› Forums › General Melanoma Community › Yesterday I was told I have a nodular malignant melanoma and I am terrified
- This topic has 45 replies, 7 voices, and was last updated 11 years, 1 month ago by
kpcollins31.
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- April 1, 2014 at 7:17 pm
It started with what just looked like a little pink dot on my forearm. I ignored it. Over 3-4 months it got bigger and puffed up. It had no color and just looked like a weird blister. I went to my regular MD and she said it could be a basal cell carcinoma which is no big deal because they don't metastasize and grow very gradually. She referred me to a dermatologist to have it checked out. I saw him a month later and he looked it over thoroughly and also thought it was nothing more than a basal cell carcinoma. He cut it out and sent it off for a biopsy.
Two days later I was then frantically called by his office and told I needed to get in as soon as possible, but they wouldn't tell me why. When I got there he sadly and apologetically told me that the lab results had come in and it is actually a nodular non-pigmented malignant melonoma at Clark's level IV, Breslow's thickness, at least 1.75 mm and transected at a deep margin (in situ melanoma in adnexa). He said it is a deep tumor which is VERY serious. I went into shock and my mind went blank. For a few minutes I didn't hear what he was saying and just heard murmuring. I had no idea this could possibly be a melanoma. I have seen numerous images of them and what I had that he cut out looked nothing like one because it had no color of any kind. If it had I would have rushed to the doctor much sooner. He checked over all of my skin everywhere and felt all of my lymph glands and abdominal organs. He said he could not see anything that looked like other melanomas and my lymph glands and organs felt ordinary which could be promissing.
He has referred me to a melanoma specialist in San Francisco where he said they will inject me with blue dye and/or some kind of radiation stuff to see if the melanoma has metastisized to my lymph glands or anywhere else that will then result in surgery. He also said that they will also likely remove more of the the area around the melanoma nodule that he may only have partically removed to hopefully get it all out. I have to go and get blood tests done and two chest xrays today, and they are in the process of setting me up to have a PET bodyscan (hopefully this week). I am still in shock. I don't know what to think because I feel perfectly fine. I am just scared $hitless (sorry for the cuss word) right now and don't know what to think. I am just hoping this evil, destructive thing that has invaded my forearm has not moved to other parts of my body. My love of the sun, gardening, and the beach (even though I always wear sunscreen) has turned against me.
- Replies
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- April 1, 2014 at 8:22 pm
Sorry to have you join us here – initial misdiagnosis of melanoma has haunted many of us here. Mine was also on my forearm and I was told by more than one doctor that it was nothing to worry about… by the time someone did worry about it, I was stage IIC right off the bat.
What they will do is called a wide local excision (WLE) to remove margins around the melanoma to check that it has not spread into those areas. Depending on the size of the excision, they may use a skin graft as they did with me. Sounds like they will also perform a sentinel lymph node biopsy (SLNB) as they did with me… they will give multiple injections around the melanoma with a radiactive dye which they will trace the path of to the nearest lymph nodes. While you are under for the WLE, they will also remove a few of those lymph nodes to check them for melanoma.
The initial diagnosis is always tough to digest. Best advice I can offer is to see a melanoma specialist as treatments are evolving rapidly. Also, do not try to read ahead and play the what if game… take one step at a time based on facts alone and do not worry about what might be.
Feel free to PM me if you have any questions about the surgery/recovery because I went through it all with a primary in the same general location.
Kevin
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- April 1, 2014 at 8:22 pm
Sorry to have you join us here – initial misdiagnosis of melanoma has haunted many of us here. Mine was also on my forearm and I was told by more than one doctor that it was nothing to worry about… by the time someone did worry about it, I was stage IIC right off the bat.
What they will do is called a wide local excision (WLE) to remove margins around the melanoma to check that it has not spread into those areas. Depending on the size of the excision, they may use a skin graft as they did with me. Sounds like they will also perform a sentinel lymph node biopsy (SLNB) as they did with me… they will give multiple injections around the melanoma with a radiactive dye which they will trace the path of to the nearest lymph nodes. While you are under for the WLE, they will also remove a few of those lymph nodes to check them for melanoma.
The initial diagnosis is always tough to digest. Best advice I can offer is to see a melanoma specialist as treatments are evolving rapidly. Also, do not try to read ahead and play the what if game… take one step at a time based on facts alone and do not worry about what might be.
Feel free to PM me if you have any questions about the surgery/recovery because I went through it all with a primary in the same general location.
Kevin
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- April 1, 2014 at 8:22 pm
Sorry to have you join us here – initial misdiagnosis of melanoma has haunted many of us here. Mine was also on my forearm and I was told by more than one doctor that it was nothing to worry about… by the time someone did worry about it, I was stage IIC right off the bat.
What they will do is called a wide local excision (WLE) to remove margins around the melanoma to check that it has not spread into those areas. Depending on the size of the excision, they may use a skin graft as they did with me. Sounds like they will also perform a sentinel lymph node biopsy (SLNB) as they did with me… they will give multiple injections around the melanoma with a radiactive dye which they will trace the path of to the nearest lymph nodes. While you are under for the WLE, they will also remove a few of those lymph nodes to check them for melanoma.
The initial diagnosis is always tough to digest. Best advice I can offer is to see a melanoma specialist as treatments are evolving rapidly. Also, do not try to read ahead and play the what if game… take one step at a time based on facts alone and do not worry about what might be.
Feel free to PM me if you have any questions about the surgery/recovery because I went through it all with a primary in the same general location.
Kevin
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- April 3, 2014 at 1:23 am
Thank you so much for this information Kevin. You told me that I will be going through exactly what my dermatologist told me while I was in shock so as a result I didn't hear or comprehend it very well at all at that time. He said that when I see the melanoma specialist up in San Francisco I will be undergoing a WLE to remove margins around the melanoma to check that it has not spread and so that they can get it all out, and that they will give me multiple injections around the melanoma with a radioactive and/or blue dye which they will trace the path of to the nearest lymph nodes to see if the melanoma has metastasized to my lymph nodes. He said that they have found that chemotherapy and interferon does not do any good for people with melanoma cancer, and just makes them sick, so it is unlikely that I will have either one given to me. I actually was glad to hear that because my father-in-law had renal cancer and at one point was given interferon. It made him the sickest he had ever been in his life. He thought that it, and not the renal cancer, was going to kill him. It didn't, but eventually the renal cancer did when it spread to his lungs. When he was diagnosed he was told he would only live another 6 months to one year. He did all kinds of untested, and what some consider crazy things like taking shark cartilege and other things. As a result he remained alive and relatively healthy for 7 more years and was able to travel and do all the things he had always wanted to do, but hadn't yet done.
Is it customary for them to also do lymph node biopsies before the radioactive/blue dye results come in showing that it has moved up to the lymph nodes? Also, is it probable that they will put me under a general asethetic when they do the WLE and radioactive/blue dye testing, and/or SLNB? Is having this done painful? How much pain were you in and how were you restricted afterwards? How long did it take you to recover? Were you left with bad scars? Did they also put you on any medication, creams, ointments,etc. to try to eliminate the melanoma? Did they recommend that you eat certain things, and not others, and do certain things, but not others (besides being in the sun of course)? And most importantly, was that the last surgery you had to have because they got rid of all the cancer, and are you now cancer free and completely recovered (I certainly hope so)? I may have more questions to ask and will PM you if I do, and feel free to PM me with the answers if you would prefer to do so.
Fortunately I will be seeing a highly rated melanoma specialist after all of my test results are in. Luckily my dermatologist's assistant called me today and told me that my blood tests (liver panel, blood cell count, and LDH), and my chest x-rays were all perfectly normal and showed no signs of cancer. Even though I know it is unlikely, I keep hoping that perhaps the lab person who viewed my biopsy was mistaken and what has now been identified as a melanoma, but that everyone initially thought was just a blister or basal cell carcinoma, will actually turn out to be just a basal cell carcinoma and not a melanoma. I also hope and pray that if it is a melanoma it will not have spread anywhere else even though it has been there for months now.
Once again, thank you so much for writing to me
.
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- April 3, 2014 at 1:23 am
Thank you so much for this information Kevin. You told me that I will be going through exactly what my dermatologist told me while I was in shock so as a result I didn't hear or comprehend it very well at all at that time. He said that when I see the melanoma specialist up in San Francisco I will be undergoing a WLE to remove margins around the melanoma to check that it has not spread and so that they can get it all out, and that they will give me multiple injections around the melanoma with a radioactive and/or blue dye which they will trace the path of to the nearest lymph nodes to see if the melanoma has metastasized to my lymph nodes. He said that they have found that chemotherapy and interferon does not do any good for people with melanoma cancer, and just makes them sick, so it is unlikely that I will have either one given to me. I actually was glad to hear that because my father-in-law had renal cancer and at one point was given interferon. It made him the sickest he had ever been in his life. He thought that it, and not the renal cancer, was going to kill him. It didn't, but eventually the renal cancer did when it spread to his lungs. When he was diagnosed he was told he would only live another 6 months to one year. He did all kinds of untested, and what some consider crazy things like taking shark cartilege and other things. As a result he remained alive and relatively healthy for 7 more years and was able to travel and do all the things he had always wanted to do, but hadn't yet done.
Is it customary for them to also do lymph node biopsies before the radioactive/blue dye results come in showing that it has moved up to the lymph nodes? Also, is it probable that they will put me under a general asethetic when they do the WLE and radioactive/blue dye testing, and/or SLNB? Is having this done painful? How much pain were you in and how were you restricted afterwards? How long did it take you to recover? Were you left with bad scars? Did they also put you on any medication, creams, ointments,etc. to try to eliminate the melanoma? Did they recommend that you eat certain things, and not others, and do certain things, but not others (besides being in the sun of course)? And most importantly, was that the last surgery you had to have because they got rid of all the cancer, and are you now cancer free and completely recovered (I certainly hope so)? I may have more questions to ask and will PM you if I do, and feel free to PM me with the answers if you would prefer to do so.
Fortunately I will be seeing a highly rated melanoma specialist after all of my test results are in. Luckily my dermatologist's assistant called me today and told me that my blood tests (liver panel, blood cell count, and LDH), and my chest x-rays were all perfectly normal and showed no signs of cancer. Even though I know it is unlikely, I keep hoping that perhaps the lab person who viewed my biopsy was mistaken and what has now been identified as a melanoma, but that everyone initially thought was just a blister or basal cell carcinoma, will actually turn out to be just a basal cell carcinoma and not a melanoma. I also hope and pray that if it is a melanoma it will not have spread anywhere else even though it has been there for months now.
Once again, thank you so much for writing to me
.
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- April 3, 2014 at 3:24 am
Not Kevin, but here is a general sequence of events. The schedule you for general anesthesia. Under general, they inject the tracer/dye and monitor which lymph basins and lymph nodes it drains to. They remove said lymph nodes. Close up that small incision. Then the move to the primary melanoma and do a wide local excision. Yes, it will most likely be large. Much depends on the area of anatomy and how tight the skin is. But basically, they will remove AT LEAST 1cm in all directions. And given that your melanoma was bisected, they may even take more. So think of the excision as being elliptical (eye shaped). Top to bottom is at least 2cm. The width will be at least 3 times the height. They have to make it that long so they can bring the edges of the skin together. What I stated is probably the smallest you will see – it may be longer. The longer they make the incision, the easier it is to close the wound.
Please don't set your heart on this being basal cell. Under pathology, they probably used some type of "stain" to identify melanocytes. The stain is specific to melanocytes and makes them show up better. It doesn't stain basal cells. This is pretty common practice so it's unlikely that they are going to confuse basal cells with melanocytes under a microscope if they used any stains.
If your sentinel node is clear of melanoma and the WLE removes the residual cancer, you will be considered NED (no evidence of disease). At this point, you would be monitored — skin and lymph basin checks. If the sentinel node is positive, then you will likely face further surgery to have all the lymph nodes in the area removed. That's a much more invasive surgery. Healing of the WLE just takes time. Over doing it is not recommended because you don't want to split the stitches or wound. The SNB typically is a very small incision. If you needed the lymph node dissection, you would likely have surgical drains in for a while and a longer recovery period.
Other than being sun smart, there aren't too many general recommendations. It sounds like your lifestyle is a healthy one and they'd most likely say to continue the same. Watch your moles and skin for CHANGE. Learn how to palpate your own lymph node basins to watch for change. Other than that, there is not much to recommend. BTW, RCC and melanoma often have similar treatments. They seem to react similarly to the same family of drugs.
Best wishes,
Janner
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- April 3, 2014 at 3:24 am
Not Kevin, but here is a general sequence of events. The schedule you for general anesthesia. Under general, they inject the tracer/dye and monitor which lymph basins and lymph nodes it drains to. They remove said lymph nodes. Close up that small incision. Then the move to the primary melanoma and do a wide local excision. Yes, it will most likely be large. Much depends on the area of anatomy and how tight the skin is. But basically, they will remove AT LEAST 1cm in all directions. And given that your melanoma was bisected, they may even take more. So think of the excision as being elliptical (eye shaped). Top to bottom is at least 2cm. The width will be at least 3 times the height. They have to make it that long so they can bring the edges of the skin together. What I stated is probably the smallest you will see – it may be longer. The longer they make the incision, the easier it is to close the wound.
Please don't set your heart on this being basal cell. Under pathology, they probably used some type of "stain" to identify melanocytes. The stain is specific to melanocytes and makes them show up better. It doesn't stain basal cells. This is pretty common practice so it's unlikely that they are going to confuse basal cells with melanocytes under a microscope if they used any stains.
If your sentinel node is clear of melanoma and the WLE removes the residual cancer, you will be considered NED (no evidence of disease). At this point, you would be monitored — skin and lymph basin checks. If the sentinel node is positive, then you will likely face further surgery to have all the lymph nodes in the area removed. That's a much more invasive surgery. Healing of the WLE just takes time. Over doing it is not recommended because you don't want to split the stitches or wound. The SNB typically is a very small incision. If you needed the lymph node dissection, you would likely have surgical drains in for a while and a longer recovery period.
Other than being sun smart, there aren't too many general recommendations. It sounds like your lifestyle is a healthy one and they'd most likely say to continue the same. Watch your moles and skin for CHANGE. Learn how to palpate your own lymph node basins to watch for change. Other than that, there is not much to recommend. BTW, RCC and melanoma often have similar treatments. They seem to react similarly to the same family of drugs.
Best wishes,
Janner
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- April 3, 2014 at 3:24 am
Not Kevin, but here is a general sequence of events. The schedule you for general anesthesia. Under general, they inject the tracer/dye and monitor which lymph basins and lymph nodes it drains to. They remove said lymph nodes. Close up that small incision. Then the move to the primary melanoma and do a wide local excision. Yes, it will most likely be large. Much depends on the area of anatomy and how tight the skin is. But basically, they will remove AT LEAST 1cm in all directions. And given that your melanoma was bisected, they may even take more. So think of the excision as being elliptical (eye shaped). Top to bottom is at least 2cm. The width will be at least 3 times the height. They have to make it that long so they can bring the edges of the skin together. What I stated is probably the smallest you will see – it may be longer. The longer they make the incision, the easier it is to close the wound.
Please don't set your heart on this being basal cell. Under pathology, they probably used some type of "stain" to identify melanocytes. The stain is specific to melanocytes and makes them show up better. It doesn't stain basal cells. This is pretty common practice so it's unlikely that they are going to confuse basal cells with melanocytes under a microscope if they used any stains.
If your sentinel node is clear of melanoma and the WLE removes the residual cancer, you will be considered NED (no evidence of disease). At this point, you would be monitored — skin and lymph basin checks. If the sentinel node is positive, then you will likely face further surgery to have all the lymph nodes in the area removed. That's a much more invasive surgery. Healing of the WLE just takes time. Over doing it is not recommended because you don't want to split the stitches or wound. The SNB typically is a very small incision. If you needed the lymph node dissection, you would likely have surgical drains in for a while and a longer recovery period.
Other than being sun smart, there aren't too many general recommendations. It sounds like your lifestyle is a healthy one and they'd most likely say to continue the same. Watch your moles and skin for CHANGE. Learn how to palpate your own lymph node basins to watch for change. Other than that, there is not much to recommend. BTW, RCC and melanoma often have similar treatments. They seem to react similarly to the same family of drugs.
Best wishes,
Janner
-
- April 3, 2014 at 8:45 pm
They will biopsy the lymph nodes based on what the likely path of drainage from the site of the primary melanoma could be… they will only remove a few lymph nodes. The dye only shows the potential path and does not mean that the melanoma has actually spread to any lymph node. In my case, it had not spread at that time.
The injection of the radioactive dye will not be done under anasthesia. It is a series of 5-6 injections if I remember correctly around the perimeter of the primary melanoma site. It did sting, but it was not terrible. If you are nervous about it, they might be able to give you something to take the edge off. It takes 30-45 minutes or so for them to locate the nodes.
The surgery (both SLNB and WLE) will come shortly thereafter and you will be under general anasthesia. As such, you will feel nothing. It is outpatient surgery so you will go home the same day. Your arm will be heavily bandaged where they did the WLE, especially if you require a graft as I did. For me, they took the graft from the same arm, but they will sometimes take it from your thigh.
Now for the recovery… I can honestly say that the SLNB recovery was a piece of cake. Incision under the armpit closed with surgical glue. Little stiff for a few weeks, but not much pain at all. Skin graft was a tougher recovery. The bandages had to stay in place for several weeks as the graft healed. Activity during that time was limited. I worked full time but typing did cause my arm to swell. I admit that the scar was nasty and that when they removed the bandages for the first time, I was a little depressed. It looks like a baby shark took a bite out of my arm. They did send me to "wound therapy" for a couple months to work on reducing the scar and ensuring full function… it was worth it. In hindsight, it was a blip on the radar and life returned to normal in a couple months – at that time, you will have unrestricted activity.
I was not given any special diet guidance, but they did recommend keeping out of the sun as much as possible – however, I am not one to believe that diet can cure cancer and I am pretty sure that excessive sun exposure is not what caused my melanoma.
I wish I could say that was the end of my melanoma journey, but it was not. I progressed to stage IV recently, but that will not stop me. I still feel great, work full time, exercise, and live.
Kevin
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- April 3, 2014 at 8:45 pm
They will biopsy the lymph nodes based on what the likely path of drainage from the site of the primary melanoma could be… they will only remove a few lymph nodes. The dye only shows the potential path and does not mean that the melanoma has actually spread to any lymph node. In my case, it had not spread at that time.
The injection of the radioactive dye will not be done under anasthesia. It is a series of 5-6 injections if I remember correctly around the perimeter of the primary melanoma site. It did sting, but it was not terrible. If you are nervous about it, they might be able to give you something to take the edge off. It takes 30-45 minutes or so for them to locate the nodes.
The surgery (both SLNB and WLE) will come shortly thereafter and you will be under general anasthesia. As such, you will feel nothing. It is outpatient surgery so you will go home the same day. Your arm will be heavily bandaged where they did the WLE, especially if you require a graft as I did. For me, they took the graft from the same arm, but they will sometimes take it from your thigh.
Now for the recovery… I can honestly say that the SLNB recovery was a piece of cake. Incision under the armpit closed with surgical glue. Little stiff for a few weeks, but not much pain at all. Skin graft was a tougher recovery. The bandages had to stay in place for several weeks as the graft healed. Activity during that time was limited. I worked full time but typing did cause my arm to swell. I admit that the scar was nasty and that when they removed the bandages for the first time, I was a little depressed. It looks like a baby shark took a bite out of my arm. They did send me to "wound therapy" for a couple months to work on reducing the scar and ensuring full function… it was worth it. In hindsight, it was a blip on the radar and life returned to normal in a couple months – at that time, you will have unrestricted activity.
I was not given any special diet guidance, but they did recommend keeping out of the sun as much as possible – however, I am not one to believe that diet can cure cancer and I am pretty sure that excessive sun exposure is not what caused my melanoma.
I wish I could say that was the end of my melanoma journey, but it was not. I progressed to stage IV recently, but that will not stop me. I still feel great, work full time, exercise, and live.
Kevin
-
- April 3, 2014 at 8:45 pm
They will biopsy the lymph nodes based on what the likely path of drainage from the site of the primary melanoma could be… they will only remove a few lymph nodes. The dye only shows the potential path and does not mean that the melanoma has actually spread to any lymph node. In my case, it had not spread at that time.
The injection of the radioactive dye will not be done under anasthesia. It is a series of 5-6 injections if I remember correctly around the perimeter of the primary melanoma site. It did sting, but it was not terrible. If you are nervous about it, they might be able to give you something to take the edge off. It takes 30-45 minutes or so for them to locate the nodes.
The surgery (both SLNB and WLE) will come shortly thereafter and you will be under general anasthesia. As such, you will feel nothing. It is outpatient surgery so you will go home the same day. Your arm will be heavily bandaged where they did the WLE, especially if you require a graft as I did. For me, they took the graft from the same arm, but they will sometimes take it from your thigh.
Now for the recovery… I can honestly say that the SLNB recovery was a piece of cake. Incision under the armpit closed with surgical glue. Little stiff for a few weeks, but not much pain at all. Skin graft was a tougher recovery. The bandages had to stay in place for several weeks as the graft healed. Activity during that time was limited. I worked full time but typing did cause my arm to swell. I admit that the scar was nasty and that when they removed the bandages for the first time, I was a little depressed. It looks like a baby shark took a bite out of my arm. They did send me to "wound therapy" for a couple months to work on reducing the scar and ensuring full function… it was worth it. In hindsight, it was a blip on the radar and life returned to normal in a couple months – at that time, you will have unrestricted activity.
I was not given any special diet guidance, but they did recommend keeping out of the sun as much as possible – however, I am not one to believe that diet can cure cancer and I am pretty sure that excessive sun exposure is not what caused my melanoma.
I wish I could say that was the end of my melanoma journey, but it was not. I progressed to stage IV recently, but that will not stop me. I still feel great, work full time, exercise, and live.
Kevin
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- April 3, 2014 at 1:23 am
Thank you so much for this information Kevin. You told me that I will be going through exactly what my dermatologist told me while I was in shock so as a result I didn't hear or comprehend it very well at all at that time. He said that when I see the melanoma specialist up in San Francisco I will be undergoing a WLE to remove margins around the melanoma to check that it has not spread and so that they can get it all out, and that they will give me multiple injections around the melanoma with a radioactive and/or blue dye which they will trace the path of to the nearest lymph nodes to see if the melanoma has metastasized to my lymph nodes. He said that they have found that chemotherapy and interferon does not do any good for people with melanoma cancer, and just makes them sick, so it is unlikely that I will have either one given to me. I actually was glad to hear that because my father-in-law had renal cancer and at one point was given interferon. It made him the sickest he had ever been in his life. He thought that it, and not the renal cancer, was going to kill him. It didn't, but eventually the renal cancer did when it spread to his lungs. When he was diagnosed he was told he would only live another 6 months to one year. He did all kinds of untested, and what some consider crazy things like taking shark cartilege and other things. As a result he remained alive and relatively healthy for 7 more years and was able to travel and do all the things he had always wanted to do, but hadn't yet done.
Is it customary for them to also do lymph node biopsies before the radioactive/blue dye results come in showing that it has moved up to the lymph nodes? Also, is it probable that they will put me under a general asethetic when they do the WLE and radioactive/blue dye testing, and/or SLNB? Is having this done painful? How much pain were you in and how were you restricted afterwards? How long did it take you to recover? Were you left with bad scars? Did they also put you on any medication, creams, ointments,etc. to try to eliminate the melanoma? Did they recommend that you eat certain things, and not others, and do certain things, but not others (besides being in the sun of course)? And most importantly, was that the last surgery you had to have because they got rid of all the cancer, and are you now cancer free and completely recovered (I certainly hope so)? I may have more questions to ask and will PM you if I do, and feel free to PM me with the answers if you would prefer to do so.
Fortunately I will be seeing a highly rated melanoma specialist after all of my test results are in. Luckily my dermatologist's assistant called me today and told me that my blood tests (liver panel, blood cell count, and LDH), and my chest x-rays were all perfectly normal and showed no signs of cancer. Even though I know it is unlikely, I keep hoping that perhaps the lab person who viewed my biopsy was mistaken and what has now been identified as a melanoma, but that everyone initially thought was just a blister or basal cell carcinoma, will actually turn out to be just a basal cell carcinoma and not a melanoma. I also hope and pray that if it is a melanoma it will not have spread anywhere else even though it has been there for months now.
Once again, thank you so much for writing to me
.
-
- April 1, 2014 at 10:56 pm
I too, had an amelanotic melanoma. It was misdiagnosed for 8 months. It is SOOO frustrating. Not at all what we are told to look for when it comes to melanoma. I am having my complete lymph node dissection tomorrow morning. IIam stage 3, as there was microscopic amounts found in one sentinel lymph node (2 were taken). PET/CT scans were negative. I know it is so difficult, but try to stay calm, and stay OFF of Google. Waiting is so hard, but you are NEVER alone. God bless you <3 -
- April 1, 2014 at 10:56 pm
I too, had an amelanotic melanoma. It was misdiagnosed for 8 months. It is SOOO frustrating. Not at all what we are told to look for when it comes to melanoma. I am having my complete lymph node dissection tomorrow morning. IIam stage 3, as there was microscopic amounts found in one sentinel lymph node (2 were taken). PET/CT scans were negative. I know it is so difficult, but try to stay calm, and stay OFF of Google. Waiting is so hard, but you are NEVER alone. God bless you <3 -
- April 1, 2014 at 10:56 pm
I too, had an amelanotic melanoma. It was misdiagnosed for 8 months. It is SOOO frustrating. Not at all what we are told to look for when it comes to melanoma. I am having my complete lymph node dissection tomorrow morning. IIam stage 3, as there was microscopic amounts found in one sentinel lymph node (2 were taken). PET/CT scans were negative. I know it is so difficult, but try to stay calm, and stay OFF of Google. Waiting is so hard, but you are NEVER alone. God bless you <3 -
- April 1, 2014 at 11:09 pm
Kevin and Kelly have given you excellent advice. I would add one more thing – take someone with you to appointments to take notes and ask questions. You are dealing with the overwhelming emotions of first being diagnosed and can't be expected to take it all in. Breathe…in my opinion you are in the worst part of this process – things will get better.
Fen
(Kelly – good luck tomorrow)
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- April 1, 2014 at 11:09 pm
Kevin and Kelly have given you excellent advice. I would add one more thing – take someone with you to appointments to take notes and ask questions. You are dealing with the overwhelming emotions of first being diagnosed and can't be expected to take it all in. Breathe…in my opinion you are in the worst part of this process – things will get better.
Fen
(Kelly – good luck tomorrow)
-
- April 1, 2014 at 11:09 pm
Kevin and Kelly have given you excellent advice. I would add one more thing – take someone with you to appointments to take notes and ask questions. You are dealing with the overwhelming emotions of first being diagnosed and can't be expected to take it all in. Breathe…in my opinion you are in the worst part of this process – things will get better.
Fen
(Kelly – good luck tomorrow)
-
- April 2, 2014 at 3:16 am
Thank you Fen! -
- April 2, 2014 at 3:16 am
Thank you Fen! -
- April 2, 2014 at 3:16 am
Thank you Fen! -
- April 3, 2014 at 1:53 am
Yes, thank you very much Fen. My husband will be going with me to all of my appointments now to take in what I may miss, and ask any questions I may not think of. I am meditating, visualizing, and manifesting that I will be perfectly fine and healthier than ever once this is all done. I have never been a hypochondriac. I am actually the complete opposite. I tend to ignore health problems. I have now learned my lesson the hard way and will be attentive to anything that seems to be uncommon in, and on, my body from now on.
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- April 3, 2014 at 1:53 am
Yes, thank you very much Fen. My husband will be going with me to all of my appointments now to take in what I may miss, and ask any questions I may not think of. I am meditating, visualizing, and manifesting that I will be perfectly fine and healthier than ever once this is all done. I have never been a hypochondriac. I am actually the complete opposite. I tend to ignore health problems. I have now learned my lesson the hard way and will be attentive to anything that seems to be uncommon in, and on, my body from now on.
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- April 3, 2014 at 1:53 am
Yes, thank you very much Fen. My husband will be going with me to all of my appointments now to take in what I may miss, and ask any questions I may not think of. I am meditating, visualizing, and manifesting that I will be perfectly fine and healthier than ever once this is all done. I have never been a hypochondriac. I am actually the complete opposite. I tend to ignore health problems. I have now learned my lesson the hard way and will be attentive to anything that seems to be uncommon in, and on, my body from now on.
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- April 2, 2014 at 3:30 am
Hello Jazzygirl,
I too was diagnosed with a 3.2mm Amelanotic Nodular Melanoma in December of 2012. If you would like to review my profile you can see what treatments and results were done in my case which may help you navigate this really scary time.
My case also may give you some hope in knowing that although the doctors can at times seem a bit dismal there are good results, so hang in there. I too was very scared and honestly in disbelief at the time of my diagnosis. It seemed like it was happening to someone else even though I knew when I met with the various doctors they were talking about me! Like you, I thought melanoma was supposed to be "black and nasty looking" not a pink raised bump.
I know it's hard to believe right now but the emotions do get better. For me the worry hasn't gone away completely but it's not consuming every hour of everyday like it was before. Another melanoma patient told me when I was first diagnosed that he got through it by trying not to overly worry about it until he was faced with actual results that warranted the worry. Basically he would attack the "beast" at whatever level he needed to but until he was told what he was dealing with he tried to stay calm. Easier said than done I know, but his mindset and advice did help me at the time.
Take care.
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- April 2, 2014 at 3:30 am
Hello Jazzygirl,
I too was diagnosed with a 3.2mm Amelanotic Nodular Melanoma in December of 2012. If you would like to review my profile you can see what treatments and results were done in my case which may help you navigate this really scary time.
My case also may give you some hope in knowing that although the doctors can at times seem a bit dismal there are good results, so hang in there. I too was very scared and honestly in disbelief at the time of my diagnosis. It seemed like it was happening to someone else even though I knew when I met with the various doctors they were talking about me! Like you, I thought melanoma was supposed to be "black and nasty looking" not a pink raised bump.
I know it's hard to believe right now but the emotions do get better. For me the worry hasn't gone away completely but it's not consuming every hour of everyday like it was before. Another melanoma patient told me when I was first diagnosed that he got through it by trying not to overly worry about it until he was faced with actual results that warranted the worry. Basically he would attack the "beast" at whatever level he needed to but until he was told what he was dealing with he tried to stay calm. Easier said than done I know, but his mindset and advice did help me at the time.
Take care.
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- April 2, 2014 at 3:30 am
Hello Jazzygirl,
I too was diagnosed with a 3.2mm Amelanotic Nodular Melanoma in December of 2012. If you would like to review my profile you can see what treatments and results were done in my case which may help you navigate this really scary time.
My case also may give you some hope in knowing that although the doctors can at times seem a bit dismal there are good results, so hang in there. I too was very scared and honestly in disbelief at the time of my diagnosis. It seemed like it was happening to someone else even though I knew when I met with the various doctors they were talking about me! Like you, I thought melanoma was supposed to be "black and nasty looking" not a pink raised bump.
I know it's hard to believe right now but the emotions do get better. For me the worry hasn't gone away completely but it's not consuming every hour of everyday like it was before. Another melanoma patient told me when I was first diagnosed that he got through it by trying not to overly worry about it until he was faced with actual results that warranted the worry. Basically he would attack the "beast" at whatever level he needed to but until he was told what he was dealing with he tried to stay calm. Easier said than done I know, but his mindset and advice did help me at the time.
Take care.
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- April 3, 2014 at 2:03 am
Thanks for your response. I will take a look at your profile for sure. Like you, it almost seems like they are giving me information about someone else when it is directed at me, but it still terrifies me when it finally hits home. I have not had serious health problems (except for having to have two cervical discs removed after they caused a spinal cord injury which was once again something that just struck me hard out of the blue with no warning signs whatsoever).
Because I feel and look fine, I just can't seem to believe that there is something that is so serious wrong with me. My husband said I should start taking it more seriously than I seem to. It tends to just hit me hard and deep in the shower so that is where I have the most severe anxiety attacks and start to shake and cry. By the time I get out it has passed so no one sees it. I have been watching TV far more than I usually do just to take my mind away from thinking about the melanoma and what I will be going through and feeling so terrified. I just hope it will be over and done with quickly and easily before I start being constantly worried and terrified.
jazzygal
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- April 3, 2014 at 2:03 am
Thanks for your response. I will take a look at your profile for sure. Like you, it almost seems like they are giving me information about someone else when it is directed at me, but it still terrifies me when it finally hits home. I have not had serious health problems (except for having to have two cervical discs removed after they caused a spinal cord injury which was once again something that just struck me hard out of the blue with no warning signs whatsoever).
Because I feel and look fine, I just can't seem to believe that there is something that is so serious wrong with me. My husband said I should start taking it more seriously than I seem to. It tends to just hit me hard and deep in the shower so that is where I have the most severe anxiety attacks and start to shake and cry. By the time I get out it has passed so no one sees it. I have been watching TV far more than I usually do just to take my mind away from thinking about the melanoma and what I will be going through and feeling so terrified. I just hope it will be over and done with quickly and easily before I start being constantly worried and terrified.
jazzygal
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- April 3, 2014 at 2:03 am
Thanks for your response. I will take a look at your profile for sure. Like you, it almost seems like they are giving me information about someone else when it is directed at me, but it still terrifies me when it finally hits home. I have not had serious health problems (except for having to have two cervical discs removed after they caused a spinal cord injury which was once again something that just struck me hard out of the blue with no warning signs whatsoever).
Because I feel and look fine, I just can't seem to believe that there is something that is so serious wrong with me. My husband said I should start taking it more seriously than I seem to. It tends to just hit me hard and deep in the shower so that is where I have the most severe anxiety attacks and start to shake and cry. By the time I get out it has passed so no one sees it. I have been watching TV far more than I usually do just to take my mind away from thinking about the melanoma and what I will be going through and feeling so terrified. I just hope it will be over and done with quickly and easily before I start being constantly worried and terrified.
jazzygal
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- April 2, 2014 at 12:38 pm
Hi, sorry to welcome you here to MPIP. My husband's story is similar to yours, though I don't remember anyone ever saying "amelanotic" at the time. And, more recently our oncologist wouldn't confirm the "nodular" part. Maybe, if this were happening today rather than two years ago they would confirm that but at the time it was first diagnosed as metastatic melanoma and then melanoma of unknown primary. Like a cyst – deep and messy, no evidence on the skin.
One thing I've noted about melanoma is that the first diagnosis is sometimes not accurate because the specialists don't yet have all the information. The lesson in that is: get to a melanoma specialist (would yours be at UCSF? – that's a good place!) and give them time to gather all the information and study it. In the meantime, don't lose hope – many folks are here many years after diagnosis and still fighting, some with no evidence of disease at this point.
Meanwhile, there's one more piece of advice I would offer – begin gathering copies of all that information yourself. Get a copy of the pathology report (and, by the way, post it on your profile so we have a better idea what you might be dealing with). Get in the habit of asking for copies of every study that is done – most if not all hospitals will prepare a disk, which you can then take to your next appointment just in case other forms of communication with your health care team are slow or break down. This is particularly important when consulting with someone for the first time.
It was hard for me to bring myself back into reality after the news hit us, so I won't be surprised if you think that being organized about this is more than you can do. Try your best to continue eating – a healthy diet! – and do what you need to do to get some sleep. You will need your strength in the coming weeks.
Please come back to this forum and let us know how you are doing. We'll try to help with what information and analysis we have to share, and we'll offer our support as you go through this.
Sending healing thoughts your way —
Hazel
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- April 2, 2014 at 12:38 pm
Hi, sorry to welcome you here to MPIP. My husband's story is similar to yours, though I don't remember anyone ever saying "amelanotic" at the time. And, more recently our oncologist wouldn't confirm the "nodular" part. Maybe, if this were happening today rather than two years ago they would confirm that but at the time it was first diagnosed as metastatic melanoma and then melanoma of unknown primary. Like a cyst – deep and messy, no evidence on the skin.
One thing I've noted about melanoma is that the first diagnosis is sometimes not accurate because the specialists don't yet have all the information. The lesson in that is: get to a melanoma specialist (would yours be at UCSF? – that's a good place!) and give them time to gather all the information and study it. In the meantime, don't lose hope – many folks are here many years after diagnosis and still fighting, some with no evidence of disease at this point.
Meanwhile, there's one more piece of advice I would offer – begin gathering copies of all that information yourself. Get a copy of the pathology report (and, by the way, post it on your profile so we have a better idea what you might be dealing with). Get in the habit of asking for copies of every study that is done – most if not all hospitals will prepare a disk, which you can then take to your next appointment just in case other forms of communication with your health care team are slow or break down. This is particularly important when consulting with someone for the first time.
It was hard for me to bring myself back into reality after the news hit us, so I won't be surprised if you think that being organized about this is more than you can do. Try your best to continue eating – a healthy diet! – and do what you need to do to get some sleep. You will need your strength in the coming weeks.
Please come back to this forum and let us know how you are doing. We'll try to help with what information and analysis we have to share, and we'll offer our support as you go through this.
Sending healing thoughts your way —
Hazel
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- April 2, 2014 at 12:38 pm
Hi, sorry to welcome you here to MPIP. My husband's story is similar to yours, though I don't remember anyone ever saying "amelanotic" at the time. And, more recently our oncologist wouldn't confirm the "nodular" part. Maybe, if this were happening today rather than two years ago they would confirm that but at the time it was first diagnosed as metastatic melanoma and then melanoma of unknown primary. Like a cyst – deep and messy, no evidence on the skin.
One thing I've noted about melanoma is that the first diagnosis is sometimes not accurate because the specialists don't yet have all the information. The lesson in that is: get to a melanoma specialist (would yours be at UCSF? – that's a good place!) and give them time to gather all the information and study it. In the meantime, don't lose hope – many folks are here many years after diagnosis and still fighting, some with no evidence of disease at this point.
Meanwhile, there's one more piece of advice I would offer – begin gathering copies of all that information yourself. Get a copy of the pathology report (and, by the way, post it on your profile so we have a better idea what you might be dealing with). Get in the habit of asking for copies of every study that is done – most if not all hospitals will prepare a disk, which you can then take to your next appointment just in case other forms of communication with your health care team are slow or break down. This is particularly important when consulting with someone for the first time.
It was hard for me to bring myself back into reality after the news hit us, so I won't be surprised if you think that being organized about this is more than you can do. Try your best to continue eating – a healthy diet! – and do what you need to do to get some sleep. You will need your strength in the coming weeks.
Please come back to this forum and let us know how you are doing. We'll try to help with what information and analysis we have to share, and we'll offer our support as you go through this.
Sending healing thoughts your way —
Hazel
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- April 3, 2014 at 12:41 am
Thank you for your info. and healing thoughts. My dermatologist provided me with a copy of the pathology report when he told me I have this melanoma. I will post a copy of it for you to see. Fortunately I am able to see all of my test results within 3-4 days on my PAMF website, and as you suggested I will ask for copies of the results when I don't go to a PAMF provider (like the PET scan I will hopefully be getting on Friday – I am waiting for approval from my insurance). Its also fortunate that my husband has now agreed to be going with me to all of my appointments to take in information I may not digest, and ask questions I may not think of (thanks again for this suggestion).
I got a call from my dermatologist's assistant today and she said she had good news. The chest x-ray and blood tests (liver panel, blood cell counts, and LDH) that I had done yesterday were all completely normal and showed no signs of malignancy. But then she went on to tell me that they don't discount that there may be cancer in other places besides my forearm which is why the other tests need to be done. She is very sweet and has also recommended that I just not worry and keep a positive outlook even though its hard to do.
The melanoma specialists I will be seeing aren't at UCSF, although one of them was a professor at UCSF for a while. I will be seeing Mohammed Kashani-Sabet, M.D., and/or his colleagues at Sutter Pacific Medical Foundation in San Francisco as soon all the test results are in. I was told that they will be doing the exact things that Kevin stated were done to him. I just hope it will stop all the evil, destructive melanoma cells in their tracks and put me completely back to normal. Fortunately I have always eaten a very healthy diet. I am a vegetarian and I only eat organic food to avoid pesticides, GMOs and other things from getting into my body. I also don't like sweets so even though almost everyone else in my family, and my husband who isn't even overweight, has, or had diabetes and heart disease I don't. My doctor prescribed Ativan to help me deal with my anxiety and stay calm, and Lunesta to ensure that I get some sleep. These are helping me to do so. I also practice meditation, manifesting, and I have started visualizing little pac men eating up the cancer cells, and little tornados going into the area on my forearm where the melanoma was found and whirling around and pulling every bit of it out – LOL. I also have my fingers and toes crossed that everything will be just fine.
jazzygal
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- April 3, 2014 at 12:41 am
Thank you for your info. and healing thoughts. My dermatologist provided me with a copy of the pathology report when he told me I have this melanoma. I will post a copy of it for you to see. Fortunately I am able to see all of my test results within 3-4 days on my PAMF website, and as you suggested I will ask for copies of the results when I don't go to a PAMF provider (like the PET scan I will hopefully be getting on Friday – I am waiting for approval from my insurance). Its also fortunate that my husband has now agreed to be going with me to all of my appointments to take in information I may not digest, and ask questions I may not think of (thanks again for this suggestion).
I got a call from my dermatologist's assistant today and she said she had good news. The chest x-ray and blood tests (liver panel, blood cell counts, and LDH) that I had done yesterday were all completely normal and showed no signs of malignancy. But then she went on to tell me that they don't discount that there may be cancer in other places besides my forearm which is why the other tests need to be done. She is very sweet and has also recommended that I just not worry and keep a positive outlook even though its hard to do.
The melanoma specialists I will be seeing aren't at UCSF, although one of them was a professor at UCSF for a while. I will be seeing Mohammed Kashani-Sabet, M.D., and/or his colleagues at Sutter Pacific Medical Foundation in San Francisco as soon all the test results are in. I was told that they will be doing the exact things that Kevin stated were done to him. I just hope it will stop all the evil, destructive melanoma cells in their tracks and put me completely back to normal. Fortunately I have always eaten a very healthy diet. I am a vegetarian and I only eat organic food to avoid pesticides, GMOs and other things from getting into my body. I also don't like sweets so even though almost everyone else in my family, and my husband who isn't even overweight, has, or had diabetes and heart disease I don't. My doctor prescribed Ativan to help me deal with my anxiety and stay calm, and Lunesta to ensure that I get some sleep. These are helping me to do so. I also practice meditation, manifesting, and I have started visualizing little pac men eating up the cancer cells, and little tornados going into the area on my forearm where the melanoma was found and whirling around and pulling every bit of it out – LOL. I also have my fingers and toes crossed that everything will be just fine.
jazzygal
-
- April 3, 2014 at 12:41 am
Thank you for your info. and healing thoughts. My dermatologist provided me with a copy of the pathology report when he told me I have this melanoma. I will post a copy of it for you to see. Fortunately I am able to see all of my test results within 3-4 days on my PAMF website, and as you suggested I will ask for copies of the results when I don't go to a PAMF provider (like the PET scan I will hopefully be getting on Friday – I am waiting for approval from my insurance). Its also fortunate that my husband has now agreed to be going with me to all of my appointments to take in information I may not digest, and ask questions I may not think of (thanks again for this suggestion).
I got a call from my dermatologist's assistant today and she said she had good news. The chest x-ray and blood tests (liver panel, blood cell counts, and LDH) that I had done yesterday were all completely normal and showed no signs of malignancy. But then she went on to tell me that they don't discount that there may be cancer in other places besides my forearm which is why the other tests need to be done. She is very sweet and has also recommended that I just not worry and keep a positive outlook even though its hard to do.
The melanoma specialists I will be seeing aren't at UCSF, although one of them was a professor at UCSF for a while. I will be seeing Mohammed Kashani-Sabet, M.D., and/or his colleagues at Sutter Pacific Medical Foundation in San Francisco as soon all the test results are in. I was told that they will be doing the exact things that Kevin stated were done to him. I just hope it will stop all the evil, destructive melanoma cells in their tracks and put me completely back to normal. Fortunately I have always eaten a very healthy diet. I am a vegetarian and I only eat organic food to avoid pesticides, GMOs and other things from getting into my body. I also don't like sweets so even though almost everyone else in my family, and my husband who isn't even overweight, has, or had diabetes and heart disease I don't. My doctor prescribed Ativan to help me deal with my anxiety and stay calm, and Lunesta to ensure that I get some sleep. These are helping me to do so. I also practice meditation, manifesting, and I have started visualizing little pac men eating up the cancer cells, and little tornados going into the area on my forearm where the melanoma was found and whirling around and pulling every bit of it out – LOL. I also have my fingers and toes crossed that everything will be just fine.
jazzygal
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Tagged: cutaneous melanoma
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