› Forums › General Melanoma Community › 107 days and a new melanoma
- This topic has 22 replies, 6 voices, and was last updated 14 years, 3 months ago by
Wilfred.
- Post
-
- August 19, 2011 at 1:22 am
One hundred seven days from the last positive diagnosis, 99 days from the last surgery, and now I have a new melanoma, This is the sixth melanoma on the same ear, five of them in the past 4 years. My friends all tell me that I am an unusual person, but I don't think this is what they were refering to. How common is this? Should this be happening? Every time the pathologists say that the margins are clear. Pretty soon I won't have anything to hang my hearing aid on.
One hundred seven days from the last positive diagnosis, 99 days from the last surgery, and now I have a new melanoma, This is the sixth melanoma on the same ear, five of them in the past 4 years. My friends all tell me that I am an unusual person, but I don't think this is what they were refering to. How common is this? Should this be happening? Every time the pathologists say that the margins are clear. Pretty soon I won't have anything to hang my hearing aid on.
- Replies
-
-
- August 19, 2011 at 2:00 am
Hi, I jusr met a young lady at MD Anderson last week. She had had over 100 tumors on her leg and is on the ONCO vex trial. She is down to 4 tumors and no new ones since she has started the trial.-
- August 19, 2011 at 11:29 am
Sharmon, thanks for your note. My heart goes out to that young lady. My issues are insignificant in comparison. I am just starting to get active in managing my treatment and am starting to look for medications and/or trials that may provide answers. Regards, Wilfred
-
- August 19, 2011 at 11:29 am
Sharmon, thanks for your note. My heart goes out to that young lady. My issues are insignificant in comparison. I am just starting to get active in managing my treatment and am starting to look for medications and/or trials that may provide answers. Regards, Wilfred
-
- August 19, 2011 at 2:37 am
Wilfred, so sorry to hear about your recurrences. It is frustrating. My husband gets intransits on his stump fairly often, and they just keep cutting.
Have you used Aldara?
-
- August 19, 2011 at 2:44 am
So sorry you are having to deal with this again. I wish you well, and will keep you in my prayers. Good luck. Beth 3/B
-
- August 19, 2011 at 11:10 am
Beth, I am scared also; and, like you, I don't give up. I'm glad that you are not having to deal with mm at this time and send my best wishes that things stay that way. I think I am going to look into some trials or medicine. Enjoy your grandchildren as I do mine. Regards, Wilfred
-
- August 19, 2011 at 11:10 am
Beth, I am scared also; and, like you, I don't give up. I'm glad that you are not having to deal with mm at this time and send my best wishes that things stay that way. I think I am going to look into some trials or medicine. Enjoy your grandchildren as I do mine. Regards, Wilfred
-
- August 19, 2011 at 2:49 am
Have they tested any of the tumors for gentic mutation? This must be getting so hard for you and I am sure you are searching for a solution.
Mary
Stage 3
-
- August 19, 2011 at 11:24 am
Mary, thanks for your note. If tests have been done for genetic mutation, I have not been informed. Up until this year I have just let the surgeon, head of Surgical Oncology at Sinai in Baltimore, make all decisions. This year I have started to do some research, read about melanoma and be diligent about paying attention to the signs. This latest was discovered because I thought there was something wrong and would not take no for an answer. The occurance in May really drove me deep into the dark, I fought it, and, now, this new one doesn't bother me so much. It's not understanding the why that is bothering me. I like answers, solutions. I like your quote; I do get back up.
-
- August 19, 2011 at 11:24 am
Mary, thanks for your note. If tests have been done for genetic mutation, I have not been informed. Up until this year I have just let the surgeon, head of Surgical Oncology at Sinai in Baltimore, make all decisions. This year I have started to do some research, read about melanoma and be diligent about paying attention to the signs. This latest was discovered because I thought there was something wrong and would not take no for an answer. The occurance in May really drove me deep into the dark, I fought it, and, now, this new one doesn't bother me so much. It's not understanding the why that is bothering me. I like answers, solutions. I like your quote; I do get back up.
-
- August 20, 2011 at 12:38 am
Okay, lets break it down if you don't mind.
107 days ago was your diagnosis, give me the pathology report please.
Excisional, shave, scrape or punch biopsy?
Any human only has so much ear, so, the same applies for each, was it a excisional, shave, scrape pr [unch biopsy?
Further, to help you, the surgical margins (as written) are important., because if you DID have a melanoma, the margins, would for the most part mean you would not have an ear.
You will not like this, but IF, is all that you say is true, one of three things is happening.
You do not have melanoma.
You do and you have incompetent medical advice.
Or you think you have melanoma , do not ,and are freaked.
The way to clarify this is to post your path report and surgical report for each of your now six melanomas on the same ear.
I'm pretty good at this; but what you are saying doesn't add up.
Your medical providers may not be making things clear for you to understand, or, though I hope not, lack a clue.
More details please !
Cheers,
Charlie S
-
- August 20, 2011 at 12:38 am
Okay, lets break it down if you don't mind.
107 days ago was your diagnosis, give me the pathology report please.
Excisional, shave, scrape or punch biopsy?
Any human only has so much ear, so, the same applies for each, was it a excisional, shave, scrape pr [unch biopsy?
Further, to help you, the surgical margins (as written) are important., because if you DID have a melanoma, the margins, would for the most part mean you would not have an ear.
You will not like this, but IF, is all that you say is true, one of three things is happening.
You do not have melanoma.
You do and you have incompetent medical advice.
Or you think you have melanoma , do not ,and are freaked.
The way to clarify this is to post your path report and surgical report for each of your now six melanomas on the same ear.
I'm pretty good at this; but what you are saying doesn't add up.
Your medical providers may not be making things clear for you to understand, or, though I hope not, lack a clue.
More details please !
Cheers,
Charlie S
-
- August 29, 2011 at 2:36 pm
Charlie, thanks for the reply/comments, I have been sailing for 10 days – the best therapy.
Let me answer your comments/questions in order:
* I do not have copies of all the pathology reports.
* 2mm punch biopsy this time never had a shaveor scrape.
* never had a shave or scrape
* while I understand your thought that the surgeon is not a capable person, he is the head of surgical oncology at Sinai Hospital in Baltimore
* the surgical pathology final report states under the heading Final Diagnosis:
A. Sentinel Lymph Node rght neck:
– One lymph node is negative for metastatic tumor (0/1)
B. Right Partial Pinna:
– Recurrent Melanoma
– The tumor measures 1.2 cm in geatest dimension
– Surgical Margins are negative for tumor
– Actinic Keratosis and Dermal Elastosis
C. Deep Margin Cartilage:
– Negative for tumor
I find it hard to believe that I misunderstand the surgeon's use of the word "melanoma". Six times in 13 years, five times in the last 4 years, I have been told that the biopsy is positive for melanoma.
I do not know what is going on, while I may be upset that there seems to be no rational explanation for these recurrences, I am not freaked out. If these are not melanomas why have labs at Johns Hopkins and Sinai said they were?
Wilfred
-
- August 29, 2011 at 2:36 pm
Charlie, thanks for the reply/comments, I have been sailing for 10 days – the best therapy.
Let me answer your comments/questions in order:
* I do not have copies of all the pathology reports.
* 2mm punch biopsy this time never had a shaveor scrape.
* never had a shave or scrape
* while I understand your thought that the surgeon is not a capable person, he is the head of surgical oncology at Sinai Hospital in Baltimore
* the surgical pathology final report states under the heading Final Diagnosis:
A. Sentinel Lymph Node rght neck:
– One lymph node is negative for metastatic tumor (0/1)
B. Right Partial Pinna:
– Recurrent Melanoma
– The tumor measures 1.2 cm in geatest dimension
– Surgical Margins are negative for tumor
– Actinic Keratosis and Dermal Elastosis
C. Deep Margin Cartilage:
– Negative for tumor
I find it hard to believe that I misunderstand the surgeon's use of the word "melanoma". Six times in 13 years, five times in the last 4 years, I have been told that the biopsy is positive for melanoma.
I do not know what is going on, while I may be upset that there seems to be no rational explanation for these recurrences, I am not freaked out. If these are not melanomas why have labs at Johns Hopkins and Sinai said they were?
Wilfred
- You must be logged in to reply to this topic.