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- This topic has 42 replies, 7 voices, and was last updated 10 years, 3 months ago by
JC.
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- January 24, 2014 at 7:29 am
Hi, all! Just joined and just diagnosed. Normally I'd lurk a bit more before making a new topic (I have read through quite a few threads though), but I'm in sort of an odd place.
I've been diagnosed with nodular melanoma, and I have an appointment at the University of Michigan Melanoma Clinic on Feb 5th (to get a full-body search for melanoma done and to talk with the surgeon for the SNB). But my dermatologist was kind of cagey about my staging; he says we won't know for sure until after the SNB, which is fine. But…well, I'm kind of anxious as I look over my pathology report.
PROCEDURE: Excision
TUMOR SITE: Left scalp
HISTOLOGIC TYPE: Malignant melanoma, nodular type
MAXIMUM TUMOR THICKNESS (BRESLOW THICKNESS): At least 8.5 mm
CLARK'S LEVEL: 4/5
ULCERATION: Absent
PERIPHERAL MARGINS: 1.5 mm
DEEP MARGIN: Extensively involved by melanoma
MITOTIC RATE: <1 /mm2
MICROSATELLITOSIS: Cannot be assessed.
LYMPHOVASCULAR INVASION: Absent
PERINEURAL INVASION: Present
REGRESSION: Absent
PRE-EXISTING NEVUS: Absent
PATHOLOGIC STAGING (pTNM): pT4a pNx pM (not applicable)
If my internet research is correct, pT4a would normally be Stage II, and Dr. Rinek (the dermatologist) said that the mitotic rate was very low, and it's good that there's no ulceration. But this thing was "at least 8.5 mm" when he cut it off my scalp, and in only a couple of months (I first noticed it in November and made the appointment shortly before Christmas, but due to the holidays and some other family obligations, the actual appointment was the 15th of this month; he put a rush on the lab results and I was formally diagnosed on the 16th). So I have this really large, really fast-growing mass on the back of my head where there wasn't anything before…but it doesn't look to be spreading much yet?
Then tonight I found a few very very small moles on my neck. I've had a mole on the back of my neck forever – hasn't changed shape/size/color, so I'm not worried about it – but now there's these three juuuuuust slightly raised dark spots (well, darker than the rest of my skin) that weren't there before, and I'd normally just write them off but I'm really scared about them now.
Basically, I'll be a lot less freaked out when I know exactly how freaked out I should be. Does that make sense? Thanks for any help.
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- January 24, 2014 at 10:30 am
Hello,
I am sorry you are having such a hard time.
Your story reminds me of my husbands story who was also diagnosed with an 8mm nodular melanoma, which was misdiagnosed 2 months before actual excision.
Please don't freak out, it will not help you at all (easy to say, I know). If possible get these spots checked right away. Your dermatologist seems to have experience, so he should be willing to look at these spots right away. It is good that you already have an appointment with melanoma specialists, this is always the route to go.
It might be nothing. But if it is something, doctors might change urgency of your case. My husband and I have stopped saying words like "if", "might, "had"…but we would have done things different and would have insisted…
It is good that you are here, here are so many people who can help and everyone's got a different experience.
All the best to you,
Jenny
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- January 24, 2014 at 10:30 am
Hello,
I am sorry you are having such a hard time.
Your story reminds me of my husbands story who was also diagnosed with an 8mm nodular melanoma, which was misdiagnosed 2 months before actual excision.
Please don't freak out, it will not help you at all (easy to say, I know). If possible get these spots checked right away. Your dermatologist seems to have experience, so he should be willing to look at these spots right away. It is good that you already have an appointment with melanoma specialists, this is always the route to go.
It might be nothing. But if it is something, doctors might change urgency of your case. My husband and I have stopped saying words like "if", "might, "had"…but we would have done things different and would have insisted…
It is good that you are here, here are so many people who can help and everyone's got a different experience.
All the best to you,
Jenny
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- January 24, 2014 at 10:30 am
Hello,
I am sorry you are having such a hard time.
Your story reminds me of my husbands story who was also diagnosed with an 8mm nodular melanoma, which was misdiagnosed 2 months before actual excision.
Please don't freak out, it will not help you at all (easy to say, I know). If possible get these spots checked right away. Your dermatologist seems to have experience, so he should be willing to look at these spots right away. It is good that you already have an appointment with melanoma specialists, this is always the route to go.
It might be nothing. But if it is something, doctors might change urgency of your case. My husband and I have stopped saying words like "if", "might, "had"…but we would have done things different and would have insisted…
It is good that you are here, here are so many people who can help and everyone's got a different experience.
All the best to you,
Jenny
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- January 24, 2014 at 12:15 pm
You have copme to a great place for advice and support from othe Melanoma patients, survivors, and care givers. Anothe great place is the "Melanoma Warriors & Cancer Club" Facebook page. It is a closed club, however, if you want to email me, I can invite you into the club. Now to your question. It is normal to need several tests (such that you are getting) in order to establish staging. Anxiety and stress are part of fighting this monster. You are going to a great place to treat your melanoma. I was seeing Dr. Redman at U of M. I am a Stage 4 survivor and have been NED for over 5-1/2 years now. This group helped me through alot of the stress that I was going through, as you'll see that there are several long-term Stage 4 survivors here. My best advice is to never give up the fight and take one day at a time. You are already going to an institution that specializes in Melanoma, so you're in good hands.
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- January 24, 2014 at 12:15 pm
You have copme to a great place for advice and support from othe Melanoma patients, survivors, and care givers. Anothe great place is the "Melanoma Warriors & Cancer Club" Facebook page. It is a closed club, however, if you want to email me, I can invite you into the club. Now to your question. It is normal to need several tests (such that you are getting) in order to establish staging. Anxiety and stress are part of fighting this monster. You are going to a great place to treat your melanoma. I was seeing Dr. Redman at U of M. I am a Stage 4 survivor and have been NED for over 5-1/2 years now. This group helped me through alot of the stress that I was going through, as you'll see that there are several long-term Stage 4 survivors here. My best advice is to never give up the fight and take one day at a time. You are already going to an institution that specializes in Melanoma, so you're in good hands.
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- January 24, 2014 at 12:15 pm
You have copme to a great place for advice and support from othe Melanoma patients, survivors, and care givers. Anothe great place is the "Melanoma Warriors & Cancer Club" Facebook page. It is a closed club, however, if you want to email me, I can invite you into the club. Now to your question. It is normal to need several tests (such that you are getting) in order to establish staging. Anxiety and stress are part of fighting this monster. You are going to a great place to treat your melanoma. I was seeing Dr. Redman at U of M. I am a Stage 4 survivor and have been NED for over 5-1/2 years now. This group helped me through alot of the stress that I was going through, as you'll see that there are several long-term Stage 4 survivors here. My best advice is to never give up the fight and take one day at a time. You are already going to an institution that specializes in Melanoma, so you're in good hands.
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- January 24, 2014 at 2:23 pm
While I am sorry that you have to join this club, permit me to say, "Welcome!".
I am impressed that you are already wise enough to realize that the "not knowing" is worse than the "knowing". Yes, it is ever thus, and coping with uncertainty is an unavoidable part of having melanoma. Based on the success stories around here, the best thing you can do is to get to an NCI-designated melanoma center (which I think you are), educate yourself about your treatment options (and the folks here will help you with that) and maintain a positive mental attitude that you WILL find a treatment that works for you and that you WILL be OK because you probably will be OK!
Neither you nor your doctors can even begin to develop a treatment plan until you have the results of the Wide Local Excision (WLE) and Sentinal Node Biopsy (SNB). You will want a head and neck surgeon experienced with melanoma to do that. If the tumor is large enough, you should also have the tumor tissue tested for the BRAF, c-kit and NRAS mutations. That will also help with future treatment decisions.
I'm a little confused about which cancer center in Michigan you are going to. I do know that after your WLE you will want to go to an institution that offers a number of melanoma clinical trials because several exciting new melanoma treatments are still in clinical trials. When it comes time for you to choose an oncologist, I suggest that you contact Dr. Christopher Lao because he is running the CheckMate 067 trial at Michigan (ClinicalTrials.gov Identifier: NCT01844505) so he's probably "up" on the melanoma clinical trial picture. His contact information is:
Christopher Donahue Lao MD
Cancer Center Floor 11500 E Medical Center Dr SPC 5912Ann ArborMI48109Phone: 734-936-6360You're doing all the right things. Try to remain calm and patient (yeah, I know–ha!). And keep us posted as to how things go for you. -
- January 24, 2014 at 2:23 pm
While I am sorry that you have to join this club, permit me to say, "Welcome!".
I am impressed that you are already wise enough to realize that the "not knowing" is worse than the "knowing". Yes, it is ever thus, and coping with uncertainty is an unavoidable part of having melanoma. Based on the success stories around here, the best thing you can do is to get to an NCI-designated melanoma center (which I think you are), educate yourself about your treatment options (and the folks here will help you with that) and maintain a positive mental attitude that you WILL find a treatment that works for you and that you WILL be OK because you probably will be OK!
Neither you nor your doctors can even begin to develop a treatment plan until you have the results of the Wide Local Excision (WLE) and Sentinal Node Biopsy (SNB). You will want a head and neck surgeon experienced with melanoma to do that. If the tumor is large enough, you should also have the tumor tissue tested for the BRAF, c-kit and NRAS mutations. That will also help with future treatment decisions.
I'm a little confused about which cancer center in Michigan you are going to. I do know that after your WLE you will want to go to an institution that offers a number of melanoma clinical trials because several exciting new melanoma treatments are still in clinical trials. When it comes time for you to choose an oncologist, I suggest that you contact Dr. Christopher Lao because he is running the CheckMate 067 trial at Michigan (ClinicalTrials.gov Identifier: NCT01844505) so he's probably "up" on the melanoma clinical trial picture. His contact information is:
Christopher Donahue Lao MD
Cancer Center Floor 11500 E Medical Center Dr SPC 5912Ann ArborMI48109Phone: 734-936-6360You're doing all the right things. Try to remain calm and patient (yeah, I know–ha!). And keep us posted as to how things go for you. -
- January 24, 2014 at 2:23 pm
While I am sorry that you have to join this club, permit me to say, "Welcome!".
I am impressed that you are already wise enough to realize that the "not knowing" is worse than the "knowing". Yes, it is ever thus, and coping with uncertainty is an unavoidable part of having melanoma. Based on the success stories around here, the best thing you can do is to get to an NCI-designated melanoma center (which I think you are), educate yourself about your treatment options (and the folks here will help you with that) and maintain a positive mental attitude that you WILL find a treatment that works for you and that you WILL be OK because you probably will be OK!
Neither you nor your doctors can even begin to develop a treatment plan until you have the results of the Wide Local Excision (WLE) and Sentinal Node Biopsy (SNB). You will want a head and neck surgeon experienced with melanoma to do that. If the tumor is large enough, you should also have the tumor tissue tested for the BRAF, c-kit and NRAS mutations. That will also help with future treatment decisions.
I'm a little confused about which cancer center in Michigan you are going to. I do know that after your WLE you will want to go to an institution that offers a number of melanoma clinical trials because several exciting new melanoma treatments are still in clinical trials. When it comes time for you to choose an oncologist, I suggest that you contact Dr. Christopher Lao because he is running the CheckMate 067 trial at Michigan (ClinicalTrials.gov Identifier: NCT01844505) so he's probably "up" on the melanoma clinical trial picture. His contact information is:
Christopher Donahue Lao MD
Cancer Center Floor 11500 E Medical Center Dr SPC 5912Ann ArborMI48109Phone: 734-936-6360You're doing all the right things. Try to remain calm and patient (yeah, I know–ha!). And keep us posted as to how things go for you.-
- January 24, 2014 at 7:14 pm
Even though I'm replying to POW, thank you to everyone for your kind words.
I'll keep Dr. Lao in mind; U of M doesn't take our specific insurance plan (they accept our carrier but not our actual plan), so I might need to look elsewhere for a regular oncologist. We'll see, I guess. Dr. Rinek is trying to talk our insurance into covering all of this anyway.
I have an appointment with Dr. McLean on the 5th; he's the head & neck surgeon who's going to be doing the SNB. I assume they'll do a WLE while they're at it; Dr. Rinek said he left about 10% of it there when he was doing the excision because if he'd gone after that last part, I'd've needed stitches and the area might get inflamed and that might delay/complicate the SNB. He could tell just looking at it that it was probably going to be needed, so he erred on the side of caution in this respect (and then rushed my results through the lab AND called U of M and started sending them my files).
I am trying to remain positive. I have anxiety disorder and depression, so it's easy for me to worry about things. <_< I'm just takin' my meds and trying to distract myself. My sister-in-law had melanoma, and she's 2 years out and doing fine. My friend's dad had two of them and he's just fine. Both of my maternal grandparents had one (Grandma on her leg; Grandpa on his face) and neither of them died from it (though Grandma did die of breast cancer that had metastasized to her liver). So I'm looking at these examples as reasons for hope. I'm also clinging to that low mitotic rate and lack of ulceration. ^_^
Thanks again, everyone!
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- January 24, 2014 at 7:14 pm
Even though I'm replying to POW, thank you to everyone for your kind words.
I'll keep Dr. Lao in mind; U of M doesn't take our specific insurance plan (they accept our carrier but not our actual plan), so I might need to look elsewhere for a regular oncologist. We'll see, I guess. Dr. Rinek is trying to talk our insurance into covering all of this anyway.
I have an appointment with Dr. McLean on the 5th; he's the head & neck surgeon who's going to be doing the SNB. I assume they'll do a WLE while they're at it; Dr. Rinek said he left about 10% of it there when he was doing the excision because if he'd gone after that last part, I'd've needed stitches and the area might get inflamed and that might delay/complicate the SNB. He could tell just looking at it that it was probably going to be needed, so he erred on the side of caution in this respect (and then rushed my results through the lab AND called U of M and started sending them my files).
I am trying to remain positive. I have anxiety disorder and depression, so it's easy for me to worry about things. <_< I'm just takin' my meds and trying to distract myself. My sister-in-law had melanoma, and she's 2 years out and doing fine. My friend's dad had two of them and he's just fine. Both of my maternal grandparents had one (Grandma on her leg; Grandpa on his face) and neither of them died from it (though Grandma did die of breast cancer that had metastasized to her liver). So I'm looking at these examples as reasons for hope. I'm also clinging to that low mitotic rate and lack of ulceration. ^_^
Thanks again, everyone!
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- January 24, 2014 at 7:14 pm
Even though I'm replying to POW, thank you to everyone for your kind words.
I'll keep Dr. Lao in mind; U of M doesn't take our specific insurance plan (they accept our carrier but not our actual plan), so I might need to look elsewhere for a regular oncologist. We'll see, I guess. Dr. Rinek is trying to talk our insurance into covering all of this anyway.
I have an appointment with Dr. McLean on the 5th; he's the head & neck surgeon who's going to be doing the SNB. I assume they'll do a WLE while they're at it; Dr. Rinek said he left about 10% of it there when he was doing the excision because if he'd gone after that last part, I'd've needed stitches and the area might get inflamed and that might delay/complicate the SNB. He could tell just looking at it that it was probably going to be needed, so he erred on the side of caution in this respect (and then rushed my results through the lab AND called U of M and started sending them my files).
I am trying to remain positive. I have anxiety disorder and depression, so it's easy for me to worry about things. <_< I'm just takin' my meds and trying to distract myself. My sister-in-law had melanoma, and she's 2 years out and doing fine. My friend's dad had two of them and he's just fine. Both of my maternal grandparents had one (Grandma on her leg; Grandpa on his face) and neither of them died from it (though Grandma did die of breast cancer that had metastasized to her liver). So I'm looking at these examples as reasons for hope. I'm also clinging to that low mitotic rate and lack of ulceration. ^_^
Thanks again, everyone!
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- January 24, 2014 at 7:59 pm
We all wish you well. U of M is probably the best Melanoma centers in the area. I would strongly suggest that you go to a melanoma specialist rather than a general oncologist. Melanoma can be tricky and there have been tremendous advances in treatment over the last couple years. Many here who have seen general oncolgists have not been happy.
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- January 24, 2014 at 7:59 pm
We all wish you well. U of M is probably the best Melanoma centers in the area. I would strongly suggest that you go to a melanoma specialist rather than a general oncologist. Melanoma can be tricky and there have been tremendous advances in treatment over the last couple years. Many here who have seen general oncolgists have not been happy.
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- January 24, 2014 at 7:59 pm
We all wish you well. U of M is probably the best Melanoma centers in the area. I would strongly suggest that you go to a melanoma specialist rather than a general oncologist. Melanoma can be tricky and there have been tremendous advances in treatment over the last couple years. Many here who have seen general oncolgists have not been happy.
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- January 24, 2014 at 8:15 pm
Thanks! I'd be surprised if we didn't end up returning to U of M for ongoing checkups and whatnot. I know I'll need some sort of oncologist for regular checks/screenings going forward, and I would certainly want one with extensive melanoma experience at a minimum.
Though that brings up another question: should I make regular dermatologist appointments as well, or will my eventual oncologist/melanoma specialist just take over for that? This was the first time I've seen Dr. Rinek; I wanted this mole (well, what turned out to be melanoma) removed because it was in my hair and I kept whacking it with the hairbrush and I was very concerned over how big it'd gotten, and he was the nearest dermatologist covered by our insurance (VERY near – 4 minutes! including stopping at a light!).
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- January 24, 2014 at 8:15 pm
Thanks! I'd be surprised if we didn't end up returning to U of M for ongoing checkups and whatnot. I know I'll need some sort of oncologist for regular checks/screenings going forward, and I would certainly want one with extensive melanoma experience at a minimum.
Though that brings up another question: should I make regular dermatologist appointments as well, or will my eventual oncologist/melanoma specialist just take over for that? This was the first time I've seen Dr. Rinek; I wanted this mole (well, what turned out to be melanoma) removed because it was in my hair and I kept whacking it with the hairbrush and I was very concerned over how big it'd gotten, and he was the nearest dermatologist covered by our insurance (VERY near – 4 minutes! including stopping at a light!).
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- January 24, 2014 at 8:15 pm
Thanks! I'd be surprised if we didn't end up returning to U of M for ongoing checkups and whatnot. I know I'll need some sort of oncologist for regular checks/screenings going forward, and I would certainly want one with extensive melanoma experience at a minimum.
Though that brings up another question: should I make regular dermatologist appointments as well, or will my eventual oncologist/melanoma specialist just take over for that? This was the first time I've seen Dr. Rinek; I wanted this mole (well, what turned out to be melanoma) removed because it was in my hair and I kept whacking it with the hairbrush and I was very concerned over how big it'd gotten, and he was the nearest dermatologist covered by our insurance (VERY near – 4 minutes! including stopping at a light!).
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- January 25, 2014 at 1:21 am
Hi, welcome, sorry you need to be here …
In answer to your question about seeing a dermatologist – yes yes yes! You'll probably want to have a full body check quarterly for the first couple of years, and then the interval will get longer over time. The melanoma specialist/oncologist will order CT and MRI scans as needed. My husband's lesion was also on his head, and they've been doing brain MRIs as well as CT scans every four months. The quarterly visits to the dermatologist are in addition.
The anxiety about waiting is common – but I guess that doesn't help much, does it?!! You'll find lots of posts here, and on a number of melanoma blogs, about how difficult this is. This is a good place to air those frustrations – we've all been there, done that!!
One more note – at some point, when the dust settles, you might want to find out more about families with multiple cases of melanoma. There's a study group at the National Institutes of Health on the subject, and I think Janner (who posts frequently on this board) knows about it as well.
Good luck, keep us posted, and come back again if you have more questions.
~Hazel
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- January 25, 2014 at 1:21 am
Hi, welcome, sorry you need to be here …
In answer to your question about seeing a dermatologist – yes yes yes! You'll probably want to have a full body check quarterly for the first couple of years, and then the interval will get longer over time. The melanoma specialist/oncologist will order CT and MRI scans as needed. My husband's lesion was also on his head, and they've been doing brain MRIs as well as CT scans every four months. The quarterly visits to the dermatologist are in addition.
The anxiety about waiting is common – but I guess that doesn't help much, does it?!! You'll find lots of posts here, and on a number of melanoma blogs, about how difficult this is. This is a good place to air those frustrations – we've all been there, done that!!
One more note – at some point, when the dust settles, you might want to find out more about families with multiple cases of melanoma. There's a study group at the National Institutes of Health on the subject, and I think Janner (who posts frequently on this board) knows about it as well.
Good luck, keep us posted, and come back again if you have more questions.
~Hazel
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- January 25, 2014 at 1:21 am
Hi, welcome, sorry you need to be here …
In answer to your question about seeing a dermatologist – yes yes yes! You'll probably want to have a full body check quarterly for the first couple of years, and then the interval will get longer over time. The melanoma specialist/oncologist will order CT and MRI scans as needed. My husband's lesion was also on his head, and they've been doing brain MRIs as well as CT scans every four months. The quarterly visits to the dermatologist are in addition.
The anxiety about waiting is common – but I guess that doesn't help much, does it?!! You'll find lots of posts here, and on a number of melanoma blogs, about how difficult this is. This is a good place to air those frustrations – we've all been there, done that!!
One more note – at some point, when the dust settles, you might want to find out more about families with multiple cases of melanoma. There's a study group at the National Institutes of Health on the subject, and I think Janner (who posts frequently on this board) knows about it as well.
Good luck, keep us posted, and come back again if you have more questions.
~Hazel
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- January 24, 2014 at 8:24 pm
Ssome good info:
Jeff Tomczek: The Things I Wish I Were Told When I Was Diagnosed With Cancer
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
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- January 24, 2014 at 8:24 pm
Ssome good info:
Jeff Tomczek: The Things I Wish I Were Told When I Was Diagnosed With Cancer
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
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- January 24, 2014 at 8:24 pm
Ssome good info:
Jeff Tomczek: The Things I Wish I Were Told When I Was Diagnosed With Cancer
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
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- January 25, 2014 at 2:38 am
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- January 25, 2014 at 2:38 am
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- January 25, 2014 at 2:38 am
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Tagged: cutaneous melanoma
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