Stories forum to see that having cancer is not at all the end of the world.

    Best regards, DMW
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Onc estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective
    12/4/17 Diagnosis: Uncontrolled refractory AML

  3. #3
    Senior User
    Join Date
    Jan 2014
    Hi Yvelee,

    I'm sorry to hear you are going through this. It really is a scary place to be, and I know the waiting is awful. I am not an expert by any means, but I do think you have a lot more reasons to be reassured than not. The tumor thickness below 1 mm, for example, is very good. The lack of ulceration, regression, all of those things also very good. One of the more fortunate things about SSM versus nodular melanoma...it does have a lengthy radial growth phase where it does not reach down into the lymphovascular levels, which is how melanoma spreads, and it sounds like your biopsy showed no lymphovascular or perineural invasion, also very good things. I am not, however, certain how the mitotic rate of 2 might factor in.

    You will want to have the WLE and make sure to get clear margins. Although the mitotic rate is an area of uncertainty to me, a lesion below 1 mm in thickness would generally be considered unlikely to have spread to lymph nodes and therefore sentinel lymph biopsy is not even recommended at these lower Breslow depths, and at the lower stages, beyond the WLE to get clear margins, there is usually really no treatment necessary besides safe sun practices and regular whole-body skin checks from here on out.

    Those are my thoughts, though again I am just another patient and far from an expert, just someone who has spent a great deal of time on cancer forums and researching melanoma over the past few years. So, again, there are some areas where I am uncertain, but overall I do think you have good reason to be optimistic, too.

    Between appointments, all I can say is try to keep busy and keep your mind focused as much on other things as possible. It is easy to let the anxiety run away with us, but one thing having melanoma has taught me is that it is best not to be upset about something that has not even happened!! What works best for me is plain and simple distraction.

    Anyway, hugs to you, and I hope you will come back and update!!

    Best wishes!

    Last edited by CheriD; 09-02-2017 at 09:02 PM. Reason: Clarity, additional thoughts
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016
    No sign of recurrence, January 2019

  4. #4
    Newbie New User
    Join Date
    Sep 2017
    Thank you so much for taking the time to reply to me. In my crazy first days after being diagnosed, I completely forgot I joined the forum so didn't check back until now! I'm happy to say that I am coping much better now that the initial shock has worn off. I am cautiously optimistic that my results will be stage 1b, but also gradually accepting that it might not and there will be a longer road ahead. My chest x-ray came back all clear, so one less area to be concerned about. Your sentiment about not being upset about something that hasn't happened is my husbands motto too I am reminded daily, and it's a wise approach. I still have a few long days of waiting ahead, but I will be sure to check back in and update when I have my results. Thank you again, your reassurance has made me feel so much better, just knowing someone else out there has shared the experience makes it less daunting.

    Keep well xx


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