› Forums › General Melanoma Community › New diagnosis
- This topic has 30 replies, 6 voices, and was last updated 9 years, 9 months ago by
mary1233.
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- July 25, 2014 at 11:44 pm
I just received a phone call this past Tuesday letting me know I had melanoma. I got a copy of the pathology report that was obtained from Mayo Clinic – apparently my local lab sent it to them due to coming back "atypical." The patho report is pretty frightening, especially when paired with excessive web searching. I was going to wait for my family practice NP to refer me to a dermatologist, but instead I called the Melvin & Bren Simon Cancer Center in Indianapolis, IN to try and get an appointment. They were super nice and helpful, after getting a copy of my patho report they set up an appointment for next Tuesday with a Dr. Swartzentruber. I looked him up and he has a great reputation, so I feel good about that. I'm really anxious though and hope my appointment will help resolve some of the incredible anxiety. Nice to land somewhere that has people familiar with this problem 🙂
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- July 26, 2014 at 12:11 am
Hi Beth, so sorry to hear of your diagnosis, and sorry you've had to join us here, but welcome anyway.
We can help you best if you post the details from your pathology report. There's a lot of "old" information available on the internet about melanoma, so try not to spend too much time belaboring all you read – and if possible, give the internet searching a rest. We have some knowledgeable people who review this board regularly (though less so on the weekends) and will do their best to help you understand. Once we know what's in your path report (size and depth, mitotic rate, description of the cells seen on the slide – also location on your body) we can help you figure out what's next and what you should be focusing on now.
This is a really scary time, this period of not knowing and not understanding. Give yourself some time to absorb everything. I hope you have someone close (physically and emotionally) to help you deal with it. In particular, if you have someone who can go with you to your appointment on Tuesday and take notes, remember what questions you wanted to ask, etc., that would be good.
Don't be discouraged if it takes a little longer over the weekend for people to answer your posts. Some of us will be around and reach out to offer what information and support you need.
Come back here and post when you have questions or just need to share your feelings. I hope that will ease your anxiety some between now and Tuesday.
~Hazel
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- July 26, 2014 at 12:11 am
Hi Beth, so sorry to hear of your diagnosis, and sorry you've had to join us here, but welcome anyway.
We can help you best if you post the details from your pathology report. There's a lot of "old" information available on the internet about melanoma, so try not to spend too much time belaboring all you read – and if possible, give the internet searching a rest. We have some knowledgeable people who review this board regularly (though less so on the weekends) and will do their best to help you understand. Once we know what's in your path report (size and depth, mitotic rate, description of the cells seen on the slide – also location on your body) we can help you figure out what's next and what you should be focusing on now.
This is a really scary time, this period of not knowing and not understanding. Give yourself some time to absorb everything. I hope you have someone close (physically and emotionally) to help you deal with it. In particular, if you have someone who can go with you to your appointment on Tuesday and take notes, remember what questions you wanted to ask, etc., that would be good.
Don't be discouraged if it takes a little longer over the weekend for people to answer your posts. Some of us will be around and reach out to offer what information and support you need.
Come back here and post when you have questions or just need to share your feelings. I hope that will ease your anxiety some between now and Tuesday.
~Hazel
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- July 26, 2014 at 12:38 am
Hi, Hazel, and thanks so much for your reply. Here are what seem like the most important elements: invasive to Breslow depth of at least 1.05mm, Clark level at least IV, completely ulcerated, mitotic rate 4/mm2, vertical growth phase present, Vimentin+, Mart/Melanin A+, and S100 weakly+. My Derm NP did a full-body skin exam in September of last year; I showed her the mole and asked her to remove it and she declined to – stating it looked ok. Anyway, it was "itchy" throughout the winter (I attributed that to winter dry skin, sadly) and then started bleeding like mad about June 28-30, and I had my family practice NP remove it on July 1st.
I appreciate any support and encouragement I can get at this point. It was great. To find this site.
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- July 26, 2014 at 12:47 am
Sorry, left out the location. It is on my back – about the middle, but left of my spine. You asked about appearance of the microscopic examination – here it is verbatim: "sections reveal the presence of skin ulceration associated with a proliferation of epitheliod cells which are within the dermis. The epitheliod cells contain a moderate amount of amphophilic cytoplasm and nuclei which are irregularly shaped and contain moderately coarsely granular chromatin and prominent eosinophilic nucleoli. The cells are arranged con fluent nests."
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- July 26, 2014 at 12:47 am
Sorry, left out the location. It is on my back – about the middle, but left of my spine. You asked about appearance of the microscopic examination – here it is verbatim: "sections reveal the presence of skin ulceration associated with a proliferation of epitheliod cells which are within the dermis. The epitheliod cells contain a moderate amount of amphophilic cytoplasm and nuclei which are irregularly shaped and contain moderately coarsely granular chromatin and prominent eosinophilic nucleoli. The cells are arranged con fluent nests."
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- July 26, 2014 at 12:47 am
Sorry, left out the location. It is on my back – about the middle, but left of my spine. You asked about appearance of the microscopic examination – here it is verbatim: "sections reveal the presence of skin ulceration associated with a proliferation of epitheliod cells which are within the dermis. The epitheliod cells contain a moderate amount of amphophilic cytoplasm and nuclei which are irregularly shaped and contain moderately coarsely granular chromatin and prominent eosinophilic nucleoli. The cells are arranged con fluent nests."
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- July 28, 2014 at 1:29 pm
Beth – So sorry for you diagnosis. I just wanted to add that Hazel has given you a hugely helpful piece of advice. When I was first diagnosed I started to ready everything I could find, and it was so frightening that I had to stop because the only conclusion I could come to was that I only had a few months left.
My rule of thumb is not to read anything that written before 2012 – and a lot of that is now outdated.
Best wishes.
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- July 28, 2014 at 1:29 pm
Beth – So sorry for you diagnosis. I just wanted to add that Hazel has given you a hugely helpful piece of advice. When I was first diagnosed I started to ready everything I could find, and it was so frightening that I had to stop because the only conclusion I could come to was that I only had a few months left.
My rule of thumb is not to read anything that written before 2012 – and a lot of that is now outdated.
Best wishes.
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- July 28, 2014 at 1:29 pm
Beth – So sorry for you diagnosis. I just wanted to add that Hazel has given you a hugely helpful piece of advice. When I was first diagnosed I started to ready everything I could find, and it was so frightening that I had to stop because the only conclusion I could come to was that I only had a few months left.
My rule of thumb is not to read anything that written before 2012 – and a lot of that is now outdated.
Best wishes.
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- July 26, 2014 at 12:38 am
Hi, Hazel, and thanks so much for your reply. Here are what seem like the most important elements: invasive to Breslow depth of at least 1.05mm, Clark level at least IV, completely ulcerated, mitotic rate 4/mm2, vertical growth phase present, Vimentin+, Mart/Melanin A+, and S100 weakly+. My Derm NP did a full-body skin exam in September of last year; I showed her the mole and asked her to remove it and she declined to – stating it looked ok. Anyway, it was "itchy" throughout the winter (I attributed that to winter dry skin, sadly) and then started bleeding like mad about June 28-30, and I had my family practice NP remove it on July 1st.
I appreciate any support and encouragement I can get at this point. It was great. To find this site.
-
- July 26, 2014 at 12:38 am
Hi, Hazel, and thanks so much for your reply. Here are what seem like the most important elements: invasive to Breslow depth of at least 1.05mm, Clark level at least IV, completely ulcerated, mitotic rate 4/mm2, vertical growth phase present, Vimentin+, Mart/Melanin A+, and S100 weakly+. My Derm NP did a full-body skin exam in September of last year; I showed her the mole and asked her to remove it and she declined to – stating it looked ok. Anyway, it was "itchy" throughout the winter (I attributed that to winter dry skin, sadly) and then started bleeding like mad about June 28-30, and I had my family practice NP remove it on July 1st.
I appreciate any support and encouragement I can get at this point. It was great. To find this site.
-
- July 26, 2014 at 12:11 am
Hi Beth, so sorry to hear of your diagnosis, and sorry you've had to join us here, but welcome anyway.
We can help you best if you post the details from your pathology report. There's a lot of "old" information available on the internet about melanoma, so try not to spend too much time belaboring all you read – and if possible, give the internet searching a rest. We have some knowledgeable people who review this board regularly (though less so on the weekends) and will do their best to help you understand. Once we know what's in your path report (size and depth, mitotic rate, description of the cells seen on the slide – also location on your body) we can help you figure out what's next and what you should be focusing on now.
This is a really scary time, this period of not knowing and not understanding. Give yourself some time to absorb everything. I hope you have someone close (physically and emotionally) to help you deal with it. In particular, if you have someone who can go with you to your appointment on Tuesday and take notes, remember what questions you wanted to ask, etc., that would be good.
Don't be discouraged if it takes a little longer over the weekend for people to answer your posts. Some of us will be around and reach out to offer what information and support you need.
Come back here and post when you have questions or just need to share your feelings. I hope that will ease your anxiety some between now and Tuesday.
~Hazel
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- July 26, 2014 at 2:19 am
Beth, sorry to hear you're facing this frightening time, many of us here can understand and you've come to a place with people with a lot of experience, compassion, and information. You're taking the right first steps in facing this head-on and Hazel has already provided some great advice, including that about the Internet searches. The field of melanoma is changing so rapidly that so much you'll find is out-of-date. But again, Hazel provided some good food for thought as you being this journey.
From what I know, you're in excellent hands with Dr. Schwartzentruber. He spent a fair part of his career at the National Cancer Institute / National Institutes of Health (NCI/NIH) in Bethesds participating in some of the pioneering research in immunotherapy for melanoma. He returned to Indiana and I believe is now the medical director for cancer services at IU's health system. In 2010 he was named as one of Time Magazine's "100 Most Influential People in the World" for his work with cancer vaccines. The vaccines have faced their challenges, but the important point is that he really knows his stuff and what's going on in the melanoma space. I was diagnosed around the time he was transitioning to Indiana and named to the Time list — through a connection to a family member, we felt fortunate to consult with him by phone briefly, just to get a "lay of the land" that ultimately played a role in helping me decide on my early treatment plan.
Keep us up to date, best of luck with your appointment on Tuesday,
Joe
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- July 26, 2014 at 2:19 am
Beth, sorry to hear you're facing this frightening time, many of us here can understand and you've come to a place with people with a lot of experience, compassion, and information. You're taking the right first steps in facing this head-on and Hazel has already provided some great advice, including that about the Internet searches. The field of melanoma is changing so rapidly that so much you'll find is out-of-date. But again, Hazel provided some good food for thought as you being this journey.
From what I know, you're in excellent hands with Dr. Schwartzentruber. He spent a fair part of his career at the National Cancer Institute / National Institutes of Health (NCI/NIH) in Bethesds participating in some of the pioneering research in immunotherapy for melanoma. He returned to Indiana and I believe is now the medical director for cancer services at IU's health system. In 2010 he was named as one of Time Magazine's "100 Most Influential People in the World" for his work with cancer vaccines. The vaccines have faced their challenges, but the important point is that he really knows his stuff and what's going on in the melanoma space. I was diagnosed around the time he was transitioning to Indiana and named to the Time list — through a connection to a family member, we felt fortunate to consult with him by phone briefly, just to get a "lay of the land" that ultimately played a role in helping me decide on my early treatment plan.
Keep us up to date, best of luck with your appointment on Tuesday,
Joe
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- July 26, 2014 at 11:01 am
Thanks so much, Joe. It's nice to hear good things about my doctor, that's for sure. I was a little worried about the "July effect" in seeking care, but perhaps that's why I got lucky and was assigned Dr. Swartzentruber. I will definitely keep you posted 🙂
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- July 26, 2014 at 11:01 am
Thanks so much, Joe. It's nice to hear good things about my doctor, that's for sure. I was a little worried about the "July effect" in seeking care, but perhaps that's why I got lucky and was assigned Dr. Swartzentruber. I will definitely keep you posted 🙂
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- July 26, 2014 at 11:01 am
Thanks so much, Joe. It's nice to hear good things about my doctor, that's for sure. I was a little worried about the "July effect" in seeking care, but perhaps that's why I got lucky and was assigned Dr. Swartzentruber. I will definitely keep you posted 🙂
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- July 26, 2014 at 2:19 am
Beth, sorry to hear you're facing this frightening time, many of us here can understand and you've come to a place with people with a lot of experience, compassion, and information. You're taking the right first steps in facing this head-on and Hazel has already provided some great advice, including that about the Internet searches. The field of melanoma is changing so rapidly that so much you'll find is out-of-date. But again, Hazel provided some good food for thought as you being this journey.
From what I know, you're in excellent hands with Dr. Schwartzentruber. He spent a fair part of his career at the National Cancer Institute / National Institutes of Health (NCI/NIH) in Bethesds participating in some of the pioneering research in immunotherapy for melanoma. He returned to Indiana and I believe is now the medical director for cancer services at IU's health system. In 2010 he was named as one of Time Magazine's "100 Most Influential People in the World" for his work with cancer vaccines. The vaccines have faced their challenges, but the important point is that he really knows his stuff and what's going on in the melanoma space. I was diagnosed around the time he was transitioning to Indiana and named to the Time list — through a connection to a family member, we felt fortunate to consult with him by phone briefly, just to get a "lay of the land" that ultimately played a role in helping me decide on my early treatment plan.
Keep us up to date, best of luck with your appointment on Tuesday,
Joe
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- July 26, 2014 at 7:35 am
Hi Beth,
The next step is to have a sentinal node biopsy and wide excision. Since the mole was on your back, the SNB can be anywhere from your armpits to your groin nodes. The SN is then tested for metastasis to complete your staging. Not much more until this is done since you are still being staged.
1.05 mm – intermediate risk especially when counting ulceration which will upstage you, and your mitotic rate.
You can view my profile. Mine was deeper but without ulceration. Regardless you should be followed closely with skin exams from here on out, as well as an oncologist due to your intermediate risk of recurrance.
Don't worry, the deer in the headlight phase will pass as you get up to speed on all this melanoma stuff. Remember though that much of what you read is old so survival statistics have improved somewhat. New great drugs seem to be on an expressway for melanoma which is nice considering how bleak things were when I was first diagnosed in 2002.
Still alive and kicking :).
Kim
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- July 26, 2014 at 7:35 am
Hi Beth,
The next step is to have a sentinal node biopsy and wide excision. Since the mole was on your back, the SNB can be anywhere from your armpits to your groin nodes. The SN is then tested for metastasis to complete your staging. Not much more until this is done since you are still being staged.
1.05 mm – intermediate risk especially when counting ulceration which will upstage you, and your mitotic rate.
You can view my profile. Mine was deeper but without ulceration. Regardless you should be followed closely with skin exams from here on out, as well as an oncologist due to your intermediate risk of recurrance.
Don't worry, the deer in the headlight phase will pass as you get up to speed on all this melanoma stuff. Remember though that much of what you read is old so survival statistics have improved somewhat. New great drugs seem to be on an expressway for melanoma which is nice considering how bleak things were when I was first diagnosed in 2002.
Still alive and kicking :).
Kim
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- July 26, 2014 at 11:17 am
Thanks for the reply, Kim. I figured a SNB was in my immediate future along with the wide excision, based on what I read on the web. How long does it take to get the results back generally? I'm kind of foggy on time frames here, but was told by the cancer center to expect them to move rapidly. I'm glad about that though, as of course my general feeling is "get this crap offa me!!!"
I was supposed to leave for a 3+ week vacation on the 31st to Glacier National Park and then onto Calgary for the arrival of my first grandbaby – but I have pushed those plans back due to this coming up. Hopefully, I can get on with treatment and get back to going to see the mountains and my grandson as soon as I can. Talk about epic bad timing 😉
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- July 26, 2014 at 11:17 am
Thanks for the reply, Kim. I figured a SNB was in my immediate future along with the wide excision, based on what I read on the web. How long does it take to get the results back generally? I'm kind of foggy on time frames here, but was told by the cancer center to expect them to move rapidly. I'm glad about that though, as of course my general feeling is "get this crap offa me!!!"
I was supposed to leave for a 3+ week vacation on the 31st to Glacier National Park and then onto Calgary for the arrival of my first grandbaby – but I have pushed those plans back due to this coming up. Hopefully, I can get on with treatment and get back to going to see the mountains and my grandson as soon as I can. Talk about epic bad timing 😉
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- July 26, 2014 at 11:17 am
Thanks for the reply, Kim. I figured a SNB was in my immediate future along with the wide excision, based on what I read on the web. How long does it take to get the results back generally? I'm kind of foggy on time frames here, but was told by the cancer center to expect them to move rapidly. I'm glad about that though, as of course my general feeling is "get this crap offa me!!!"
I was supposed to leave for a 3+ week vacation on the 31st to Glacier National Park and then onto Calgary for the arrival of my first grandbaby – but I have pushed those plans back due to this coming up. Hopefully, I can get on with treatment and get back to going to see the mountains and my grandson as soon as I can. Talk about epic bad timing 😉
-
- July 26, 2014 at 7:35 am
Hi Beth,
The next step is to have a sentinal node biopsy and wide excision. Since the mole was on your back, the SNB can be anywhere from your armpits to your groin nodes. The SN is then tested for metastasis to complete your staging. Not much more until this is done since you are still being staged.
1.05 mm – intermediate risk especially when counting ulceration which will upstage you, and your mitotic rate.
You can view my profile. Mine was deeper but without ulceration. Regardless you should be followed closely with skin exams from here on out, as well as an oncologist due to your intermediate risk of recurrance.
Don't worry, the deer in the headlight phase will pass as you get up to speed on all this melanoma stuff. Remember though that much of what you read is old so survival statistics have improved somewhat. New great drugs seem to be on an expressway for melanoma which is nice considering how bleak things were when I was first diagnosed in 2002.
Still alive and kicking :).
Kim
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- July 26, 2014 at 2:58 pm
I am very sorry about your diagnosis and hope your SNB will come back clean!
I am wondering how your mole looked like when your derm NP refused to remove it?????
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- July 27, 2014 at 2:19 am
Thanks for the encouragement 🙂 It was just pretty red at the time – she didn't feel it warranted removal nor did she think insurance would pay for the removal. I should have insisted – but just figured she should know what she was talking about. I was clearly wrong about that.
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- July 27, 2014 at 2:19 am
Thanks for the encouragement 🙂 It was just pretty red at the time – she didn't feel it warranted removal nor did she think insurance would pay for the removal. I should have insisted – but just figured she should know what she was talking about. I was clearly wrong about that.
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- July 27, 2014 at 2:19 am
Thanks for the encouragement 🙂 It was just pretty red at the time – she didn't feel it warranted removal nor did she think insurance would pay for the removal. I should have insisted – but just figured she should know what she was talking about. I was clearly wrong about that.
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