Melanoma back after 22 years

I couldn't agree with TracyLee more. I have had 4 spots of recurring melanoma on my scalp. Each spot  looked diffferent from the others and none of them looked like "normal" melanoma.  As each spot was biopsied, the surgeon said he would be really surprised if it turned out to be melanoma.  He was wrong  every time.

You know your body. I don't know Canadian healthcare system either but I would be very surprised if they don't test you as soon as possible.

Nicki, Stage 3b, scalp

I couldn't agree with TracyLee more. I have had 4 spots of recurring melanoma on my scalp. Each spot  looked diffferent from the others and none of them looked like "normal" melanoma.  As each spot was biopsied, the surgeon said he would be really surprised if it turned out to be melanoma.  He was wrong  every time.

You know your body. I don't know Canadian healthcare system either but I would be very surprised if they don't test you as soon as possible.

Nicki, Stage 3b, scalp

Yes, I believe BC med would cover the costs- I've been in touch with others who were treated in AB. And my own consultation with Smylie was covered.

Yes, I believe BC med would cover the costs- I've been in touch with others who were treated in AB. And my own consultation with Smylie was covered.

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I agree about hitting it hard but without measurable disease many options are out.  You need to talk to your Dr about getting your blood tested for your HLA factor and also for the B-raf mutation.   Both of these are important pieces to know to get into different trials.

I had multiple primaries but all were caught thin and really never gave it a thought that it would come back, and back and back!  6 recurrances at this time.  However, this year has been remarkable with the progress that has been made for new developments of drugs. 

I agree about hitting it hard but without measurable disease many options are out.  You need to talk to your Dr about getting your blood tested for your HLA factor and also for the B-raf mutation.   Both of these are important pieces to know to get into different trials.

I had multiple primaries but all were caught thin and really never gave it a thought that it would come back, and back and back!  6 recurrances at this time.  However, this year has been remarkable with the progress that has been made for new developments of drugs. 

Wally, I am so proud of you.

Just yesterday or so you first posted on this site and already you are offering encouragement and hope to another.  This is how it works, we give and get HOPE, encouragement and online hugs.

Nicki, Stage 3b, scalp

Wally, I am so proud of you.

Just yesterday or so you first posted on this site and already you are offering encouragement and hope to another.  This is how it works, we give and get HOPE, encouragement and online hugs.

Nicki, Stage 3b, scalp

I'm from Toronto and was diagnosed with Melanoma earlier this year – a bump on my back which was originally diagnosed as a cyst.

You should be seeing a melanoma specialist and they should be prepping you to have the lymph node removed if it's melanoma. It doesn't make sense that you're seeing someone in July and they don't seem to be expediting your situation.  When I was diagnosed by a second dermatologist, they immediately referred me to the melanoma specialist at Princess Margaret and I was scheduled for surgery 3 weeks later.  I never had a sentinel node biopsy – they simply gave me a petscan the day before surgery and took 19 nodes out during surgery.

Lisa

I'm from Toronto and was diagnosed with Melanoma earlier this year – a bump on my back which was originally diagnosed as a cyst.

You should be seeing a melanoma specialist and they should be prepping you to have the lymph node removed if it's melanoma. It doesn't make sense that you're seeing someone in July and they don't seem to be expediting your situation.  When I was diagnosed by a second dermatologist, they immediately referred me to the melanoma specialist at Princess Margaret and I was scheduled for surgery 3 weeks later.  I never had a sentinel node biopsy – they simply gave me a petscan the day before surgery and took 19 nodes out during surgery.

Lisa

How was the melanoma in your lymph node diagnosed?  A clear PETscan is a good sign – it means the cancer hasn't spread which is why the oncologist is having you wait to see someone.  That being said, if the melanoma has been confirmed my pathology, then you should be seeing a melanoma specialist and also a surgical oncologist to have your lymph node removed (along with others that may be in jeopardy.  Don't wait until July, get a referral for a melanoma specialist as your local hospital.

When I was diagnosed, I had a huge golf ball size lump in my groin. My surgical oncologist felt it and said there was very likely cancer in there.  It was very sore and freaking me out. That being said, after 2 biopsies, the lymph node was negative – it was my immune system fighting this off. I ended up having 1 lymph node (beside the swollen one) confirmed with melanoma, but my immune system was doing it's job.  Pain doesn't always mean something is terribly wrong, but to make yourself feel better, please see someone.

How was the melanoma in your lymph node diagnosed?  A clear PETscan is a good sign – it means the cancer hasn't spread which is why the oncologist is having you wait to see someone.  That being said, if the melanoma has been confirmed my pathology, then you should be seeing a melanoma specialist and also a surgical oncologist to have your lymph node removed (along with others that may be in jeopardy.  Don't wait until July, get a referral for a melanoma specialist as your local hospital.

When I was diagnosed, I had a huge golf ball size lump in my groin. My surgical oncologist felt it and said there was very likely cancer in there.  It was very sore and freaking me out. That being said, after 2 biopsies, the lymph node was negative – it was my immune system fighting this off. I ended up having 1 lymph node (beside the swollen one) confirmed with melanoma, but my immune system was doing it's job.  Pain doesn't always mean something is terribly wrong, but to make yourself feel better, please see someone.

Okay, a couple of things. .First…. A 'sentinal node biopsy' is generally done at the time of (just prior to) a 'wide excision' of a primary melanoma. typically a mole or skin lesion. 22 yrs ago, when you had your primary melanoma, no one did sentinal node biopsies.

Here's how that's done, some radioactive dye is injected at the site of the melanoma, and they track the pathway of that substance to the nearest lymph node basin and take out a node or a few, and test them for melanoma to see if it's spread into the lymphatic basin.

If they took a 'lymph node' from you, then they already know it's in your lymphatic system.

But when I read your earlier post (I'll go look at it again) I thought you said it was a 'lump' near your original site.Which sounds more like a subcutaneous tumor, or what they call an 'in-transit' tumor, or sometimes a 'satelite tumor', if it is very close to your original site.

Also, once they went and dug out that lump/bump/lymph node.. lets call it a mass, they interrupted the lymphatic channels, so  there might have been no way for them to do any kind of sentinal node biopsy.

Next, the PET scan. Once they've found melanoma is in your lymphatic system, the next step is to look pretty quick to see if it's already gone somewhere else that you can't see. So that PET scan HAS elimated a few worries. You have no tumors large enough to register on that hiding out in your liver or lungs waiting to knock you down. So it is some good, a diagnositic tool. It can give you false positves (more than false negatives) So other things besides cancer will cause that scan to 'light up' like..scar tissue, or inflammation, other lung diseases.

I don't think a PET ever misses a big mass, but small stuff can elude it. My dad always said 'don't sweat the small stuff' and I try to remember that.

the BIG stuff for you is to get a grip on your disease. You need to find out all you can, get copies of pathology reports, ask your stage, do not stay with a doctor who doesn't care to even fill you in on your own status. Take charge.

So that means learning all you can, and doing all you can to find the best care you can. There are several Canadians on the board, and I hope they can network with you and make sure you find out the best course of action up there, where the system is so differen than here.

Do not go losing hope at this point, or let any medical people lead you that direction. If we understand you correctly, you are currently NED(no evidence of disease) and could stay that way for a long time. But you are at a MUCH higher risk for more advanced melanoma now than you were these last 22 yrs as an early stage patient.

All doctors, here in the US and there in Canada, have WAY too many patients. You have only one patient, so you need to make yourself into the head of your medical team.

dian.

Okay, a couple of things. .First…. A 'sentinal node biopsy' is generally done at the time of (just prior to) a 'wide excision' of a primary melanoma. typically a mole or skin lesion. 22 yrs ago, when you had your primary melanoma, no one did sentinal node biopsies.

Here's how that's done, some radioactive dye is injected at the site of the melanoma, and they track the pathway of that substance to the nearest lymph node basin and take out a node or a few, and test them for melanoma to see if it's spread into the lymphatic basin.

If they took a 'lymph node' from you, then they already know it's in your lymphatic system.

But when I read your earlier post (I'll go look at it again) I thought you said it was a 'lump' near your original site.Which sounds more like a subcutaneous tumor, or what they call an 'in-transit' tumor, or sometimes a 'satelite tumor', if it is very close to your original site.

Also, once they went and dug out that lump/bump/lymph node.. lets call it a mass, they interrupted the lymphatic channels, so  there might have been no way for them to do any kind of sentinal node biopsy.

Next, the PET scan. Once they've found melanoma is in your lymphatic system, the next step is to look pretty quick to see if it's already gone somewhere else that you can't see. So that PET scan HAS elimated a few worries. You have no tumors large enough to register on that hiding out in your liver or lungs waiting to knock you down. So it is some good, a diagnositic tool. It can give you false positves (more than false negatives) So other things besides cancer will cause that scan to 'light up' like..scar tissue, or inflammation, other lung diseases.

I don't think a PET ever misses a big mass, but small stuff can elude it. My dad always said 'don't sweat the small stuff' and I try to remember that.

the BIG stuff for you is to get a grip on your disease. You need to find out all you can, get copies of pathology reports, ask your stage, do not stay with a doctor who doesn't care to even fill you in on your own status. Take charge.

So that means learning all you can, and doing all you can to find the best care you can. There are several Canadians on the board, and I hope they can network with you and make sure you find out the best course of action up there, where the system is so differen than here.

Do not go losing hope at this point, or let any medical people lead you that direction. If we understand you correctly, you are currently NED(no evidence of disease) and could stay that way for a long time. But you are at a MUCH higher risk for more advanced melanoma now than you were these last 22 yrs as an early stage patient.

All doctors, here in the US and there in Canada, have WAY too many patients. You have only one patient, so you need to make yourself into the head of your medical team.

dian.

When I did biochemo in January of this year, I was told it has a 14% response rate. 14 out of 100 people will benefit. Not good odds but somebody has to be in that 14%, why not you?  Unfortunately, I was not in the 14%.

None of our drugs right now have much more than a 30% or so response rate (someone please correct me if I am wrong). So it is worth trying anything we reasonably can in hopes that we can find one that works for us.

Nicki, Stage 3b, scalp

When I did biochemo in January of this year, I was told it has a 14% response rate. 14 out of 100 people will benefit. Not good odds but somebody has to be in that 14%, why not you?  Unfortunately, I was not in the 14%.

None of our drugs right now have much more than a 30% or so response rate (someone please correct me if I am wrong). So it is worth trying anything we reasonably can in hopes that we can find one that works for us.

Nicki, Stage 3b, scalp

My case is a bit unusual in that I had a vulvar melanoma so I saw the team of Gyne-oncologists in Vancouver.  I'm sorry I don't know anything about PET scans…I was told I didn't qualify for a PET and have since had two CT scans in the 20 months since my initial diagnosis.  In my case Dr. Smylie didn't have anything for me (this was in July '10) at stage 3, but did some options if my disease should progress to stage 4 ( a ckit trial and Ipi I think).  Things may have changed since I saw him, worth checking it out I think (also important to note: mucosal mel such as  I had means I don't qualify for some trials)..  I'm very glad I made the trip to Edmonton.  I was able to get a lot of questions answered and for the first time had some hope if the mel should return…there seemed to be no options in BC.

Wishing you well, Mary-Ellen

My case is a bit unusual in that I had a vulvar melanoma so I saw the team of Gyne-oncologists in Vancouver.  I'm sorry I don't know anything about PET scans…I was told I didn't qualify for a PET and have since had two CT scans in the 20 months since my initial diagnosis.  In my case Dr. Smylie didn't have anything for me (this was in July '10) at stage 3, but did some options if my disease should progress to stage 4 ( a ckit trial and Ipi I think).  Things may have changed since I saw him, worth checking it out I think (also important to note: mucosal mel such as  I had means I don't qualify for some trials)..  I'm very glad I made the trip to Edmonton.  I was able to get a lot of questions answered and for the first time had some hope if the mel should return…there seemed to be no options in BC.

Wishing you well, Mary-Ellen

PET/CT scans are not unreliable. If something is picked up on the PET then other scans or biopsies are needed due to false positives.  2 weeks ago the PET picked up a small mass on my arm. Further testing was done and recurrant melanoma was once again found.  If they had done just a ct scan it would most likely not have picked this area up on the arm.  For melanoma they do full body PETS. This way things on the arms and legs are picked up.  The PET does not show masses in the brain, uterus,colon or bladder due to the thickness of the organ or the activity that is already going on in that area. 

Linda

PET/CT scans are not unreliable. If something is picked up on the PET then other scans or biopsies are needed due to false positives.  2 weeks ago the PET picked up a small mass on my arm. Further testing was done and recurrant melanoma was once again found.  If they had done just a ct scan it would most likely not have picked this area up on the arm.  For melanoma they do full body PETS. This way things on the arms and legs are picked up.  The PET does not show masses in the brain, uterus,colon or bladder due to the thickness of the organ or the activity that is already going on in that area. 

Linda