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Anyone have experience with the new DecisionDx test?

Forums Cutaneous Melanoma Community Anyone have experience with the new DecisionDx test?

  • Post
    MindyD
    Participant

      Hi all,

      New to the forum, as I was diagnosed earlier this month.  It's been a crazy couple of weeks, and I have learned a lot from stalking this forum.  πŸ˜‰

      I am one week out from having the WLE and SLN biopsy, which removed 5 axillary nodes – all negative.  Yay!

      This puts me at at Stage IIa.  My surgical oncologist decided to submit the tumor for a new test that they've only been doing for about 6 months.  It is called DecisionDx – Melanoma, performed by Castle Biosciences, Inc.  It is a gene expression profile test…  Quote from the site:   "…a molecular test which has been shown to identify tumors at high-risk for metastasis more accurately than the factors currently used by doctors, including the depth of the melanoma (Breslow's thickness)".

      My doc says that if it comes back in the Class 2 (high risk) category, then there is a better argument to have further tests/scans to check for spreading, which insurance is more likely to cover.  He also said risk for recurrence would be higher, so we might go ahead with adjuvent treatment.

      I am thrilled that something like this now exists, as I did not like the idea of the "wait and see" approach for the next 5 years.  Especially since it had been 6 years since I had seen a dermatologist prior to having this mole removed.  Who knows how long it's been there…  and I've heard several examples of Stage 2 skipping 3 altogether and goind directly to 4. 

      From the studies I've read, the accuracy of past patients has been highly accurate.  I should get results in a couple weeks.  In the meantime, I tried to find some threads about this topic, to no avail.  Has anyone had this test done that would like to share their experience? 

      Thanks!

    Viewing 17 reply threads
    • Replies
        Janner
        Participant

          I think it is relatively new.  I've seen one discussion somewhere – but that's about it.  I've not seen anything posted here I don't think.  There is clinical trial data for it but that's about it.  Good luck on your research.

          Janner
          Participant

            I think it is relatively new.  I've seen one discussion somewhere – but that's about it.  I've not seen anything posted here I don't think.  There is clinical trial data for it but that's about it.  Good luck on your research.

            Janner
            Participant

              I think it is relatively new.  I've seen one discussion somewhere – but that's about it.  I've not seen anything posted here I don't think.  There is clinical trial data for it but that's about it.  Good luck on your research.

              jenny22
              Participant

                Hi Mindy-

                I had the test done in sept. 2013….it was a very odd set of circumstances.  The Dr. I saw locally said he'd like to order the test…..so it was done…..when i asked him for the results a few weeks later, he told me Oh, they all come back the same, so i dont even pay attention to what they say"….i was very frustrated with him, and never got the results….though I did get bills from Castle, and my insurance…I followed up again and still never got the results. Shame on me for not going there in person and demanding the information.

                So, fast forward to nov. 2014…i now have two tiny subq intransit mets, and just went from stage 1b to IIIB…i decided to force the issue and called him back and this time they did send me the results…which said i was at HIGH risk for recurrence, so needless to say i was dissappointed and furious that i never got this info last year.

                The interesting thing here is that I brought this up with all the ONCs i have sen recently…MSKCC, NYU, PENN, Sinai, and rugters…..and they all said the test is too new, and not reliable, and none of them is using it….at least not yet.

                So not really sure what the validity of it is….probably dwon the road it will get clearer, but as of today, doesnt seem to get overhwleming endorsemsents!

                hope this helps…and best of luck to you.

                j

                jenny22
                Participant

                  Hi Mindy-

                  I had the test done in sept. 2013….it was a very odd set of circumstances.  The Dr. I saw locally said he'd like to order the test…..so it was done…..when i asked him for the results a few weeks later, he told me Oh, they all come back the same, so i dont even pay attention to what they say"….i was very frustrated with him, and never got the results….though I did get bills from Castle, and my insurance…I followed up again and still never got the results. Shame on me for not going there in person and demanding the information.

                  So, fast forward to nov. 2014…i now have two tiny subq intransit mets, and just went from stage 1b to IIIB…i decided to force the issue and called him back and this time they did send me the results…which said i was at HIGH risk for recurrence, so needless to say i was dissappointed and furious that i never got this info last year.

                  The interesting thing here is that I brought this up with all the ONCs i have sen recently…MSKCC, NYU, PENN, Sinai, and rugters…..and they all said the test is too new, and not reliable, and none of them is using it….at least not yet.

                  So not really sure what the validity of it is….probably dwon the road it will get clearer, but as of today, doesnt seem to get overhwleming endorsemsents!

                  hope this helps…and best of luck to you.

                  j

                    MindyD
                    Participant

                      Thanks so much for sharing, Jenny!

                      Sorry to hear about your frustrating experience.  My doc is absolutely going to use the results to determine whether to do scans or preventative treatment, but more so as a justification to my insurance company. 

                      I've heard of the possibility of intransit mets, even though nodes are clear.  How did they catch it for you?   

                      MindyD
                      Participant

                        Thanks so much for sharing, Jenny!

                        Sorry to hear about your frustrating experience.  My doc is absolutely going to use the results to determine whether to do scans or preventative treatment, but more so as a justification to my insurance company. 

                        I've heard of the possibility of intransit mets, even though nodes are clear.  How did they catch it for you?   

                        jenny22
                        Participant

                          "they" didnt catch it…I did….i was sitting on an airplane and happened to touch my neck and felt a tiny pea size lump…there were two….i went to my derm the following week and had them removed and got the news in two days…YUP, melanoma was back.

                          I am stil hoping my lymph nodes are clear, but never was able to have a SNB biopsy, and no LN removal as a result…I had ultra sounds every 6 monhts last year, and nothing was visible or palpable….of course that doesnt mean there may not be microscopic traces….BUT so far all the oncs are staging me at IIIb, still assuming negative nodal status.

                          There has even been some discussion that they arent "true" instransits….and may be due to inaqeduate WLE from last year….

                          UGH, so many questions….just hoping i have a littel good luck, but reading about Intransit mets can be very discouraging.

                           

                           

                           

                          jenny22
                          Participant

                            "they" didnt catch it…I did….i was sitting on an airplane and happened to touch my neck and felt a tiny pea size lump…there were two….i went to my derm the following week and had them removed and got the news in two days…YUP, melanoma was back.

                            I am stil hoping my lymph nodes are clear, but never was able to have a SNB biopsy, and no LN removal as a result…I had ultra sounds every 6 monhts last year, and nothing was visible or palpable….of course that doesnt mean there may not be microscopic traces….BUT so far all the oncs are staging me at IIIb, still assuming negative nodal status.

                            There has even been some discussion that they arent "true" instransits….and may be due to inaqeduate WLE from last year….

                            UGH, so many questions….just hoping i have a littel good luck, but reading about Intransit mets can be very discouraging.

                             

                             

                             

                            MindyD
                            Participant

                              Wow… I'm very new to this, but I find it very odd that after all that, you still haven't had an SLNB… Especially with evidence of mets appearing IN the lymphatic system. 

                              MindyD
                              Participant

                                Wow… I'm very new to this, but I find it very odd that after all that, you still haven't had an SLNB… Especially with evidence of mets appearing IN the lymphatic system. 

                                jenny22
                                Participant

                                  Too much detail and too complicated to explain, but it was not possible for it to be done…..nor is it now!

                                  i wish it could have beendone, but wasnt possible.

                                  jenny22
                                  Participant

                                    Too much detail and too complicated to explain, but it was not possible for it to be done…..nor is it now!

                                    i wish it could have beendone, but wasnt possible.

                                    jenny22
                                    Participant

                                      Too much detail and too complicated to explain, but it was not possible for it to be done…..nor is it now!

                                      i wish it could have beendone, but wasnt possible.

                                      MindyD
                                      Participant

                                        Wow… I'm very new to this, but I find it very odd that after all that, you still haven't had an SLNB… Especially with evidence of mets appearing IN the lymphatic system. 

                                        jenny22
                                        Participant

                                          "they" didnt catch it…I did….i was sitting on an airplane and happened to touch my neck and felt a tiny pea size lump…there were two….i went to my derm the following week and had them removed and got the news in two days…YUP, melanoma was back.

                                          I am stil hoping my lymph nodes are clear, but never was able to have a SNB biopsy, and no LN removal as a result…I had ultra sounds every 6 monhts last year, and nothing was visible or palpable….of course that doesnt mean there may not be microscopic traces….BUT so far all the oncs are staging me at IIIb, still assuming negative nodal status.

                                          There has even been some discussion that they arent "true" instransits….and may be due to inaqeduate WLE from last year….

                                          UGH, so many questions….just hoping i have a littel good luck, but reading about Intransit mets can be very discouraging.

                                           

                                           

                                           

                                          MindyD
                                          Participant

                                            Thanks so much for sharing, Jenny!

                                            Sorry to hear about your frustrating experience.  My doc is absolutely going to use the results to determine whether to do scans or preventative treatment, but more so as a justification to my insurance company. 

                                            I've heard of the possibility of intransit mets, even though nodes are clear.  How did they catch it for you?   

                                          jenny22
                                          Participant

                                            Hi Mindy-

                                            I had the test done in sept. 2013….it was a very odd set of circumstances.  The Dr. I saw locally said he'd like to order the test…..so it was done…..when i asked him for the results a few weeks later, he told me Oh, they all come back the same, so i dont even pay attention to what they say"….i was very frustrated with him, and never got the results….though I did get bills from Castle, and my insurance…I followed up again and still never got the results. Shame on me for not going there in person and demanding the information.

                                            So, fast forward to nov. 2014…i now have two tiny subq intransit mets, and just went from stage 1b to IIIB…i decided to force the issue and called him back and this time they did send me the results…which said i was at HIGH risk for recurrence, so needless to say i was dissappointed and furious that i never got this info last year.

                                            The interesting thing here is that I brought this up with all the ONCs i have sen recently…MSKCC, NYU, PENN, Sinai, and rugters…..and they all said the test is too new, and not reliable, and none of them is using it….at least not yet.

                                            So not really sure what the validity of it is….probably dwon the road it will get clearer, but as of today, doesnt seem to get overhwleming endorsemsents!

                                            hope this helps…and best of luck to you.

                                            j

                                            Happy_girl
                                            Participant

                                              Thought i would share my experience with this.  After my surgeries- I was diagnosed 1b.  Meanwhile my surgeon sent tissue to castle- it came back class 2…. High risk.  Had the pet scan- all clear.  My sentinal node was double checked and they had missed a micro met the first time around.  I went to mskcc and they do not credit castle at all- telling me I should really be very positive.  I guess my point is to take it with a grain of salt.  Mine came back class 2 and I went into panic mode – but then we found out  micromets were missed- so I should have been stage 3a already. It is a great idea…. But there is sooo much to learn still.  The data is shaky from what I have been told.

                                              Happy_girl
                                              Participant

                                                Thought i would share my experience with this.  After my surgeries- I was diagnosed 1b.  Meanwhile my surgeon sent tissue to castle- it came back class 2…. High risk.  Had the pet scan- all clear.  My sentinal node was double checked and they had missed a micro met the first time around.  I went to mskcc and they do not credit castle at all- telling me I should really be very positive.  I guess my point is to take it with a grain of salt.  Mine came back class 2 and I went into panic mode – but then we found out  micromets were missed- so I should have been stage 3a already. It is a great idea…. But there is sooo much to learn still.  The data is shaky from what I have been told.

                                                  MindyD
                                                  Participant

                                                    Thanks, Happy!

                                                    If you don't mind me asking, how did they find the micro met that was missed the first time?  Did the Castle test result cause them to go back and look again?  Seems scary to me that it can be missed that easily.

                                                    MindyD
                                                    Participant

                                                      Thanks, Happy!

                                                      If you don't mind me asking, how did they find the micro met that was missed the first time?  Did the Castle test result cause them to go back and look again?  Seems scary to me that it can be missed that easily.

                                                      MindyD
                                                      Participant

                                                        Thanks, Happy!

                                                        If you don't mind me asking, how did they find the micro met that was missed the first time?  Did the Castle test result cause them to go back and look again?  Seems scary to me that it can be missed that easily.

                                                        Happy_girl
                                                        Participant

                                                          Great question!  It was double checked because at that point k said if I am going to see an oncologist- they need to be a melanoma Specialist.  Once I got referred- they checked the node and said it was missed with a special stain (or lack of using a special stain).  It was a very very small amount but it was there.  It is not common for melanoma to be missed in the node I believe- but it happened to me.  I have tried to think on the positive side tho that it was so small that it was missed the first time- so that can only be good πŸ™‚ hope this helps u! 

                                                          Happy_girl
                                                          Participant

                                                            Great question!  It was double checked because at that point k said if I am going to see an oncologist- they need to be a melanoma Specialist.  Once I got referred- they checked the node and said it was missed with a special stain (or lack of using a special stain).  It was a very very small amount but it was there.  It is not common for melanoma to be missed in the node I believe- but it happened to me.  I have tried to think on the positive side tho that it was so small that it was missed the first time- so that can only be good πŸ™‚ hope this helps u! 

                                                            Happy_girl
                                                            Participant

                                                              Great question!  It was double checked because at that point k said if I am going to see an oncologist- they need to be a melanoma Specialist.  Once I got referred- they checked the node and said it was missed with a special stain (or lack of using a special stain).  It was a very very small amount but it was there.  It is not common for melanoma to be missed in the node I believe- but it happened to me.  I have tried to think on the positive side tho that it was so small that it was missed the first time- so that can only be good πŸ™‚ hope this helps u! 

                                                              MmP15
                                                              Participant
                                                                Sooo much going on. Recently saw MelaGenix 2nd generation gene expression test.
                                                              Happy_girl
                                                              Participant

                                                                Thought i would share my experience with this.  After my surgeries- I was diagnosed 1b.  Meanwhile my surgeon sent tissue to castle- it came back class 2…. High risk.  Had the pet scan- all clear.  My sentinal node was double checked and they had missed a micro met the first time around.  I went to mskcc and they do not credit castle at all- telling me I should really be very positive.  I guess my point is to take it with a grain of salt.  Mine came back class 2 and I went into panic mode – but then we found out  micromets were missed- so I should have been stage 3a already. It is a great idea…. But there is sooo much to learn still.  The data is shaky from what I have been told.

                                                                Squash
                                                                Participant

                                                                  I havent heard of this test but i did a similar predcitive test called the circulating tumour cell test.

                                                                  It is highly predicitive or recurrence and distant spread.

                                                                  I am not sure why it is commonly used for cancer patients when there has been a lot of research already on it.

                                                                   

                                                                  Squash
                                                                  Participant

                                                                    I havent heard of this test but i did a similar predcitive test called the circulating tumour cell test.

                                                                    It is highly predicitive or recurrence and distant spread.

                                                                    I am not sure why it is commonly used for cancer patients when there has been a lot of research already on it.

                                                                     

                                                                    Squash
                                                                    Participant

                                                                      I havent heard of this test but i did a similar predcitive test called the circulating tumour cell test.

                                                                      It is highly predicitive or recurrence and distant spread.

                                                                      I am not sure why it is commonly used for cancer patients when there has been a lot of research already on it.

                                                                       

                                                                      cece
                                                                      Participant

                                                                        Hi Mindy,

                                                                        I was wondering if you had received your results from the DecisionDX gene test yet? I was diagnosed in January 2015 with stage 1B melanoma (0.8mm, no ulceration, mitotix index > 1mm squared). My wide look margins were clear and my sentinel lymph node biospy was negative. They sent my tumor off for the DecisionDX test a few weeks ago, but I've yet to receive the results. I'm still unclear as to how accurate the gene test is- is it 100%, with no room for error? I'd be curious to know what your doctor recommended you do re: treatment after you got your results. 

                                                                        Thanks!

                                                                        Cecelia

                                                                        cece
                                                                        Participant

                                                                          Hi Mindy,

                                                                          I was wondering if you had received your results from the DecisionDX gene test yet? I was diagnosed in January 2015 with stage 1B melanoma (0.8mm, no ulceration, mitotix index > 1mm squared). My wide look margins were clear and my sentinel lymph node biospy was negative. They sent my tumor off for the DecisionDX test a few weeks ago, but I've yet to receive the results. I'm still unclear as to how accurate the gene test is- is it 100%, with no room for error? I'd be curious to know what your doctor recommended you do re: treatment after you got your results. 

                                                                          Thanks!

                                                                          Cecelia

                                                                            MindyD
                                                                            Participant

                                                                              Hi Cecelia,

                                                                              Sorry for the delayed response.  Not sure if the site offers any kind of notifications, but I have yet to find any settings for it.  I just happened to stumble on my own post when I googled info about the Decision Dx test!  lol

                                                                              Unfortunately, I have heard nothing yet.  I had a follow-up appt with my onc surgeon 2 weeks ago and he said the results were not back yet and to call him back in a couple weeks.  I just called today and left a message for his nurse to call me.  Who knows how long it will take.  I'm approaching 2 months… Very frustrating! 

                                                                              I did find a few articles in my research, which shows some stats.  They come right up when you google "Decision Dx Melanoma test" 

                                                                              Sorry I can't be of more help!

                                                                               

                                                                               

                                                                              cece
                                                                              Participant

                                                                                Hi Mindy,

                                                                                Thanks so much for the reply! I'm with you- I've yet to figure out how to check for replies to messages I post on here. I was once again google-ing Decision Dx and your post came up again and I noticed you had responded.

                                                                                I still have not received my results. It turns out that my doctor had trouble getting the slides sent off. Apparently DecisionDX requires 10 slides of the melanoma tumor and even then, there's no guarantee they'll be able to run the test. His nurse told me that they can only run the test if there is a high enough concentration of cancer cells in the 10 slides. Given that this gene test is designed for stage 1 and stage 2 patients, I'm hoping those of us with melanomas on the smaller size will still have enough cancerous cells for them to run it. 

                                                                                Have you heard anything yet? Any idea what course of action the doctor recommends if we do come back in the unlucky 69% group? I am the first patient that my doctor has run this test on, and even though he attended a conference on the test with Bio Castle, he hasn't given me a lot of input as to all of the "what if's." 

                                                                                I've also been surprised by the lack of information out there about this test. You'd think with melanoma being diagnosed at such a high rate these days that this test would be more mainstream. My dermatologist hadn't even heard of it. 

                                                                                Keep me posted on what you learn (and how long it took!) And keep following up with your doctor- my nurse told me it had been sent off only to find out weeks later it hadn't. Doctors are great and all, but I'm learning more and more that you have to be your own advocate.

                                                                                Thanks again,

                                                                                Cecelia

                                                                                cece
                                                                                Participant

                                                                                  Hi Mindy,

                                                                                  Thanks so much for the reply! I'm with you- I've yet to figure out how to check for replies to messages I post on here. I was once again google-ing Decision Dx and your post came up again and I noticed you had responded.

                                                                                  I still have not received my results. It turns out that my doctor had trouble getting the slides sent off. Apparently DecisionDX requires 10 slides of the melanoma tumor and even then, there's no guarantee they'll be able to run the test. His nurse told me that they can only run the test if there is a high enough concentration of cancer cells in the 10 slides. Given that this gene test is designed for stage 1 and stage 2 patients, I'm hoping those of us with melanomas on the smaller size will still have enough cancerous cells for them to run it. 

                                                                                  Have you heard anything yet? Any idea what course of action the doctor recommends if we do come back in the unlucky 69% group? I am the first patient that my doctor has run this test on, and even though he attended a conference on the test with Bio Castle, he hasn't given me a lot of input as to all of the "what if's." 

                                                                                  I've also been surprised by the lack of information out there about this test. You'd think with melanoma being diagnosed at such a high rate these days that this test would be more mainstream. My dermatologist hadn't even heard of it. 

                                                                                  Keep me posted on what you learn (and how long it took!) And keep following up with your doctor- my nurse told me it had been sent off only to find out weeks later it hadn't. Doctors are great and all, but I'm learning more and more that you have to be your own advocate.

                                                                                  Thanks again,

                                                                                  Cecelia

                                                                                  MindyD
                                                                                  Participant

                                                                                    Hi Cecilia,

                                                                                    So sorry for the late reply!  I haven't logged in for awhile.  I heard back from my doc a few days after my last message… Said I was low risk!  Actually went further to say I was 95% likely to remain cancer free after 5 years. πŸ™‚  

                                                                                    Hopefully you will get results soon. I can tell you that my doc was planning to use the results (if high risk) to justify the necessity of further scans to check for mets.  Insurance is more likely to approve scans with proof of higher risk in stage 2 patients who would otherwise have no further treatment.  I'll never understand why full body scans are not an automatic for someone who has confirmed cancer in their body!  But who am I? 

                                                                                    Hope you are well and here's hoping for similar results for you!  Let me know!  πŸ™‚

                                                                                     

                                                                                     

                                                                                    cece
                                                                                    Participant

                                                                                      Thanks for letting me know, and congrats! That's wonderful news. I'm sure you are relieved. Is your plan of action going forward to do skin check appointments with your dermatologist every 3 months? That's what I'm doing, and seeing my surgical oncologist twice a year. It's a lot of doctor visits but I'm happy to do it. I keep second guessing every mole I come across (I'm so worried they'll be another melanoma one…)

                                                                                      I'm still waiting on my Decision DX results. Fingers crossed I have similar results. 

                                                                                      Cecelia

                                                                                      cece
                                                                                      Participant

                                                                                        So, my oncologist just called. Unfortunately, my tissue sample wasn't dense enough for Decision DX to run the gene test on. They said there weren't enough cancer cells in my sample. He implied the company has been having a lot of problems with this. Given that this test is specificially designed for stage 1 and 2 melanoma patients, you would think they would be able to work with smaller size tumors, since, just by definition, that's what stage 1 and 2 patients have. It's very disappointing, though at least he didn't call to say I'm in the 69% group. Although I still could be. Ugh!  I guess I'm back to the old wait and see program. 

                                                                                        JC
                                                                                        Participant

                                                                                          I agree, I was also disappointed.  I am also Stage I and I was going to try to have this done but when my slide was reviewed it was determined that given their requirements for analysis more tumor tissue was needed (the focus of my tumor was too small).  But my Dr was unsure of what we would do w/ the results, would it change anything we're doing?

                                                                                          cece
                                                                                          Participant

                                                                                            Hi, I was wondering if anyone would read or respond! I'm so disappointed. I am stage 1B, diagnosed in January of this year (0.8mm, no ulceration, mitotic index >1, negative SLNB). I really thought with this test being geared toward stage 1 and 2 patients that they'd be able to do it- in all of the articles and reports I've read about this gene test, not one mentioned the (apparently high) possibility that our tumors would be too small or too unconcentrated. My oncologist said if I had been in the 69% chance of metastasis, he would have used the results to justify scans (ct scans, etc) to the insurance company. My thought is- why not scan me once a year just to be safe regardless? But I guess that opens a whole new set of worries and concerns and risks. Did you have a negative SLNB? I realize I'm lucky to have caught it early and the odds are in my favor that we caught it before it spread, but to have that knowledge with a greater level of certainty would have been helpful. Are you currently being seen every 3 months by your dermatologist? Have they recommended anything further at this point?

                                                                                            Thanks,

                                                                                            Cecelia

                                                                                            cece
                                                                                            Participant

                                                                                              Hi, I was wondering if anyone would read or respond! I'm so disappointed. I am stage 1B, diagnosed in January of this year (0.8mm, no ulceration, mitotic index >1, negative SLNB). I really thought with this test being geared toward stage 1 and 2 patients that they'd be able to do it- in all of the articles and reports I've read about this gene test, not one mentioned the (apparently high) possibility that our tumors would be too small or too unconcentrated. My oncologist said if I had been in the 69% chance of metastasis, he would have used the results to justify scans (ct scans, etc) to the insurance company. My thought is- why not scan me once a year just to be safe regardless? But I guess that opens a whole new set of worries and concerns and risks. Did you have a negative SLNB? I realize I'm lucky to have caught it early and the odds are in my favor that we caught it before it spread, but to have that knowledge with a greater level of certainty would have been helpful. Are you currently being seen every 3 months by your dermatologist? Have they recommended anything further at this point?

                                                                                              Thanks,

                                                                                              Cecelia

                                                                                              cece
                                                                                              Participant

                                                                                                Hi, I was wondering if anyone would read or respond! I'm so disappointed. I am stage 1B, diagnosed in January of this year (0.8mm, no ulceration, mitotic index >1, negative SLNB). I really thought with this test being geared toward stage 1 and 2 patients that they'd be able to do it- in all of the articles and reports I've read about this gene test, not one mentioned the (apparently high) possibility that our tumors would be too small or too unconcentrated. My oncologist said if I had been in the 69% chance of metastasis, he would have used the results to justify scans (ct scans, etc) to the insurance company. My thought is- why not scan me once a year just to be safe regardless? But I guess that opens a whole new set of worries and concerns and risks. Did you have a negative SLNB? I realize I'm lucky to have caught it early and the odds are in my favor that we caught it before it spread, but to have that knowledge with a greater level of certainty would have been helpful. Are you currently being seen every 3 months by your dermatologist? Have they recommended anything further at this point?

                                                                                                Thanks,

                                                                                                Cecelia

                                                                                                JC
                                                                                                Participant

                                                                                                  I agree, I was also disappointed.  I am also Stage I and I was going to try to have this done but when my slide was reviewed it was determined that given their requirements for analysis more tumor tissue was needed (the focus of my tumor was too small).  But my Dr was unsure of what we would do w/ the results, would it change anything we're doing?

                                                                                                  JC
                                                                                                  Participant

                                                                                                    I agree, I was also disappointed.  I am also Stage I and I was going to try to have this done but when my slide was reviewed it was determined that given their requirements for analysis more tumor tissue was needed (the focus of my tumor was too small).  But my Dr was unsure of what we would do w/ the results, would it change anything we're doing?

                                                                                                    cece
                                                                                                    Participant

                                                                                                      So, my oncologist just called. Unfortunately, my tissue sample wasn't dense enough for Decision DX to run the gene test on. They said there weren't enough cancer cells in my sample. He implied the company has been having a lot of problems with this. Given that this test is specificially designed for stage 1 and 2 melanoma patients, you would think they would be able to work with smaller size tumors, since, just by definition, that's what stage 1 and 2 patients have. It's very disappointing, though at least he didn't call to say I'm in the 69% group. Although I still could be. Ugh!  I guess I'm back to the old wait and see program. 

                                                                                                      cece
                                                                                                      Participant

                                                                                                        So, my oncologist just called. Unfortunately, my tissue sample wasn't dense enough for Decision DX to run the gene test on. They said there weren't enough cancer cells in my sample. He implied the company has been having a lot of problems with this. Given that this test is specificially designed for stage 1 and 2 melanoma patients, you would think they would be able to work with smaller size tumors, since, just by definition, that's what stage 1 and 2 patients have. It's very disappointing, though at least he didn't call to say I'm in the 69% group. Although I still could be. Ugh!  I guess I'm back to the old wait and see program. 

                                                                                                        cece
                                                                                                        Participant

                                                                                                          Thanks for letting me know, and congrats! That's wonderful news. I'm sure you are relieved. Is your plan of action going forward to do skin check appointments with your dermatologist every 3 months? That's what I'm doing, and seeing my surgical oncologist twice a year. It's a lot of doctor visits but I'm happy to do it. I keep second guessing every mole I come across (I'm so worried they'll be another melanoma one…)

                                                                                                          I'm still waiting on my Decision DX results. Fingers crossed I have similar results. 

                                                                                                          Cecelia

                                                                                                          cece
                                                                                                          Participant

                                                                                                            Thanks for letting me know, and congrats! That's wonderful news. I'm sure you are relieved. Is your plan of action going forward to do skin check appointments with your dermatologist every 3 months? That's what I'm doing, and seeing my surgical oncologist twice a year. It's a lot of doctor visits but I'm happy to do it. I keep second guessing every mole I come across (I'm so worried they'll be another melanoma one…)

                                                                                                            I'm still waiting on my Decision DX results. Fingers crossed I have similar results. 

                                                                                                            Cecelia

                                                                                                            MindyD
                                                                                                            Participant

                                                                                                              Hi Cecilia,

                                                                                                              So sorry for the late reply!  I haven't logged in for awhile.  I heard back from my doc a few days after my last message… Said I was low risk!  Actually went further to say I was 95% likely to remain cancer free after 5 years. πŸ™‚  

                                                                                                              Hopefully you will get results soon. I can tell you that my doc was planning to use the results (if high risk) to justify the necessity of further scans to check for mets.  Insurance is more likely to approve scans with proof of higher risk in stage 2 patients who would otherwise have no further treatment.  I'll never understand why full body scans are not an automatic for someone who has confirmed cancer in their body!  But who am I? 

                                                                                                              Hope you are well and here's hoping for similar results for you!  Let me know!  πŸ™‚

                                                                                                               

                                                                                                               

                                                                                                              MindyD
                                                                                                              Participant

                                                                                                                Hi Cecilia,

                                                                                                                So sorry for the late reply!  I haven't logged in for awhile.  I heard back from my doc a few days after my last message… Said I was low risk!  Actually went further to say I was 95% likely to remain cancer free after 5 years. πŸ™‚  

                                                                                                                Hopefully you will get results soon. I can tell you that my doc was planning to use the results (if high risk) to justify the necessity of further scans to check for mets.  Insurance is more likely to approve scans with proof of higher risk in stage 2 patients who would otherwise have no further treatment.  I'll never understand why full body scans are not an automatic for someone who has confirmed cancer in their body!  But who am I? 

                                                                                                                Hope you are well and here's hoping for similar results for you!  Let me know!  πŸ™‚

                                                                                                                 

                                                                                                                 

                                                                                                                cece
                                                                                                                Participant

                                                                                                                  Hi Mindy,

                                                                                                                  Thanks so much for the reply! I'm with you- I've yet to figure out how to check for replies to messages I post on here. I was once again google-ing Decision Dx and your post came up again and I noticed you had responded.

                                                                                                                  I still have not received my results. It turns out that my doctor had trouble getting the slides sent off. Apparently DecisionDX requires 10 slides of the melanoma tumor and even then, there's no guarantee they'll be able to run the test. His nurse told me that they can only run the test if there is a high enough concentration of cancer cells in the 10 slides. Given that this gene test is designed for stage 1 and stage 2 patients, I'm hoping those of us with melanomas on the smaller size will still have enough cancerous cells for them to run it. 

                                                                                                                  Have you heard anything yet? Any idea what course of action the doctor recommends if we do come back in the unlucky 69% group? I am the first patient that my doctor has run this test on, and even though he attended a conference on the test with Bio Castle, he hasn't given me a lot of input as to all of the "what if's." 

                                                                                                                  I've also been surprised by the lack of information out there about this test. You'd think with melanoma being diagnosed at such a high rate these days that this test would be more mainstream. My dermatologist hadn't even heard of it. 

                                                                                                                  Keep me posted on what you learn (and how long it took!) And keep following up with your doctor- my nurse told me it had been sent off only to find out weeks later it hadn't. Doctors are great and all, but I'm learning more and more that you have to be your own advocate.

                                                                                                                  Thanks again,

                                                                                                                  Cecelia

                                                                                                                  MindyD
                                                                                                                  Participant

                                                                                                                    Hi Cecelia,

                                                                                                                    Sorry for the delayed response.  Not sure if the site offers any kind of notifications, but I have yet to find any settings for it.  I just happened to stumble on my own post when I googled info about the Decision Dx test!  lol

                                                                                                                    Unfortunately, I have heard nothing yet.  I had a follow-up appt with my onc surgeon 2 weeks ago and he said the results were not back yet and to call him back in a couple weeks.  I just called today and left a message for his nurse to call me.  Who knows how long it will take.  I'm approaching 2 months… Very frustrating! 

                                                                                                                    I did find a few articles in my research, which shows some stats.  They come right up when you google "Decision Dx Melanoma test" 

                                                                                                                    Sorry I can't be of more help!

                                                                                                                     

                                                                                                                     

                                                                                                                    MindyD
                                                                                                                    Participant

                                                                                                                      Hi Cecelia,

                                                                                                                      Sorry for the delayed response.  Not sure if the site offers any kind of notifications, but I have yet to find any settings for it.  I just happened to stumble on my own post when I googled info about the Decision Dx test!  lol

                                                                                                                      Unfortunately, I have heard nothing yet.  I had a follow-up appt with my onc surgeon 2 weeks ago and he said the results were not back yet and to call him back in a couple weeks.  I just called today and left a message for his nurse to call me.  Who knows how long it will take.  I'm approaching 2 months… Very frustrating! 

                                                                                                                      I did find a few articles in my research, which shows some stats.  They come right up when you google "Decision Dx Melanoma test" 

                                                                                                                      Sorry I can't be of more help!

                                                                                                                       

                                                                                                                       

                                                                                                                    cece
                                                                                                                    Participant

                                                                                                                      Hi Mindy,

                                                                                                                      I was wondering if you had received your results from the DecisionDX gene test yet? I was diagnosed in January 2015 with stage 1B melanoma (0.8mm, no ulceration, mitotix index > 1mm squared). My wide look margins were clear and my sentinel lymph node biospy was negative. They sent my tumor off for the DecisionDX test a few weeks ago, but I've yet to receive the results. I'm still unclear as to how accurate the gene test is- is it 100%, with no room for error? I'd be curious to know what your doctor recommended you do re: treatment after you got your results. 

                                                                                                                      Thanks!

                                                                                                                      Cecelia

                                                                                                                      mgoose288
                                                                                                                      Participant

                                                                                                                        Hope all is well!

                                                                                                                        I know that this is thread/post is a little but hopefully someone will reply… Has anyone had trouble getting their insurance to cover the DecisionDX-Melanoma test? My wife's doctor recently ordered this test and now I'm worried that I may have a proctracted battle with the insurance company to get them to pay for it.

                                                                                                                        mgoose288
                                                                                                                        Participant

                                                                                                                          Hope all is well!

                                                                                                                          I know that this is thread/post is a little but hopefully someone will reply… Has anyone had trouble getting their insurance to cover the DecisionDX-Melanoma test? My wife's doctor recently ordered this test and now I'm worried that I may have a proctracted battle with the insurance company to get them to pay for it.

                                                                                                                          mgoose288
                                                                                                                          Participant

                                                                                                                            Hope all is well!

                                                                                                                            I know that this is thread/post is a little but hopefully someone will reply… Has anyone had trouble getting their insurance to cover the DecisionDX-Melanoma test? My wife's doctor recently ordered this test and now I'm worried that I may have a proctracted battle with the insurance company to get them to pay for it.

                                                                                                                              Robyn W
                                                                                                                              Participant

                                                                                                                                Hello,

                                                                                                                                I actually just got my bill from Castle Biosciences after my gene expression test. The bill is for $7,918.00 and my insurance did not cover it. As you can imagine, I am freaking out a bit because my dermatologist said it wouldn't cost anything. I imagine my battle will start tomorrow finding out who gave me the wrong information. πŸ™

                                                                                                                                Robyn W
                                                                                                                                Participant

                                                                                                                                  Hello,

                                                                                                                                  I actually just got my bill from Castle Biosciences after my gene expression test. The bill is for $7,918.00 and my insurance did not cover it. As you can imagine, I am freaking out a bit because my dermatologist said it wouldn't cost anything. I imagine my battle will start tomorrow finding out who gave me the wrong information. πŸ™

                                                                                                                                  mgoose288
                                                                                                                                  Participant

                                                                                                                                    Yep, I'm in the exact same boat. I'm pretty upset at the dermatolgist for not saying anything about it. I'm trying to figure out how to negotiate with Castle Biosceinces and the Derm. I'm hoping that between the 2 I can work something out. But it's a long shot.Time to go buy some lotto ticets I guess….

                                                                                                                                    mgoose288
                                                                                                                                    Participant

                                                                                                                                      Yep, I'm in the exact same boat. I'm pretty upset at the dermatolgist for not saying anything about it. I'm trying to figure out how to negotiate with Castle Biosceinces and the Derm. I'm hoping that between the 2 I can work something out. But it's a long shot.Time to go buy some lotto ticets I guess….

                                                                                                                                      cece
                                                                                                                                      Participant

                                                                                                                                        Hello,

                                                                                                                                        Since they billed you, I'm assuming they were able to run the test? My cells were subitted but then I was told the tumor threshold was too low or something and didn't meet their "quality" standards so they couldn't run the test. Thankfully, they didn't bill me. My surgical oncologist submitted it for me and every time I asked him about insurance we pretty much said it was nothing to worry about, they'd let me know how much it cost, etc. I was led to believe it'd be covered.

                                                                                                                                        I hope your results were in the 3% category.

                                                                                                                                        Cece

                                                                                                                                        cece
                                                                                                                                        Participant

                                                                                                                                          Hello,

                                                                                                                                          Since they billed you, I'm assuming they were able to run the test? My cells were subitted but then I was told the tumor threshold was too low or something and didn't meet their "quality" standards so they couldn't run the test. Thankfully, they didn't bill me. My surgical oncologist submitted it for me and every time I asked him about insurance we pretty much said it was nothing to worry about, they'd let me know how much it cost, etc. I was led to believe it'd be covered.

                                                                                                                                          I hope your results were in the 3% category.

                                                                                                                                          Cece

                                                                                                                                          cece
                                                                                                                                          Participant

                                                                                                                                            Hello,

                                                                                                                                            Since they billed you, I'm assuming they were able to run the test? My cells were subitted but then I was told the tumor threshold was too low or something and didn't meet their "quality" standards so they couldn't run the test. Thankfully, they didn't bill me. My surgical oncologist submitted it for me and every time I asked him about insurance we pretty much said it was nothing to worry about, they'd let me know how much it cost, etc. I was led to believe it'd be covered.

                                                                                                                                            I hope your results were in the 3% category.

                                                                                                                                            Cece

                                                                                                                                            mgoose288
                                                                                                                                            Participant

                                                                                                                                              Yep, I'm in the exact same boat. I'm pretty upset at the dermatolgist for not saying anything about it. I'm trying to figure out how to negotiate with Castle Biosceinces and the Derm. I'm hoping that between the 2 I can work something out. But it's a long shot.Time to go buy some lotto ticets I guess….

                                                                                                                                              KCopeland86
                                                                                                                                              Participant

                                                                                                                                                Same boat. I had a very small mole on my arm removed and it came back Melanoma. It was caught very early, depth was less than 0.5. My doctor cut the famous "football" out of my arm and sent that sample off to Castle to be tested. All of my margins came back clear and I now have a denied claim on my insurance for $7,918! My doctor said it was probably going to be covered by insurance and most people have this test done for "pease of mind." I would think a test of this magnitude would have been a little better explained, or at least I could have been given a warning. This is all brand new and I have not yet received a bill from Castle… Is this normal?

                                                                                                                                                KCopeland86
                                                                                                                                                Participant

                                                                                                                                                  Same boat. I had a very small mole on my arm removed and it came back Melanoma. It was caught very early, depth was less than 0.5. My doctor cut the famous "football" out of my arm and sent that sample off to Castle to be tested. All of my margins came back clear and I now have a denied claim on my insurance for $7,918! My doctor said it was probably going to be covered by insurance and most people have this test done for "pease of mind." I would think a test of this magnitude would have been a little better explained, or at least I could have been given a warning. This is all brand new and I have not yet received a bill from Castle… Is this normal?

                                                                                                                                                  cece
                                                                                                                                                  Participant

                                                                                                                                                    Hi,

                                                                                                                                                    First, I'm surprised that your doctor would even send your tumor off to Castle for this- a melanoma of that size really doesn't warrant it from everything I've been told. Have you gotten the results from the genetic test yet? They couldn't run the test on my sample so I wasn't charged anything (my tumor was 0.8mm-> stage 1B, negative sentinel lymph node biopsy). But every time I asked my oncologist about the cost, he kind of brushed it off and couldn't give me an answer. Makes me wonder if the doctors get a commission or something for submitting patients for this test. You mentioned your margins being clear- that's different that what Castle's genetic test is for. 

                                                                                                                                                    Glad you caught yours so early. Be sure to keep up with your twice a year (at least) skin checks! 

                                                                                                                                                    KatieB
                                                                                                                                                    Participant

                                                                                                                                                      Hi Cece,

                                                                                                                                                      I just heard back from DecisionDx that my slides didn't have enough material for them to run the test also. Like you, I'm really disappointed as I was really hoping for a good result that would help my worry subside a little. I have young kids also. 

                                                                                                                                                      I wonder/hope if having not enough tumor available on the slides and/or not enough density is a good sign towards prognosis?  I wonder if anyone has ever studied that.  I would think it would be better to have less material than more, right?  Just looking for the silver lining as I was really hoping to get the test results.

                                                                                                                                                      But, at least the result didn't give me a higher likelihood to progress… All in all, there are many blessings.

                                                                                                                                                      Anyhow, I know this is an old post but I wanted to follow up since I'm in the same boat and wondered how you are doing a couple of years later.

                                                                                                                                                      Katie

                                                                                                                                                      eagle2531
                                                                                                                                                      Participant

                                                                                                                                                        Seems like most of the posts on DecisionDx are on the older side. Anyone have any recent info ? I had surgery this month and was considering a second opinion on the Sentinel Node Biopsies. Reading some of these posts has pretty much convinced me I should do so. As a coincidence my surgical Oncologist just sent me info on the Decision Dx. I was stage T2bNO, so the test seems pretty interesting if it is accurate. So anything recent out there ?

                                                                                                                                                        Thanks

                                                                                                                                                        Gene

                                                                                                                                                        Roxanne218
                                                                                                                                                        Participant

                                                                                                                                                          I had the DecisionDX test done and my result that I found out this past week is high risk – 2b. A shock for me, as I had been relieved after the WLE pathology report – I was a stage 2a, clear margins, no ulceration. Now, I have a whole new set of worries ahead of me because of the DX test and what it has said about my tumor. Dr. wants me to have the CT/PET scan with all its unhealthy radiation to see if there's spreading. This DX test claims its results are for the individual patient, but I am questioning that. It's saying because mine is a class 2b that there's a certain percentage for recurrence and spreading, which they put on EVERYONE'S report who has 2b. Because every melanoma patient has their own unique experience with this disease, he/she should really think long and hard if this DX test is right for them. Maybe some of us don't want so much information, especially if the DX test has room for error in its findings which I'm still wondering about too. Plus they only have low risk and high risk categories. Why not an intermediate risk, which my tumor may have been identified as? Any comments appreciated, and best wishes to everyone!

                                                                                                                                                          cece
                                                                                                                                                          Participant

                                                                                                                                                            Hi KatieB,

                                                                                                                                                            How are you? I'm sorry for the delayed response! I hate that you don't get notifications when someone posts on your message. I used to check this blog religiously but I've gotten better about obessing over my melanoma, so I guess that's a good sign πŸ™‚ I still regret that they weren't able to find enough material to run the test- I just feel like knowing would've put my mind at ease. Plus, I've always worried that they sent my wrong slide- that they sent my WLE slide and not my primary tumor slide. But, nothing I can do about that now… I'm happy to report that (knock on wood) I've not had any issues. I've had an MRI and 2 chest x-rays over the past 3 1/2 years (just to check for any abnormal signs) and so far, so good. Fingers crosssed, as always… How are you? Were you stage 1B as well?

                                                                                                                                                            Cecelia

                                                                                                                                                            cece
                                                                                                                                                            Participant

                                                                                                                                                              Hi,

                                                                                                                                                              First, I'm surprised that your doctor would even send your tumor off to Castle for this- a melanoma of that size really doesn't warrant it from everything I've been told. Have you gotten the results from the genetic test yet? They couldn't run the test on my sample so I wasn't charged anything (my tumor was 0.8mm-> stage 1B, negative sentinel lymph node biopsy). But every time I asked my oncologist about the cost, he kind of brushed it off and couldn't give me an answer. Makes me wonder if the doctors get a commission or something for submitting patients for this test. You mentioned your margins being clear- that's different that what Castle's genetic test is for. 

                                                                                                                                                              Glad you caught yours so early. Be sure to keep up with your twice a year (at least) skin checks! 

                                                                                                                                                              cece
                                                                                                                                                              Participant

                                                                                                                                                                Hi,

                                                                                                                                                                First, I'm surprised that your doctor would even send your tumor off to Castle for this- a melanoma of that size really doesn't warrant it from everything I've been told. Have you gotten the results from the genetic test yet? They couldn't run the test on my sample so I wasn't charged anything (my tumor was 0.8mm-> stage 1B, negative sentinel lymph node biopsy). But every time I asked my oncologist about the cost, he kind of brushed it off and couldn't give me an answer. Makes me wonder if the doctors get a commission or something for submitting patients for this test. You mentioned your margins being clear- that's different that what Castle's genetic test is for. 

                                                                                                                                                                Glad you caught yours so early. Be sure to keep up with your twice a year (at least) skin checks! 

                                                                                                                                                                LetItBe
                                                                                                                                                                Participant

                                                                                                                                                                  Good morning! 

                                                                                                                                                                  Hope you are doing well!  I too am in the same boat; and am curious how your situation played out (if you don’t mind me asking).  My insurance denied the claim as well (deemed it medically unnecessary & Castle is out of network for me (which insurance covers none for out of netowrk).   Did Castle help get the claim decision appealed, did you end up owing if not?  

                                                                                                                                                                  KCopeland86
                                                                                                                                                                  Participant

                                                                                                                                                                    Same boat. I had a very small mole on my arm removed and it came back Melanoma. It was caught very early, depth was less than 0.5. My doctor cut the famous "football" out of my arm and sent that sample off to Castle to be tested. All of my margins came back clear and I now have a denied claim on my insurance for $7,918! My doctor said it was probably going to be covered by insurance and most people have this test done for "pease of mind." I would think a test of this magnitude would have been a little better explained, or at least I could have been given a warning. This is all brand new and I have not yet received a bill from Castle… Is this normal?

                                                                                                                                                                    cwarden
                                                                                                                                                                    Participant

                                                                                                                                                                      Did Castle end up writing it off, or did you settle the bill?

                                                                                                                                                                      I contacted Castle, and they said that they write it off if insurance doesn't cover it, and that they don't bill the patient, so I'm wondering if they have changed their policy since you had the test.

                                                                                                                                                                      cece
                                                                                                                                                                      Participant

                                                                                                                                                                        I never rec'd a bill for it. But mine didn't have any material to run it on, supposedly. They still had to look at it to determine that, but they never billed me for it.

                                                                                                                                                                        Robyn W
                                                                                                                                                                        Participant

                                                                                                                                                                          Hello,

                                                                                                                                                                          I actually just got my bill from Castle Biosciences after my gene expression test. The bill is for $7,918.00 and my insurance did not cover it. As you can imagine, I am freaking out a bit because my dermatologist said it wouldn't cost anything. I imagine my battle will start tomorrow finding out who gave me the wrong information. πŸ™

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