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- This topic has 28 replies, 6 voices, and was last updated 14 years, 1 month ago by
kylez.
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- June 10, 2011 at 9:15 pm
Yesterday I found out that the mole on my back was a malignant melanoma. I knew nothing about this disease until I spent the last 5 hours reading and researching. Based on the pathology report the doctor told me that it is very unlikely that the cancer has spread. However, he wants me to come back on July 11th to take some more flesh from the orginal site of the mole.
Yesterday I found out that the mole on my back was a malignant melanoma. I knew nothing about this disease until I spent the last 5 hours reading and researching. Based on the pathology report the doctor told me that it is very unlikely that the cancer has spread. However, he wants me to come back on July 11th to take some more flesh from the orginal site of the mole.
Does this sound like the prudent thing to do? Or should more be done? I did mention to him that I have been achey and tired and have notices some soreness under my arms and inside my legs. After what I have read today it sound like this could be more serious.
Any feedback would be appreciated.
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- June 10, 2011 at 9:43 pm
Hi,
Sorry you've gotten this diagnosis but you've come to the right place. I'm glad you said you told your dr about your aches & pains before you did your research…I know you aren't experiencing phantom symptoms.
What kind of dr are you seeing? Was this a dermatologist, your regular general doc? I doubt this was a melanoma specialist and that's who I would recommend you see since you have your diagnosis.
http://www.aimatmelanoma.org/aim-for-answers/finding-the-right-doctor.html
This site will help you find one in your area. It doesn't list every one (it doesn't list mine), but it's a great resource.
Actually, a mel spec will hopefully see you before July 11th (but maybe not) but while he/she will take more they will also do tests to see where it has spread if it has. This is NOT something that should be allowed to become a long drawn out process like you're currently on track for. And when you call for that appointment, tell them what you've told us about the soreness & tiredness. Hopefully all that will prove to be nothing but nerves while waiting for your path results.
But I do advise that you get to someone who will take this more seriously and work a little faster and more comprehensively. A mel specialist is the ideal choice.
Lord, in Your mercy, open doors. Thank You. Amen and Amen.
Grace and peace,
Carol
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- June 10, 2011 at 9:43 pm
Hi,
Sorry you've gotten this diagnosis but you've come to the right place. I'm glad you said you told your dr about your aches & pains before you did your research…I know you aren't experiencing phantom symptoms.
What kind of dr are you seeing? Was this a dermatologist, your regular general doc? I doubt this was a melanoma specialist and that's who I would recommend you see since you have your diagnosis.
http://www.aimatmelanoma.org/aim-for-answers/finding-the-right-doctor.html
This site will help you find one in your area. It doesn't list every one (it doesn't list mine), but it's a great resource.
Actually, a mel spec will hopefully see you before July 11th (but maybe not) but while he/she will take more they will also do tests to see where it has spread if it has. This is NOT something that should be allowed to become a long drawn out process like you're currently on track for. And when you call for that appointment, tell them what you've told us about the soreness & tiredness. Hopefully all that will prove to be nothing but nerves while waiting for your path results.
But I do advise that you get to someone who will take this more seriously and work a little faster and more comprehensively. A mel specialist is the ideal choice.
Lord, in Your mercy, open doors. Thank You. Amen and Amen.
Grace and peace,
Carol
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- June 10, 2011 at 9:54 pm
The doctor I am seeing is my GP. I have a call into his office to discuss the course of treatment further. I have no information about the thickness of the lesion, the mitotic rate, etc.
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- June 10, 2011 at 10:02 pm
I would definitely seek out a melanoma specialist. Your GP may be absolutely right but there is no point in taking any chances. A melanoma specialist is really the key to making sure this disease is receiving the attention and treatment it needs. It's a tricky one, and you want to get the very best care possible.
Lori
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- June 10, 2011 at 10:02 pm
I would definitely seek out a melanoma specialist. Your GP may be absolutely right but there is no point in taking any chances. A melanoma specialist is really the key to making sure this disease is receiving the attention and treatment it needs. It's a tricky one, and you want to get the very best care possible.
Lori
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- June 10, 2011 at 10:10 pm
Lori's right, Guy. You have the main piece of info you need to move away from your GP for this and on to a specialist. You had a mole removed with malignant melanoma in it. Right now that's the crucial info you need. Let a specialist handle it from here and keep a check on you. Also, I recommend that you seek a dermatologist that is at least knowledgeable of melanoma (there are derm mel specs) to be vigilant for other mel moles.
http://letsgivethanks.blogspot.com/2010/12/big-c-is-not-candy.html
Grace and peace,
Carol
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- June 10, 2011 at 10:10 pm
Lori's right, Guy. You have the main piece of info you need to move away from your GP for this and on to a specialist. You had a mole removed with malignant melanoma in it. Right now that's the crucial info you need. Let a specialist handle it from here and keep a check on you. Also, I recommend that you seek a dermatologist that is at least knowledgeable of melanoma (there are derm mel specs) to be vigilant for other mel moles.
http://letsgivethanks.blogspot.com/2010/12/big-c-is-not-candy.html
Grace and peace,
Carol
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- June 10, 2011 at 11:17 pm
The first thing you need to do on Monday is to stop by your GP's office and ask for a copy of the pathology report. Without hearing the Breslow depth it is really had to give you advice.
Normal procedures is to take a wider excision. Even if the mole came back as severly dysplastic they would still advise that. If the mole is more than 1mm or has a high miotic rate then they would also need to do a SNB (sentinal node biopsy). That's when they inject dye into the lesion and it goes to the first lymph node. This must be done before the wide excision.
Things not to worry about: If the report gives you a Clarks level. Do not mix that up with staging! A clark's level 4 is not the same as stage IV.
While reading and gaining information don't get overwhelmed. Most on this board are at a point of advanced disease while most others are off living life. Melanoma is scary but hopefully yours has been caught early.
Do a search for Janner. She has attached to her signature a website she has made with lots of information for those just diagnosed. She also is stage 1 and can help you put things in a better perspective. She visits this site often and will most likely respond to you.
I would suggest a qualified dermatologist or surgeon to do the wide excision.
Please post the information from the pathology report so we can give you more info.
Try not to dwell on it this weekend until you have the info you need.
Linda
dealing with mel since 1979
stage IV since 06
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- June 10, 2011 at 11:17 pm
The first thing you need to do on Monday is to stop by your GP's office and ask for a copy of the pathology report. Without hearing the Breslow depth it is really had to give you advice.
Normal procedures is to take a wider excision. Even if the mole came back as severly dysplastic they would still advise that. If the mole is more than 1mm or has a high miotic rate then they would also need to do a SNB (sentinal node biopsy). That's when they inject dye into the lesion and it goes to the first lymph node. This must be done before the wide excision.
Things not to worry about: If the report gives you a Clarks level. Do not mix that up with staging! A clark's level 4 is not the same as stage IV.
While reading and gaining information don't get overwhelmed. Most on this board are at a point of advanced disease while most others are off living life. Melanoma is scary but hopefully yours has been caught early.
Do a search for Janner. She has attached to her signature a website she has made with lots of information for those just diagnosed. She also is stage 1 and can help you put things in a better perspective. She visits this site often and will most likely respond to you.
I would suggest a qualified dermatologist or surgeon to do the wide excision.
Please post the information from the pathology report so we can give you more info.
Try not to dwell on it this weekend until you have the info you need.
Linda
dealing with mel since 1979
stage IV since 06
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- June 11, 2011 at 1:53 am
my understanding like others is that the right next action here is a wide excision with sentinel lymph node biopsy. it's an involved procedure. get away from your GP as fast as you can and get referred to a melanoma clinic!
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- June 13, 2011 at 7:35 pm
Thanks everyone for all the feedback. I have called the Melanoma Center at Fletcher Allan Hospital in Burlington Vermont. I have also spoken again with my GP. He still feels that the wide local excision can be done safely and efficiently in his office, however he understands if I want to have this done elsewhere. Here is what the Pathology report had to say:
Excisional Biopsy: Malignant Melanoma, Invasive (AJCC:pT1a, pNX).
Clark Level:ll – Type: Superficial Spreading
Breslow Thickness: .4mm (that is point 4, not 4)
Mitoses: Less than 1/MM SQ
Tumor infiltrating lymphocytes; not seen
Regression: Not Seen
Vascular invasion: not seen
Perineural invasion: not seen
Ulceration: not seen
Associated Nevus: Adjacent compound Melanocytic nevus is present.
Margins: Margins contain adjacent compound nevus. Malignant Melanoma extends to within 2.5mm of the peripheral margin. Deep margin is free.So the question is this. Based on this Pathology is it neccessary to seek a specialist or continue to let my GP handle the wide local excision (which is the next planned step)?
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- June 13, 2011 at 7:35 pm
Thanks everyone for all the feedback. I have called the Melanoma Center at Fletcher Allan Hospital in Burlington Vermont. I have also spoken again with my GP. He still feels that the wide local excision can be done safely and efficiently in his office, however he understands if I want to have this done elsewhere. Here is what the Pathology report had to say:
Excisional Biopsy: Malignant Melanoma, Invasive (AJCC:pT1a, pNX).
Clark Level:ll – Type: Superficial Spreading
Breslow Thickness: .4mm (that is point 4, not 4)
Mitoses: Less than 1/MM SQ
Tumor infiltrating lymphocytes; not seen
Regression: Not Seen
Vascular invasion: not seen
Perineural invasion: not seen
Ulceration: not seen
Associated Nevus: Adjacent compound Melanocytic nevus is present.
Margins: Margins contain adjacent compound nevus. Malignant Melanoma extends to within 2.5mm of the peripheral margin. Deep margin is free.So the question is this. Based on this Pathology is it neccessary to seek a specialist or continue to let my GP handle the wide local excision (which is the next planned step)?
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- June 14, 2011 at 2:37 am
Go with the pros. Your life is worth it. My mother lives in Lebanon NH, where Dartmouth-Hitchcock is. That's probably the # place you should be going to.
http://cancer.dartmouth.edu/pf/cancer_care/melanoma_skin.html
I've heard too many horror stories about GPs who think they know what they're doing and don't. Is your GP going to do a sentinel lymph node biopsy (done with radioactive isotope dye)? Doesn't sound like it. That's how they can stage it to II or III if necessary. Without that it won't be properly staged, and may not get the proper follow-on treatment options at your disposal. What pathologist is the GP going to use?
Make an appt with Darthmouth (or the Burlington folks), and get their point of view on why you should be seeing them and not your GP. Then make your choice. Melanoma is a specialty, not general practice. Dartmouth-Hitchcock or the Burlington clinic will have a much higher standard of practice for melanoma, and will do things properly. Dartmouth especially because it's an NCI designated cancer research center. I go to an NCI designated center in my state.
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- June 14, 2011 at 12:46 pm
Thanks again for the feedback. I have made an appointment with Fletcher Allen Medical Center in Burlington. I will be meeting with Dr. Ted James, a surgical oncologist who specializes in melanoma. He is part of a team of doctors who work in a specialized unit know as the Melanoma Multidisciplinary Clinic. The Doc is also a professor at the Universtiy of Vermont Medical School. Appointment is for June 23 at 10am.
I am very grateful for all the advice I have received from so many concerned people. As a Pastor I see this as answered prayer. If it were not for so many friends and the people on this website urging me to see a specialist I most likely would not have even given this disease a second thought. Now the prayers is that the melanoma has not spread and the initial excision has removed all the cancer. Also, I have at least 100 moles on my torso, all of them varying sizes and shapes and colors, I imagine this is going to be quite a challenge to monitor.
"Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge Him, and He will make straight your paths. Be not wise in your own eyes; fear the Lord, and turn away from evil. It will be healing to your flesh and refreshment to your bones." Proverbs 3:5-8
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- June 14, 2011 at 12:55 pm
Guy,
I'm a Methodist pastor and have seen the Lord's hand all through my journey, even in my stupidity, stubbornness, panic & rebellion against this. Look for the blessings and use this. I was diagnosed stage 3b in late 2008 and have remained there and I find telling my story verbally and in blog, doing the Melanoma Prayer Center, being an advocate, helps take the bite out of this, redeems it and gives it a sense of purpose that can be used for the good.
Lord, in Your mercy, bless Guy on this journey. Open doors that need opening, close those that are in Your way, and use this in his life to help beat the beast in others. Thank You. Amen.
Grace and peace,
Carol
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- July 22, 2011 at 9:10 pm
I wanted to thank everyone again for the important feedback you all provided. I had a local wide excision done by a surgical oncologist at Fletcher Allen health care in Burlington Vermont. The day after my surgery he went on vacation for 3 weeks, so we have not yet followed up. However, the pathology report was sent to my GP and the surgeons office did call to let me know that everything looked good.
I had the stiches removed on Wednesday of this week by a doctor I had not seen before in my GP's office. After looking at the pathology and taking a look at my back he was very concerned. He said I have something called dyplastic nevi syndrome. It was his opinion that at least 6 more moles on my back should be biopsied. I have an appointment to follow up with the surgeon on August 11th. I am also trying to schedule an appointment to see a dermatologist who specializes in melanoma.
The Doc on Wednesday really put a bit of a scare into me, he kept stressing to me the seriousness of this cancer and the need for aggressive follow-up.
I would appreciate any feedback. Also, I have requested a copy of the latest pathology report, I have not seen this yet.
Thanks for the help.
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- July 22, 2011 at 9:10 pm
I wanted to thank everyone again for the important feedback you all provided. I had a local wide excision done by a surgical oncologist at Fletcher Allen health care in Burlington Vermont. The day after my surgery he went on vacation for 3 weeks, so we have not yet followed up. However, the pathology report was sent to my GP and the surgeons office did call to let me know that everything looked good.
I had the stiches removed on Wednesday of this week by a doctor I had not seen before in my GP's office. After looking at the pathology and taking a look at my back he was very concerned. He said I have something called dyplastic nevi syndrome. It was his opinion that at least 6 more moles on my back should be biopsied. I have an appointment to follow up with the surgeon on August 11th. I am also trying to schedule an appointment to see a dermatologist who specializes in melanoma.
The Doc on Wednesday really put a bit of a scare into me, he kept stressing to me the seriousness of this cancer and the need for aggressive follow-up.
I would appreciate any feedback. Also, I have requested a copy of the latest pathology report, I have not seen this yet.
Thanks for the help.
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- July 26, 2011 at 12:14 am
Hi. Thanks for the update. Glad everything looks good, that's great news.
I don't know anything about dyplastic nevi syndrome. But it sounds like they need regular monitoring: http://en.wikipedia.org/wiki/Dysplastic_nevus
Since my earlier replies above I've read at least one person mention that SNL biopsies perhaps aren't always done for stage I spots if they're, say, very shallow? So was yours caught really early (since you don't mention SNL biopsy being done)? Did they discuss why that wasn't necessary?
– Kyle
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- July 26, 2011 at 12:14 am
Hi. Thanks for the update. Glad everything looks good, that's great news.
I don't know anything about dyplastic nevi syndrome. But it sounds like they need regular monitoring: http://en.wikipedia.org/wiki/Dysplastic_nevus
Since my earlier replies above I've read at least one person mention that SNL biopsies perhaps aren't always done for stage I spots if they're, say, very shallow? So was yours caught really early (since you don't mention SNL biopsy being done)? Did they discuss why that wasn't necessary?
– Kyle
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- June 14, 2011 at 12:55 pm
Guy,
I'm a Methodist pastor and have seen the Lord's hand all through my journey, even in my stupidity, stubbornness, panic & rebellion against this. Look for the blessings and use this. I was diagnosed stage 3b in late 2008 and have remained there and I find telling my story verbally and in blog, doing the Melanoma Prayer Center, being an advocate, helps take the bite out of this, redeems it and gives it a sense of purpose that can be used for the good.
Lord, in Your mercy, bless Guy on this journey. Open doors that need opening, close those that are in Your way, and use this in his life to help beat the beast in others. Thank You. Amen.
Grace and peace,
Carol
-
- June 14, 2011 at 12:46 pm
Thanks again for the feedback. I have made an appointment with Fletcher Allen Medical Center in Burlington. I will be meeting with Dr. Ted James, a surgical oncologist who specializes in melanoma. He is part of a team of doctors who work in a specialized unit know as the Melanoma Multidisciplinary Clinic. The Doc is also a professor at the Universtiy of Vermont Medical School. Appointment is for June 23 at 10am.
I am very grateful for all the advice I have received from so many concerned people. As a Pastor I see this as answered prayer. If it were not for so many friends and the people on this website urging me to see a specialist I most likely would not have even given this disease a second thought. Now the prayers is that the melanoma has not spread and the initial excision has removed all the cancer. Also, I have at least 100 moles on my torso, all of them varying sizes and shapes and colors, I imagine this is going to be quite a challenge to monitor.
"Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge Him, and He will make straight your paths. Be not wise in your own eyes; fear the Lord, and turn away from evil. It will be healing to your flesh and refreshment to your bones." Proverbs 3:5-8
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- June 14, 2011 at 2:37 am
Go with the pros. Your life is worth it. My mother lives in Lebanon NH, where Dartmouth-Hitchcock is. That's probably the # place you should be going to.
http://cancer.dartmouth.edu/pf/cancer_care/melanoma_skin.html
I've heard too many horror stories about GPs who think they know what they're doing and don't. Is your GP going to do a sentinel lymph node biopsy (done with radioactive isotope dye)? Doesn't sound like it. That's how they can stage it to II or III if necessary. Without that it won't be properly staged, and may not get the proper follow-on treatment options at your disposal. What pathologist is the GP going to use?
Make an appt with Darthmouth (or the Burlington folks), and get their point of view on why you should be seeing them and not your GP. Then make your choice. Melanoma is a specialty, not general practice. Dartmouth-Hitchcock or the Burlington clinic will have a much higher standard of practice for melanoma, and will do things properly. Dartmouth especially because it's an NCI designated cancer research center. I go to an NCI designated center in my state.
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Tagged: cutaneous melanoma
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