Anyone have experience with the new DecisionDx test?

"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.

"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.

"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.

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.

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.

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.

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 🙂 hope this helps u! 

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 🙂 hope this helps u! 

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 🙂 hope this helps u! 

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

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

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

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

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. 

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?

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?

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

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

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

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?

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. 

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. 

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

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

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. 🙁

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….

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….

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….

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

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

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

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?

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! 

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! 

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! 

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

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

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!

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 🙂 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

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?  

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?

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?

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.

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.

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. 🙁

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. 🙁