› Forums › General Melanoma Community › Question on Staging
- This topic has 24 replies, 4 voices, and was last updated 11 years, 2 months ago by
JoshF.
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- February 8, 2013 at 10:44 am
Hello Fellow Warriors!
I had a quick question on staging but first let me give you a little background for those not familiar.
Aprill 2011- Small bump in cheek removed by derm. Thought to be sebecaous cyst as skin looked fine. Comes back melanoma and suggested metatstatic melanoma. Find melanoma specialist….PET/CT….negative
May 2011- Wide excision and SLNB. Margins clear and SLNB negative. Oncologist is convinced of unknown primary…thinks it could be primary dermal melanoma….a rare subtype. No further treatment advised.
Hello Fellow Warriors!
I had a quick question on staging but first let me give you a little background for those not familiar.
Aprill 2011- Small bump in cheek removed by derm. Thought to be sebecaous cyst as skin looked fine. Comes back melanoma and suggested metatstatic melanoma. Find melanoma specialist….PET/CT….negative
May 2011- Wide excision and SLNB. Margins clear and SLNB negative. Oncologist is convinced of unknown primary…thinks it could be primary dermal melanoma….a rare subtype. No further treatment advised.
Nov 2011- Feeling uncomfortable…find another melanoma specialist. Wants more aggressive scans….3 months vs 6 months. Finds my case unique but figures I fit more into stage III or IV.
Very confused as you want to believe it was primary but what to fo. Lots of advice….very differing opinions oddly enough from friends who are doctors (university medical vs. private). Whatever I just want to whip this so I continue seeing both but opt for aggressive follow up doing scans every 3 months.
This leads me to my staging question….I have order for scan and see that for diagnosis it says Stage X, pt3a. I have no clue what this means and where I fit in to "staging guidelines". I really hate being an oddball but I have been blessed considering what others are going through or have been through. I visit often as I appreciate the wisdom and logic that is shared on this site. I know scanziety is building (scan is Feb 22nd) and I always keep waiting for shoe to drop. Try to stay positive but nerves do get best of me.
Wisihing you all the best and hoping to hear great things about new treatments on the horizon. My doctors say there are some great advances happening and new treatments aren't far off!!!
Josh
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- February 8, 2013 at 3:09 pm
Unfortunately, stage X is appropriate. Pathology reports can give preliminary staging but typically it is the oncologist who indicates final staging. Pathology reports can only look at the lesion given and doctors can look at the pathology and how it relates to the entire body. So unless you can find doctors who agree on your staging, you are in limbo.
Just an observation, in all the years I've been on this site (10+), I can't recall anyone who had a sub-q metastasis on the face from a distant or unknown primary. There are people who've had local recurrences from a primary on their face. There are those who have a swollen neck node from what might have been a regressed melanoma on their head. But I can't recall anyone presenting with just a sub-q on their face where it was considered to be a metastasis. Hardly scientific, but I just thought I'd throw this out there.
Best wishes,
Janner
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- February 8, 2013 at 3:09 pm
Unfortunately, stage X is appropriate. Pathology reports can give preliminary staging but typically it is the oncologist who indicates final staging. Pathology reports can only look at the lesion given and doctors can look at the pathology and how it relates to the entire body. So unless you can find doctors who agree on your staging, you are in limbo.
Just an observation, in all the years I've been on this site (10+), I can't recall anyone who had a sub-q metastasis on the face from a distant or unknown primary. There are people who've had local recurrences from a primary on their face. There are those who have a swollen neck node from what might have been a regressed melanoma on their head. But I can't recall anyone presenting with just a sub-q on their face where it was considered to be a metastasis. Hardly scientific, but I just thought I'd throw this out there.
Best wishes,
Janner
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- February 8, 2013 at 3:09 pm
Unfortunately, stage X is appropriate. Pathology reports can give preliminary staging but typically it is the oncologist who indicates final staging. Pathology reports can only look at the lesion given and doctors can look at the pathology and how it relates to the entire body. So unless you can find doctors who agree on your staging, you are in limbo.
Just an observation, in all the years I've been on this site (10+), I can't recall anyone who had a sub-q metastasis on the face from a distant or unknown primary. There are people who've had local recurrences from a primary on their face. There are those who have a swollen neck node from what might have been a regressed melanoma on their head. But I can't recall anyone presenting with just a sub-q on their face where it was considered to be a metastasis. Hardly scientific, but I just thought I'd throw this out there.
Best wishes,
Janner
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- February 8, 2013 at 3:57 pm
I just looked up "primary dermal melanoma". Interesting. Right now it just seems to be a theoretical "subtype" and, aside from it's original presentation, it doesn't seem to be fundamentally different from malignant melanoma. That may change in the future as more cases are studied, but as least I learned something new today.
Josh, you do not indicate that you have any metastases. You had this one lesion (possibly? probably?) a primary lesion almost 2 years ago and nothing else has appeared since. Is that correct? Have you had CT and MRI scans (including brain) and they were all negative? If that is the case, you are in the scary place that most of us are in– you are NED but suffering from scanxiety and wanting to be proactive by taking aggressive action. Yervoy (ipi) has been approved for Stage III with unresectable tumors. But if you don't have any tumors, you can't get Yervoy.
I am sorry for your understandable distress. But I don't know what you can do unless and until you get something showing up on a scan.
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- February 8, 2013 at 5:45 pm
By the way, Josh, Harry from Fair Oaks just posted this about a new clinical trial for Stage III. It might be something you could look in to.
"GSK recently announced a study of this combo for Stage III patients:
http://www.gsk.com/media/press-releases/2013/glaxosmithkline-starts-phas…
This will be a Phase III double blind study, with patients randomized to receive either the BRAF/MEK drug combo or placebos. It is something for completely resected Stage III patients to think about, as existing adjuvant therapy options are limited."
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- February 9, 2013 at 2:12 pm
I think you have to BRAF positive which my tumor was not. Not sure if that is good thing or bad thing….sounds like you want to BRAF positive as it opens up more treatment options. That's whay I'm so thankful for all of the knowledable people here….you have all been a blessing.
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- February 9, 2013 at 2:12 pm
I think you have to BRAF positive which my tumor was not. Not sure if that is good thing or bad thing….sounds like you want to BRAF positive as it opens up more treatment options. That's whay I'm so thankful for all of the knowledable people here….you have all been a blessing.
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- February 9, 2013 at 2:12 pm
I think you have to BRAF positive which my tumor was not. Not sure if that is good thing or bad thing….sounds like you want to BRAF positive as it opens up more treatment options. That's whay I'm so thankful for all of the knowledable people here….you have all been a blessing.
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- February 8, 2013 at 5:45 pm
By the way, Josh, Harry from Fair Oaks just posted this about a new clinical trial for Stage III. It might be something you could look in to.
"GSK recently announced a study of this combo for Stage III patients:
http://www.gsk.com/media/press-releases/2013/glaxosmithkline-starts-phas…
This will be a Phase III double blind study, with patients randomized to receive either the BRAF/MEK drug combo or placebos. It is something for completely resected Stage III patients to think about, as existing adjuvant therapy options are limited."
-
- February 8, 2013 at 5:45 pm
By the way, Josh, Harry from Fair Oaks just posted this about a new clinical trial for Stage III. It might be something you could look in to.
"GSK recently announced a study of this combo for Stage III patients:
http://www.gsk.com/media/press-releases/2013/glaxosmithkline-starts-phas…
This will be a Phase III double blind study, with patients randomized to receive either the BRAF/MEK drug combo or placebos. It is something for completely resected Stage III patients to think about, as existing adjuvant therapy options are limited."
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- February 9, 2013 at 2:00 pm
Thanks for all the information. When I has bump taken out of face, the pathology report suggested it was metastatic as there was no epidermal component. So oncologists weren't sure if it was a regressed primary, unknown primary or primary dermal melanoma. That was the tough part to deal with as melanoma is just downright tricky as it is.
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- February 9, 2013 at 2:00 pm
Thanks for all the information. When I has bump taken out of face, the pathology report suggested it was metastatic as there was no epidermal component. So oncologists weren't sure if it was a regressed primary, unknown primary or primary dermal melanoma. That was the tough part to deal with as melanoma is just downright tricky as it is.
-
- February 9, 2013 at 2:00 pm
Thanks for all the information. When I has bump taken out of face, the pathology report suggested it was metastatic as there was no epidermal component. So oncologists weren't sure if it was a regressed primary, unknown primary or primary dermal melanoma. That was the tough part to deal with as melanoma is just downright tricky as it is.
-
- February 8, 2013 at 3:57 pm
I just looked up "primary dermal melanoma". Interesting. Right now it just seems to be a theoretical "subtype" and, aside from it's original presentation, it doesn't seem to be fundamentally different from malignant melanoma. That may change in the future as more cases are studied, but as least I learned something new today.
Josh, you do not indicate that you have any metastases. You had this one lesion (possibly? probably?) a primary lesion almost 2 years ago and nothing else has appeared since. Is that correct? Have you had CT and MRI scans (including brain) and they were all negative? If that is the case, you are in the scary place that most of us are in– you are NED but suffering from scanxiety and wanting to be proactive by taking aggressive action. Yervoy (ipi) has been approved for Stage III with unresectable tumors. But if you don't have any tumors, you can't get Yervoy.
I am sorry for your understandable distress. But I don't know what you can do unless and until you get something showing up on a scan.
-
- February 8, 2013 at 3:57 pm
I just looked up "primary dermal melanoma". Interesting. Right now it just seems to be a theoretical "subtype" and, aside from it's original presentation, it doesn't seem to be fundamentally different from malignant melanoma. That may change in the future as more cases are studied, but as least I learned something new today.
Josh, you do not indicate that you have any metastases. You had this one lesion (possibly? probably?) a primary lesion almost 2 years ago and nothing else has appeared since. Is that correct? Have you had CT and MRI scans (including brain) and they were all negative? If that is the case, you are in the scary place that most of us are in– you are NED but suffering from scanxiety and wanting to be proactive by taking aggressive action. Yervoy (ipi) has been approved for Stage III with unresectable tumors. But if you don't have any tumors, you can't get Yervoy.
I am sorry for your understandable distress. But I don't know what you can do unless and until you get something showing up on a scan.
-
- February 11, 2013 at 10:40 am
was it was a pea sized lump about an inch from your ear?, if so it could have been your parotid gland, we were told at that time it was a metastatic deposit, unkown primary and stage 3c from memory, but that was back in 2006 so staging may have changed since then. I know its hard sometimes but stay positive and look forward to living a long life.
cheers James
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- February 11, 2013 at 10:40 am
was it was a pea sized lump about an inch from your ear?, if so it could have been your parotid gland, we were told at that time it was a metastatic deposit, unkown primary and stage 3c from memory, but that was back in 2006 so staging may have changed since then. I know its hard sometimes but stay positive and look forward to living a long life.
cheers James
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- February 15, 2013 at 12:06 pm
James-
It was pea sized but smack dab in the center of my cheek. Maybe an inch from corner of mouth…doc said not likely a lymph node in that area. Scans next Friday and this puts me close to 2 years….I know anything can happen but I've been told the longer out they better your chances. I try to stay positive but you always wonder when the other shoe will drop. Thanks for reply!!
Josh
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- February 15, 2013 at 12:06 pm
James-
It was pea sized but smack dab in the center of my cheek. Maybe an inch from corner of mouth…doc said not likely a lymph node in that area. Scans next Friday and this puts me close to 2 years….I know anything can happen but I've been told the longer out they better your chances. I try to stay positive but you always wonder when the other shoe will drop. Thanks for reply!!
Josh
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- February 15, 2013 at 12:06 pm
James-
It was pea sized but smack dab in the center of my cheek. Maybe an inch from corner of mouth…doc said not likely a lymph node in that area. Scans next Friday and this puts me close to 2 years….I know anything can happen but I've been told the longer out they better your chances. I try to stay positive but you always wonder when the other shoe will drop. Thanks for reply!!
Josh
-
- February 11, 2013 at 10:40 am
was it was a pea sized lump about an inch from your ear?, if so it could have been your parotid gland, we were told at that time it was a metastatic deposit, unkown primary and stage 3c from memory, but that was back in 2006 so staging may have changed since then. I know its hard sometimes but stay positive and look forward to living a long life.
cheers James
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