› Forums › General Melanoma Community › Melanoma Stage 3b, Unknown Primary
- This topic has 18 replies, 5 voices, and was last updated 9 years, 10 months ago by
Tina2016.
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- April 19, 2016 at 3:41 am
I was diagnosed with stage 3b melanoma, unknown primary tumor in January 2016. I had noticed a lump in my left groin in November 2015 which was finally biopsied. I had never noticed any suspicious lesions and I have had yearly full body dermatology checks ever since I can remember. I have history of 5 BCC on my chest and back area over the last decade, so I am pretty diligent with all that. The report also showed that I have the BRAF gene. My PET scans have shown no other evidence of disease.
I have seen a medical oncologist and 2 surgical oncologist who have all agreed that I need to have a complete lymph node dissection of my left groin.
I had already been scheduled for a left hip replacement and the doctors agreed that I should have that done first since I was in extreme pain. That was done in February and I have now recovered from that.
My questions is…with all the advances in drug therapies, should I consider getting an opinion from Sloan Memorial, USC, MD Anderson or Moffitt?
The possible complications from complete lymph node dissection have me feeling quite anxious!
Any thoughts or suggestions?
Thank you, this has all been quite overwhelming!
Tina
- Replies
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- April 19, 2016 at 12:54 pm
I'm sorry youre going through this. My husband was diagnosed Stage iv in August. His was atypical with only 3% of the Melanomas acting the way his does. We got a 2nd opionion from Moffit and they have been wonderful and consult regularly with his Oncologist at home. I would recommend them.
God bless
R
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- April 19, 2016 at 12:54 pm
I'm sorry youre going through this. My husband was diagnosed Stage iv in August. His was atypical with only 3% of the Melanomas acting the way his does. We got a 2nd opionion from Moffit and they have been wonderful and consult regularly with his Oncologist at home. I would recommend them.
God bless
R
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- April 19, 2016 at 12:54 pm
I'm sorry youre going through this. My husband was diagnosed Stage iv in August. His was atypical with only 3% of the Melanomas acting the way his does. We got a 2nd opionion from Moffit and they have been wonderful and consult regularly with his Oncologist at home. I would recommend them.
God bless
R
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- April 19, 2016 at 1:12 pm
Hi Tina! I’m sorry that you’ve had to join our board, but you’re in the right place. This is a great support system and a great place to ask questions. So take a deep breath. One step at a time.As for a second opinion, it never hurts to get another set of eyes on your situation. Going to a melanoma specialist will make sure you’re taken care of with up-to-date protocols (and the info out there literally changes week to week).
I’m not sure on protocol for an unknown primary, because a known primary would have a sentinel lymph node biopsy first. Since you already have a confirmed lymph node, you kinda skipped that step. I’m going to have to defer to others on this. But since your PET scan shows no other activity in your groin, you may be able to have a partial lymph node dissection to remove the lymph nodes in the immediate area around your biopsied node.
I had a CLND with 30 nodes removed in December of last year. Im stage IIIc and had both an in-transit met and a palpable lymph node in my groin, so I knew it was right for my treatment. I do have lymphedema in my leg, and although it’s not terrible, I have to wear a compression stocking daily. This is all variable from person to person, though.
Please keep us updated! You’re in my thoughts.
Lauren -
- April 19, 2016 at 1:12 pm
Hi Tina! I’m sorry that you’ve had to join our board, but you’re in the right place. This is a great support system and a great place to ask questions. So take a deep breath. One step at a time.As for a second opinion, it never hurts to get another set of eyes on your situation. Going to a melanoma specialist will make sure you’re taken care of with up-to-date protocols (and the info out there literally changes week to week).
I’m not sure on protocol for an unknown primary, because a known primary would have a sentinel lymph node biopsy first. Since you already have a confirmed lymph node, you kinda skipped that step. I’m going to have to defer to others on this. But since your PET scan shows no other activity in your groin, you may be able to have a partial lymph node dissection to remove the lymph nodes in the immediate area around your biopsied node.
I had a CLND with 30 nodes removed in December of last year. Im stage IIIc and had both an in-transit met and a palpable lymph node in my groin, so I knew it was right for my treatment. I do have lymphedema in my leg, and although it’s not terrible, I have to wear a compression stocking daily. This is all variable from person to person, though.
Please keep us updated! You’re in my thoughts.
Lauren -
- April 19, 2016 at 1:12 pm
Hi Tina! I’m sorry that you’ve had to join our board, but you’re in the right place. This is a great support system and a great place to ask questions. So take a deep breath. One step at a time.As for a second opinion, it never hurts to get another set of eyes on your situation. Going to a melanoma specialist will make sure you’re taken care of with up-to-date protocols (and the info out there literally changes week to week).
I’m not sure on protocol for an unknown primary, because a known primary would have a sentinel lymph node biopsy first. Since you already have a confirmed lymph node, you kinda skipped that step. I’m going to have to defer to others on this. But since your PET scan shows no other activity in your groin, you may be able to have a partial lymph node dissection to remove the lymph nodes in the immediate area around your biopsied node.
I had a CLND with 30 nodes removed in December of last year. Im stage IIIc and had both an in-transit met and a palpable lymph node in my groin, so I knew it was right for my treatment. I do have lymphedema in my leg, and although it’s not terrible, I have to wear a compression stocking daily. This is all variable from person to person, though.
Please keep us updated! You’re in my thoughts.
Lauren -
- April 20, 2016 at 8:37 pm
Hi Tina,
I was dignosed as 3b last May. The removed the original lump under my right arm that I also discovered by the grace of God. That node tested positive for melanoma. After that one lymph node was removed, I had a PET/CT done a couple of days later. The scan came back clear. I had the same decsion to make as to whether or not we do a full lymph node dissection. In my case, it was under my right arm. Based on all the research and opinions I gathered, I opted for the surgery. They removed 28 lymph nodes and 2 tested positive for melanoma. The lymph nodes were 3mm and 5mm so thewy tell me those would not be detectible on my original scan. If I would have opted to do nothing, that cancer would have remained.
I have a little to add about 2nd opinions as well. If you wonder if you should get a 2nd opinion, that alone is reason enough to get a 2nd opinion. Confidence in your care and treatment are extremely important. I am convinced the 2nd opinion I got made a huge difference.
God Bless,
Brad
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- April 20, 2016 at 8:37 pm
Hi Tina,
I was dignosed as 3b last May. The removed the original lump under my right arm that I also discovered by the grace of God. That node tested positive for melanoma. After that one lymph node was removed, I had a PET/CT done a couple of days later. The scan came back clear. I had the same decsion to make as to whether or not we do a full lymph node dissection. In my case, it was under my right arm. Based on all the research and opinions I gathered, I opted for the surgery. They removed 28 lymph nodes and 2 tested positive for melanoma. The lymph nodes were 3mm and 5mm so thewy tell me those would not be detectible on my original scan. If I would have opted to do nothing, that cancer would have remained.
I have a little to add about 2nd opinions as well. If you wonder if you should get a 2nd opinion, that alone is reason enough to get a 2nd opinion. Confidence in your care and treatment are extremely important. I am convinced the 2nd opinion I got made a huge difference.
God Bless,
Brad
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- April 20, 2016 at 8:37 pm
Hi Tina,
I was dignosed as 3b last May. The removed the original lump under my right arm that I also discovered by the grace of God. That node tested positive for melanoma. After that one lymph node was removed, I had a PET/CT done a couple of days later. The scan came back clear. I had the same decsion to make as to whether or not we do a full lymph node dissection. In my case, it was under my right arm. Based on all the research and opinions I gathered, I opted for the surgery. They removed 28 lymph nodes and 2 tested positive for melanoma. The lymph nodes were 3mm and 5mm so thewy tell me those would not be detectible on my original scan. If I would have opted to do nothing, that cancer would have remained.
I have a little to add about 2nd opinions as well. If you wonder if you should get a 2nd opinion, that alone is reason enough to get a 2nd opinion. Confidence in your care and treatment are extremely important. I am convinced the 2nd opinion I got made a huge difference.
God Bless,
Brad
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- April 26, 2016 at 12:43 pm
My story is almost identical to yours. I had a swollen lymph node in my groin that was suspicious and we eventually made the decision to excise it in September 2016. PET scan was clear. I consulted with Vanderbilt and my local doctors and the advice was that surgery is still the most sure treatment of melanoma. After much research and discussion, I had a lymph node dissection about 6 weeks later, but only the lymph nodes in that area. In my case, there were 6 lymph nodes removed and all were negative. In my mind, if it was in the lymph nodes, I just reduced the risk of further spreading, and if they were clear, then I had some good news. I was very lucky in that my initial surgeon referred me to a robotic surgeon so the incision is minimal. I highly recommend you consult with either a robotic surgeon or laproscopic surgeon to avoid the long incision and trauma of traditional surgery. Even so, it will slow you down to a crawl for a few weeks, but still very manageable. Let me know if you have any questions.
Best of luck!!
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- April 26, 2016 at 12:43 pm
My story is almost identical to yours. I had a swollen lymph node in my groin that was suspicious and we eventually made the decision to excise it in September 2016. PET scan was clear. I consulted with Vanderbilt and my local doctors and the advice was that surgery is still the most sure treatment of melanoma. After much research and discussion, I had a lymph node dissection about 6 weeks later, but only the lymph nodes in that area. In my case, there were 6 lymph nodes removed and all were negative. In my mind, if it was in the lymph nodes, I just reduced the risk of further spreading, and if they were clear, then I had some good news. I was very lucky in that my initial surgeon referred me to a robotic surgeon so the incision is minimal. I highly recommend you consult with either a robotic surgeon or laproscopic surgeon to avoid the long incision and trauma of traditional surgery. Even so, it will slow you down to a crawl for a few weeks, but still very manageable. Let me know if you have any questions.
Best of luck!!
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- June 15, 2016 at 9:45 pm
Thanks for all of your posts! I did receive a 2nd opinion but decided to have the CLND done by the initial surgical oncologist. I needed confirmation that the procedure was still the standard of care. I also contacted MSK and Moffitt and they were both very helpful with maling my decision. The other remaining lymph nodes were benign.
It has been just over 4 weeks since my surgery. I continue to have between 60 to 90 CC of output daily so I still have the drainage tube in. I am trying not to rush having it taken out because I don't want to end up with a seroma.
My medical oncologist suggested further systemic treatment and I have been researching clinical trials. The MRF has a Clinical Trial Finder form that I used and they also assigned me to a person as well. It has helped to narrow the field down but it is still a very confusing process!
I understand there are professions where you can actually hire people to help find trials for you? I have tried to research that online but I can only come up with jobs available for research coordinators. Has anyone heard of this?
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- June 15, 2016 at 9:45 pm
Thanks for all of your posts! I did receive a 2nd opinion but decided to have the CLND done by the initial surgical oncologist. I needed confirmation that the procedure was still the standard of care. I also contacted MSK and Moffitt and they were both very helpful with maling my decision. The other remaining lymph nodes were benign.
It has been just over 4 weeks since my surgery. I continue to have between 60 to 90 CC of output daily so I still have the drainage tube in. I am trying not to rush having it taken out because I don't want to end up with a seroma.
My medical oncologist suggested further systemic treatment and I have been researching clinical trials. The MRF has a Clinical Trial Finder form that I used and they also assigned me to a person as well. It has helped to narrow the field down but it is still a very confusing process!
I understand there are professions where you can actually hire people to help find trials for you? I have tried to research that online but I can only come up with jobs available for research coordinators. Has anyone heard of this?
-
- June 15, 2016 at 9:45 pm
Thanks for all of your posts! I did receive a 2nd opinion but decided to have the CLND done by the initial surgical oncologist. I needed confirmation that the procedure was still the standard of care. I also contacted MSK and Moffitt and they were both very helpful with maling my decision. The other remaining lymph nodes were benign.
It has been just over 4 weeks since my surgery. I continue to have between 60 to 90 CC of output daily so I still have the drainage tube in. I am trying not to rush having it taken out because I don't want to end up with a seroma.
My medical oncologist suggested further systemic treatment and I have been researching clinical trials. The MRF has a Clinical Trial Finder form that I used and they also assigned me to a person as well. It has helped to narrow the field down but it is still a very confusing process!
I understand there are professions where you can actually hire people to help find trials for you? I have tried to research that online but I can only come up with jobs available for research coordinators. Has anyone heard of this?
-
- April 26, 2016 at 12:43 pm
My story is almost identical to yours. I had a swollen lymph node in my groin that was suspicious and we eventually made the decision to excise it in September 2016. PET scan was clear. I consulted with Vanderbilt and my local doctors and the advice was that surgery is still the most sure treatment of melanoma. After much research and discussion, I had a lymph node dissection about 6 weeks later, but only the lymph nodes in that area. In my case, there were 6 lymph nodes removed and all were negative. In my mind, if it was in the lymph nodes, I just reduced the risk of further spreading, and if they were clear, then I had some good news. I was very lucky in that my initial surgeon referred me to a robotic surgeon so the incision is minimal. I highly recommend you consult with either a robotic surgeon or laproscopic surgeon to avoid the long incision and trauma of traditional surgery. Even so, it will slow you down to a crawl for a few weeks, but still very manageable. Let me know if you have any questions.
Best of luck!!
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