› Forums › General Melanoma Community › Stage 3 advice
- This topic has 54 replies, 8 voices, and was last updated 9 years, 3 months ago by
democat.
- Post
-
- January 2, 2015 at 7:34 pm
I was diagnosed in January 2013 with stage 3a/3b melanoma and am coming up on my 2-year CT scan. I've been insisting on scans every 6 months until now. If this scan is clean, my oncologist wants me to move to one scan per year. I'm nervous about that, because so many stage 3a and 3b patients seem to have recurrences in year 3.
How often are other stage 3a or 3b patients being scanned? What is the current thinking among the melanoma specialists. (Unfortunately, I'm at Kaiser Southern California, and don't have access to a melanoma specialist without paying out of pocket.)
Any input would be appreciated.
Roxanne
- Replies
-
-
- January 2, 2015 at 7:44 pm
Hi!
I was diagnosed in late 2011 Due to a hip replacement, I have received CT scans rather than MRI scans every six months since the diagnosis. I'm due for my next follow up in June. My Oncologist mentioned that providing I'm still NED, my follow-ups will be once yearly.
-
- January 2, 2015 at 7:44 pm
Hi!
I was diagnosed in late 2011 Due to a hip replacement, I have received CT scans rather than MRI scans every six months since the diagnosis. I'm due for my next follow up in June. My Oncologist mentioned that providing I'm still NED, my follow-ups will be once yearly.
-
- January 2, 2015 at 8:02 pm
There is no standards for scans. Some institutions don't even do them unless there are symptoms. Scans haven't been shown to increase survival and have their own high radiation. I'm not pro/con on scans – just stating that there isn't a standard and use and frequency is controversial and typically influenced by institution, doc AND insurance.
-
- January 2, 2015 at 8:02 pm
There is no standards for scans. Some institutions don't even do them unless there are symptoms. Scans haven't been shown to increase survival and have their own high radiation. I'm not pro/con on scans – just stating that there isn't a standard and use and frequency is controversial and typically influenced by institution, doc AND insurance.
-
- January 2, 2015 at 8:29 pm
I read one study that CT scans are not particularly useful after the 3rd year for stage 3 melanoma patients. But, up until that point, they do catch some cases earlier than one would notice symptoms. I agree that there is no set standard – I've asked at symposiums and gotten answers all over the board.
Roxanne
-
- January 2, 2015 at 8:29 pm
I read one study that CT scans are not particularly useful after the 3rd year for stage 3 melanoma patients. But, up until that point, they do catch some cases earlier than one would notice symptoms. I agree that there is no set standard – I've asked at symposiums and gotten answers all over the board.
Roxanne
-
- January 2, 2015 at 8:29 pm
I read one study that CT scans are not particularly useful after the 3rd year for stage 3 melanoma patients. But, up until that point, they do catch some cases earlier than one would notice symptoms. I agree that there is no set standard – I've asked at symposiums and gotten answers all over the board.
Roxanne
-
- January 2, 2015 at 9:56 pm
Excellent point, Janner (as always). If these scans are designed to show what is essentially Stage IV disease, then there really isn't any "catching it early" is there? It has already proven to be systemic at that point and the systemic treatments will either work or they won't. Of course, surgery may be a more viable option when it is smaller (though if BRAF+, those could be shrunk for surgery). Also, there is the question as to whether metastases metastasize or not. For all the progress made, there is still so much that is unknown. I personally am hoping for some sort of testing that could definitely tell us whether a particular treatement would work prior to starting it. It would save money, and precious time and good health to just bypass the side-effects of treatments that wouldn't benefit us anyways.
-
- January 2, 2015 at 9:56 pm
Excellent point, Janner (as always). If these scans are designed to show what is essentially Stage IV disease, then there really isn't any "catching it early" is there? It has already proven to be systemic at that point and the systemic treatments will either work or they won't. Of course, surgery may be a more viable option when it is smaller (though if BRAF+, those could be shrunk for surgery). Also, there is the question as to whether metastases metastasize or not. For all the progress made, there is still so much that is unknown. I personally am hoping for some sort of testing that could definitely tell us whether a particular treatement would work prior to starting it. It would save money, and precious time and good health to just bypass the side-effects of treatments that wouldn't benefit us anyways.
-
- January 2, 2015 at 9:56 pm
Excellent point, Janner (as always). If these scans are designed to show what is essentially Stage IV disease, then there really isn't any "catching it early" is there? It has already proven to be systemic at that point and the systemic treatments will either work or they won't. Of course, surgery may be a more viable option when it is smaller (though if BRAF+, those could be shrunk for surgery). Also, there is the question as to whether metastases metastasize or not. For all the progress made, there is still so much that is unknown. I personally am hoping for some sort of testing that could definitely tell us whether a particular treatement would work prior to starting it. It would save money, and precious time and good health to just bypass the side-effects of treatments that wouldn't benefit us anyways.
-
- January 3, 2015 at 6:42 pm
Janner and DZnDef
Thanks for the input. I always freak out before my scans. If I ever move to stage 4, I'll definitely pay out of pocket to see a specialist to help me make treatment decisions. For now, I'm stuck with a general oncologist who doesn't see much melanoma.
Roxanne
-
- January 3, 2015 at 6:42 pm
Janner and DZnDef
Thanks for the input. I always freak out before my scans. If I ever move to stage 4, I'll definitely pay out of pocket to see a specialist to help me make treatment decisions. For now, I'm stuck with a general oncologist who doesn't see much melanoma.
Roxanne
-
- January 3, 2015 at 6:42 pm
Janner and DZnDef
Thanks for the input. I always freak out before my scans. If I ever move to stage 4, I'll definitely pay out of pocket to see a specialist to help me make treatment decisions. For now, I'm stuck with a general oncologist who doesn't see much melanoma.
Roxanne
-
- January 2, 2015 at 8:02 pm
There is no standards for scans. Some institutions don't even do them unless there are symptoms. Scans haven't been shown to increase survival and have their own high radiation. I'm not pro/con on scans – just stating that there isn't a standard and use and frequency is controversial and typically influenced by institution, doc AND insurance.
-
- January 2, 2015 at 7:44 pm
Hi!
I was diagnosed in late 2011 Due to a hip replacement, I have received CT scans rather than MRI scans every six months since the diagnosis. I'm due for my next follow up in June. My Oncologist mentioned that providing I'm still NED, my follow-ups will be once yearly.
-
- January 2, 2015 at 9:58 pm
Hi Roxanne, you might find a video on Onclive that was made in Sept. 2014 helpful. You have to join by giving email address. Click on the left column of titles on Melanoma, a group of video will pop up, choose the one titled " Stategies for the detection of Recurrent Melanoma." There is a panel of oncologist and surgeons talking about various topics in Melanoma. There are, I think 14 different videos in the series. I hope this is helpful to you. Ed
-
- January 2, 2015 at 9:58 pm
Hi Roxanne, you might find a video on Onclive that was made in Sept. 2014 helpful. You have to join by giving email address. Click on the left column of titles on Melanoma, a group of video will pop up, choose the one titled " Stategies for the detection of Recurrent Melanoma." There is a panel of oncologist and surgeons talking about various topics in Melanoma. There are, I think 14 different videos in the series. I hope this is helpful to you. Ed
-
- January 2, 2015 at 9:58 pm
Hi Roxanne, you might find a video on Onclive that was made in Sept. 2014 helpful. You have to join by giving email address. Click on the left column of titles on Melanoma, a group of video will pop up, choose the one titled " Stategies for the detection of Recurrent Melanoma." There is a panel of oncologist and surgeons talking about various topics in Melanoma. There are, I think 14 different videos in the series. I hope this is helpful to you. Ed
-
- January 2, 2015 at 10:45 pm
I was exactly in this boat. I had a scan 14 months ago and was NED at that time, but was considered a 3b/c because of a local recurrence. My oncologist (at the time) recommended waiting a year for the next scan, and I agreed. 4 months ago I had another recurrence and so the scan that would have been due a couple of months later was moved up, and it revealed I had progressed to stage IV. Would receiving a scan earlier have changed my ultimate outcome? Good question.
However, in retrospect, I do wish I had the scans every six months and my reasoning is this:
The conventional prognosis for stage IV is one year or less to live. Right now there are two FDA approved treatments available, Yervoy and one of the anti-pd1 drugs. It takes 9 weeks to get all 4 Yervoy infusions, starting from the first one, and at least one more month for a scan since Yervoy is slow working. So that is at least 3 months lost out of the year, likely more since it takes some time to get things set up.
You have to fail Yervoy before you can receive an anti PD-1 treatment. While that treatment may act quicker for those lucky enough to respond to it, it means at least another couple of months maybe three before you know if it’s working.
True, if you are BRAF positive, you can buy yourself a few months, but many patients are not.
The problem is that you need to be fairly healthy to undergo TIL, which seems to be the last major option if you fail Yervoy and anti-PD1 (there are always clinical trials of course, but they are more of a crapshoot). However you need to be in fairly good health to undergo TIL, since it can be a rough go.
So if many patients are going to burn 6 months hoping for a good outcome, leaving, on average less than 6 months to live remaining, I would think you want as much time as possible to leave for TIL or a clinical trial.
Things are changing fast, but once a patient is diagnosed with Stage IV you need to move fast and not waste any time out of that year. So saving up to 6 months by having scans every six months certainly seems worthwhile to me.
I realize all these numbers are generalizations and every person's situation is unique. But still, I am on the side of 6 month scans, at least for the first few years following the initial Stage III diagnosis.
Hopefully if there is a flaw in my logic others here with better formed opinions than myself (Janner? Celeste?) will correct me.
– Paul.
-
- January 2, 2015 at 10:45 pm
I was exactly in this boat. I had a scan 14 months ago and was NED at that time, but was considered a 3b/c because of a local recurrence. My oncologist (at the time) recommended waiting a year for the next scan, and I agreed. 4 months ago I had another recurrence and so the scan that would have been due a couple of months later was moved up, and it revealed I had progressed to stage IV. Would receiving a scan earlier have changed my ultimate outcome? Good question.
However, in retrospect, I do wish I had the scans every six months and my reasoning is this:
The conventional prognosis for stage IV is one year or less to live. Right now there are two FDA approved treatments available, Yervoy and one of the anti-pd1 drugs. It takes 9 weeks to get all 4 Yervoy infusions, starting from the first one, and at least one more month for a scan since Yervoy is slow working. So that is at least 3 months lost out of the year, likely more since it takes some time to get things set up.
You have to fail Yervoy before you can receive an anti PD-1 treatment. While that treatment may act quicker for those lucky enough to respond to it, it means at least another couple of months maybe three before you know if it’s working.
True, if you are BRAF positive, you can buy yourself a few months, but many patients are not.
The problem is that you need to be fairly healthy to undergo TIL, which seems to be the last major option if you fail Yervoy and anti-PD1 (there are always clinical trials of course, but they are more of a crapshoot). However you need to be in fairly good health to undergo TIL, since it can be a rough go.
So if many patients are going to burn 6 months hoping for a good outcome, leaving, on average less than 6 months to live remaining, I would think you want as much time as possible to leave for TIL or a clinical trial.
Things are changing fast, but once a patient is diagnosed with Stage IV you need to move fast and not waste any time out of that year. So saving up to 6 months by having scans every six months certainly seems worthwhile to me.
I realize all these numbers are generalizations and every person's situation is unique. But still, I am on the side of 6 month scans, at least for the first few years following the initial Stage III diagnosis.
Hopefully if there is a flaw in my logic others here with better formed opinions than myself (Janner? Celeste?) will correct me.
– Paul.
-
- January 2, 2015 at 10:45 pm
I was exactly in this boat. I had a scan 14 months ago and was NED at that time, but was considered a 3b/c because of a local recurrence. My oncologist (at the time) recommended waiting a year for the next scan, and I agreed. 4 months ago I had another recurrence and so the scan that would have been due a couple of months later was moved up, and it revealed I had progressed to stage IV. Would receiving a scan earlier have changed my ultimate outcome? Good question.
However, in retrospect, I do wish I had the scans every six months and my reasoning is this:
The conventional prognosis for stage IV is one year or less to live. Right now there are two FDA approved treatments available, Yervoy and one of the anti-pd1 drugs. It takes 9 weeks to get all 4 Yervoy infusions, starting from the first one, and at least one more month for a scan since Yervoy is slow working. So that is at least 3 months lost out of the year, likely more since it takes some time to get things set up.
You have to fail Yervoy before you can receive an anti PD-1 treatment. While that treatment may act quicker for those lucky enough to respond to it, it means at least another couple of months maybe three before you know if it’s working.
True, if you are BRAF positive, you can buy yourself a few months, but many patients are not.
The problem is that you need to be fairly healthy to undergo TIL, which seems to be the last major option if you fail Yervoy and anti-PD1 (there are always clinical trials of course, but they are more of a crapshoot). However you need to be in fairly good health to undergo TIL, since it can be a rough go.
So if many patients are going to burn 6 months hoping for a good outcome, leaving, on average less than 6 months to live remaining, I would think you want as much time as possible to leave for TIL or a clinical trial.
Things are changing fast, but once a patient is diagnosed with Stage IV you need to move fast and not waste any time out of that year. So saving up to 6 months by having scans every six months certainly seems worthwhile to me.
I realize all these numbers are generalizations and every person's situation is unique. But still, I am on the side of 6 month scans, at least for the first few years following the initial Stage III diagnosis.
Hopefully if there is a flaw in my logic others here with better formed opinions than myself (Janner? Celeste?) will correct me.
– Paul.
-
- January 3, 2015 at 4:29 am
You make some good points, Paul. Currently there is no clear rationale and no specific standards regarding who to scan when and how. However, multiple studies make it very clear that immunotherapies as well as other systemic therapies have much better response rates when the tumor burden is lowest. Thinking along those lines intimates that it would be best to ascertain disease burden as soon as possible, so that treatment can be instituted as soon as possible. Since most of these treatments have gained FDA approval in just the past 3+ years…standards are often being being developed on the fly, by trial parameters, case by case and institution by institution. That doesn't make things particularly clear for oncologists or patients. Hopefully, as more and more data matures, knowledge and clearer guidelines will be developed. Best, c
-
- January 3, 2015 at 4:29 am
You make some good points, Paul. Currently there is no clear rationale and no specific standards regarding who to scan when and how. However, multiple studies make it very clear that immunotherapies as well as other systemic therapies have much better response rates when the tumor burden is lowest. Thinking along those lines intimates that it would be best to ascertain disease burden as soon as possible, so that treatment can be instituted as soon as possible. Since most of these treatments have gained FDA approval in just the past 3+ years…standards are often being being developed on the fly, by trial parameters, case by case and institution by institution. That doesn't make things particularly clear for oncologists or patients. Hopefully, as more and more data matures, knowledge and clearer guidelines will be developed. Best, c
-
- January 3, 2015 at 4:29 am
You make some good points, Paul. Currently there is no clear rationale and no specific standards regarding who to scan when and how. However, multiple studies make it very clear that immunotherapies as well as other systemic therapies have much better response rates when the tumor burden is lowest. Thinking along those lines intimates that it would be best to ascertain disease burden as soon as possible, so that treatment can be instituted as soon as possible. Since most of these treatments have gained FDA approval in just the past 3+ years…standards are often being being developed on the fly, by trial parameters, case by case and institution by institution. That doesn't make things particularly clear for oncologists or patients. Hopefully, as more and more data matures, knowledge and clearer guidelines will be developed. Best, c
-
- January 3, 2015 at 4:36 am
With the speed at which certain metastases occur, is there no value in catching it earlier rather than later; especially as it concerns tumor load and the efficacy of treatments as influenced by tumor load? I'm seeing this in the same way as Paul. Anything I can find more quickly gives me on some level, a better chance of survival.
-
- January 3, 2015 at 4:36 am
With the speed at which certain metastases occur, is there no value in catching it earlier rather than later; especially as it concerns tumor load and the efficacy of treatments as influenced by tumor load? I'm seeing this in the same way as Paul. Anything I can find more quickly gives me on some level, a better chance of survival.
-
- January 3, 2015 at 4:36 am
With the speed at which certain metastases occur, is there no value in catching it earlier rather than later; especially as it concerns tumor load and the efficacy of treatments as influenced by tumor load? I'm seeing this in the same way as Paul. Anything I can find more quickly gives me on some level, a better chance of survival.
-
- January 3, 2015 at 5:30 am
Global melanoma guidelines. Interesting points.
-
- January 3, 2015 at 5:30 am
Global melanoma guidelines. Interesting points.
-
- January 3, 2015 at 5:30 am
Global melanoma guidelines. Interesting points.
-
- January 3, 2015 at 6:47 pm
That's been my thinking up to this point. I'm wondering whether, after 2 years, I'm more likely to find a recurrence myself rather than find it through a CT scan. But, I realize that there may not be symptoms early on. I'm just not yet comfortable with waiting a full year for another scan. (Of course, I'm counting my chickens before they hatch, as I'm assuming the next CT scan will be clear.)
Roxanne
-
- January 3, 2015 at 6:47 pm
That's been my thinking up to this point. I'm wondering whether, after 2 years, I'm more likely to find a recurrence myself rather than find it through a CT scan. But, I realize that there may not be symptoms early on. I'm just not yet comfortable with waiting a full year for another scan. (Of course, I'm counting my chickens before they hatch, as I'm assuming the next CT scan will be clear.)
Roxanne
-
- January 3, 2015 at 6:47 pm
That's been my thinking up to this point. I'm wondering whether, after 2 years, I'm more likely to find a recurrence myself rather than find it through a CT scan. But, I realize that there may not be symptoms early on. I'm just not yet comfortable with waiting a full year for another scan. (Of course, I'm counting my chickens before they hatch, as I'm assuming the next CT scan will be clear.)
Roxanne
-
- January 4, 2015 at 2:01 am
I use ultrasound for follow up.
While it is not as comprehensive as CAT scans or PET scans there is no radiation and it is really easy and quick.
.
-
- You must be logged in to reply to this topic.