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Castle Test

› Forums › General Melanoma Community › Castle Test

  • Post
    • May 7, 2019 at 6:07 pm
    Ellenb
    Participant
      Hello, Everyone,
      Thank you all for the support you give on this site. I’m brand new here. I am waiting for the results of the Castle Test-tissue was sent out a week ago. My doctor does not want to discuss pretty much anything until we have the results. I’m the kind of person who likes to prepare ahead of time. Could anyone please share with me what has happened to you once you received your results? Thank you so much.
      Ellen
    Viewing 5 reply threads
    • Replies
        • May 8, 2019 at 1:43 pm
        mandyjill
        Participant
          This is the first I have heard of a Castle Test. I googled it and it’s very good to know this is available.
            • May 8, 2019 at 6:17 pm
            Ellenb
            Participant
              I hope this helps. It’s all new to me too.
            • May 8, 2019 at 1:43 pm
            mandyjill
            Participant
              This is the first I have heard of a Castle Test. I googled it and it’s very good to know this is available.
              • May 8, 2019 at 1:56 pm
              ed williams
              Participant
                Hi Ellen, the test has been around for several years and the company has been trying to get it used my more oncologist but to the best of my knowledge it is still kind of a fringe product. It does give some more information for stage 1 and 2 folks but doesn’t change treatment protocol since there is no treatment for stage 1 or 2, but might led to closer follow up by dr if test shows higher risk of relapse!!! I would assume that you are in the early staging part of the melanoma journey, where usually decisions are based on depth of tumor. Best Wishes!!!Ed
                  • May 8, 2019 at 6:26 pm
                  Ellenb
                  Participant
                    Thank you so much, Ed. Yes, I am very early in the journey, and it’s so difficult waiting for results. As of now, I’ll be seeing the doctor every three months, but who knows once more is known. The doctor tells me that a SLN biopsy isn’t necessary since we’re doing the Castle test. What worries me too is that my daughter was diagnosed with melanoma many years ago. Thank God she has not had a reoccurrence. My other daughter is of course extremely upset.
                    Anyway, thanks again for your response.
                    • May 8, 2019 at 8:12 pm
                    ed williams
                    Participant
                      Hi Ellen, the Castle test is not standard of care in melanoma, but a tool to get more information. To do or not do a SLN biopsy decision should be based on depth of tumor and you could consider other factors but the Castle test is not listed to my knowledge as part of the staging guidelines. Here is a link to Aim at melanoma that goes over staging, as well MRF has information as well. https://www.aimatmelanoma.org/diagnosing-melanoma/
                      • May 8, 2019 at 9:44 pm
                      Ellenb
                      Participant
                        Thanks again, Ed. I’ll definitely go to the link you sent. I’m beginning to better understand this test after reading your post and Laurie’s.
                      • May 8, 2019 at 9:25 pm
                      ourvan
                      Participant
                        Hi Ellen,
                        I had the Castle genetic test about a year ago, and as was posted above, it was just additional information to supplement any future treatment options. I was staged at 1B initially, and the Castle results just helped my doctor decide whether he needed to adjust how many times a year he wanted to see me. He didn’t, and I see him (surgical oncologist) every 6 months as initially determined. (I do, however, continue to see my dermatologist every 3 months) As I understood it when the test was offered to me, my doctor explained that it would first go through my insurance company, which would most likely deny it (they did, more than once), but that Castle would ultimately just absorb the cost of the test, so I would be charged nothing. Interestingly, Castle is still appealing to my insurance company, and it’s been over a year.
                        laurie
                          • May 8, 2019 at 9:39 pm
                          Ellenb
                          Participant
                            Hi, Laurie,
                            Thank you very very much. Did you also have a SLN biopsy in addition to the Castle test? Also if I may ask, when you mentioned that you were staged at 1B initially, did it change after further testing? My doctor did mention that the company would absorb any of the cost that insurance didn’t cover. That’s a relief because it’s quite pricey as I understand. Best of luck, Laurie, and thanks again for your response.
                            Ellen
                            • May 9, 2019 at 7:44 pm
                            ourvan
                            Participant
                              Hi Ellen,
                              Yes, I did have a SLN biopsy at the time of the excision (3/18), and no cancer cells were found in the 3 nodes removed. Pieces/slices (?) of my tumor were sent to Castle about 3 weeks post surgery, and the results came back as “approximately 14% chance of recurrence over 5 years”. My doctor said that he would continue to monitor me every 6 months, along with my dermatologist every 3 months, but no further procedures as a result of this particular test. The amount billed to my insurance was $8,500.00!

                              laurie

                              • May 9, 2019 at 7:48 pm
                              ourvan
                              Participant
                                Oh, and to piggyback on Ed’s response, the Castle test is one of genetics, to determine the probability of a recurrence, therefore possibly changing the plan moving forward. I don’t believe it has anything to do with the staging process, and is independent of whether a SNLB is required or suggested in a patient’s individual case.
                                • May 9, 2019 at 10:02 pm
                                Ellenb
                                Participant
                                  Hi, Laurie,
                                  Here is where I’m confused. Is this test to determine risk of recurrence as well as possible metastasis? On the company’s website, both issues are mentioned. It’d be great if it did cover both. I’m so glad for you that no cancer cells were found in your lymph nodes. What a relief! And 14% doesn’t sound like much, does it? I called my doctor today to discuss the SLN biopsy even though she initially said I didn’t need it. No call back!
                                  $8500-WOW!
                                  • May 10, 2019 at 6:08 pm
                                  ourvan
                                  Participant
                                    Yes, from looking at the website today I can see where it would be confusing. It may be that my surgeon shared only the part about the probability because I’d already had the SNLB? I’ll have to go home and find the paperwork and see exactly what it said. If it’s clearer on the results form I’ll circle back.
                                    laurie
                                    • May 11, 2019 at 9:02 pm
                                    Ellenb
                                    Participant
                                      Thanks for confirming my reason for being confused., Laurie. It’ll be two weeks on Tuesday – am anxiously waiting to hear the test results. . I did get a call back about the biopsy telling me that the margins are clear and that the staging didn’t change. So relieved about that. I am enjoying communicating with you – sort of a kindred spirit!
                                    • May 9, 2019 at 8:01 pm
                                    ThinkingPositive
                                    Participant
                                      Hi Ellen,
                                      I received the Castle results long after my treatment (excision/SLNB/graft) for Stage 2A was completed. I had the lower of the risks for recurrence and the results did not change my treatment plan of seeing the dermatologist q 3 months. I hope your results are lowest risk too!.
                                        • May 9, 2019 at 9:54 pm
                                        Ellenb
                                        Participant
                                          Thanks so much, ThinkingPositive! Here’s hoping! I’m very glad for your results!
                                        • May 27, 2019 at 11:26 pm
                                        Joycem
                                        Participant
                                          Hi Ellen,
                                          I had a thick nodular amelanotic lesion node negative and castle test came back in the highest risk group (2b) a couple years ago. Hasn’t made much difference in my follow up which is watch and wait and so far so good. (Chest x Ray every 6 mo, some blood tests, and follow up w onc for 2 years, then derm ongoing every 6mo.)

                                          My insurance did eventually pay.
                                          It is really a measure of risk for mets, another tool but can’t tell you anything certain. My take home is I don’t blow off appts. Keep a watch for any symptoms of met, try keep immune system in shape -eat healthy and exercise and deal with stress in a positive way etc.

                                          Wishing you continued health and joy. -Joyce

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