› Forums › General Melanoma Community › Can’t I just stop the scans and visits
- This topic has 15 replies, 4 voices, and was last updated 9 years, 10 months ago by
Kim K.
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- July 5, 2014 at 3:44 pm
CT found questionable areas on chest wall and axilla, surgeon said too small to worry about. This exam I found small enlarged nodes by my collar bone – again surgeon said too small to worry about. I'm thinking of just opting out of scans and visits until something just jumps out. One year out from initial dx IIIB, mitosis 18, one positive lymph node.
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- July 5, 2014 at 5:26 pm
You absolutely can opt out of scans but I have no idea why you would want to. By the time something "jumps" out at you it will probably have progressed pretty far. I doubt that's what you want. They're a pain I know, but stick with it.
Mary,
stage 3a
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- July 5, 2014 at 5:26 pm
You absolutely can opt out of scans but I have no idea why you would want to. By the time something "jumps" out at you it will probably have progressed pretty far. I doubt that's what you want. They're a pain I know, but stick with it.
Mary,
stage 3a
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- July 5, 2014 at 5:26 pm
You absolutely can opt out of scans but I have no idea why you would want to. By the time something "jumps" out at you it will probably have progressed pretty far. I doubt that's what you want. They're a pain I know, but stick with it.
Mary,
stage 3a
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- July 5, 2014 at 8:47 pm
Wow, I really wish you well. Too small to worry about? When you're dealing with Melanoma? A couple of hours it takes to do a scan could save your life! I was diagnosed on 3/19, since then I've had 3 brain MRI's, 2 PET scan (whole body), 2 CT scans, 2 ultasounds, 2 surgeries and 9 days in the hospital. I'm Stage III B/C (they couldn't find a primary so can't narrow my stage anymore than that). Personally, I wouldn't recommend "opting out" because it could kill you. By the time "something just jumps out" it'll probably be too late. I know we aren't statistics but "statistics" say that 80% of Metastatic Melanoma aren't operable. I'd prefer to find anything when it is operable. Your choice though, good luck, God bless.
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- July 6, 2014 at 12:08 am
I understand what you mean. A lot of the scans give false positives, making you freak out for nothing. And some of them aren't necessary in any sense (doctors often don't know what scan to order). And they aren't cheap, even with good insurance, once you're doing multiple scans 3-4 times a year. However, if there's something small there really is a benefit to seeing whether it's growing. If it's small, and doubles in size, you can be pretty sure you need it biopsied or removed, since the odds have gone up that it's something. Just want to say, mainly, as a person who as been through all the scenarios referred to above several times, that I understand the impulse to wait for something to be symptomatic, but if you can afford the scans it may well lead to catching something earlier and having a less serious operation.
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- July 6, 2014 at 12:08 am
I understand what you mean. A lot of the scans give false positives, making you freak out for nothing. And some of them aren't necessary in any sense (doctors often don't know what scan to order). And they aren't cheap, even with good insurance, once you're doing multiple scans 3-4 times a year. However, if there's something small there really is a benefit to seeing whether it's growing. If it's small, and doubles in size, you can be pretty sure you need it biopsied or removed, since the odds have gone up that it's something. Just want to say, mainly, as a person who as been through all the scenarios referred to above several times, that I understand the impulse to wait for something to be symptomatic, but if you can afford the scans it may well lead to catching something earlier and having a less serious operation.
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- July 6, 2014 at 12:08 am
I understand what you mean. A lot of the scans give false positives, making you freak out for nothing. And some of them aren't necessary in any sense (doctors often don't know what scan to order). And they aren't cheap, even with good insurance, once you're doing multiple scans 3-4 times a year. However, if there's something small there really is a benefit to seeing whether it's growing. If it's small, and doubles in size, you can be pretty sure you need it biopsied or removed, since the odds have gone up that it's something. Just want to say, mainly, as a person who as been through all the scenarios referred to above several times, that I understand the impulse to wait for something to be symptomatic, but if you can afford the scans it may well lead to catching something earlier and having a less serious operation.
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- July 6, 2014 at 12:09 am
I understand what you mean. A lot of the scans give false positives, making you freak out for nothing. And some of them aren't necessary in any sense (doctors often don't know what scan to order). And they aren't cheap, even with good insurance, once you're doing multiple scans 3-4 times a year. However, if there's something small there really is a benefit to seeing whether it's growing. If it's small, and doubles in size, you can be pretty sure you need it biopsied or removed, since the odds have gone up that it's something. Just want to say, mainly, as a person who as been through all the scenarios referred to above several times, that I understand the impulse to wait for something to be symptomatic, but if you can afford the scans it may well lead to catching something earlier and having a less serious operation.
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- July 6, 2014 at 12:09 am
I understand what you mean. A lot of the scans give false positives, making you freak out for nothing. And some of them aren't necessary in any sense (doctors often don't know what scan to order). And they aren't cheap, even with good insurance, once you're doing multiple scans 3-4 times a year. However, if there's something small there really is a benefit to seeing whether it's growing. If it's small, and doubles in size, you can be pretty sure you need it biopsied or removed, since the odds have gone up that it's something. Just want to say, mainly, as a person who as been through all the scenarios referred to above several times, that I understand the impulse to wait for something to be symptomatic, but if you can afford the scans it may well lead to catching something earlier and having a less serious operation.
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- July 6, 2014 at 12:09 am
I understand what you mean. A lot of the scans give false positives, making you freak out for nothing. And some of them aren't necessary in any sense (doctors often don't know what scan to order). And they aren't cheap, even with good insurance, once you're doing multiple scans 3-4 times a year. However, if there's something small there really is a benefit to seeing whether it's growing. If it's small, and doubles in size, you can be pretty sure you need it biopsied or removed, since the odds have gone up that it's something. Just want to say, mainly, as a person who as been through all the scenarios referred to above several times, that I understand the impulse to wait for something to be symptomatic, but if you can afford the scans it may well lead to catching something earlier and having a less serious operation.
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- July 5, 2014 at 8:47 pm
Wow, I really wish you well. Too small to worry about? When you're dealing with Melanoma? A couple of hours it takes to do a scan could save your life! I was diagnosed on 3/19, since then I've had 3 brain MRI's, 2 PET scan (whole body), 2 CT scans, 2 ultasounds, 2 surgeries and 9 days in the hospital. I'm Stage III B/C (they couldn't find a primary so can't narrow my stage anymore than that). Personally, I wouldn't recommend "opting out" because it could kill you. By the time "something just jumps out" it'll probably be too late. I know we aren't statistics but "statistics" say that 80% of Metastatic Melanoma aren't operable. I'd prefer to find anything when it is operable. Your choice though, good luck, God bless.
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- July 5, 2014 at 8:47 pm
Wow, I really wish you well. Too small to worry about? When you're dealing with Melanoma? A couple of hours it takes to do a scan could save your life! I was diagnosed on 3/19, since then I've had 3 brain MRI's, 2 PET scan (whole body), 2 CT scans, 2 ultasounds, 2 surgeries and 9 days in the hospital. I'm Stage III B/C (they couldn't find a primary so can't narrow my stage anymore than that). Personally, I wouldn't recommend "opting out" because it could kill you. By the time "something just jumps out" it'll probably be too late. I know we aren't statistics but "statistics" say that 80% of Metastatic Melanoma aren't operable. I'd prefer to find anything when it is operable. Your choice though, good luck, God bless.
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- July 6, 2014 at 9:59 am
IMHO – you can do whatever you want. It is best however to base that decision on risk. With your stage and high mitosis number the risk of recurrance is very high, one year isn't long enough before stopping scans. Talk with you doctor and research time to progression melanoma based on your stage.
Most recurrances will happen within the first 5 years.
I was only stage 2A, did my chest x-rays for 3 years, moved home and forgot about it, just got on with my life. 8 years after my inital mel, while having a back x-ray for other reasons, they found a lung nodule. I became stage IV with NO lymph node involvement or symptoms. If that tumor was in my upper lung field I probably would be dead by now. When I became stage IV almost 5 years ago my girls were only 2 & 4. I am glad to still be here thanks to lung surgery and IL-2.
The collar bone nodes are pretty important to monitor, especially if yours are getting larger over time. Hopefully only an infection, but those are the nodes doctors get more excited about when enlarged. Do the research, listen to your docs, but in the end make your choice based on risk / benefit.
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- July 6, 2014 at 9:59 am
IMHO – you can do whatever you want. It is best however to base that decision on risk. With your stage and high mitosis number the risk of recurrance is very high, one year isn't long enough before stopping scans. Talk with you doctor and research time to progression melanoma based on your stage.
Most recurrances will happen within the first 5 years.
I was only stage 2A, did my chest x-rays for 3 years, moved home and forgot about it, just got on with my life. 8 years after my inital mel, while having a back x-ray for other reasons, they found a lung nodule. I became stage IV with NO lymph node involvement or symptoms. If that tumor was in my upper lung field I probably would be dead by now. When I became stage IV almost 5 years ago my girls were only 2 & 4. I am glad to still be here thanks to lung surgery and IL-2.
The collar bone nodes are pretty important to monitor, especially if yours are getting larger over time. Hopefully only an infection, but those are the nodes doctors get more excited about when enlarged. Do the research, listen to your docs, but in the end make your choice based on risk / benefit.
-
- July 6, 2014 at 9:59 am
IMHO – you can do whatever you want. It is best however to base that decision on risk. With your stage and high mitosis number the risk of recurrance is very high, one year isn't long enough before stopping scans. Talk with you doctor and research time to progression melanoma based on your stage.
Most recurrances will happen within the first 5 years.
I was only stage 2A, did my chest x-rays for 3 years, moved home and forgot about it, just got on with my life. 8 years after my inital mel, while having a back x-ray for other reasons, they found a lung nodule. I became stage IV with NO lymph node involvement or symptoms. If that tumor was in my upper lung field I probably would be dead by now. When I became stage IV almost 5 years ago my girls were only 2 & 4. I am glad to still be here thanks to lung surgery and IL-2.
The collar bone nodes are pretty important to monitor, especially if yours are getting larger over time. Hopefully only an infection, but those are the nodes doctors get more excited about when enlarged. Do the research, listen to your docs, but in the end make your choice based on risk / benefit.
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