› Forums › General Melanoma Community › Stage 2b, DecisionDX class 2: what to do next?
- This topic has 33 replies, 9 voices, and was last updated 8 years, 2 months ago by
Happy_girl.
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- February 21, 2016 at 1:54 am
Hi all,
I was diagnosed with a nodular melanoma on my foot in December (2015). It was excised with a negative SLB, was 3.4 mm deep, and staged as 2b.
I had the DecisionDX test as well, and it came back as class 2 (68% likely to recur w/in 5 years).
I'm wondering if anyone else is in this situation. It is a very unknown approach given how new this test is and raises tough questions. Whether to follow a vigilant hope and see approach (with some lifestyle changes) or whether to pursue adjuvent treatment (either interferon or clinical trials open to stage2b). I'd be really grateful to hear from anyone in the same boat.
Thanks for reading,
Chris
- Replies
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- February 21, 2016 at 2:57 am
My understanding of tests like this are not considered to be reliable by Melanoma Oncologist and the cost (big $) for them, and they might not be covered by insurance. I also find it very interesting how this topic is coming up again by new members who have not completed profiles????? I think that I am up to date when it comes to Melanoma biomaker tests and anything that could be used to be predictive and I have not heard any of the leading Oncologist talk about this Decision DX test!!!
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- February 21, 2016 at 3:34 am
Am I being accused of something here? I'm new to this forum because I'm newly diagnosed, and I guess I don't know all the rules here. I'm sorry if I mistepped, but I don't think the age of my profile should be a relevant part of the conversation. My oncologist recommended the test, and I go back to talk about the results and my next steps next week. I'm looking for someone who
might have some advice or thoughts, not to be trolled with this kind of response. I thought this would be a supportive forum, one where people facing this dreadful diagnosis could come to discuss issues in safety without the crap that comes in other internet forums. Guess I might be wrong.
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- February 21, 2016 at 3:57 am
Hi Chris!
welcome to the forum!! I'm new too and haven't created a profile (I guess its caused I haven't figured out how yet:)) I don't think there are any rules about posting questions without a profile so you're fine. I'm sure you have more to worry about than completing a profile on a chat board. 😉
Anyway, you probably saw my post earlier today about DecisionDX. I'm a stage 3b and my oncologist requested it to be done. I do agree with many that it is a very new test that doesn't seem very substantiated yet. I think Castle only had about 300 patients they tested for their study which to me isn't many. I am still waiting for my results. My oncologist suggested the test to get a better feel for my prognosis and give me better direction on the treatment path to take. I am currently on the watch and wait approach which I'm comfortable with at the moment but if my results come back class 2 I may change my mind. I don't think there are any right or wrong answers and I don't think the DecisionDX test is the concrete answer either. Really only God knows our fate right!?
I know I'm probably not very helpful in my post but wanted to reach out to you anyway as one newbie to another!
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- February 21, 2016 at 3:57 am
Hi Chris!
welcome to the forum!! I'm new too and haven't created a profile (I guess its caused I haven't figured out how yet:)) I don't think there are any rules about posting questions without a profile so you're fine. I'm sure you have more to worry about than completing a profile on a chat board. 😉
Anyway, you probably saw my post earlier today about DecisionDX. I'm a stage 3b and my oncologist requested it to be done. I do agree with many that it is a very new test that doesn't seem very substantiated yet. I think Castle only had about 300 patients they tested for their study which to me isn't many. I am still waiting for my results. My oncologist suggested the test to get a better feel for my prognosis and give me better direction on the treatment path to take. I am currently on the watch and wait approach which I'm comfortable with at the moment but if my results come back class 2 I may change my mind. I don't think there are any right or wrong answers and I don't think the DecisionDX test is the concrete answer either. Really only God knows our fate right!?
I know I'm probably not very helpful in my post but wanted to reach out to you anyway as one newbie to another!
-
- February 21, 2016 at 3:57 am
Hi Chris!
welcome to the forum!! I'm new too and haven't created a profile (I guess its caused I haven't figured out how yet:)) I don't think there are any rules about posting questions without a profile so you're fine. I'm sure you have more to worry about than completing a profile on a chat board. 😉
Anyway, you probably saw my post earlier today about DecisionDX. I'm a stage 3b and my oncologist requested it to be done. I do agree with many that it is a very new test that doesn't seem very substantiated yet. I think Castle only had about 300 patients they tested for their study which to me isn't many. I am still waiting for my results. My oncologist suggested the test to get a better feel for my prognosis and give me better direction on the treatment path to take. I am currently on the watch and wait approach which I'm comfortable with at the moment but if my results come back class 2 I may change my mind. I don't think there are any right or wrong answers and I don't think the DecisionDX test is the concrete answer either. Really only God knows our fate right!?
I know I'm probably not very helpful in my post but wanted to reach out to you anyway as one newbie to another!
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- February 21, 2016 at 4:59 am
Hi, I don't know anything about this test, today is the first time I have heard of it, but I just wanted to say that this forum is full of really supportive and really good people. I am sorry your first experience hasn't been great, apparently this is a controversial topic. This is definitely not a forum that gets trolled or has a lot of other issues most internet forums have. Hopefully you don't get discouraged from using it, as it can be really helpful for us to have a good support team and a place to go to talk to others who have a good idea how we are feeling. I hope all the best for you.
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- February 21, 2016 at 4:59 am
Hi, I don't know anything about this test, today is the first time I have heard of it, but I just wanted to say that this forum is full of really supportive and really good people. I am sorry your first experience hasn't been great, apparently this is a controversial topic. This is definitely not a forum that gets trolled or has a lot of other issues most internet forums have. Hopefully you don't get discouraged from using it, as it can be really helpful for us to have a good support team and a place to go to talk to others who have a good idea how we are feeling. I hope all the best for you.
-
- February 21, 2016 at 4:59 am
Hi, I don't know anything about this test, today is the first time I have heard of it, but I just wanted to say that this forum is full of really supportive and really good people. I am sorry your first experience hasn't been great, apparently this is a controversial topic. This is definitely not a forum that gets trolled or has a lot of other issues most internet forums have. Hopefully you don't get discouraged from using it, as it can be really helpful for us to have a good support team and a place to go to talk to others who have a good idea how we are feeling. I hope all the best for you.
-
- February 21, 2016 at 3:34 am
Am I being accused of something here? I'm new to this forum because I'm newly diagnosed, and I guess I don't know all the rules here. I'm sorry if I mistepped, but I don't think the age of my profile should be a relevant part of the conversation. My oncologist recommended the test, and I go back to talk about the results and my next steps next week. I'm looking for someone who
might have some advice or thoughts, not to be trolled with this kind of response. I thought this would be a supportive forum, one where people facing this dreadful diagnosis could come to discuss issues in safety without the crap that comes in other internet forums. Guess I might be wrong.
-
- February 21, 2016 at 3:34 am
Am I being accused of something here? I'm new to this forum because I'm newly diagnosed, and I guess I don't know all the rules here. I'm sorry if I mistepped, but I don't think the age of my profile should be a relevant part of the conversation. My oncologist recommended the test, and I go back to talk about the results and my next steps next week. I'm looking for someone who
might have some advice or thoughts, not to be trolled with this kind of response. I thought this would be a supportive forum, one where people facing this dreadful diagnosis could come to discuss issues in safety without the crap that comes in other internet forums. Guess I might be wrong.
-
- February 21, 2016 at 3:59 am
Actually, I think the data is pretty good on this test. My derm onc thinks this has much promise but the price is high and my institution is trying to determine how and when to recommend. The other problem with this test is what to do in positive cases. If you are stage 1, the only adjuvant therapy is increased monitoring. I think that is part of the reason it isn't receiving more attention – sites don't know the best way to utilize the results.
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- February 21, 2016 at 3:59 am
Actually, I think the data is pretty good on this test. My derm onc thinks this has much promise but the price is high and my institution is trying to determine how and when to recommend. The other problem with this test is what to do in positive cases. If you are stage 1, the only adjuvant therapy is increased monitoring. I think that is part of the reason it isn't receiving more attention – sites don't know the best way to utilize the results.
-
- February 21, 2016 at 3:59 am
Actually, I think the data is pretty good on this test. My derm onc thinks this has much promise but the price is high and my institution is trying to determine how and when to recommend. The other problem with this test is what to do in positive cases. If you are stage 1, the only adjuvant therapy is increased monitoring. I think that is part of the reason it isn't receiving more attention – sites don't know the best way to utilize the results.
-
- February 21, 2016 at 2:57 am
My understanding of tests like this are not considered to be reliable by Melanoma Oncologist and the cost (big $) for them, and they might not be covered by insurance. I also find it very interesting how this topic is coming up again by new members who have not completed profiles????? I think that I am up to date when it comes to Melanoma biomaker tests and anything that could be used to be predictive and I have not heard any of the leading Oncologist talk about this Decision DX test!!!
-
- February 21, 2016 at 2:57 am
My understanding of tests like this are not considered to be reliable by Melanoma Oncologist and the cost (big $) for them, and they might not be covered by insurance. I also find it very interesting how this topic is coming up again by new members who have not completed profiles????? I think that I am up to date when it comes to Melanoma biomaker tests and anything that could be used to be predictive and I have not heard any of the leading Oncologist talk about this Decision DX test!!!
-
- February 21, 2016 at 7:16 am
A test like this does not change the relaity of the situation, it just gives you more information. It's merely another fact to be put on the scales when taking a decision.
68% change of reoccurence within five years means 32% change of no reoccurence within five years.
All the treatments have damaging side effects, it a matter of how bad and how likely. There is a reason that many treatments are not available to stage 2 patients – the likelihood of a treatment seriously damaging the patient may be greater than the likelihood of the melanoma coming back!
Also there are many new treatments on the horizon. What is on offer could be very differet in a few years' time.
Your comment about lifestyle is interesting. Almost all the treatment developments are about getting a patient's imuune system to attack the cancer cells. This is because we now understand that this is what our bodies normally do and it is only when the cancer cells mutate to may themselves 'invisible ' to our immune systems that we are in trouble.
Keeping that immune system iin tip-top condition seems like a really good idea.
-
- February 21, 2016 at 7:16 am
A test like this does not change the relaity of the situation, it just gives you more information. It's merely another fact to be put on the scales when taking a decision.
68% change of reoccurence within five years means 32% change of no reoccurence within five years.
All the treatments have damaging side effects, it a matter of how bad and how likely. There is a reason that many treatments are not available to stage 2 patients – the likelihood of a treatment seriously damaging the patient may be greater than the likelihood of the melanoma coming back!
Also there are many new treatments on the horizon. What is on offer could be very differet in a few years' time.
Your comment about lifestyle is interesting. Almost all the treatment developments are about getting a patient's imuune system to attack the cancer cells. This is because we now understand that this is what our bodies normally do and it is only when the cancer cells mutate to may themselves 'invisible ' to our immune systems that we are in trouble.
Keeping that immune system iin tip-top condition seems like a really good idea.
-
- February 21, 2016 at 7:16 am
A test like this does not change the relaity of the situation, it just gives you more information. It's merely another fact to be put on the scales when taking a decision.
68% change of reoccurence within five years means 32% change of no reoccurence within five years.
All the treatments have damaging side effects, it a matter of how bad and how likely. There is a reason that many treatments are not available to stage 2 patients – the likelihood of a treatment seriously damaging the patient may be greater than the likelihood of the melanoma coming back!
Also there are many new treatments on the horizon. What is on offer could be very differet in a few years' time.
Your comment about lifestyle is interesting. Almost all the treatment developments are about getting a patient's imuune system to attack the cancer cells. This is because we now understand that this is what our bodies normally do and it is only when the cancer cells mutate to may themselves 'invisible ' to our immune systems that we are in trouble.
Keeping that immune system iin tip-top condition seems like a really good idea.
-
- February 21, 2016 at 7:17 am
A test like this does not change the relaity of the situation, it just gives you more information. It's merely another fact to be put on the scales when taking a decision.
68% change of reoccurence within five years means 32% change of no reoccurence within five years.
All the treatments have damaging side effects, it a matter of how bad and how likely. There is a reason that many treatments are not available to stage 2 patients – the likelihood of a treatment seriously damaging the patient may be greater than the likelihood of the melanoma coming back!
Also there are many new treatments on the horizon. What is on offer could be very differet in a few years' time.
Your comment about lifestyle is interesting. Almost all the treatment developments are about getting a patient's imuune system to attack the cancer cells. This is because we now understand that this is what our bodies normally do and it is only when the cancer cells mutate to may themselves 'invisible ' to our immune systems that we are in trouble.
Keeping that immune system iin tip-top condition seems like a really good idea.
-
- February 21, 2016 at 7:17 am
A test like this does not change the relaity of the situation, it just gives you more information. It's merely another fact to be put on the scales when taking a decision.
68% change of reoccurence within five years means 32% change of no reoccurence within five years.
All the treatments have damaging side effects, it a matter of how bad and how likely. There is a reason that many treatments are not available to stage 2 patients – the likelihood of a treatment seriously damaging the patient may be greater than the likelihood of the melanoma coming back!
Also there are many new treatments on the horizon. What is on offer could be very differet in a few years' time.
Your comment about lifestyle is interesting. Almost all the treatment developments are about getting a patient's imuune system to attack the cancer cells. This is because we now understand that this is what our bodies normally do and it is only when the cancer cells mutate to may themselves 'invisible ' to our immune systems that we are in trouble.
Keeping that immune system iin tip-top condition seems like a really good idea.
-
- February 21, 2016 at 7:17 am
A test like this does not change the relaity of the situation, it just gives you more information. It's merely another fact to be put on the scales when taking a decision.
68% change of reoccurence within five years means 32% change of no reoccurence within five years.
All the treatments have damaging side effects, it a matter of how bad and how likely. There is a reason that many treatments are not available to stage 2 patients – the likelihood of a treatment seriously damaging the patient may be greater than the likelihood of the melanoma coming back!
Also there are many new treatments on the horizon. What is on offer could be very differet in a few years' time.
Your comment about lifestyle is interesting. Almost all the treatment developments are about getting a patient's imuune system to attack the cancer cells. This is because we now understand that this is what our bodies normally do and it is only when the cancer cells mutate to may themselves 'invisible ' to our immune systems that we are in trouble.
Keeping that immune system iin tip-top condition seems like a really good idea.
-
- February 21, 2016 at 8:40 am
Hi Cimjones,
i was stage 2b in 2011 but did not have a lymph node biopsy after it was taken out. They said watch and wait, I was not happy due to how long I was left with no one taking my mole serious at the time. I was left a year before having it taken out to find it was melanoma plus my GP squeezed it thinking at one point it was a spot. I asked for scan but no watch wait if it comes back it would be through lymph nodes. Well mine did not I had reacurrance but it was under my skin no one could see them I did mention on checks my scar and how I felt on many times on visit for checks. 3 years later they decided to check me with a scan well welcome to stage 4 liver lungs lymph nodes and tumour next to my heart. Aparantly it went through my blood stream they said .
So I would not watch wait I would look in to treatment options to help it might not come back for a long time.
Everyone has had different situations in which way to go when having to face this horrible disease. I trusted my doctors thinking they know best my instinct at the time was to pay for a scan each year myself but I was reassured they would pick it up if returns. So I wish I did what I was thinking at the time.
there is only you can decide way forward with advice from your consultant but go with what you feel is best I wish I did.
Hope this post helps do not want to scare you but this is what happened too me and if I could take back time I would do what I thought at the time
wishing you all the best
scooby123❤️
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- February 21, 2016 at 8:40 am
Hi Cimjones,
i was stage 2b in 2011 but did not have a lymph node biopsy after it was taken out. They said watch and wait, I was not happy due to how long I was left with no one taking my mole serious at the time. I was left a year before having it taken out to find it was melanoma plus my GP squeezed it thinking at one point it was a spot. I asked for scan but no watch wait if it comes back it would be through lymph nodes. Well mine did not I had reacurrance but it was under my skin no one could see them I did mention on checks my scar and how I felt on many times on visit for checks. 3 years later they decided to check me with a scan well welcome to stage 4 liver lungs lymph nodes and tumour next to my heart. Aparantly it went through my blood stream they said .
So I would not watch wait I would look in to treatment options to help it might not come back for a long time.
Everyone has had different situations in which way to go when having to face this horrible disease. I trusted my doctors thinking they know best my instinct at the time was to pay for a scan each year myself but I was reassured they would pick it up if returns. So I wish I did what I was thinking at the time.
there is only you can decide way forward with advice from your consultant but go with what you feel is best I wish I did.
Hope this post helps do not want to scare you but this is what happened too me and if I could take back time I would do what I thought at the time
wishing you all the best
scooby123❤️
-
- February 21, 2016 at 3:51 pm
Thanks everyone for responding. I knew what I was getting myself into with this test, especially given that it is so new that there are no follow up protocols. I was obviously hoping for that class 1 designation, but given this one, it takes a little time to figure out where to go with it.
I'm gathering that the test itself is controversial because of the smaller sample size and the newness of it. And I suppose the what to do next question faces everyone on this board whether they've had this test or not.
I'll talk to my oncologist this week and figure out an approach, and I can report back on this thread if helpful. I did want to just thank everyone for responding. I have a lot of friends and family supporting me, but they aren't going through all this, so it's nice to think about a community of shared experiences and support. I'm not mad about the first response, and maybe there is a track record of drug company people fake posting about things to shill products. That would be a shame if so. But I assure you that's not me, and I'm just trying to navigate this complicated and new world like everyone else here.
Onward, and may everyone reading have the best day possible…
-
- February 21, 2016 at 3:51 pm
Thanks everyone for responding. I knew what I was getting myself into with this test, especially given that it is so new that there are no follow up protocols. I was obviously hoping for that class 1 designation, but given this one, it takes a little time to figure out where to go with it.
I'm gathering that the test itself is controversial because of the smaller sample size and the newness of it. And I suppose the what to do next question faces everyone on this board whether they've had this test or not.
I'll talk to my oncologist this week and figure out an approach, and I can report back on this thread if helpful. I did want to just thank everyone for responding. I have a lot of friends and family supporting me, but they aren't going through all this, so it's nice to think about a community of shared experiences and support. I'm not mad about the first response, and maybe there is a track record of drug company people fake posting about things to shill products. That would be a shame if so. But I assure you that's not me, and I'm just trying to navigate this complicated and new world like everyone else here.
Onward, and may everyone reading have the best day possible…
-
- February 21, 2016 at 3:51 pm
Thanks everyone for responding. I knew what I was getting myself into with this test, especially given that it is so new that there are no follow up protocols. I was obviously hoping for that class 1 designation, but given this one, it takes a little time to figure out where to go with it.
I'm gathering that the test itself is controversial because of the smaller sample size and the newness of it. And I suppose the what to do next question faces everyone on this board whether they've had this test or not.
I'll talk to my oncologist this week and figure out an approach, and I can report back on this thread if helpful. I did want to just thank everyone for responding. I have a lot of friends and family supporting me, but they aren't going through all this, so it's nice to think about a community of shared experiences and support. I'm not mad about the first response, and maybe there is a track record of drug company people fake posting about things to shill products. That would be a shame if so. But I assure you that's not me, and I'm just trying to navigate this complicated and new world like everyone else here.
Onward, and may everyone reading have the best day possible…
-
- February 21, 2016 at 8:40 am
Hi Cimjones,
i was stage 2b in 2011 but did not have a lymph node biopsy after it was taken out. They said watch and wait, I was not happy due to how long I was left with no one taking my mole serious at the time. I was left a year before having it taken out to find it was melanoma plus my GP squeezed it thinking at one point it was a spot. I asked for scan but no watch wait if it comes back it would be through lymph nodes. Well mine did not I had reacurrance but it was under my skin no one could see them I did mention on checks my scar and how I felt on many times on visit for checks. 3 years later they decided to check me with a scan well welcome to stage 4 liver lungs lymph nodes and tumour next to my heart. Aparantly it went through my blood stream they said .
So I would not watch wait I would look in to treatment options to help it might not come back for a long time.
Everyone has had different situations in which way to go when having to face this horrible disease. I trusted my doctors thinking they know best my instinct at the time was to pay for a scan each year myself but I was reassured they would pick it up if returns. So I wish I did what I was thinking at the time.
there is only you can decide way forward with advice from your consultant but go with what you feel is best I wish I did.
Hope this post helps do not want to scare you but this is what happened too me and if I could take back time I would do what I thought at the time
wishing you all the best
scooby123❤️
-
- February 21, 2016 at 4:59 pm
Dear Chris…and all the others on this thread….
I wrote you a beautiful post (if I say so myself!!!) but length and links seems to set off the spam blocker. So if you would like to read it…I posted it here:http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/damn-spam-blockerfor-chris-et-aland-all.html
More proof, Chris, that goofs have messed with the site such that all of us have been made to suffer. Oh, well….we can work around it, can't we?!
I wish all of you my very best!!!! Celeste
-
- February 21, 2016 at 4:59 pm
Dear Chris…and all the others on this thread….
I wrote you a beautiful post (if I say so myself!!!) but length and links seems to set off the spam blocker. So if you would like to read it…I posted it here:http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/damn-spam-blockerfor-chris-et-aland-all.html
More proof, Chris, that goofs have messed with the site such that all of us have been made to suffer. Oh, well….we can work around it, can't we?!
I wish all of you my very best!!!! Celeste
-
- February 21, 2016 at 11:45 pm
Hi! I just wanted to share that my surgeon sent off my tissue for this and at the time was diagnosed 1b. It came back that I was class 2- and I panicked! The good that came out of this is that really I was 3a- they missed the micro cells in my lymph node. so I was actually- officially a 3a at original diagnosis. From there I went to memorial Sloan Kettering- and my surgical onc there gave the test no credit. So- I agree that most oncs do not endorse at this point. Hopefully this all makes sense! Be encouraged!
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- February 21, 2016 at 11:45 pm
Hi! I just wanted to share that my surgeon sent off my tissue for this and at the time was diagnosed 1b. It came back that I was class 2- and I panicked! The good that came out of this is that really I was 3a- they missed the micro cells in my lymph node. so I was actually- officially a 3a at original diagnosis. From there I went to memorial Sloan Kettering- and my surgical onc there gave the test no credit. So- I agree that most oncs do not endorse at this point. Hopefully this all makes sense! Be encouraged!
-
- February 21, 2016 at 11:45 pm
Hi! I just wanted to share that my surgeon sent off my tissue for this and at the time was diagnosed 1b. It came back that I was class 2- and I panicked! The good that came out of this is that really I was 3a- they missed the micro cells in my lymph node. so I was actually- officially a 3a at original diagnosis. From there I went to memorial Sloan Kettering- and my surgical onc there gave the test no credit. So- I agree that most oncs do not endorse at this point. Hopefully this all makes sense! Be encouraged!
-
- February 21, 2016 at 4:59 pm
Dear Chris…and all the others on this thread….
I wrote you a beautiful post (if I say so myself!!!) but length and links seems to set off the spam blocker. So if you would like to read it…I posted it here:http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/damn-spam-blockerfor-chris-et-aland-all.html
More proof, Chris, that goofs have messed with the site such that all of us have been made to suffer. Oh, well….we can work around it, can't we?!
I wish all of you my very best!!!! Celeste
-
Tagged: cutaneous melanoma
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