› Forums › General Melanoma Community › What Now?
- This topic has 30 replies, 7 voices, and was last updated 9 years, 1 month ago by
Nanners10.
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- April 6, 2016 at 9:52 pm
I have recently been diagnosed (yesterday) with melanoma present in a lymph node in my groin. I previously had a thin melanoma diagnosed 9 years ago 0.65mm treated with WLE. No other treatment was warranted and based on the pathology, treatment would not be different today. I live in Northern California and pursued being seen at Stanford and UCSF clinics just to ease my anxiety after my original diagnosis. Had tried to really move on from the terrifying experience and took the advice of someone on this board to stay off of it unless I needed to be here. Well, 9 years later here I am. Recently I felt a lump in my groin and found out yesterday that it does contain melanoma cells. Met with a oncological surgeon today. I am waiting for insurance approval to move ahead with MRI of brain and PET scan. Hoping that these come back clear. At this point I am hoping someone can point me in the right direction. Should I return to UCSF for consultation there as well? Elsewhere? Suggestions for providers in Northern California? Meeting with surgeon today was in my local area. After clear scans he can do groin dissection in about two weeks. That seems like a long time to wait with cancer in my groin? I want to be sure to receive the very best in treatment and am overwhelmed with trying to care for myself, body and mind, my small children and at the same time making sure that I receive the best medical care available. I have not had the best experience up to this point. Any tips? Ever so grateful and encouraged with success stories on this board.
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- April 6, 2016 at 11:29 pm
Specialists are probably not needed until after your lymph node dissection and scans. Then you know your full status and discussing treatment options at UCSF or another research site would make sense. Two weeks is not a long time to wait for surgery and is unlikely to change anything. Mentally it's tough but medically very acceptable.
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- April 7, 2016 at 1:16 pm
FYI – melanoma typically returns, sometimes to the same site as a previously removed melanoma, 10 years after it has been removed. You are never "out of the woods" after melanoma has been discovered and one must be very deligent in paying attention to changes in your skin and seeing your derm at least twice a year.
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- April 7, 2016 at 1:16 pm
FYI – melanoma typically returns, sometimes to the same site as a previously removed melanoma, 10 years after it has been removed. You are never "out of the woods" after melanoma has been discovered and one must be very deligent in paying attention to changes in your skin and seeing your derm at least twice a year.
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- April 7, 2016 at 1:29 pm
Is that with any cancer or specifically melanoma?
I guess even with thin melanomas people should not be told then that they should be ok, only to have it come back years later. Is it only a matter of when (not if) with this disease once you are diagnosed at any stage? Is melanoma always in your body once you are dx with Melanoma? And why some progress and other don't is all up to a person’s immune system? I thought that the excision surgery "cured" most early stages and cut the cancer out. . but if once you're dx with melanoma it's always in your body is very scary. I thought I had read 97% of Stage I melanoma patients survive.
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- April 7, 2016 at 1:29 pm
Is that with any cancer or specifically melanoma?
I guess even with thin melanomas people should not be told then that they should be ok, only to have it come back years later. Is it only a matter of when (not if) with this disease once you are diagnosed at any stage? Is melanoma always in your body once you are dx with Melanoma? And why some progress and other don't is all up to a person’s immune system? I thought that the excision surgery "cured" most early stages and cut the cancer out. . but if once you're dx with melanoma it's always in your body is very scary. I thought I had read 97% of Stage I melanoma patients survive.
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- April 7, 2016 at 4:12 pm
You are correct, if caught early and removed there is a very high percentage that you'll never deal with melanoma again. Every single person is different and melanoma effects us all differently. For some people they are in that very small unlucky percentage that they had a stage 0 or 1 removed and years later it came back. But, yes, almost all people with those low stages removed survive. They just don't come on this forum often or ever again after removal because they're out living their healthy lives.
🙂
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- April 7, 2016 at 4:12 pm
You are correct, if caught early and removed there is a very high percentage that you'll never deal with melanoma again. Every single person is different and melanoma effects us all differently. For some people they are in that very small unlucky percentage that they had a stage 0 or 1 removed and years later it came back. But, yes, almost all people with those low stages removed survive. They just don't come on this forum often or ever again after removal because they're out living their healthy lives.
🙂
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- April 7, 2016 at 4:12 pm
You are correct, if caught early and removed there is a very high percentage that you'll never deal with melanoma again. Every single person is different and melanoma effects us all differently. For some people they are in that very small unlucky percentage that they had a stage 0 or 1 removed and years later it came back. But, yes, almost all people with those low stages removed survive. They just don't come on this forum often or ever again after removal because they're out living their healthy lives.
🙂
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- April 7, 2016 at 1:29 pm
Is that with any cancer or specifically melanoma?
I guess even with thin melanomas people should not be told then that they should be ok, only to have it come back years later. Is it only a matter of when (not if) with this disease once you are diagnosed at any stage? Is melanoma always in your body once you are dx with Melanoma? And why some progress and other don't is all up to a person’s immune system? I thought that the excision surgery "cured" most early stages and cut the cancer out. . but if once you're dx with melanoma it's always in your body is very scary. I thought I had read 97% of Stage I melanoma patients survive.
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- April 7, 2016 at 1:16 pm
FYI – melanoma typically returns, sometimes to the same site as a previously removed melanoma, 10 years after it has been removed. You are never "out of the woods" after melanoma has been discovered and one must be very deligent in paying attention to changes in your skin and seeing your derm at least twice a year.
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- April 6, 2016 at 11:29 pm
Specialists are probably not needed until after your lymph node dissection and scans. Then you know your full status and discussing treatment options at UCSF or another research site would make sense. Two weeks is not a long time to wait for surgery and is unlikely to change anything. Mentally it's tough but medically very acceptable.
-
- April 6, 2016 at 11:29 pm
Specialists are probably not needed until after your lymph node dissection and scans. Then you know your full status and discussing treatment options at UCSF or another research site would make sense. Two weeks is not a long time to wait for surgery and is unlikely to change anything. Mentally it's tough but medically very acceptable.
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- April 7, 2016 at 1:03 am
Sorry you have to go through all of this. I go to UCSF Melanoma Center and I love it there, they're definitely at the forefront of all the current research and treatments.
All the best,
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- April 7, 2016 at 1:03 am
Sorry you have to go through all of this. I go to UCSF Melanoma Center and I love it there, they're definitely at the forefront of all the current research and treatments.
All the best,
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- April 7, 2016 at 1:03 am
Sorry you have to go through all of this. I go to UCSF Melanoma Center and I love it there, they're definitely at the forefront of all the current research and treatments.
All the best,
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- April 7, 2016 at 11:59 pm
Hello
So sorry you are dealing with this.
My mom recently had a reoccurence, hers showed up in the groin lymph. She originally had care at Stanford. From everyone I have read I would suggest seeinng someone at UCSF and/or Stanford. Needs to be a Melanoma Center. We did an appointment at UCSF recently and they were talking about a special test in relation to the biopsy alone.. so it is good to talk with different places. She actually ended up doing a PET and MRI prior to the biopsy of the groin.
We were very concerned about timing at first … but based on her Pet and MRI results now we are more concerned about figuring out the best treatment and are glad we advocated and put time into talking with 2 Drs. A family friend who had melnoma told us how important it is to figure out the care first before reacting.. choose your people well. And that has been good advice. The groin showed no further growth from the time of ultraound to biopsy (imbetween PEt and MRI) 3 months.. that said we are gearing up for the treatment.
Dr Daud at UCSF and Dr Reddy at Stanford have both been very informative. Heard good things about UCSF in parcitcular on this board. Northern california has some good Melanoma Centers!
Wishing you all the best and clear scans!
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- April 7, 2016 at 11:59 pm
Hello
So sorry you are dealing with this.
My mom recently had a reoccurence, hers showed up in the groin lymph. She originally had care at Stanford. From everyone I have read I would suggest seeinng someone at UCSF and/or Stanford. Needs to be a Melanoma Center. We did an appointment at UCSF recently and they were talking about a special test in relation to the biopsy alone.. so it is good to talk with different places. She actually ended up doing a PET and MRI prior to the biopsy of the groin.
We were very concerned about timing at first … but based on her Pet and MRI results now we are more concerned about figuring out the best treatment and are glad we advocated and put time into talking with 2 Drs. A family friend who had melnoma told us how important it is to figure out the care first before reacting.. choose your people well. And that has been good advice. The groin showed no further growth from the time of ultraound to biopsy (imbetween PEt and MRI) 3 months.. that said we are gearing up for the treatment.
Dr Daud at UCSF and Dr Reddy at Stanford have both been very informative. Heard good things about UCSF in parcitcular on this board. Northern california has some good Melanoma Centers!
Wishing you all the best and clear scans!
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- April 8, 2016 at 2:38 pm
I’m also very sorry that you are dealing with this. I had a very similar experience, came back in my groin lymph node after 12 years. I had the dissection (it took three weeks to get that done) and did ipilumumab after. It came back again in the groin and iliac area the following year. I am now in the middle of doing radiation. My only advice to you would be to try and push for radiation. When it originally came back for me, it was only in one lymph node and contained but it was microscopically. They said radiation was not advised because they felt it was contained to the one lymph node. My recurrence proved that theory wrong. I say go aggressive from the beginning. Maybe if I had had radiation I wouldn’t have recurred. Who knows. Just my two cents. Good luck with your surgery and subsequent decisions! -
- April 8, 2016 at 2:38 pm
I’m also very sorry that you are dealing with this. I had a very similar experience, came back in my groin lymph node after 12 years. I had the dissection (it took three weeks to get that done) and did ipilumumab after. It came back again in the groin and iliac area the following year. I am now in the middle of doing radiation. My only advice to you would be to try and push for radiation. When it originally came back for me, it was only in one lymph node and contained but it was microscopically. They said radiation was not advised because they felt it was contained to the one lymph node. My recurrence proved that theory wrong. I say go aggressive from the beginning. Maybe if I had had radiation I wouldn’t have recurred. Who knows. Just my two cents. Good luck with your surgery and subsequent decisions! -
- April 8, 2016 at 2:38 pm
I’m also very sorry that you are dealing with this. I had a very similar experience, came back in my groin lymph node after 12 years. I had the dissection (it took three weeks to get that done) and did ipilumumab after. It came back again in the groin and iliac area the following year. I am now in the middle of doing radiation. My only advice to you would be to try and push for radiation. When it originally came back for me, it was only in one lymph node and contained but it was microscopically. They said radiation was not advised because they felt it was contained to the one lymph node. My recurrence proved that theory wrong. I say go aggressive from the beginning. Maybe if I had had radiation I wouldn’t have recurred. Who knows. Just my two cents. Good luck with your surgery and subsequent decisions!
-
- April 7, 2016 at 11:59 pm
Hello
So sorry you are dealing with this.
My mom recently had a reoccurence, hers showed up in the groin lymph. She originally had care at Stanford. From everyone I have read I would suggest seeinng someone at UCSF and/or Stanford. Needs to be a Melanoma Center. We did an appointment at UCSF recently and they were talking about a special test in relation to the biopsy alone.. so it is good to talk with different places. She actually ended up doing a PET and MRI prior to the biopsy of the groin.
We were very concerned about timing at first … but based on her Pet and MRI results now we are more concerned about figuring out the best treatment and are glad we advocated and put time into talking with 2 Drs. A family friend who had melnoma told us how important it is to figure out the care first before reacting.. choose your people well. And that has been good advice. The groin showed no further growth from the time of ultraound to biopsy (imbetween PEt and MRI) 3 months.. that said we are gearing up for the treatment.
Dr Daud at UCSF and Dr Reddy at Stanford have both been very informative. Heard good things about UCSF in parcitcular on this board. Northern california has some good Melanoma Centers!
Wishing you all the best and clear scans!
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