› Forums › General Melanoma Community › Stage III scalp / neck from Toronto. Is a month too long a wait, should I see specialist, and other questions…
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O_O.
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- April 9, 2014 at 10:19 pm
Hey, so at the beginning of this year they found my primary in my scalp. About a month ago I had a skin graft and sentinel lymph node removed from the back of my neck.
The lymph node (which was large enough that I discovered it myself) came back positive. Since the surgery (it's been about a month), they found a new lump right under y ear. This was not there immediately before the surgery and is now large enough that I can see it in the mirror.
My surgery is to be scheduled in about a month.
Some questions:
* It feels like a whole month is a really long wait, considering this new lump came in so quickly. Should I be pushing for a sooner date, or is this normal?
* I am being treated at the Princess Margaret ENT Clinic in Toronto and have so far met the surgeon and a radiattion therapy Dr., should I be looking for a melanoma specialist in the Toronto area? Should I have met with an oncologist already? What information should I be asking for?
I had already spent a year walking around with these tumors because both my family doctors and the walk-in clinic I had asked told me they were "nothing to worry about," until I demanded to see a dermatologist and to have the lump biopsied; so I'm not comfortable just sitting back and waiting if there's something more that can/should be done.
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- April 10, 2014 at 3:15 am
Hi,
My 2cents worth: Definitely look for a melanoma specialist. Stage 3 qualifies as advanced melanoma . As tricky as this disease can be, you want the most qualified and specialized help in your battle. As for the surgery, I had my SNB November 9th 2011 and had my follow up surgery (TLND of the groin) February 4th 2012. In my case it was due to inflammation from the SNB and probably clean PET and CAT scans helped. If you have doubts, ask your doctor directly his assessment of the risk by waiting the month. Good luck! Lots of good info on this board
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- April 10, 2014 at 3:15 am
Hi,
My 2cents worth: Definitely look for a melanoma specialist. Stage 3 qualifies as advanced melanoma . As tricky as this disease can be, you want the most qualified and specialized help in your battle. As for the surgery, I had my SNB November 9th 2011 and had my follow up surgery (TLND of the groin) February 4th 2012. In my case it was due to inflammation from the SNB and probably clean PET and CAT scans helped. If you have doubts, ask your doctor directly his assessment of the risk by waiting the month. Good luck! Lots of good info on this board
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- April 10, 2014 at 3:15 am
Hi,
My 2cents worth: Definitely look for a melanoma specialist. Stage 3 qualifies as advanced melanoma . As tricky as this disease can be, you want the most qualified and specialized help in your battle. As for the surgery, I had my SNB November 9th 2011 and had my follow up surgery (TLND of the groin) February 4th 2012. In my case it was due to inflammation from the SNB and probably clean PET and CAT scans helped. If you have doubts, ask your doctor directly his assessment of the risk by waiting the month. Good luck! Lots of good info on this board
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- April 10, 2014 at 3:40 am
Thanks. I am very happy with the surgeon and his team. And I would rather keep treating this surgically and avoid any nasty treatments as much as possible. But at the same time I want to talk to a melanoma specialist who can give me enogh information to know where I stand and what all my options are.
My biggest concern is the cognitive side effects from some treatments (like radiation to the head). Any other risks I don't care so much. Throw whatever they want at this thing. (And hey, scars are cool right? — skin grafts not so much though… maybe in Halloween lol).
Good luck on your treatment. Hope your scans are looking good.
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- April 10, 2014 at 3:40 am
Thanks. I am very happy with the surgeon and his team. And I would rather keep treating this surgically and avoid any nasty treatments as much as possible. But at the same time I want to talk to a melanoma specialist who can give me enogh information to know where I stand and what all my options are.
My biggest concern is the cognitive side effects from some treatments (like radiation to the head). Any other risks I don't care so much. Throw whatever they want at this thing. (And hey, scars are cool right? — skin grafts not so much though… maybe in Halloween lol).
Good luck on your treatment. Hope your scans are looking good.
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- April 10, 2014 at 3:40 am
Thanks. I am very happy with the surgeon and his team. And I would rather keep treating this surgically and avoid any nasty treatments as much as possible. But at the same time I want to talk to a melanoma specialist who can give me enogh information to know where I stand and what all my options are.
My biggest concern is the cognitive side effects from some treatments (like radiation to the head). Any other risks I don't care so much. Throw whatever they want at this thing. (And hey, scars are cool right? — skin grafts not so much though… maybe in Halloween lol).
Good luck on your treatment. Hope your scans are looking good.
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- April 10, 2014 at 4:33 pm
Sorry you hava to deal with this. And a month is way too long to wait. I would recommend findidng a melanoma specialist and make sure that you see a radiation onologist too.
You don't mention if you've had a MRI of the brain. If you didn't have one demand one. If you had you need to have them look at the images. NOT the report. I advocate a second and third opinions based on my experience with my Mom's treatment (stage IV). – The first radiologist MISSED the brain cancer and a neuro-oncologist MISSED 4 tumors after gamma knife treatment.
Get copies of all reports and make sure you get any images on CD's as soon as they are taken. – We usually get the images the same day with the reports following a few days later.
If you have brain cancer I'd consider gamma knife radiation. My Mom had 8 tumors in December and they all look to be necrotic (dead) now. She has 5 more and will have gamma knife treatment very soon. She didn't have much in the way of side effects. A few sores and a eyelid dropped for a while, but it is fine now.
Ask about genetic testing. You want to know if you are positive for BRAF gene. This gives you other treatment options. (If others in your family have had melanoma it is more likely that you have the gene. Both my sister and I had melanoma before my Mom and her sister.)
Bring someone with you who can be your advocate. You want some who can keep track of everything and is sharp as a tack.
My Mom was put on Yervoy (it can help with brain mets if you have them). She is off this now and it looks like she will be put on a BRAF and Mek Inhibitor.
Treatments today can really help.
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- April 10, 2014 at 4:33 pm
Sorry you hava to deal with this. And a month is way too long to wait. I would recommend findidng a melanoma specialist and make sure that you see a radiation onologist too.
You don't mention if you've had a MRI of the brain. If you didn't have one demand one. If you had you need to have them look at the images. NOT the report. I advocate a second and third opinions based on my experience with my Mom's treatment (stage IV). – The first radiologist MISSED the brain cancer and a neuro-oncologist MISSED 4 tumors after gamma knife treatment.
Get copies of all reports and make sure you get any images on CD's as soon as they are taken. – We usually get the images the same day with the reports following a few days later.
If you have brain cancer I'd consider gamma knife radiation. My Mom had 8 tumors in December and they all look to be necrotic (dead) now. She has 5 more and will have gamma knife treatment very soon. She didn't have much in the way of side effects. A few sores and a eyelid dropped for a while, but it is fine now.
Ask about genetic testing. You want to know if you are positive for BRAF gene. This gives you other treatment options. (If others in your family have had melanoma it is more likely that you have the gene. Both my sister and I had melanoma before my Mom and her sister.)
Bring someone with you who can be your advocate. You want some who can keep track of everything and is sharp as a tack.
My Mom was put on Yervoy (it can help with brain mets if you have them). She is off this now and it looks like she will be put on a BRAF and Mek Inhibitor.
Treatments today can really help.
-
- April 10, 2014 at 4:33 pm
Sorry you hava to deal with this. And a month is way too long to wait. I would recommend findidng a melanoma specialist and make sure that you see a radiation onologist too.
You don't mention if you've had a MRI of the brain. If you didn't have one demand one. If you had you need to have them look at the images. NOT the report. I advocate a second and third opinions based on my experience with my Mom's treatment (stage IV). – The first radiologist MISSED the brain cancer and a neuro-oncologist MISSED 4 tumors after gamma knife treatment.
Get copies of all reports and make sure you get any images on CD's as soon as they are taken. – We usually get the images the same day with the reports following a few days later.
If you have brain cancer I'd consider gamma knife radiation. My Mom had 8 tumors in December and they all look to be necrotic (dead) now. She has 5 more and will have gamma knife treatment very soon. She didn't have much in the way of side effects. A few sores and a eyelid dropped for a while, but it is fine now.
Ask about genetic testing. You want to know if you are positive for BRAF gene. This gives you other treatment options. (If others in your family have had melanoma it is more likely that you have the gene. Both my sister and I had melanoma before my Mom and her sister.)
Bring someone with you who can be your advocate. You want some who can keep track of everything and is sharp as a tack.
My Mom was put on Yervoy (it can help with brain mets if you have them). She is off this now and it looks like she will be put on a BRAF and Mek Inhibitor.
Treatments today can really help.
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