Home Forums Melanoma: Newly Diagnosed – Stages I & II Genetic testing results

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  • #22072
    Happy_girl
    Participant

    After meeting with my dr- this test tested the genetic make-up of my specific melanoma tumor to check the likelihood of reoccurrence. It came back that mine is highly likely. Do any of you know of a test that is valid like this? I posted the link in my last post- it is skinmelanoma. Catherine- do any of the drs you work with know of a test like his that is valid? Because now I am scared to death.

    Thanks for all your insight.

    #64897
    TreeFrog
    Participant

    Hi Happy_girl,

    I looked at the website for the company (Castle Biosciences) that did the tissue genetic testing on your melanoma sample. Sorry they’ve got you so upset by rating you in a high-risk-of-metastasis group.

    Their website is interesting, but I have no idea what to make of it. I don’t think this kind of testing has been discussed on this forum before.

    Catherine, I wonder if you could get a member of the professional panel to look at this and see what they make of it? http://skinmelanoma.com/decisiondx-melanoma-test/test-overview-value/” class=”bbcode_url”>http://skinmelanoma.com/decisiondx-melanoma-test/test-overview-value/

    Hope we can get some perspective.

    ~Wendy

    #64898
    Happy_girl
    Participant

    Thank you for your thought Wendy. I appreciate them. I’m try not to feel scared to death- so far not working- lol. I guess time is what it will take. I am meeting with a melanoma specialist oncologist too. Hopefully that will be insightful as well.

    #64899
    Catherine Poole
    Keymaster

    This testing is not absolute for sure and there hasn’t been scientific validation. If a university based lab did this testing as part of a clinical trial there would be further validation. What is their indicator? What are they basing this on? Are they simply taking risk factors and adding them up? No one has this answer truly yet.

    #64900
    Happy_girl
    Participant

    Thank you for looking into this,Catherine. Needless to say, when I got the information I was crushed and felt completely defeated. I’m trying to get a better perspective on this now. I hope some day there is a test that is accurate with this- I’m just hoping mine isn’t. :). Thanks so much!

    #64901
    TreeFrog
    Participant

    Hi Happy_girl,

    I looked at the DecisionDx website a bit more thoroughly when I had a chance, and I notice that although they make a big deal of having presented their results at ASCO 2014 (this page: http://skinmelanoma.com/2014/06/02/study-shows-castle-biosciences-gene-expression-profile-test-successfully-identified-high-risk-disease-cohort-217-melanoma-patients-underwent-sentinel-lymph-node-biopsy/” class=”bbcode_url”>http://skinmelanoma.com/2014/06/02/study-shows-castle-biosciences-gene-expression-profile-test-successfully-identified-high-risk-disease-cohort-217-melanoma-patients-underwent-sentinel-lymph-node-biopsy/), what they are hanging their hats on is a study that involved only 217 people.

    Furthermore, they have not been able to provide any quotes from doctors who actually endorse the test – merely one quote, from a David H. Lawson, M.D. (not a melanoma specialist) who says that this type of gene testing “may” provide clinically significant information for assessing risk in melanoma patients.

    So really, their evidence is interesting, but still very thin when it comes to clinical reliability. Your doc probably bought into the advertising, and feels the test result will be helpful. I’m not saying it’s worthless – just lacking in truly robust evidence.

    If your doctor uses your test results to justify greater vigilance (more testing, scans perhaps) to nip any recurrence in the bud, then great! You can feel reassured that you are well taken care of. But try not to let this test result scare you – the test is hardly a sure thing.

    Hope this helps,

    ~Wendy

    #64902
    Catherine Poole
    Keymaster

    Wendy, good points! How useful is this testing for predictive value, and then what will you do with it? You can’t be prescribed any of the new therapies for melanoma unless you are unresectable stage 3 or stage 4. I’m disappointed in these testing agencies and find most interested in a profit motive rather than helping people. If a good predictive test became available it would be out of a decent University based lab and the doctor would administer.

    #64903
    Happy_girl
    Participant

    Thank you so much ladies!!!! My husband and I were so upset with the results- afraid he was going to lose his wife and our baby wouldn’t have a mom. I am thankful that through this I get to see a melanoma specialist oncologist ( university hospital in cleveland) and get a pet scan. So hopefully I will get some peace of mind through both of these things. I appreciate your time! Thanks for helping a scared newbie like me.

    #64904
    farang100
    Participant

    I had a look at their website and when you start to look for some research papers other than the one study they have you cant find anything backing up their test.

    Having said that everybody who gets melanoma has a chance or recurrence albeit a very small one for the smaller melanomas.

    If you believe that melanoma is a systemic disease then you should take the opportunity to fine tune your health and super charge your immune sytstem so that you further stack the odds in your favour.

    To check how well your immune system is working you could take a test like they do for HIV eg CD4 CD8 and look at the counts and ratio etc that would tell you how well your immune system is running along with tumour markers like S100 CEA Homocysteine, LDH and a total blood count.

    Then if there are any irregularities try to rectify them.

    #64905
    Happy_girl
    Participant

    Thanks everyone. I’m trying not to live scared. So hard. They pretty much had me as 98% sure I should be in class 2, which just has me at my wits end. I need to focus on right now I am melanoma free- and I need to work on building my immune system- living a healthy life- and loving people. Have a great 4th of July!

    #64906
    Happy_girl
    Participant

    Hi! I just wanted to share that I got my pet scan results back and they were negative! I now completely understand when people have talked about scanxiety. Thanks for your thoughts and prayers! I meet with a melanoma specialist oncologist this week. I’m anxious to hear what he has to say. I don’t even know how often he will see me since he only sees stage 3 and 4 patients. I’m thankful he agreed to talk with me. I hope you all are doing well.

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