› Forums › General Melanoma Community › Primary Site of Melanoma
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GraemeL.
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- March 8, 2016 at 10:45 pm
The coroner's finding into the death of my wife Susan from melanoma has just been published and is on line at http://www.coronerscourt.vic.gov.au/home/coroners+written+findings/findings+-+481313+susan+ruth+lovell .
In dealing with the investigation, my position has been that the primary site was the known lesion on Susan’s left calf and that it was an amelanotic melanoma that was misdiagnosed by a dermatologist in January 2010 as a seborrheic keratosis. This grew larger and was treated by her GP with silver nitrate in November 2010, and removed without biopsy a month later as it was bleeding and smelling offensively of rotting flesh. In July 2011 Susan was diagnosed with melanoma in her left groin lymph nodes which were removed surgically. The largest was 50mm diameter. At the same time the site of the excised lesion on Susan’s left leg was sampled for biopsy with negative results. No other primary site was found on Susan’s left leg during multiple physical examinations or during three full body PET scans.
As I see it the known lesion on Susan’s left leg must have been the primary melanoma because no other primary site was found. However due to the lack of biopsy results on this lesion and the negative biopsy result on the site, local doctors have been supporting an unknown primary or occult scenario. For this to have happened there must have been another lesion on Susan’s left leg coincidentally at the same time as the known lesion, and the primary of this aggressive melanoma which killed Susan coincidentally disappeared without trace and was undetectable during both physical and PET examination. Another scenario offered but not mentioned in the finding is that the seborrheic keratosis diagnosed by the dermatologist conveniently mutated into melanoma, but this does not explain why the biopsy on the site of the lesion was negative. My own theory for the negative biopsy is that the use of silver nitrate on the lesion and the rotting of flesh before excision a month later effectively killed the melanoma cells at the primary site.
With the extensive experience of many people in the melanoma.org community, I would appreciate any comments on the likelihood of each of the three scenarios:
1. Primary site was the known lesion.
2. Primary unknown.
3. Known lesion changed from seborrheic keratosis to melanoma.
The investigation is now closed but it would be great to have your feedback to give me peace of mind as to what really happened that resulted in Susan’s death.
Please comment and advise of your experiences.
Graeme
- Replies
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- March 9, 2016 at 12:19 am
You have my deepest sympathy for your loss.
I read the coroner's report. I have to say I think the coroner did an excellent job up to and inclluding offering relevant recommendations to hospitals and professional organisations.
I do not think I can offer anything you are going to want to hear. You cannot say for definite that the primary was the lesion the doctor had diagnosed as seborrheic keratosis. Two doctors throught the lesion was not melanoma. Also, as the expert the coroner called pointed out, some primaries are never found.
I do not know if seborrheic keratosis can change into melanoma. I doubt it or doctors would have all seborrheic keratosis lesions cut out and sent off to laboratories.
Melanoma is a tricky disease. My melanoma specialist was frank about it when I first met her. Melanoma can progress in very different ways in different patients. Tumour cells mutate – some melanomas are much more agressive than others. Some people's immune systems are better at fighting the cancer cells than others'.
Maybe there was a tiny primary and your wife's immune system won that particuar battle but a few melanoma cells, perhaps with mutations that made them invisible to her immune system, had slipped away.
I found the complements the coroner paid your wife in the report very moving. She must have been a wonderful person.
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- March 9, 2016 at 12:19 am
You have my deepest sympathy for your loss.
I read the coroner's report. I have to say I think the coroner did an excellent job up to and inclluding offering relevant recommendations to hospitals and professional organisations.
I do not think I can offer anything you are going to want to hear. You cannot say for definite that the primary was the lesion the doctor had diagnosed as seborrheic keratosis. Two doctors throught the lesion was not melanoma. Also, as the expert the coroner called pointed out, some primaries are never found.
I do not know if seborrheic keratosis can change into melanoma. I doubt it or doctors would have all seborrheic keratosis lesions cut out and sent off to laboratories.
Melanoma is a tricky disease. My melanoma specialist was frank about it when I first met her. Melanoma can progress in very different ways in different patients. Tumour cells mutate – some melanomas are much more agressive than others. Some people's immune systems are better at fighting the cancer cells than others'.
Maybe there was a tiny primary and your wife's immune system won that particuar battle but a few melanoma cells, perhaps with mutations that made them invisible to her immune system, had slipped away.
I found the complements the coroner paid your wife in the report very moving. She must have been a wonderful person.
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- March 9, 2016 at 6:09 pm
Melanoma progresses in many different ways and at very different rates. It spreads to many different sites. This means it is difficult to predict the outcomes for any particular patient. In my optinion, this is because the patient's immune system plays more part in attacking the melanoma cells than in some other cancers.
Also melanoma cells have a high mutation rate. This high mutation rate means that there are always different cells appearing for the immune system to fight. Unfortunately some of these appear to be mutations that make the cells 'invisible' to the patient's uimmune system. Other mutations produce very mobile cells that can migrate, making metastasis more likely.
Some cancers are much more predictable (for example testicular cancer). The cancer progresses in a predictable manner.which means that doctors can give patients much more clear-cut information based on which those patients can make a decision.
I have a degree in biochemistry and a PhD in cell pathology (I studed tumour cells). I have used every iota of my skill to fins 'straight answers' to seemingly straughtforward questions about melanoma in the scientific literature. I can't.
It is possible that it will turn out that there are many different cancers that we class as 'melanoma'. The fact that some melanomas show mutations that others do not points in this direction. This has proved to be true of pancreatic cancer.
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- March 9, 2016 at 6:09 pm
Melanoma progresses in many different ways and at very different rates. It spreads to many different sites. This means it is difficult to predict the outcomes for any particular patient. In my optinion, this is because the patient's immune system plays more part in attacking the melanoma cells than in some other cancers.
Also melanoma cells have a high mutation rate. This high mutation rate means that there are always different cells appearing for the immune system to fight. Unfortunately some of these appear to be mutations that make the cells 'invisible' to the patient's uimmune system. Other mutations produce very mobile cells that can migrate, making metastasis more likely.
Some cancers are much more predictable (for example testicular cancer). The cancer progresses in a predictable manner.which means that doctors can give patients much more clear-cut information based on which those patients can make a decision.
I have a degree in biochemistry and a PhD in cell pathology (I studed tumour cells). I have used every iota of my skill to fins 'straight answers' to seemingly straughtforward questions about melanoma in the scientific literature. I can't.
It is possible that it will turn out that there are many different cancers that we class as 'melanoma'. The fact that some melanomas show mutations that others do not points in this direction. This has proved to be true of pancreatic cancer.
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- March 9, 2016 at 6:09 pm
Melanoma progresses in many different ways and at very different rates. It spreads to many different sites. This means it is difficult to predict the outcomes for any particular patient. In my optinion, this is because the patient's immune system plays more part in attacking the melanoma cells than in some other cancers.
Also melanoma cells have a high mutation rate. This high mutation rate means that there are always different cells appearing for the immune system to fight. Unfortunately some of these appear to be mutations that make the cells 'invisible' to the patient's uimmune system. Other mutations produce very mobile cells that can migrate, making metastasis more likely.
Some cancers are much more predictable (for example testicular cancer). The cancer progresses in a predictable manner.which means that doctors can give patients much more clear-cut information based on which those patients can make a decision.
I have a degree in biochemistry and a PhD in cell pathology (I studed tumour cells). I have used every iota of my skill to fins 'straight answers' to seemingly straughtforward questions about melanoma in the scientific literature. I can't.
It is possible that it will turn out that there are many different cancers that we class as 'melanoma'. The fact that some melanomas show mutations that others do not points in this direction. This has proved to be true of pancreatic cancer.
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- March 9, 2016 at 12:19 am
You have my deepest sympathy for your loss.
I read the coroner's report. I have to say I think the coroner did an excellent job up to and inclluding offering relevant recommendations to hospitals and professional organisations.
I do not think I can offer anything you are going to want to hear. You cannot say for definite that the primary was the lesion the doctor had diagnosed as seborrheic keratosis. Two doctors throught the lesion was not melanoma. Also, as the expert the coroner called pointed out, some primaries are never found.
I do not know if seborrheic keratosis can change into melanoma. I doubt it or doctors would have all seborrheic keratosis lesions cut out and sent off to laboratories.
Melanoma is a tricky disease. My melanoma specialist was frank about it when I first met her. Melanoma can progress in very different ways in different patients. Tumour cells mutate – some melanomas are much more agressive than others. Some people's immune systems are better at fighting the cancer cells than others'.
Maybe there was a tiny primary and your wife's immune system won that particuar battle but a few melanoma cells, perhaps with mutations that made them invisible to her immune system, had slipped away.
I found the complements the coroner paid your wife in the report very moving. She must have been a wonderful person.
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- March 9, 2016 at 4:46 pm
I am so sorry for your loss.
I had a unknown primary. Here's what I've been able to learn about this situation:
1. It occurs in about 2-6% of melanoma patients. But I have seen percentages as high as 10%. Even at 10% it still doesn't occur very often.
2. The theory is that at one time there was a mole and the body's immune system zapped it. But some cells escaped and made their way into the lymph nodes. Sometimes the lymph nodes trap them where they continue to get a thrashing but other times they do not trap them, as in Jimmy Carter's case.
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- March 9, 2016 at 4:46 pm
I am so sorry for your loss.
I had a unknown primary. Here's what I've been able to learn about this situation:
1. It occurs in about 2-6% of melanoma patients. But I have seen percentages as high as 10%. Even at 10% it still doesn't occur very often.
2. The theory is that at one time there was a mole and the body's immune system zapped it. But some cells escaped and made their way into the lymph nodes. Sometimes the lymph nodes trap them where they continue to get a thrashing but other times they do not trap them, as in Jimmy Carter's case.
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- March 9, 2016 at 4:46 pm
I am so sorry for your loss.
I had a unknown primary. Here's what I've been able to learn about this situation:
1. It occurs in about 2-6% of melanoma patients. But I have seen percentages as high as 10%. Even at 10% it still doesn't occur very often.
2. The theory is that at one time there was a mole and the body's immune system zapped it. But some cells escaped and made their way into the lymph nodes. Sometimes the lymph nodes trap them where they continue to get a thrashing but other times they do not trap them, as in Jimmy Carter's case.
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- March 10, 2016 at 12:47 am
Many thanks to MoiraM, Linny and Anonymous for your time and effort in making these comments.
Susan was a lovely woman. We met when she was 17, fell in love and married for 40 years when she was 19 and I was just 21. She was a devoted mother and we have three healthy intelligent adult children who are all successful.
The irony to me is that Susan's doctor used silver nitrate sticks to cauterize the known lesion on her left calf in November 2010. As I see it these did exactly what they were designed to do and killed the melanoma cells in this primary lesion. Silver nitrate sticks are also used to kill off warts etc but are much more effective than salicylic acid in wart remover. It was then excised a month later without biopsy. However, after the fully healed site of the lesion was biopsied in July 2011 with negative results, medical experts decided that the known lesion could not have been the primary site and went looking for the mysterious unknown primary.
Occam's Razor states that the simplest solution is usually the correct one, and this is that the silver nitrate killed the melanoma cells of the known lesion as they are designed to do, resulting in the later negative biopsy of the site. As the known lesion was already acknowledged, the extreme coincidences involved in having an unknown primary at the same time, and then for it to disappear totally without trace in the same timeframe make it statistically improbable as far as I am concerned. Doctors have proposed this unknown primary scenario instead of acknowledging that the medically applied silver nitrate killed off the melanoma at the known primary site as it is designed to do.
Appreciate all your comments.
Graeme
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- March 10, 2016 at 12:47 am
Many thanks to MoiraM, Linny and Anonymous for your time and effort in making these comments.
Susan was a lovely woman. We met when she was 17, fell in love and married for 40 years when she was 19 and I was just 21. She was a devoted mother and we have three healthy intelligent adult children who are all successful.
The irony to me is that Susan's doctor used silver nitrate sticks to cauterize the known lesion on her left calf in November 2010. As I see it these did exactly what they were designed to do and killed the melanoma cells in this primary lesion. Silver nitrate sticks are also used to kill off warts etc but are much more effective than salicylic acid in wart remover. It was then excised a month later without biopsy. However, after the fully healed site of the lesion was biopsied in July 2011 with negative results, medical experts decided that the known lesion could not have been the primary site and went looking for the mysterious unknown primary.
Occam's Razor states that the simplest solution is usually the correct one, and this is that the silver nitrate killed the melanoma cells of the known lesion as they are designed to do, resulting in the later negative biopsy of the site. As the known lesion was already acknowledged, the extreme coincidences involved in having an unknown primary at the same time, and then for it to disappear totally without trace in the same timeframe make it statistically improbable as far as I am concerned. Doctors have proposed this unknown primary scenario instead of acknowledging that the medically applied silver nitrate killed off the melanoma at the known primary site as it is designed to do.
Appreciate all your comments.
Graeme
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- March 10, 2016 at 12:47 am
Many thanks to MoiraM, Linny and Anonymous for your time and effort in making these comments.
Susan was a lovely woman. We met when she was 17, fell in love and married for 40 years when she was 19 and I was just 21. She was a devoted mother and we have three healthy intelligent adult children who are all successful.
The irony to me is that Susan's doctor used silver nitrate sticks to cauterize the known lesion on her left calf in November 2010. As I see it these did exactly what they were designed to do and killed the melanoma cells in this primary lesion. Silver nitrate sticks are also used to kill off warts etc but are much more effective than salicylic acid in wart remover. It was then excised a month later without biopsy. However, after the fully healed site of the lesion was biopsied in July 2011 with negative results, medical experts decided that the known lesion could not have been the primary site and went looking for the mysterious unknown primary.
Occam's Razor states that the simplest solution is usually the correct one, and this is that the silver nitrate killed the melanoma cells of the known lesion as they are designed to do, resulting in the later negative biopsy of the site. As the known lesion was already acknowledged, the extreme coincidences involved in having an unknown primary at the same time, and then for it to disappear totally without trace in the same timeframe make it statistically improbable as far as I am concerned. Doctors have proposed this unknown primary scenario instead of acknowledging that the medically applied silver nitrate killed off the melanoma at the known primary site as it is designed to do.
Appreciate all your comments.
Graeme
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