› Forums › General Melanoma Community › Metastatic vs Primary
- This topic has 24 replies, 6 voices, and was last updated 10 years, 2 months ago by
AnnG.
- Post
-
- January 28, 2014 at 5:16 pm
I have a very unusal presentation–one Dr said he could count on one hand the number of patients he has seen. PLEASE reach out to me if you have had a similar diagnosis or are a professional and can offer advice.
July 2013 diagnosed with cyst on back. Insisted on seeing dermatologist again two weeks later. Attempt to drain found pigmented soft tissue so had punch biopsy. Path report metastatic malignant melanoma Stage 4. No primary site found. Pet/CT scan normal. Bloodwork normal. MRI of brain normal. Eye exam normal. Surgery August 2013. Unable to locate sentinel node. Clear margins. Melanoma deep (into dermis and hypodermis) All path reports have concurred metastatic except one Dr who believes this tumor was the primary. This changes the Staging.
After surgery adjuvent therapy recommended as preventative. Interferon alpha 2b infusions 5x a week for 20 treatments. After two weeks, reduced dosage by 50% due to liver abnormailites. Then 6 weeks of self injections of Interferon-stopped due to recent problem.
Petscan last week showed a spot under arm same side of body as original tumor. Surgeon and oncologist are assuming it is melanoma in regional lymph node. Approx size 1/2 inch. No distant metastases.
Surgery scheduled for this Friday removal of lymph nodes under arm.
Can anyone comment on my presentation?
- Replies
-
-
- January 28, 2014 at 6:56 pm
Hi Ann,
I'm glad you found this website and sorry you have been diagnosed with mel. You will find amazing help from all the people here, who have been touched by melanoma.
Your situation sounds very much like mine and yes, it's unusual, but has been described similarly by many others on this website who discovered their mel in a similar way . Basically, the primary was never discovered, perhaps it was in a place that was not easily viewed. For myself, looking back 5 years prior to my diagnosis, I do remember something on my back that was checked by a doctor and called a blood blister and later it fell off. I'm almost certain that was the first melanoma and was misdiagnosed. When the first subcutaneous bump appeared, that too was misdiagnosed as a "dermato fibroma" by both a GP and my dermatologist. After removal, path reports indicated metestatic melanoma, and both doctors were truly shocked as they had never seen it present itself this way. I think this particular situation is misdiagnosed a lot because usually these patients didn't have any previous skin cancer diagnosis. The good news is that patients with a diagnosis of "stage IV, no primary" usually fair better than those who did have a primary. I am 4 years out from my original diagnosis and doing fairly well. I just had a right axilla LND (lymphnode dissection), removing 25 lymphnodes, 13 were present with mel. Hope this helps and sending positive thoughts for a smooth and successful surgery!
Swanee
-
- January 28, 2014 at 6:56 pm
Hi Ann,
I'm glad you found this website and sorry you have been diagnosed with mel. You will find amazing help from all the people here, who have been touched by melanoma.
Your situation sounds very much like mine and yes, it's unusual, but has been described similarly by many others on this website who discovered their mel in a similar way . Basically, the primary was never discovered, perhaps it was in a place that was not easily viewed. For myself, looking back 5 years prior to my diagnosis, I do remember something on my back that was checked by a doctor and called a blood blister and later it fell off. I'm almost certain that was the first melanoma and was misdiagnosed. When the first subcutaneous bump appeared, that too was misdiagnosed as a "dermato fibroma" by both a GP and my dermatologist. After removal, path reports indicated metestatic melanoma, and both doctors were truly shocked as they had never seen it present itself this way. I think this particular situation is misdiagnosed a lot because usually these patients didn't have any previous skin cancer diagnosis. The good news is that patients with a diagnosis of "stage IV, no primary" usually fair better than those who did have a primary. I am 4 years out from my original diagnosis and doing fairly well. I just had a right axilla LND (lymphnode dissection), removing 25 lymphnodes, 13 were present with mel. Hope this helps and sending positive thoughts for a smooth and successful surgery!
Swanee
-
- January 28, 2014 at 6:56 pm
Hi Ann,
I'm glad you found this website and sorry you have been diagnosed with mel. You will find amazing help from all the people here, who have been touched by melanoma.
Your situation sounds very much like mine and yes, it's unusual, but has been described similarly by many others on this website who discovered their mel in a similar way . Basically, the primary was never discovered, perhaps it was in a place that was not easily viewed. For myself, looking back 5 years prior to my diagnosis, I do remember something on my back that was checked by a doctor and called a blood blister and later it fell off. I'm almost certain that was the first melanoma and was misdiagnosed. When the first subcutaneous bump appeared, that too was misdiagnosed as a "dermato fibroma" by both a GP and my dermatologist. After removal, path reports indicated metestatic melanoma, and both doctors were truly shocked as they had never seen it present itself this way. I think this particular situation is misdiagnosed a lot because usually these patients didn't have any previous skin cancer diagnosis. The good news is that patients with a diagnosis of "stage IV, no primary" usually fair better than those who did have a primary. I am 4 years out from my original diagnosis and doing fairly well. I just had a right axilla LND (lymphnode dissection), removing 25 lymphnodes, 13 were present with mel. Hope this helps and sending positive thoughts for a smooth and successful surgery!
Swanee
-
- January 29, 2014 at 12:30 am
Hi Ann,
My husband's melanoma was originally diagnosed as a cyst but instead of draining it the dermatologist removed it. The pathology report came back as yours – metastatic, Stage 4. We went to see Dr. Scharfman at Johns Hopkins, a leading melanoma clinical researcher, and he called it a melanoma of unknown primary (one of his specialties). PET scan showed no activity elsewhere in the body. The sentinel node biopsy was clear, and the wide local excision had clear margins. However, it was big enough to require plastic surgery, and it was pretty deep. We saw another top researcher, Lynn Schuchter at U. of Pennsylvania, and she agreed that this was probably not metastatic disease. It was staged at 2B. There's lots more about our case on my blog – feel free to browse there if you want to know more.
Are you seeing a melanoma specialist at a Melanoma Center of Excellence? If not, is there one near you? There are so many new treatments, and not all oncologists are up on them, so it would be good for you to consult with someone at one of the centers of excellence. They are listed at: http://melanomainternational.org/web-resources/cancer-centers/#.UuhKKdIo5dg
Good luck – and keep us posted on your progress.
~Hazel
-
- January 30, 2014 at 12:29 am
First it sounds like it is Clarks level 4 not Stagte IV. While melanoma is refered to as metastatic melanoma. This is really just saying that melanoma is highly capable if spreadimg, mores so than many cancers. It is only stage IV if cells metatizzie from a primary to distant sites/organs beyond the next lymph node basin.
-
- January 30, 2014 at 12:47 am
if in thw lymph noswa itwill be at the Stage III level. Was the "surgery adjuvent therapy" what is normally known as the WLE (Wide Local Excision) which is normally done to get clear margins after the removed tissue is looked at by a dermapathjologist and determined to cantain melanoma cells?
-
- January 30, 2014 at 3:59 pm
From the MRF website
The term 'metastatic melanoma', also known as stage IV melanoma, is used when melanoma cells of any kind (cutaneous, mucosal or ocular) have spread through the lymph nodes to distant sites in the body and/or to the body's organs. The liver, lungs, bones and brain are most often affected by these metastases.
-
- January 30, 2014 at 3:59 pm
From the MRF website
The term 'metastatic melanoma', also known as stage IV melanoma, is used when melanoma cells of any kind (cutaneous, mucosal or ocular) have spread through the lymph nodes to distant sites in the body and/or to the body's organs. The liver, lungs, bones and brain are most often affected by these metastases.
-
- January 30, 2014 at 3:59 pm
From the MRF website
The term 'metastatic melanoma', also known as stage IV melanoma, is used when melanoma cells of any kind (cutaneous, mucosal or ocular) have spread through the lymph nodes to distant sites in the body and/or to the body's organs. The liver, lungs, bones and brain are most often affected by these metastases.
-
- January 31, 2014 at 7:25 am
Anonymous one, where does the posting show distant sites. It says "Petscan last week showed a spot under arm same side of body as original tumor. Surgeon and oncologist are assuming it is melanoma in regional lymph node. Approx size 1/2 inch. No distant metastases."
Where do you see anydata that shows a Stage IV?
regional lymph node would indicate a possible Stage 3, if verified as melanoma there.
-
- January 31, 2014 at 7:25 am
Anonymous one, where does the posting show distant sites. It says "Petscan last week showed a spot under arm same side of body as original tumor. Surgeon and oncologist are assuming it is melanoma in regional lymph node. Approx size 1/2 inch. No distant metastases."
Where do you see anydata that shows a Stage IV?
regional lymph node would indicate a possible Stage 3, if verified as melanoma there.
-
- January 31, 2014 at 7:25 am
Anonymous one, where does the posting show distant sites. It says "Petscan last week showed a spot under arm same side of body as original tumor. Surgeon and oncologist are assuming it is melanoma in regional lymph node. Approx size 1/2 inch. No distant metastases."
Where do you see anydata that shows a Stage IV?
regional lymph node would indicate a possible Stage 3, if verified as melanoma there.
-
- January 30, 2014 at 12:47 am
if in thw lymph noswa itwill be at the Stage III level. Was the "surgery adjuvent therapy" what is normally known as the WLE (Wide Local Excision) which is normally done to get clear margins after the removed tissue is looked at by a dermapathjologist and determined to cantain melanoma cells?
-
- January 30, 2014 at 12:47 am
if in thw lymph noswa itwill be at the Stage III level. Was the "surgery adjuvent therapy" what is normally known as the WLE (Wide Local Excision) which is normally done to get clear margins after the removed tissue is looked at by a dermapathjologist and determined to cantain melanoma cells?
-
- January 30, 2014 at 12:29 am
First it sounds like it is Clarks level 4 not Stagte IV. While melanoma is refered to as metastatic melanoma. This is really just saying that melanoma is highly capable if spreadimg, mores so than many cancers. It is only stage IV if cells metatizzie from a primary to distant sites/organs beyond the next lymph node basin.
-
- January 30, 2014 at 12:29 am
First it sounds like it is Clarks level 4 not Stagte IV. While melanoma is refered to as metastatic melanoma. This is really just saying that melanoma is highly capable if spreadimg, mores so than many cancers. It is only stage IV if cells metatizzie from a primary to distant sites/organs beyond the next lymph node basin.
-
- January 29, 2014 at 12:30 am
Hi Ann,
My husband's melanoma was originally diagnosed as a cyst but instead of draining it the dermatologist removed it. The pathology report came back as yours – metastatic, Stage 4. We went to see Dr. Scharfman at Johns Hopkins, a leading melanoma clinical researcher, and he called it a melanoma of unknown primary (one of his specialties). PET scan showed no activity elsewhere in the body. The sentinel node biopsy was clear, and the wide local excision had clear margins. However, it was big enough to require plastic surgery, and it was pretty deep. We saw another top researcher, Lynn Schuchter at U. of Pennsylvania, and she agreed that this was probably not metastatic disease. It was staged at 2B. There's lots more about our case on my blog – feel free to browse there if you want to know more.
Are you seeing a melanoma specialist at a Melanoma Center of Excellence? If not, is there one near you? There are so many new treatments, and not all oncologists are up on them, so it would be good for you to consult with someone at one of the centers of excellence. They are listed at: http://melanomainternational.org/web-resources/cancer-centers/#.UuhKKdIo5dg
Good luck – and keep us posted on your progress.
~Hazel
-
- January 29, 2014 at 12:30 am
Hi Ann,
My husband's melanoma was originally diagnosed as a cyst but instead of draining it the dermatologist removed it. The pathology report came back as yours – metastatic, Stage 4. We went to see Dr. Scharfman at Johns Hopkins, a leading melanoma clinical researcher, and he called it a melanoma of unknown primary (one of his specialties). PET scan showed no activity elsewhere in the body. The sentinel node biopsy was clear, and the wide local excision had clear margins. However, it was big enough to require plastic surgery, and it was pretty deep. We saw another top researcher, Lynn Schuchter at U. of Pennsylvania, and she agreed that this was probably not metastatic disease. It was staged at 2B. There's lots more about our case on my blog – feel free to browse there if you want to know more.
Are you seeing a melanoma specialist at a Melanoma Center of Excellence? If not, is there one near you? There are so many new treatments, and not all oncologists are up on them, so it would be good for you to consult with someone at one of the centers of excellence. They are listed at: http://melanomainternational.org/web-resources/cancer-centers/#.UuhKKdIo5dg
Good luck – and keep us posted on your progress.
~Hazel
-
- January 31, 2014 at 12:19 pm
I am one of those few also. I was diagnosed at Stage 4, unknown primary. I was fortunate. During a routine CT for unrelated issues, the scan revealed a tumor in my sacrum, which turned out to be Melanoma. I've never had any visible lesions, no problems ever, until then. I am however, blessed, as I have been NED follwing surgery (and localized Gamma radiation during resection) for over 5-1/2 years now.
-
- January 31, 2014 at 12:19 pm
I am one of those few also. I was diagnosed at Stage 4, unknown primary. I was fortunate. During a routine CT for unrelated issues, the scan revealed a tumor in my sacrum, which turned out to be Melanoma. I've never had any visible lesions, no problems ever, until then. I am however, blessed, as I have been NED follwing surgery (and localized Gamma radiation during resection) for over 5-1/2 years now.
-
- January 31, 2014 at 12:19 pm
I am one of those few also. I was diagnosed at Stage 4, unknown primary. I was fortunate. During a routine CT for unrelated issues, the scan revealed a tumor in my sacrum, which turned out to be Melanoma. I've never had any visible lesions, no problems ever, until then. I am however, blessed, as I have been NED follwing surgery (and localized Gamma radiation during resection) for over 5-1/2 years now.
-
- February 6, 2014 at 12:09 am
Thanks to all who replied.
Surgery went well and I'm pretty sore but managing with Tylenol.
Pathology report showed melanoma limited to one lymph node. All others free of cancer. The tumor board at University of Rochester will review my case next week and then I'll see the Oncologist.
Does anyone in this unique group have a great melanoma specialist they would recommend? I did go to Univ Pittsburgh for another opinion in September before starting Interferon but that was not helpful. I didn't feel the Dr was treating me-more interested in getting me to participate in a trial.
Thank you
-
- February 6, 2014 at 12:09 am
Thanks to all who replied.
Surgery went well and I'm pretty sore but managing with Tylenol.
Pathology report showed melanoma limited to one lymph node. All others free of cancer. The tumor board at University of Rochester will review my case next week and then I'll see the Oncologist.
Does anyone in this unique group have a great melanoma specialist they would recommend? I did go to Univ Pittsburgh for another opinion in September before starting Interferon but that was not helpful. I didn't feel the Dr was treating me-more interested in getting me to participate in a trial.
Thank you
-
- February 6, 2014 at 12:09 am
Thanks to all who replied.
Surgery went well and I'm pretty sore but managing with Tylenol.
Pathology report showed melanoma limited to one lymph node. All others free of cancer. The tumor board at University of Rochester will review my case next week and then I'll see the Oncologist.
Does anyone in this unique group have a great melanoma specialist they would recommend? I did go to Univ Pittsburgh for another opinion in September before starting Interferon but that was not helpful. I didn't feel the Dr was treating me-more interested in getting me to participate in a trial.
Thank you
-
- You must be logged in to reply to this topic.