› Forums › General Melanoma Community › diagnosis issues
- This topic has 12 replies, 4 voices, and was last updated 10 years, 10 months ago by
Socks.
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- January 27, 2014 at 2:04 pm
Writing out of curiosity that was peaked by the How Long Will I Live piece in the NY Times this weekend, and shared with the forum by Mat. I (and many on this board) have had a similar otherworldly experience with a sudden diagnosis. Mine was exactly the same as in the article—meaning the Drs. I first saw told me that my metastatic disease was Lung Cancer. The location of the tumors was also a match. I was on a work assignment when I took ill — and received this diagnosis in a Midwestern hospital after scans, x-rays, blood work, and exams. When I returned home and my doctors back east reviewed the radiography — the response was " this looks nothing like lung cancer". Melanoma was confirmed by additional scans and biopsy…. Anyway, I've always considered myself lucky that I did not live within the catchment area of that hospital– who knows when or if it would have been discovered that I was being treated incorrectly– but I've never asked the question regarding diagnosis… Perhaps this was just off the spectrum incompetence. Given melanoma's affinity for the lungs– has anyone heard that misdiagnosis/treatment could be an issue?
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- January 27, 2014 at 2:29 pm
My Dad had the opposite experience of yours. Already diagnosed with at least stage II melanoma, an x-ray for an unrelated surgery discovered a lung tumor. The lung clinic doc (at the VA) said it looked more like lung cancer than melanoma and a biopsy was recommended to figure out which cancer was in the lungs. (Dad was a non-smoker in his 80's). Non-small cell lung cancer was confirmed. A little scary when you are hoping for lung cancer over metastatic melanoma.
As for misdiagnosis, so much is dependent upon a doc's experience and expertise. A second outside opinion is ALWAYS a good idea!
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- January 27, 2014 at 2:29 pm
My Dad had the opposite experience of yours. Already diagnosed with at least stage II melanoma, an x-ray for an unrelated surgery discovered a lung tumor. The lung clinic doc (at the VA) said it looked more like lung cancer than melanoma and a biopsy was recommended to figure out which cancer was in the lungs. (Dad was a non-smoker in his 80's). Non-small cell lung cancer was confirmed. A little scary when you are hoping for lung cancer over metastatic melanoma.
As for misdiagnosis, so much is dependent upon a doc's experience and expertise. A second outside opinion is ALWAYS a good idea!
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- January 27, 2014 at 2:29 pm
My Dad had the opposite experience of yours. Already diagnosed with at least stage II melanoma, an x-ray for an unrelated surgery discovered a lung tumor. The lung clinic doc (at the VA) said it looked more like lung cancer than melanoma and a biopsy was recommended to figure out which cancer was in the lungs. (Dad was a non-smoker in his 80's). Non-small cell lung cancer was confirmed. A little scary when you are hoping for lung cancer over metastatic melanoma.
As for misdiagnosis, so much is dependent upon a doc's experience and expertise. A second outside opinion is ALWAYS a good idea!
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- January 27, 2014 at 2:35 pm
Mistakes can happen anywhere at any time especially when diagnosing based on symptoms and scans. That is why no doctor would begin any type of cancer treatment unless and until a biopsy confirmed the diagnosis. In a case like yours, I'm sure that the Midwestern hospital would have correctly diagnosed melanoma before you started any treatments.
The more dangerous situation is when symptoms and scans lead your doctors to diagnose something other than cancer– a "cyst" or "hematoma" or something– so they do not order a biopsy. This does happen to people with melnanoma, especially when no primary skin lesion is present. I don't know what anyone could do to protect themselves against that.
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- January 28, 2014 at 5:01 am
That's my story and the story of many others on this site. The first diagnosis of a cyst or in my case a "dermato fibroma" by 2 doctors, one a family physician and then my dermatologist. I have read of this scenario many times here on MPIP. To some degree, it's not the doctors fault, as this situation presents itself along with all the other benign situations they must deal with. That being said, to me now, it's always up to the patient to persistent and advocate for themselves when they feel somethings not right, and insist upon having it biopsied or removed. That's exactly how I came upon my stage IV diagnosis, when I insisted I wanted this "dermato fibroma removed!" Still to this day, I have no suspicious moles or skin lesions, nor a primary that would indicate any serious skin troubles. Some people would say "why do you continue to see these doctor's that misdiagnosed your melanoma cancer?" and I tell them, "these doctors were so shocked by the final pathology reports, they learned something they didn't know and now take no chances with me, and I believe, I get the best care from them now and I know they feel regret that they didn't diagnose my situation correctly." I also accept the fact that doctors are human, they only know as much as what they're education taught them, learned from experience, and all the interesting encounters with people and life experiences along the way. Life is a journey for all of us, in our careers, marriage, kids, dogs, neighbors, and cancer is just one more dimension of our journey!
Thanks POW for bringing up "mistakes" can happen to anyone, anytime!
Swanee
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- January 28, 2014 at 5:01 am
That's my story and the story of many others on this site. The first diagnosis of a cyst or in my case a "dermato fibroma" by 2 doctors, one a family physician and then my dermatologist. I have read of this scenario many times here on MPIP. To some degree, it's not the doctors fault, as this situation presents itself along with all the other benign situations they must deal with. That being said, to me now, it's always up to the patient to persistent and advocate for themselves when they feel somethings not right, and insist upon having it biopsied or removed. That's exactly how I came upon my stage IV diagnosis, when I insisted I wanted this "dermato fibroma removed!" Still to this day, I have no suspicious moles or skin lesions, nor a primary that would indicate any serious skin troubles. Some people would say "why do you continue to see these doctor's that misdiagnosed your melanoma cancer?" and I tell them, "these doctors were so shocked by the final pathology reports, they learned something they didn't know and now take no chances with me, and I believe, I get the best care from them now and I know they feel regret that they didn't diagnose my situation correctly." I also accept the fact that doctors are human, they only know as much as what they're education taught them, learned from experience, and all the interesting encounters with people and life experiences along the way. Life is a journey for all of us, in our careers, marriage, kids, dogs, neighbors, and cancer is just one more dimension of our journey!
Thanks POW for bringing up "mistakes" can happen to anyone, anytime!
Swanee
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- January 28, 2014 at 5:01 am
That's my story and the story of many others on this site. The first diagnosis of a cyst or in my case a "dermato fibroma" by 2 doctors, one a family physician and then my dermatologist. I have read of this scenario many times here on MPIP. To some degree, it's not the doctors fault, as this situation presents itself along with all the other benign situations they must deal with. That being said, to me now, it's always up to the patient to persistent and advocate for themselves when they feel somethings not right, and insist upon having it biopsied or removed. That's exactly how I came upon my stage IV diagnosis, when I insisted I wanted this "dermato fibroma removed!" Still to this day, I have no suspicious moles or skin lesions, nor a primary that would indicate any serious skin troubles. Some people would say "why do you continue to see these doctor's that misdiagnosed your melanoma cancer?" and I tell them, "these doctors were so shocked by the final pathology reports, they learned something they didn't know and now take no chances with me, and I believe, I get the best care from them now and I know they feel regret that they didn't diagnose my situation correctly." I also accept the fact that doctors are human, they only know as much as what they're education taught them, learned from experience, and all the interesting encounters with people and life experiences along the way. Life is a journey for all of us, in our careers, marriage, kids, dogs, neighbors, and cancer is just one more dimension of our journey!
Thanks POW for bringing up "mistakes" can happen to anyone, anytime!
Swanee
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- January 27, 2014 at 2:35 pm
Mistakes can happen anywhere at any time especially when diagnosing based on symptoms and scans. That is why no doctor would begin any type of cancer treatment unless and until a biopsy confirmed the diagnosis. In a case like yours, I'm sure that the Midwestern hospital would have correctly diagnosed melanoma before you started any treatments.
The more dangerous situation is when symptoms and scans lead your doctors to diagnose something other than cancer– a "cyst" or "hematoma" or something– so they do not order a biopsy. This does happen to people with melnanoma, especially when no primary skin lesion is present. I don't know what anyone could do to protect themselves against that.
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- January 27, 2014 at 2:35 pm
Mistakes can happen anywhere at any time especially when diagnosing based on symptoms and scans. That is why no doctor would begin any type of cancer treatment unless and until a biopsy confirmed the diagnosis. In a case like yours, I'm sure that the Midwestern hospital would have correctly diagnosed melanoma before you started any treatments.
The more dangerous situation is when symptoms and scans lead your doctors to diagnose something other than cancer– a "cyst" or "hematoma" or something– so they do not order a biopsy. This does happen to people with melnanoma, especially when no primary skin lesion is present. I don't know what anyone could do to protect themselves against that.
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- January 28, 2014 at 5:56 am
I know the cancer center I'm going to and the one my mom went to (not for melanoma; she had Non-Hodgkin's lymphoma) both insisted on seeing the slides from the biopsy and doing their own analysis. Heck, Mom's cancer center (M.D.Anderson in Houston) took their own biopsy and ran their own scans and everything just to make extra sure.
So it may be standard practice for a cancer center to give a sort of automatic second opinion, which is good, especially in cases like yours, it sounds like! So if you lived near that first hospital, presumably they would recommend a nearby cancer specialist center for you that would probably have taken a look-see and come up with the same conclusion your second visit did.
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- January 28, 2014 at 5:56 am
I know the cancer center I'm going to and the one my mom went to (not for melanoma; she had Non-Hodgkin's lymphoma) both insisted on seeing the slides from the biopsy and doing their own analysis. Heck, Mom's cancer center (M.D.Anderson in Houston) took their own biopsy and ran their own scans and everything just to make extra sure.
So it may be standard practice for a cancer center to give a sort of automatic second opinion, which is good, especially in cases like yours, it sounds like! So if you lived near that first hospital, presumably they would recommend a nearby cancer specialist center for you that would probably have taken a look-see and come up with the same conclusion your second visit did.
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- January 28, 2014 at 5:56 am
I know the cancer center I'm going to and the one my mom went to (not for melanoma; she had Non-Hodgkin's lymphoma) both insisted on seeing the slides from the biopsy and doing their own analysis. Heck, Mom's cancer center (M.D.Anderson in Houston) took their own biopsy and ran their own scans and everything just to make extra sure.
So it may be standard practice for a cancer center to give a sort of automatic second opinion, which is good, especially in cases like yours, it sounds like! So if you lived near that first hospital, presumably they would recommend a nearby cancer specialist center for you that would probably have taken a look-see and come up with the same conclusion your second visit did.
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