› Forums › General Melanoma Community › Stage 1b- no scans
- This topic has 11 replies, 5 voices, and was last updated 7 years, 11 months ago by
Janner.
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- February 16, 2017 at 8:57 pm
Just want to know why scans are not recommended for stage 1b/2A. My anxiety is getting the best of me and am wondering if I should be requesting them. I had stage 1b melanoma removed from my right upper thigh. Negative margins and negative nodes.
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- February 16, 2017 at 9:20 pm
Because the cost outweights the benfit. When 90% of people who are stage 1b never recur, scanning people is expensive business with high radiation. Scans don't catch microscopic mets, only tumors. Scans aren't even done for all stage III/IV individuals. Different sites have different protocols. Scans haven't actually been proven to extend survival. So no, scans aren't recommended or even done anywhere for stage 1b. Unfortunately, cancer has an uncertainty factor that everyone just has to learn to live with.
Janner
Stage 1b since 1992, 3 MM primaries
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- February 16, 2017 at 9:20 pm
Because the cost outweights the benfit. When 90% of people who are stage 1b never recur, scanning people is expensive business with high radiation. Scans don't catch microscopic mets, only tumors. Scans aren't even done for all stage III/IV individuals. Different sites have different protocols. Scans haven't actually been proven to extend survival. So no, scans aren't recommended or even done anywhere for stage 1b. Unfortunately, cancer has an uncertainty factor that everyone just has to learn to live with.
Janner
Stage 1b since 1992, 3 MM primaries
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- February 16, 2017 at 9:26 pm
Definitely a cost versus odds of recurrance issue. It is unfortunate that there really is no certain "catch" for this beast. In hindsight of my own initial diagnosis to progression…. I might ask for a chest x-ray once or twice a year… as well as CBC and CMP blood panels. It still wouldn't guarantee a catch, but the expenses would be much lower, and the tests/imaging could catch the lesions before they're large enough to become physically symptomatic.
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- February 16, 2017 at 9:26 pm
Definitely a cost versus odds of recurrance issue. It is unfortunate that there really is no certain "catch" for this beast. In hindsight of my own initial diagnosis to progression…. I might ask for a chest x-ray once or twice a year… as well as CBC and CMP blood panels. It still wouldn't guarantee a catch, but the expenses would be much lower, and the tests/imaging could catch the lesions before they're large enough to become physically symptomatic.
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- February 18, 2017 at 2:26 pm
I am stage 1b as well, and only got the wide exision/lymph node biopsy. Not even an X-ray.
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- February 20, 2017 at 10:14 pm
My husband had stage 2A in 2012 and clean lymph nodes. AS per protocol he was following with dermatologist every 4 month and had X-rays for the first two years.
In October of 2016 he had a seizure and was admitted to the hospital.
The MRI revealed multiple lesions in brain and CT scan showed several lesions in lungs. Very gloomy results. I am very upset with the existing protocols. If we would have the CT scan or /and MRI at least once a year – I am sure the leasions would be identified earlier.
We still have hopes. He had a surgery to remove the largest brain tumor and then Gamma Knife procedure. He is also started the immunotherapy recently – Keytruda.
My opinion is that protocols have to be changed.
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- February 21, 2017 at 3:50 pm
You are most certainly not alone in wanting protocols changed. The dermatologist I see down at USC was talking about this same issue a few years ago. The difficulty is getting medical groups and insurance companies to agree to changes in the "standard of care". They never want to foot the bill for these things. Your husband's case sounds remarkably similar to mine… although I went without xrays at all, and my primary care physician was doing the skin checks vs. sending me to a dermatologist. I was 1a in June 2007… had regular skin checks every 6 months… suffered a seizure in April 2013. Brain and lung mets. I was otherwise in fabulous phsyical condition. Had noooooo idea what was lurking. I'm sure my insurance company could have saved themselves a boat load of money, had we caught this sooner… buuuuuuut… they've no had to cover 2 brain surgeries, a lung lobe removal, MEK inhibitors, Ipi, Keytruda, 10 rounds of Gamma, almost 4 years of brain MRI's and chest/ab/pelvis CT's… not to mention rheumatologist appointments and meds for side effects. I often wonder what their cost would be to cover the folks with early diagnosis… xray, CT, and MRI follow ups… versus what they have now spent and will FOR THE REST OF MY LIFE on life saving treatments for my… that "1 in a million" patient who slipped past the 95% "cure rate" of early diagnosis. I also wonder what it would cost them, if people could more reliably prove that the lack of diagnostic scanning led to disease progression (and in some cases, death). How many law suits would it take, to change their minds? Surely, someone in the insurance industry is keeping an eye on the numbers and out of pocket expenses. No matter how "caring" insurance companies pretend to be, they're not honestly around to help protect people… they're big business, and in the business of making money.
Ok… rant over… 😉 Best wishes to you and your hubs for much success with Keytruda! It turned out to be my magic bullet.
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- February 20, 2017 at 10:14 pm
My husband had stage 2A in 2012 and clean lymph nodes. AS per protocol he was following with dermatologist every 4 month and had X-rays for the first two years.
In October of 2016 he had a seizure and was admitted to the hospital.
The MRI revealed multiple lesions in brain and CT scan showed several lesions in lungs. Very gloomy results. I am very upset with the existing protocols. If we would have the CT scan or /and MRI at least once a year – I am sure the leasions would be identified earlier.
We still have hopes. He had a surgery to remove the largest brain tumor and then Gamma Knife procedure. He is also started the immunotherapy recently – Keytruda.
My opinion is that protocols have to be changed.
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- February 21, 2017 at 8:18 pm
When I was diagnosed stage I few years ago I remember asking these same questions about getting scanned. I thought I had heard that there’s no evidence that scanning would lead to catching anything any earlier, but it sounds like maybe it would
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- February 21, 2017 at 9:49 pm
Scanning may find something earlier, but studies say it doesn't improve survival numbers. So if you are stage IV and have small tumors or larger tumors, you are still stage IV and will probably respond the same to a treatment. New treatments all the time and we can hope this changes.
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