› Forums › General Melanoma Community › Tentative Plan For Salivary Gland Spread
- This topic has 18 replies, 4 voices, and was last updated 10 years, 8 months ago by
hawaii marcus.
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- August 23, 2013 at 3:43 am
so the FNA of mass in Salivary gland came back as Metastatic Melanoma
I saw Oncologist yesterday at UCLA
I asked the basic "right" questions…what he would consider this? reoccorence? Sat Met? Node? or just a MET in local region? or MET to distant organ?
He didnt want to answer any of this right now nor did he want to stage it….obviously we are at stage 3 but
so the FNA of mass in Salivary gland came back as Metastatic Melanoma
I saw Oncologist yesterday at UCLA
I asked the basic "right" questions…what he would consider this? reoccorence? Sat Met? Node? or just a MET in local region? or MET to distant organ?
He didnt want to answer any of this right now nor did he want to stage it….obviously we are at stage 3 but
he wants a PET and then surgery to get in there and find out if the entire Parotid Salivary Gland is consumed? Or is it just a piece? or even possibly is it a node or group of nodes in the Salivary Gland itself. He also wants the tissue for Braf testing.
So it will be a Parotidectody (sp) and Lymphdectomy (sp)
He said after the scan and the surgery he will be able to actually use the pathology and surgery info to clearify what we are dealing wih and then move on to treatment.
Does everyone agree with this?
He did say no matter what they find he will recommend I start treatment after the surgey.
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- August 23, 2013 at 11:41 am
Is he going to test for c-kit too?
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- August 23, 2013 at 11:41 am
Is he going to test for c-kit too?
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- August 23, 2013 at 11:41 am
Is he going to test for c-kit too?
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- August 23, 2013 at 12:01 pm
Matt, I'm glad that you are seeing a melanoma specialist who has enough training and experience to realize that melanoma could have affected your salivary gland in a number of different ways. Rather than just jumping to a conclusion and announcing "Stage III!" or "Stage IV!" he wants to look at this met very carefully so he can make an informed decision.
I know that the waiting is the hardest part and you just want a staging diagnosis so that you can move forward with a treatment plan. But in my opinion, you've got a good doctor there and you should trust him about this.
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- August 23, 2013 at 12:01 pm
Matt, I'm glad that you are seeing a melanoma specialist who has enough training and experience to realize that melanoma could have affected your salivary gland in a number of different ways. Rather than just jumping to a conclusion and announcing "Stage III!" or "Stage IV!" he wants to look at this met very carefully so he can make an informed decision.
I know that the waiting is the hardest part and you just want a staging diagnosis so that you can move forward with a treatment plan. But in my opinion, you've got a good doctor there and you should trust him about this.
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- August 23, 2013 at 12:01 pm
Matt, I'm glad that you are seeing a melanoma specialist who has enough training and experience to realize that melanoma could have affected your salivary gland in a number of different ways. Rather than just jumping to a conclusion and announcing "Stage III!" or "Stage IV!" he wants to look at this met very carefully so he can make an informed decision.
I know that the waiting is the hardest part and you just want a staging diagnosis so that you can move forward with a treatment plan. But in my opinion, you've got a good doctor there and you should trust him about this.
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- August 25, 2013 at 11:47 am
Yes, should be tested for unless has been tested for BRAF and found to be BRAF positive. BRAF mutatioins and C-kit mutations are mutually exclusive. Search for C-kit on the MPIP BB and you will find other posts I have made. Also in my profile.
http://www.curetoday.com/index.cfm/fuseaction/news.showNewsArticle/id/5/news_id/3194
Many more references available. C-kit oncoprotein and or mutations are very likely in mucosal tumors. I have a c-kit mutation. Imitial test is a local lab test for the c.-kit oncoprotein (cqn be done overnight), then an indepth DNA mutation tests should be done in a specialied lab. (Two weeks or more to do.)
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- September 3, 2013 at 8:02 pm
Hi Matt,
I have no experience with salivary glands, but wish you all the best! Keep up the fight!
I have mucosal melanoma, and live in Honolulu, HI. But I went to UCLA for my Left Nasal Lateral Rhinotomy. I had a great experience there. They are a top notch facility, and great melanoma doctors.
I personally saw Head and Neck surgeon, Elliott Abemayor, and Oncologist John Glaspy. Hawaii only has 2 Head and Neck Oncology surgeons, so I chose a second opinion at UCLA. So happy I did!
I returned to Hawaii for radiation to my nose at The Queen's Medical Center. They have HiArt Tomotherapy which was excellent for radiation therapy near my eyes. I only had fatigue as major side effect.
I wish you and your family the best, and just wanted to give you a supportive thumbs up for UCLA!
Aloha,
Marcus
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- September 3, 2013 at 8:02 pm
Hi Matt,
I have no experience with salivary glands, but wish you all the best! Keep up the fight!
I have mucosal melanoma, and live in Honolulu, HI. But I went to UCLA for my Left Nasal Lateral Rhinotomy. I had a great experience there. They are a top notch facility, and great melanoma doctors.
I personally saw Head and Neck surgeon, Elliott Abemayor, and Oncologist John Glaspy. Hawaii only has 2 Head and Neck Oncology surgeons, so I chose a second opinion at UCLA. So happy I did!
I returned to Hawaii for radiation to my nose at The Queen's Medical Center. They have HiArt Tomotherapy which was excellent for radiation therapy near my eyes. I only had fatigue as major side effect.
I wish you and your family the best, and just wanted to give you a supportive thumbs up for UCLA!
Aloha,
Marcus
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- September 3, 2013 at 8:02 pm
Hi Matt,
I have no experience with salivary glands, but wish you all the best! Keep up the fight!
I have mucosal melanoma, and live in Honolulu, HI. But I went to UCLA for my Left Nasal Lateral Rhinotomy. I had a great experience there. They are a top notch facility, and great melanoma doctors.
I personally saw Head and Neck surgeon, Elliott Abemayor, and Oncologist John Glaspy. Hawaii only has 2 Head and Neck Oncology surgeons, so I chose a second opinion at UCLA. So happy I did!
I returned to Hawaii for radiation to my nose at The Queen's Medical Center. They have HiArt Tomotherapy which was excellent for radiation therapy near my eyes. I only had fatigue as major side effect.
I wish you and your family the best, and just wanted to give you a supportive thumbs up for UCLA!
Aloha,
Marcus
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- August 25, 2013 at 3:46 am
Cool. Yes I do trust him and of course i want those answers but i understand that from a small needle tissue sample he simply won't know everything yet.
He told me he needs the surgeon to pull the "tumor" and healthy tissue of the salivary gland…to see if it is attached, consumed or a node in the gland …plus all the other nodes in the neck will need to be checked. All that makes sense to me and could infact be the difference between stage III and IV and the difference between an unresectable tumor and determine the follow on treatment.
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- August 25, 2013 at 3:46 am
Cool. Yes I do trust him and of course i want those answers but i understand that from a small needle tissue sample he simply won't know everything yet.
He told me he needs the surgeon to pull the "tumor" and healthy tissue of the salivary gland…to see if it is attached, consumed or a node in the gland …plus all the other nodes in the neck will need to be checked. All that makes sense to me and could infact be the difference between stage III and IV and the difference between an unresectable tumor and determine the follow on treatment.
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- August 25, 2013 at 3:46 am
Cool. Yes I do trust him and of course i want those answers but i understand that from a small needle tissue sample he simply won't know everything yet.
He told me he needs the surgeon to pull the "tumor" and healthy tissue of the salivary gland…to see if it is attached, consumed or a node in the gland …plus all the other nodes in the neck will need to be checked. All that makes sense to me and could infact be the difference between stage III and IV and the difference between an unresectable tumor and determine the follow on treatment.
-
- August 25, 2013 at 11:47 am
Yes, should be tested for unless has been tested for BRAF and found to be BRAF positive. BRAF mutatioins and C-kit mutations are mutually exclusive. Search for C-kit on the MPIP BB and you will find other posts I have made. Also in my profile.
http://www.curetoday.com/index.cfm/fuseaction/news.showNewsArticle/id/5/news_id/3194
Many more references available. C-kit oncoprotein and or mutations are very likely in mucosal tumors. I have a c-kit mutation. Imitial test is a local lab test for the c.-kit oncoprotein (cqn be done overnight), then an indepth DNA mutation tests should be done in a specialied lab. (Two weeks or more to do.)
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- August 25, 2013 at 11:47 am
Yes, should be tested for unless has been tested for BRAF and found to be BRAF positive. BRAF mutatioins and C-kit mutations are mutually exclusive. Search for C-kit on the MPIP BB and you will find other posts I have made. Also in my profile.
http://www.curetoday.com/index.cfm/fuseaction/news.showNewsArticle/id/5/news_id/3194
Many more references available. C-kit oncoprotein and or mutations are very likely in mucosal tumors. I have a c-kit mutation. Imitial test is a local lab test for the c.-kit oncoprotein (cqn be done overnight), then an indepth DNA mutation tests should be done in a specialied lab. (Two weeks or more to do.)
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