› Forums › General Melanoma Community › Help please…
- This topic has 30 replies, 8 voices, and was last updated 9 years ago by
sweetaugust.
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- April 2, 2015 at 9:58 pm
So…today my life changed. My biopsy came back positive for malignant melanoma and I'm undoubtedly quite scared based on a few factors.
Here are my details:
34 year old white male diagnosed today with AML. 4.26mm Breslow and IV Clark scale according to the pathology report I received from my podiatrist as the lesion is located on the bottom of my foot. I know this lesion has been present for 18 months but I foolishly ignored it.
I am preparing for my visit next week to Dana Farber Institute in Boston and am curious what questions I should be asking…are there better places to look for treatment based on results?
I'm obviously brand new to this disease and it's very scary as I'm sure all of you know.
Please help…
joe
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- April 2, 2015 at 11:00 pm
Hi Joe, first I'd like to say I am sorry about your diagnosis. I know just how scary it is, as I was just diagnosed in January. I know some others on this board have a great amount of great advice, and I'm hopeful a few will chime in. My first bit of advice is to make sure you see an oncologist that specializes in melanoma. There are several newish treatment options, with very positive responses, and someone who specializes in melanoma will better guide you to options and decisions.
My second bit of advice is please do not get wrapped up in the statistics of melanoma. Since there have been many advances in just the last few years, the statistics are old and do not accurately reflect what melanoma treatment responses are like today. The statistics, quite frankly, scared the crap outta me!
Next, I'd say be your own advocate. Research your options. Research your doctors, facilities, etc. Don't be afraid to ask questions, get second opinions, and even give your own opinions. Ask this board for recommendations on doctors and facilities. I personally don't know about the doctors in your area, but someone here may be able to give you advice on that one.
Finally, I know it's hard, but keep your chin up! I have my bad days, or even just moments, and that's fine. But I keep my eyes on the prize, and then I smile! Reach out anytime you want. I know this board has been very helpful to me, and I hope it will be as helpful for you, as well!
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- April 2, 2015 at 11:00 pm
Hi Joe, first I'd like to say I am sorry about your diagnosis. I know just how scary it is, as I was just diagnosed in January. I know some others on this board have a great amount of great advice, and I'm hopeful a few will chime in. My first bit of advice is to make sure you see an oncologist that specializes in melanoma. There are several newish treatment options, with very positive responses, and someone who specializes in melanoma will better guide you to options and decisions.
My second bit of advice is please do not get wrapped up in the statistics of melanoma. Since there have been many advances in just the last few years, the statistics are old and do not accurately reflect what melanoma treatment responses are like today. The statistics, quite frankly, scared the crap outta me!
Next, I'd say be your own advocate. Research your options. Research your doctors, facilities, etc. Don't be afraid to ask questions, get second opinions, and even give your own opinions. Ask this board for recommendations on doctors and facilities. I personally don't know about the doctors in your area, but someone here may be able to give you advice on that one.
Finally, I know it's hard, but keep your chin up! I have my bad days, or even just moments, and that's fine. But I keep my eyes on the prize, and then I smile! Reach out anytime you want. I know this board has been very helpful to me, and I hope it will be as helpful for you, as well!
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- April 2, 2015 at 11:00 pm
Hi Joe, first I'd like to say I am sorry about your diagnosis. I know just how scary it is, as I was just diagnosed in January. I know some others on this board have a great amount of great advice, and I'm hopeful a few will chime in. My first bit of advice is to make sure you see an oncologist that specializes in melanoma. There are several newish treatment options, with very positive responses, and someone who specializes in melanoma will better guide you to options and decisions.
My second bit of advice is please do not get wrapped up in the statistics of melanoma. Since there have been many advances in just the last few years, the statistics are old and do not accurately reflect what melanoma treatment responses are like today. The statistics, quite frankly, scared the crap outta me!
Next, I'd say be your own advocate. Research your options. Research your doctors, facilities, etc. Don't be afraid to ask questions, get second opinions, and even give your own opinions. Ask this board for recommendations on doctors and facilities. I personally don't know about the doctors in your area, but someone here may be able to give you advice on that one.
Finally, I know it's hard, but keep your chin up! I have my bad days, or even just moments, and that's fine. But I keep my eyes on the prize, and then I smile! Reach out anytime you want. I know this board has been very helpful to me, and I hope it will be as helpful for you, as well!
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- April 2, 2015 at 11:44 pm
I'm sorry I'm not very familiar with stage 1 or 2. I assume you are stage 1. I have read about some folks on here that go to Dana farber and it seems like a good place. Just make sure your doc is a melanoma specialist. They have them there. I imagine they might want to do a scan to see if you have it elsewhere but I'm not sure because I'm not familiar with Breslow stuff. Could be they will do a type of surgery to remove it with clear margins. So basically making sure this is the only spot and if so getting it out so you become NED (no evidence of disease). since you've had it for 18 months I would think they would want to be cautious and do a scan but I dunno.
For a little encouragement hopefully I've been stage 4 since June 21 of 2013. I'm still fighting it with around 30 tumors. Others have done way better too.
Artie
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- April 2, 2015 at 11:44 pm
I'm sorry I'm not very familiar with stage 1 or 2. I assume you are stage 1. I have read about some folks on here that go to Dana farber and it seems like a good place. Just make sure your doc is a melanoma specialist. They have them there. I imagine they might want to do a scan to see if you have it elsewhere but I'm not sure because I'm not familiar with Breslow stuff. Could be they will do a type of surgery to remove it with clear margins. So basically making sure this is the only spot and if so getting it out so you become NED (no evidence of disease). since you've had it for 18 months I would think they would want to be cautious and do a scan but I dunno.
For a little encouragement hopefully I've been stage 4 since June 21 of 2013. I'm still fighting it with around 30 tumors. Others have done way better too.
Artie
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- April 2, 2015 at 11:44 pm
I'm sorry I'm not very familiar with stage 1 or 2. I assume you are stage 1. I have read about some folks on here that go to Dana farber and it seems like a good place. Just make sure your doc is a melanoma specialist. They have them there. I imagine they might want to do a scan to see if you have it elsewhere but I'm not sure because I'm not familiar with Breslow stuff. Could be they will do a type of surgery to remove it with clear margins. So basically making sure this is the only spot and if so getting it out so you become NED (no evidence of disease). since you've had it for 18 months I would think they would want to be cautious and do a scan but I dunno.
For a little encouragement hopefully I've been stage 4 since June 21 of 2013. I'm still fighting it with around 30 tumors. Others have done way better too.
Artie
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- April 3, 2015 at 12:39 am
Hi Joe,
the depth of your tumor puts you likely at 2b or 2c depending on whether or not there's ulceration. From here you will probably be scheduled for a sentinel node biopsy to check your lymph nodes to see if any cells have moved to the nodes. Once you get the final diagnosis, you will discuss your care plan.
Dana Farber is a great facility. You're in great hands!!
I think there's a section here on MRF with questions you may want to ask…
Most importantly, take a breath. This will play out over a long period of time. There are great resources available here. Hang in there Joe!
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- April 3, 2015 at 12:39 am
Hi Joe,
the depth of your tumor puts you likely at 2b or 2c depending on whether or not there's ulceration. From here you will probably be scheduled for a sentinel node biopsy to check your lymph nodes to see if any cells have moved to the nodes. Once you get the final diagnosis, you will discuss your care plan.
Dana Farber is a great facility. You're in great hands!!
I think there's a section here on MRF with questions you may want to ask…
Most importantly, take a breath. This will play out over a long period of time. There are great resources available here. Hang in there Joe!
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- April 3, 2015 at 12:39 am
Hi Joe,
the depth of your tumor puts you likely at 2b or 2c depending on whether or not there's ulceration. From here you will probably be scheduled for a sentinel node biopsy to check your lymph nodes to see if any cells have moved to the nodes. Once you get the final diagnosis, you will discuss your care plan.
Dana Farber is a great facility. You're in great hands!!
I think there's a section here on MRF with questions you may want to ask…
Most importantly, take a breath. This will play out over a long period of time. There are great resources available here. Hang in there Joe!
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- April 3, 2015 at 1:26 am
Hi Joe –
So sorry to hear that you've been diagnosed. It is scary and we've all been there. You've landed on the right site to post questions, ask for advice, etc. As for Dana Farber (DFCI), it is exceptional. Their melanoma team led by Dr. Stephen Hodi is on the top of their game, up to date on cutting edge treatments and trials. The nursing staff and all who work there are compassionate and caring professionals in the war against cancer. I'm obviously partial to DFCI as I've been going there since my Stage IV diagnosis in 2005. I've been cancer free (or NED – no evidence of disease in melanoma speak) since 2009.
The others who replied to your post gave sage advice. Ask your medical team detailed questions, advocate on your own behalf, continue to post questions here to gain patient to patient knowledge.
Hang in there!
– Rocco, Stage IV since 2005, Ipilimumab responder and NED since 2009
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- April 3, 2015 at 1:26 am
Hi Joe –
So sorry to hear that you've been diagnosed. It is scary and we've all been there. You've landed on the right site to post questions, ask for advice, etc. As for Dana Farber (DFCI), it is exceptional. Their melanoma team led by Dr. Stephen Hodi is on the top of their game, up to date on cutting edge treatments and trials. The nursing staff and all who work there are compassionate and caring professionals in the war against cancer. I'm obviously partial to DFCI as I've been going there since my Stage IV diagnosis in 2005. I've been cancer free (or NED – no evidence of disease in melanoma speak) since 2009.
The others who replied to your post gave sage advice. Ask your medical team detailed questions, advocate on your own behalf, continue to post questions here to gain patient to patient knowledge.
Hang in there!
– Rocco, Stage IV since 2005, Ipilimumab responder and NED since 2009
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- April 3, 2015 at 1:26 am
Hi Joe –
So sorry to hear that you've been diagnosed. It is scary and we've all been there. You've landed on the right site to post questions, ask for advice, etc. As for Dana Farber (DFCI), it is exceptional. Their melanoma team led by Dr. Stephen Hodi is on the top of their game, up to date on cutting edge treatments and trials. The nursing staff and all who work there are compassionate and caring professionals in the war against cancer. I'm obviously partial to DFCI as I've been going there since my Stage IV diagnosis in 2005. I've been cancer free (or NED – no evidence of disease in melanoma speak) since 2009.
The others who replied to your post gave sage advice. Ask your medical team detailed questions, advocate on your own behalf, continue to post questions here to gain patient to patient knowledge.
Hang in there!
– Rocco, Stage IV since 2005, Ipilimumab responder and NED since 2009
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- April 3, 2015 at 1:35 am
Thank you all so much for the encouragement and words of wisdom. I am anxious to meet my Oncology team at Dana Farber and get my treatment and recovery underway.
Does anyone have experience at Dana Farber in Boston?
It looks like Sloan/Kettering in NYC also has a great Mel department.
Joe
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- April 3, 2015 at 1:35 am
Thank you all so much for the encouragement and words of wisdom. I am anxious to meet my Oncology team at Dana Farber and get my treatment and recovery underway.
Does anyone have experience at Dana Farber in Boston?
It looks like Sloan/Kettering in NYC also has a great Mel department.
Joe
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- April 6, 2015 at 6:09 pm
I have also been a patient of Dr. Hodi's at Dana Farber in Boston since April 2000. I couldn't be happier with Dr. Hodi or his team or Dana Farber's kindness to patients. You can click on my name and view all my melanoma story if you like. My first and deepest melanoma was 2mm deep in my upper right arm back in 2000.
Best of luck to you, Laurie
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- April 6, 2015 at 6:09 pm
I have also been a patient of Dr. Hodi's at Dana Farber in Boston since April 2000. I couldn't be happier with Dr. Hodi or his team or Dana Farber's kindness to patients. You can click on my name and view all my melanoma story if you like. My first and deepest melanoma was 2mm deep in my upper right arm back in 2000.
Best of luck to you, Laurie
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- April 6, 2015 at 6:09 pm
I have also been a patient of Dr. Hodi's at Dana Farber in Boston since April 2000. I couldn't be happier with Dr. Hodi or his team or Dana Farber's kindness to patients. You can click on my name and view all my melanoma story if you like. My first and deepest melanoma was 2mm deep in my upper right arm back in 2000.
Best of luck to you, Laurie
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- April 3, 2015 at 1:35 am
Thank you all so much for the encouragement and words of wisdom. I am anxious to meet my Oncology team at Dana Farber and get my treatment and recovery underway.
Does anyone have experience at Dana Farber in Boston?
It looks like Sloan/Kettering in NYC also has a great Mel department.
Joe
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- April 3, 2015 at 2:14 pm
Hi joe. So sorry to hear of your diagnosis. On the positive side. Finding it now when there are such effective treatments and trials is lucky! I took a friend to my first meeting with my (specialist melanoma) oncologist and not only did it help as she knew the layout of the hospital and practical things but she also recorded the meeting on her phone. That helps as you forget everything that is said. Good luck and try not to be afraid. It is a long path.
anne-Louise
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- April 3, 2015 at 2:14 pm
Hi joe. So sorry to hear of your diagnosis. On the positive side. Finding it now when there are such effective treatments and trials is lucky! I took a friend to my first meeting with my (specialist melanoma) oncologist and not only did it help as she knew the layout of the hospital and practical things but she also recorded the meeting on her phone. That helps as you forget everything that is said. Good luck and try not to be afraid. It is a long path.
anne-Louise
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- April 3, 2015 at 2:14 pm
Hi joe. So sorry to hear of your diagnosis. On the positive side. Finding it now when there are such effective treatments and trials is lucky! I took a friend to my first meeting with my (specialist melanoma) oncologist and not only did it help as she knew the layout of the hospital and practical things but she also recorded the meeting on her phone. That helps as you forget everything that is said. Good luck and try not to be afraid. It is a long path.
anne-Louise
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- April 3, 2015 at 2:15 pm
Sorry for your diagnosis, but sounds like you are in good hands with your medical team and certainly will get amazing advice and support here. Hang in there. It will not always be fun, but you can handle this. Many of us on mpip are a testament to that! I wish you my best. Celeste
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- April 3, 2015 at 2:15 pm
Sorry for your diagnosis, but sounds like you are in good hands with your medical team and certainly will get amazing advice and support here. Hang in there. It will not always be fun, but you can handle this. Many of us on mpip are a testament to that! I wish you my best. Celeste
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- April 3, 2015 at 2:15 pm
Sorry for your diagnosis, but sounds like you are in good hands with your medical team and certainly will get amazing advice and support here. Hang in there. It will not always be fun, but you can handle this. Many of us on mpip are a testament to that! I wish you my best. Celeste
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