› Forums › General Melanoma Community › Just diagnosed..
- This topic has 36 replies, 7 voices, and was last updated 13 years, 10 months ago by
Janner.
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- February 21, 2012 at 8:39 pm
Hi everyone, I found this web page and have been doing some research. I am finding all the info confusing. But one thing I do know is that I am going to be proactive about this.
Hi everyone, I found this web page and have been doing some research. I am finding all the info confusing. But one thing I do know is that I am going to be proactive about this.
I was told 2 days ago that I have Malignant Melanoma. I didn't even get given a copy of my pathology results of the mole that was cut out of my back. I did see a surgeon yesterday and asked him if I could see it. The only info I took in was that it was 1mm and Clark level IV. I have surgery scheduled for tomorrow to cut out 1cm each side of where the mole was. I also wasn't given a 'stage' like I see so many other people have been given.
The surgeon says that is all that should be needed and that I have a 15% chance it could return. Doesn't really sound that great to me, especially when I have a 4 year old and a 1 year old that are the most precious things to me and no way could I stand it if I thought someone else was going to raise them.. No one could love them as much as me and their father couldn't look after them as well as I could lol (I lost my father young and I don't wish that on anyone).
I do remember getting a swollen gland under my armpit recently that took a week or two to go down. Could this be related? My friend recently went to the doctor with swollen glands and a doctor took a mole out from her in case it was related (which it wasn't lucky for her).
What else can I do to be proactive about this. I am starting with diet, lots of fruit and veg and am now officially a non-drinker. Any advice appreciated.
- Replies
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- February 21, 2012 at 8:49 pm
Go to a Melanoma specialist, usually at a univ-affiliated research center. Tell us what state you are in and you will get lots of info, Univ of AZ Med Ctr, Cancer Treatment Center, Tucson. The last relaxed breath i took was before I heard the word melanoma. God bless in your journey.
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- February 21, 2012 at 8:49 pm
Go to a Melanoma specialist, usually at a univ-affiliated research center. Tell us what state you are in and you will get lots of info, Univ of AZ Med Ctr, Cancer Treatment Center, Tucson. The last relaxed breath i took was before I heard the word melanoma. God bless in your journey.
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- February 21, 2012 at 8:49 pm
Go to a Melanoma specialist, usually at a univ-affiliated research center. Tell us what state you are in and you will get lots of info, Univ of AZ Med Ctr, Cancer Treatment Center, Tucson. The last relaxed breath i took was before I heard the word melanoma. God bless in your journey.
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- February 21, 2012 at 9:27 pm
Is your surgeon also going to do a sentinel lymph node biopsy (SNB)? That is typically done for lesions 1mm and greater. I would be asking why he isn't doing it if not. It HAS to be done PRIOR to the wide local excison (WLE – surgery to remove 1 cm margins). You can't do the SNB after the WLE because the WLE may alter the drainage paths to the sentinel node and make it inaccurate. The SNB is done to determine if there is any spread to the first lymph node in the drainage path. Sorry, probably not explaining this well, but THIS HAS TO BE ASKED prior to your surgery tomorrow! Don't worry about diet yet, it's important to get these steps done. THEN you can work on other stuff.
Best wishes,
Janner
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- February 21, 2012 at 9:27 pm
Is your surgeon also going to do a sentinel lymph node biopsy (SNB)? That is typically done for lesions 1mm and greater. I would be asking why he isn't doing it if not. It HAS to be done PRIOR to the wide local excison (WLE – surgery to remove 1 cm margins). You can't do the SNB after the WLE because the WLE may alter the drainage paths to the sentinel node and make it inaccurate. The SNB is done to determine if there is any spread to the first lymph node in the drainage path. Sorry, probably not explaining this well, but THIS HAS TO BE ASKED prior to your surgery tomorrow! Don't worry about diet yet, it's important to get these steps done. THEN you can work on other stuff.
Best wishes,
Janner
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- February 21, 2012 at 11:12 pm
He did mention the SNB (is that where they inject dye or something?) but said he didn't think it was necessary for me. I will call the skin cancer clinic for a second opinion that originally looked me over and told me to get that mole removed (they didn't remove it my local doctor did it as the skin cancer clinic is a 2 hour drive away and I didn't want to drive back there the next day).
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- February 21, 2012 at 11:12 pm
He did mention the SNB (is that where they inject dye or something?) but said he didn't think it was necessary for me. I will call the skin cancer clinic for a second opinion that originally looked me over and told me to get that mole removed (they didn't remove it my local doctor did it as the skin cancer clinic is a 2 hour drive away and I didn't want to drive back there the next day).
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- February 21, 2012 at 11:12 pm
He did mention the SNB (is that where they inject dye or something?) but said he didn't think it was necessary for me. I will call the skin cancer clinic for a second opinion that originally looked me over and told me to get that mole removed (they didn't remove it my local doctor did it as the skin cancer clinic is a 2 hour drive away and I didn't want to drive back there the next day).
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- February 21, 2012 at 11:38 pm
Maybe Australia has different guidelines – or maybe your lesion was really less than 1mm. In the US, 1mm is generally the cutoff for the SNB. Some institutions here will use .76mm. Some use the lower figure if there are other less favorable factors. It's not set in stone. I didn't have one for my .88mm lesion. But typically in the US, a 1mm lesion would have a SNB. You can do what makes YOU feel comfortable, but I'm just pointing this out so you have as much information as possible to make that decision before it's too late. Better to know now and ask questions than find out later and wish things had been done differently.
Best wishes,
Janner
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- February 21, 2012 at 11:38 pm
Maybe Australia has different guidelines – or maybe your lesion was really less than 1mm. In the US, 1mm is generally the cutoff for the SNB. Some institutions here will use .76mm. Some use the lower figure if there are other less favorable factors. It's not set in stone. I didn't have one for my .88mm lesion. But typically in the US, a 1mm lesion would have a SNB. You can do what makes YOU feel comfortable, but I'm just pointing this out so you have as much information as possible to make that decision before it's too late. Better to know now and ask questions than find out later and wish things had been done differently.
Best wishes,
Janner
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- February 21, 2012 at 11:38 pm
Maybe Australia has different guidelines – or maybe your lesion was really less than 1mm. In the US, 1mm is generally the cutoff for the SNB. Some institutions here will use .76mm. Some use the lower figure if there are other less favorable factors. It's not set in stone. I didn't have one for my .88mm lesion. But typically in the US, a 1mm lesion would have a SNB. You can do what makes YOU feel comfortable, but I'm just pointing this out so you have as much information as possible to make that decision before it's too late. Better to know now and ask questions than find out later and wish things had been done differently.
Best wishes,
Janner
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- February 22, 2012 at 1:33 pm
Hi Kelsta – Sorry to hear about your recent diagnosis. I was in your shoes a little over a month ago. I have two children as well, that I am totally in love with. All of the same thoughts ran through my head about their care, so I understand…and it is scary. I agree with some of the advice you have already been given. I had a 1.2 Breslow and the first thing I did was research a Melanoma Specialist surgeon. Typically anything over a .75 or so requires a SNB as well, maybe I am just ‘over’ proactive, but given what I know now about MM and the treatment, I would almost require one. You could even delay the WLE until you can get in to see someone else. I am with Janner on this, I think you need to see someone else prior to that surgery. Good Luck!
Kelli
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- February 22, 2012 at 1:33 pm
Hi Kelsta – Sorry to hear about your recent diagnosis. I was in your shoes a little over a month ago. I have two children as well, that I am totally in love with. All of the same thoughts ran through my head about their care, so I understand…and it is scary. I agree with some of the advice you have already been given. I had a 1.2 Breslow and the first thing I did was research a Melanoma Specialist surgeon. Typically anything over a .75 or so requires a SNB as well, maybe I am just ‘over’ proactive, but given what I know now about MM and the treatment, I would almost require one. You could even delay the WLE until you can get in to see someone else. I am with Janner on this, I think you need to see someone else prior to that surgery. Good Luck!
Kelli
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- February 22, 2012 at 1:33 pm
Hi Kelsta – Sorry to hear about your recent diagnosis. I was in your shoes a little over a month ago. I have two children as well, that I am totally in love with. All of the same thoughts ran through my head about their care, so I understand…and it is scary. I agree with some of the advice you have already been given. I had a 1.2 Breslow and the first thing I did was research a Melanoma Specialist surgeon. Typically anything over a .75 or so requires a SNB as well, maybe I am just ‘over’ proactive, but given what I know now about MM and the treatment, I would almost require one. You could even delay the WLE until you can get in to see someone else. I am with Janner on this, I think you need to see someone else prior to that surgery. Good Luck!
Kelli
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- February 21, 2012 at 9:27 pm
Is your surgeon also going to do a sentinel lymph node biopsy (SNB)? That is typically done for lesions 1mm and greater. I would be asking why he isn't doing it if not. It HAS to be done PRIOR to the wide local excison (WLE – surgery to remove 1 cm margins). You can't do the SNB after the WLE because the WLE may alter the drainage paths to the sentinel node and make it inaccurate. The SNB is done to determine if there is any spread to the first lymph node in the drainage path. Sorry, probably not explaining this well, but THIS HAS TO BE ASKED prior to your surgery tomorrow! Don't worry about diet yet, it's important to get these steps done. THEN you can work on other stuff.
Best wishes,
Janner
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- February 21, 2012 at 11:22 pm
Australia has many fine Melanoma specialists, in fact I understand it has one of the best centers in the world. If it can at all be worked out, and if the surgeon you are seeing is not one, I would recommend you see a Melanoma specialist even if that means traveling. If this is a possibility for you and your doctors aren't willing to refer you, there may be a list on this site or on Melanoma International Foundation.
Best for post care is just eating a gerally healthy diet. Of course being sun wise. Some say to limit red meat and sugar. I personally believe Vit D and Tumeric help. ALSO, GET THOSE KIDS IN THE HABIT OF BEING CAREFUL IN THE SUN!
Good Luck,
Mary
Stage 3
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- February 21, 2012 at 11:22 pm
Australia has many fine Melanoma specialists, in fact I understand it has one of the best centers in the world. If it can at all be worked out, and if the surgeon you are seeing is not one, I would recommend you see a Melanoma specialist even if that means traveling. If this is a possibility for you and your doctors aren't willing to refer you, there may be a list on this site or on Melanoma International Foundation.
Best for post care is just eating a gerally healthy diet. Of course being sun wise. Some say to limit red meat and sugar. I personally believe Vit D and Tumeric help. ALSO, GET THOSE KIDS IN THE HABIT OF BEING CAREFUL IN THE SUN!
Good Luck,
Mary
Stage 3
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- February 21, 2012 at 11:22 pm
Australia has many fine Melanoma specialists, in fact I understand it has one of the best centers in the world. If it can at all be worked out, and if the surgeon you are seeing is not one, I would recommend you see a Melanoma specialist even if that means traveling. If this is a possibility for you and your doctors aren't willing to refer you, there may be a list on this site or on Melanoma International Foundation.
Best for post care is just eating a gerally healthy diet. Of course being sun wise. Some say to limit red meat and sugar. I personally believe Vit D and Tumeric help. ALSO, GET THOSE KIDS IN THE HABIT OF BEING CAREFUL IN THE SUN!
Good Luck,
Mary
Stage 3
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- February 23, 2012 at 10:49 am
Welcome to our forum. I encourage you to obtain a copy of your pathology report and to post the details here.
Swollen glands are commonly caused by infections although they may sometimes be caused by cancer. You will need to have the condition medically evaluated in order to ascertain the cause.
I feel that a good attitude to have is to be vigilant and to have any problems dealt with promptly. One should never be afraid to ask questions and to demand proper answers.
A number of nutritional supplements such as curcumin, omega 3 fish oil, selenium and garlic do seem to have general anticancer properties. In addition, many people appear to be deficient in vitamin D and levels can be easily checked with a blood test.
Hope this helps
Frank from Australia
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- February 23, 2012 at 10:49 am
Welcome to our forum. I encourage you to obtain a copy of your pathology report and to post the details here.
Swollen glands are commonly caused by infections although they may sometimes be caused by cancer. You will need to have the condition medically evaluated in order to ascertain the cause.
I feel that a good attitude to have is to be vigilant and to have any problems dealt with promptly. One should never be afraid to ask questions and to demand proper answers.
A number of nutritional supplements such as curcumin, omega 3 fish oil, selenium and garlic do seem to have general anticancer properties. In addition, many people appear to be deficient in vitamin D and levels can be easily checked with a blood test.
Hope this helps
Frank from Australia
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- February 23, 2012 at 10:49 am
Welcome to our forum. I encourage you to obtain a copy of your pathology report and to post the details here.
Swollen glands are commonly caused by infections although they may sometimes be caused by cancer. You will need to have the condition medically evaluated in order to ascertain the cause.
I feel that a good attitude to have is to be vigilant and to have any problems dealt with promptly. One should never be afraid to ask questions and to demand proper answers.
A number of nutritional supplements such as curcumin, omega 3 fish oil, selenium and garlic do seem to have general anticancer properties. In addition, many people appear to be deficient in vitamin D and levels can be easily checked with a blood test.
Hope this helps
Frank from Australia
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- February 23, 2012 at 7:35 pm
Thanks for the responses everyone. Just to update you. I called the skin cancer clinic that first inspected me and told me the mole had to be cut out to get a second opinion from the doctor there who had a copy of my results.
He made a phone call to the top specialist in Brisbane and asked him to check my results (we live in rural Qld so it's not easy to get to the city). I was told in the USA they always do SNB, in the UK they don't and in Australia it's an option. It will give me more idea of prognosis but no difference to the end result.
Since I was booked in and ready to go, I had the rest of the area cut out yesterday by a surgeon. They will then test this. So for now I am staying positive. For my aftercare I am going to travel to the specialist clinic in Brisbane.. I can't believe how much I have learnt in a matter of 4 days since I got the bad news.
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- February 23, 2012 at 7:35 pm
Thanks for the responses everyone. Just to update you. I called the skin cancer clinic that first inspected me and told me the mole had to be cut out to get a second opinion from the doctor there who had a copy of my results.
He made a phone call to the top specialist in Brisbane and asked him to check my results (we live in rural Qld so it's not easy to get to the city). I was told in the USA they always do SNB, in the UK they don't and in Australia it's an option. It will give me more idea of prognosis but no difference to the end result.
Since I was booked in and ready to go, I had the rest of the area cut out yesterday by a surgeon. They will then test this. So for now I am staying positive. For my aftercare I am going to travel to the specialist clinic in Brisbane.. I can't believe how much I have learnt in a matter of 4 days since I got the bad news.
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- February 23, 2012 at 8:29 pm
When you see your surgeon, ask him to show you how to check your own lymph node basins to look for spread. This is just something you should do monthly like you would do a self skin exam and self breast exam (female). The SNB would catch something much sooner than you finding a palpable node, but you are right that the SNB is a diagnostic tool only and not considered a "treatment" that affects prognosis.
Best wishes,
Janner
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- February 23, 2012 at 8:29 pm
When you see your surgeon, ask him to show you how to check your own lymph node basins to look for spread. This is just something you should do monthly like you would do a self skin exam and self breast exam (female). The SNB would catch something much sooner than you finding a palpable node, but you are right that the SNB is a diagnostic tool only and not considered a "treatment" that affects prognosis.
Best wishes,
Janner
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- February 23, 2012 at 8:29 pm
When you see your surgeon, ask him to show you how to check your own lymph node basins to look for spread. This is just something you should do monthly like you would do a self skin exam and self breast exam (female). The SNB would catch something much sooner than you finding a palpable node, but you are right that the SNB is a diagnostic tool only and not considered a "treatment" that affects prognosis.
Best wishes,
Janner
-
- February 23, 2012 at 7:35 pm
Thanks for the responses everyone. Just to update you. I called the skin cancer clinic that first inspected me and told me the mole had to be cut out to get a second opinion from the doctor there who had a copy of my results.
He made a phone call to the top specialist in Brisbane and asked him to check my results (we live in rural Qld so it's not easy to get to the city). I was told in the USA they always do SNB, in the UK they don't and in Australia it's an option. It will give me more idea of prognosis but no difference to the end result.
Since I was booked in and ready to go, I had the rest of the area cut out yesterday by a surgeon. They will then test this. So for now I am staying positive. For my aftercare I am going to travel to the specialist clinic in Brisbane.. I can't believe how much I have learnt in a matter of 4 days since I got the bad news.
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Tagged: cutaneous melanoma
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