› Forums › General Melanoma Community › Please help ….
- This topic has 30 replies, 6 voices, and was last updated 10 years, 3 months ago by
JC.
- Post
-
- February 14, 2014 at 2:04 am
I took a telephone conversation from the dermo office this evening whilst making valentines day card with my 6 & 8 year old children. I went to see them after my breast surgeon ( who I was seeing for some confirmed masses and a 3cm axillary lymph node ) said shed like me to see one asap.
She called and said she had surprising news. Of the three biopsies she took two came back as malignant melanomas. Of course I had my children so I said, ok thank you. She said I am not sure you are registering what I am saying, I advised I was but I couldnt ask anything right now so perhaps she could tell me things .
This is what I wrote down — I know she said more but I have no idea what.
Two malignant melanomas one of neck and one on toe ( next to nail bed which incidentally has looked odd – the nail I mean )
The one on the neck i THINK she said was.4mm and the toe .2mm but it could have been 4 & 2 BUT she said if its less than have a mm then the prognosis is better … so I think she must have meant .4mm ….
I have an apointment for Friday 21st at 10am with an oncologist – a consultation . I have written the word excision.
Is this standard , to wait so long I mean . Now things have sunk in and its late and of course ive looked it up and on the neck is a little yucky .
What should i do or think or ask . Honestly I cant think anything, my brain is numb ? Is this bad ? or is it ok ? or good ? Does the fact that its in the neck change the game ? Lordy I dont know how I can wait till 21st
Thank you
- Replies
-
-
- February 14, 2014 at 3:36 am
#1: get copies of the pathology reports.
#2: confirm pathology was done by a dermatopathogist (skin pathologist, not general)
if lesions are as you said, under 1mm, that is a good thing. Don't worry about the timing, your prognosis isn't going to change if you have to wait a while for your excision. Some people wait weeks to months and it is ok. Not great for mental health, but none of this is.
One step at a time and the first is to confirm depth and pathology. Talk to your onc. We are happy to answer questions, but the pathology reports help us most.
-
- February 14, 2014 at 3:36 am
#1: get copies of the pathology reports.
#2: confirm pathology was done by a dermatopathogist (skin pathologist, not general)
if lesions are as you said, under 1mm, that is a good thing. Don't worry about the timing, your prognosis isn't going to change if you have to wait a while for your excision. Some people wait weeks to months and it is ok. Not great for mental health, but none of this is.
One step at a time and the first is to confirm depth and pathology. Talk to your onc. We are happy to answer questions, but the pathology reports help us most.
-
- February 14, 2014 at 3:54 am
Great advice Janner – I misread the size of the lesions. They are small, which is good!
-
- February 14, 2014 at 3:54 am
Great advice Janner – I misread the size of the lesions. They are small, which is good!
-
- February 14, 2014 at 3:54 am
Great advice Janner – I misread the size of the lesions. They are small, which is good!
-
- February 14, 2014 at 3:36 am
#1: get copies of the pathology reports.
#2: confirm pathology was done by a dermatopathogist (skin pathologist, not general)
if lesions are as you said, under 1mm, that is a good thing. Don't worry about the timing, your prognosis isn't going to change if you have to wait a while for your excision. Some people wait weeks to months and it is ok. Not great for mental health, but none of this is.
One step at a time and the first is to confirm depth and pathology. Talk to your onc. We are happy to answer questions, but the pathology reports help us most.
-
- February 14, 2014 at 3:48 am
I am so sorry for your anguish. You have come to the right place for some good advice. If it were me, I would call and insist on getting in earlier than the 21st. I posted this on the chat you were on, but review the information in the 'Understanding melanoma' section of this website. There's a lot of good info there. Try to stay off the internet as there is a lot of out dated statistics and information out there. If your oncologist is not a melanoma specialist, it's important that you ask your doctor for recommendations. Where are you from? Others on this site might have some suggestions on melanoma specialists in your area.
I'm sure other, more knowledgable folks on this site will chime in and give you some good advice. Remember that you are not alone and we all know how you are feeling and what you are going through.
Try to take some deep breaths, learn as much as you can and prepare your questions for your appt. hopefully someone can go with you and take notes for you. It's hard to focus when there is so much information to digest and you are in an emotional state.
hang in there – I'll keep you in my prayers
-
- February 14, 2014 at 3:48 am
I am so sorry for your anguish. You have come to the right place for some good advice. If it were me, I would call and insist on getting in earlier than the 21st. I posted this on the chat you were on, but review the information in the 'Understanding melanoma' section of this website. There's a lot of good info there. Try to stay off the internet as there is a lot of out dated statistics and information out there. If your oncologist is not a melanoma specialist, it's important that you ask your doctor for recommendations. Where are you from? Others on this site might have some suggestions on melanoma specialists in your area.
I'm sure other, more knowledgable folks on this site will chime in and give you some good advice. Remember that you are not alone and we all know how you are feeling and what you are going through.
Try to take some deep breaths, learn as much as you can and prepare your questions for your appt. hopefully someone can go with you and take notes for you. It's hard to focus when there is so much information to digest and you are in an emotional state.
hang in there – I'll keep you in my prayers
-
- February 14, 2014 at 3:48 am
I am so sorry for your anguish. You have come to the right place for some good advice. If it were me, I would call and insist on getting in earlier than the 21st. I posted this on the chat you were on, but review the information in the 'Understanding melanoma' section of this website. There's a lot of good info there. Try to stay off the internet as there is a lot of out dated statistics and information out there. If your oncologist is not a melanoma specialist, it's important that you ask your doctor for recommendations. Where are you from? Others on this site might have some suggestions on melanoma specialists in your area.
I'm sure other, more knowledgable folks on this site will chime in and give you some good advice. Remember that you are not alone and we all know how you are feeling and what you are going through.
Try to take some deep breaths, learn as much as you can and prepare your questions for your appt. hopefully someone can go with you and take notes for you. It's hard to focus when there is so much information to digest and you are in an emotional state.
hang in there – I'll keep you in my prayers
-
- February 14, 2014 at 6:05 am
Several questions: Appointment with Oncologist:
Is this a preliminary visit or for surgery?
General Oncologist or Melanoma Specialist?
Surgical or Medical Oncologist?
I suspect a surgical for the purpose of doing a Wide Local Excision (WLE) to get adequate margins of clear tissue without any melanoma cells in them. Likely to also get set up for a removal of the swollen lymph node (Is the swollen node in the neck or groin?)
If the swollen lymph node contains melanoma then they will want to remove more to try to get a clear margin in the lymph node basin.
You might also want to ask about getting both the removed melanomas tested for their DNA mutations. At least tested for C-kit and BRAF oncoproteins and/or DNA mutations.
Go to the following article : The Things I Wish I Were Told When I Was Diagnosed With Cancer
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
-
- February 14, 2014 at 6:05 am
Several questions: Appointment with Oncologist:
Is this a preliminary visit or for surgery?
General Oncologist or Melanoma Specialist?
Surgical or Medical Oncologist?
I suspect a surgical for the purpose of doing a Wide Local Excision (WLE) to get adequate margins of clear tissue without any melanoma cells in them. Likely to also get set up for a removal of the swollen lymph node (Is the swollen node in the neck or groin?)
If the swollen lymph node contains melanoma then they will want to remove more to try to get a clear margin in the lymph node basin.
You might also want to ask about getting both the removed melanomas tested for their DNA mutations. At least tested for C-kit and BRAF oncoproteins and/or DNA mutations.
Go to the following article : The Things I Wish I Were Told When I Was Diagnosed With Cancer
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
-
- February 14, 2014 at 6:05 am
Several questions: Appointment with Oncologist:
Is this a preliminary visit or for surgery?
General Oncologist or Melanoma Specialist?
Surgical or Medical Oncologist?
I suspect a surgical for the purpose of doing a Wide Local Excision (WLE) to get adequate margins of clear tissue without any melanoma cells in them. Likely to also get set up for a removal of the swollen lymph node (Is the swollen node in the neck or groin?)
If the swollen lymph node contains melanoma then they will want to remove more to try to get a clear margin in the lymph node basin.
You might also want to ask about getting both the removed melanomas tested for their DNA mutations. At least tested for C-kit and BRAF oncoproteins and/or DNA mutations.
Go to the following article : The Things I Wish I Were Told When I Was Diagnosed With Cancer
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
-
- February 14, 2014 at 1:45 pm
Oh, my goodness, Tickloo! What a distressing way to get such news! I think that everybody who first hears the word "melanoma" applied to them is shot with fear. But you received the news in such a way that you could not really question your doctor about the particulars of the path report, what steps you should follow next or especially about your prognosis. How awful! And to make matters worse, you're sitting there playing with your two young children when you get the news and what is going to be your first thought? "OMG! What's going to happen to my children if I die from this??!!" I'm so sorry, Tickyloo. You really did have a particularly bad and emotionally difficult introduction to melanoma.
But what Janner and the others have said is correct. Try to take a deep breath. Calm down. Take things one step at a time. Melanoma is NOT a death sentence! The vast majority of people who are diagnosed with melanoma have it surgically removed (by what is called a "wide local excision" or WLE) and never see melanoma again. For thin lesions like yours appear to be, that's something like a 95% probability. Keep reminding yourself of that.
Do get a copy of your pathology report and read it. Post it here, if you can. And make sure that a board-certified dermatopathologist wrote the report. If not, have the slides read again by a dermatopathologist. From what you said, your lesions are thin enough that you probably will not need a sentinel node biopsy when they do the WLE. But if you do need an SNL, be sure to go to an experienced head and neck surgeon– there are a lot of lymph nodes in the head and neck so for best results you need a surgical specialist. As Janner said, while it is emotionally difficult to wait for the WLE, studies have shown that delaying the WLE for weeks or even months makes no difference to the outcome. If you need an SNL, wait until you can get an appointment with a head and neck surgeon.
You do not need to get to a melanoma oncologist yet. First review your path report. Then get the results of the WLE. Then you will have the facts on which to base future treatment decisions.
Again, slow down. Take a deep breath. Keep telling yourself that you're going to be OK and your kids are going to be OK because that is most likely to be the outcome.
-
- February 14, 2014 at 3:19 pm
Thank you all very kindly, I feel a bit of a fake based upon some of the stories I have read here but its still a little worrisome.
I called the dermo office today and low and behold they dont work Fridays so I could only get limited information but nothing on the path report. I did however ask who I was referred to and he is a general oncologist – I asked the question why not a dermo – the reply – because you have cancer sweetie ….. Good job and I am not the crazy type ( a good nights sleep put this all in perspective )
I would feel a lot happier if I didnt have enlarged axiallry lymph , but that being said, its on the other side of my body. Hoping this is all just a little wake up call to take better care of myself.
Thank you all for being so kind to reply
-
- February 14, 2014 at 3:19 pm
Thank you all very kindly, I feel a bit of a fake based upon some of the stories I have read here but its still a little worrisome.
I called the dermo office today and low and behold they dont work Fridays so I could only get limited information but nothing on the path report. I did however ask who I was referred to and he is a general oncologist – I asked the question why not a dermo – the reply – because you have cancer sweetie ….. Good job and I am not the crazy type ( a good nights sleep put this all in perspective )
I would feel a lot happier if I didnt have enlarged axiallry lymph , but that being said, its on the other side of my body. Hoping this is all just a little wake up call to take better care of myself.
Thank you all for being so kind to reply
-
- February 14, 2014 at 3:19 pm
Thank you all very kindly, I feel a bit of a fake based upon some of the stories I have read here but its still a little worrisome.
I called the dermo office today and low and behold they dont work Fridays so I could only get limited information but nothing on the path report. I did however ask who I was referred to and he is a general oncologist – I asked the question why not a dermo – the reply – because you have cancer sweetie ….. Good job and I am not the crazy type ( a good nights sleep put this all in perspective )
I would feel a lot happier if I didnt have enlarged axiallry lymph , but that being said, its on the other side of my body. Hoping this is all just a little wake up call to take better care of myself.
Thank you all for being so kind to reply
-
- February 14, 2014 at 3:43 pm
Hopefully the swollen lymph nodes are not related to the melanoma. As this is unkown, they may want to inject a dye that will flow thru the lymph channels from the primary location to determine which is the correct SLN. This can vary for head and neck primarie. This should be done before the WLE is done. They may want to do a needle biopsy to help verify if the swollen lymph nodes contain melanoma. Though a needle biopsy at times is like looking fo a needle in a haystack. Depends on what is at the exact location the needle enters the node.
No, you are NOT a fake! It is syour place to learn aand be vigilant, not paranoid. AS you have stated, you have a couple of extra resons to be concerned outside of "just your own" life: It is possible that the swollen lymph nodes are from some infection. Until you know for sure, yuou have to know wht to expect either way and not be shocked at the last moment. If possible you should have another adult go with you to the Oncologist. None of us could keep everything straight on the first few (years?) visits, there is to much to learn in our NEW world.
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
_______________________________
http://www.melanoma.org/understand-melanoma/resource-library/videos-webinarsGod luck and let us know what happens..
Jerry
-
- February 14, 2014 at 3:43 pm
Hopefully the swollen lymph nodes are not related to the melanoma. As this is unkown, they may want to inject a dye that will flow thru the lymph channels from the primary location to determine which is the correct SLN. This can vary for head and neck primarie. This should be done before the WLE is done. They may want to do a needle biopsy to help verify if the swollen lymph nodes contain melanoma. Though a needle biopsy at times is like looking fo a needle in a haystack. Depends on what is at the exact location the needle enters the node.
No, you are NOT a fake! It is syour place to learn aand be vigilant, not paranoid. AS you have stated, you have a couple of extra resons to be concerned outside of "just your own" life: It is possible that the swollen lymph nodes are from some infection. Until you know for sure, yuou have to know wht to expect either way and not be shocked at the last moment. If possible you should have another adult go with you to the Oncologist. None of us could keep everything straight on the first few (years?) visits, there is to much to learn in our NEW world.
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
_______________________________
http://www.melanoma.org/understand-melanoma/resource-library/videos-webinarsGod luck and let us know what happens..
Jerry
-
- February 17, 2014 at 10:48 pm
Thank you all. Well what a huge relief ( and dont i feel silly making my whole family worry – i wish maybe they used different words)
I wasnt allowed to see the path report but he read it to me. Against ulcerated is said not classified and both have a Clarks level II.
Im having the WLE on my neck friday and my toe two weeks later . A Pet scan subject to Insurance approval.
Very relieved and very happy I wont loose my toe – boy the mind is a powerful instrument !
-
- February 17, 2014 at 10:48 pm
Thank you all. Well what a huge relief ( and dont i feel silly making my whole family worry – i wish maybe they used different words)
I wasnt allowed to see the path report but he read it to me. Against ulcerated is said not classified and both have a Clarks level II.
Im having the WLE on my neck friday and my toe two weeks later . A Pet scan subject to Insurance approval.
Very relieved and very happy I wont loose my toe – boy the mind is a powerful instrument !
-
- February 17, 2014 at 10:48 pm
Thank you all. Well what a huge relief ( and dont i feel silly making my whole family worry – i wish maybe they used different words)
I wasnt allowed to see the path report but he read it to me. Against ulcerated is said not classified and both have a Clarks level II.
Im having the WLE on my neck friday and my toe two weeks later . A Pet scan subject to Insurance approval.
Very relieved and very happy I wont loose my toe – boy the mind is a powerful instrument !
-
- February 14, 2014 at 3:43 pm
Hopefully the swollen lymph nodes are not related to the melanoma. As this is unkown, they may want to inject a dye that will flow thru the lymph channels from the primary location to determine which is the correct SLN. This can vary for head and neck primarie. This should be done before the WLE is done. They may want to do a needle biopsy to help verify if the swollen lymph nodes contain melanoma. Though a needle biopsy at times is like looking fo a needle in a haystack. Depends on what is at the exact location the needle enters the node.
No, you are NOT a fake! It is syour place to learn aand be vigilant, not paranoid. AS you have stated, you have a couple of extra resons to be concerned outside of "just your own" life: It is possible that the swollen lymph nodes are from some infection. Until you know for sure, yuou have to know wht to expect either way and not be shocked at the last moment. If possible you should have another adult go with you to the Oncologist. None of us could keep everything straight on the first few (years?) visits, there is to much to learn in our NEW world.
http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html
_______________________________
http://www.melanoma.org/understand-melanoma/resource-library/videos-webinarsGod luck and let us know what happens..
Jerry
-
- February 14, 2014 at 1:45 pm
Oh, my goodness, Tickloo! What a distressing way to get such news! I think that everybody who first hears the word "melanoma" applied to them is shot with fear. But you received the news in such a way that you could not really question your doctor about the particulars of the path report, what steps you should follow next or especially about your prognosis. How awful! And to make matters worse, you're sitting there playing with your two young children when you get the news and what is going to be your first thought? "OMG! What's going to happen to my children if I die from this??!!" I'm so sorry, Tickyloo. You really did have a particularly bad and emotionally difficult introduction to melanoma.
But what Janner and the others have said is correct. Try to take a deep breath. Calm down. Take things one step at a time. Melanoma is NOT a death sentence! The vast majority of people who are diagnosed with melanoma have it surgically removed (by what is called a "wide local excision" or WLE) and never see melanoma again. For thin lesions like yours appear to be, that's something like a 95% probability. Keep reminding yourself of that.
Do get a copy of your pathology report and read it. Post it here, if you can. And make sure that a board-certified dermatopathologist wrote the report. If not, have the slides read again by a dermatopathologist. From what you said, your lesions are thin enough that you probably will not need a sentinel node biopsy when they do the WLE. But if you do need an SNL, be sure to go to an experienced head and neck surgeon– there are a lot of lymph nodes in the head and neck so for best results you need a surgical specialist. As Janner said, while it is emotionally difficult to wait for the WLE, studies have shown that delaying the WLE for weeks or even months makes no difference to the outcome. If you need an SNL, wait until you can get an appointment with a head and neck surgeon.
You do not need to get to a melanoma oncologist yet. First review your path report. Then get the results of the WLE. Then you will have the facts on which to base future treatment decisions.
Again, slow down. Take a deep breath. Keep telling yourself that you're going to be OK and your kids are going to be OK because that is most likely to be the outcome.
-
- February 14, 2014 at 1:45 pm
Oh, my goodness, Tickloo! What a distressing way to get such news! I think that everybody who first hears the word "melanoma" applied to them is shot with fear. But you received the news in such a way that you could not really question your doctor about the particulars of the path report, what steps you should follow next or especially about your prognosis. How awful! And to make matters worse, you're sitting there playing with your two young children when you get the news and what is going to be your first thought? "OMG! What's going to happen to my children if I die from this??!!" I'm so sorry, Tickyloo. You really did have a particularly bad and emotionally difficult introduction to melanoma.
But what Janner and the others have said is correct. Try to take a deep breath. Calm down. Take things one step at a time. Melanoma is NOT a death sentence! The vast majority of people who are diagnosed with melanoma have it surgically removed (by what is called a "wide local excision" or WLE) and never see melanoma again. For thin lesions like yours appear to be, that's something like a 95% probability. Keep reminding yourself of that.
Do get a copy of your pathology report and read it. Post it here, if you can. And make sure that a board-certified dermatopathologist wrote the report. If not, have the slides read again by a dermatopathologist. From what you said, your lesions are thin enough that you probably will not need a sentinel node biopsy when they do the WLE. But if you do need an SNL, be sure to go to an experienced head and neck surgeon– there are a lot of lymph nodes in the head and neck so for best results you need a surgical specialist. As Janner said, while it is emotionally difficult to wait for the WLE, studies have shown that delaying the WLE for weeks or even months makes no difference to the outcome. If you need an SNL, wait until you can get an appointment with a head and neck surgeon.
You do not need to get to a melanoma oncologist yet. First review your path report. Then get the results of the WLE. Then you will have the facts on which to base future treatment decisions.
Again, slow down. Take a deep breath. Keep telling yourself that you're going to be OK and your kids are going to be OK because that is most likely to be the outcome.
-
- You must be logged in to reply to this topic.