› Forums › General Melanoma Community › Deciding on which treatment is next?
- This topic has 57 replies, 7 voices, and was last updated 13 years ago by
GaylaB.
- Post
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- August 15, 2012 at 2:35 am
I was diagnosed on 7-12-12
Had WLE and SNB on 8-1-12 at Emory, just got path report today which is SO confusing.
Clinical stage is IIA, T3, N0
However due to the 2nd node shows scattered subcapsular immunopositive cells and immunistains for S100 are negative there was a comment attached that stated "Multiple recuts and melan-A immunostains do not resolve the issue of whether the immunopositve cells in part B represent metastic melanoma or nevus, metastatic tumor cannot be excluded.
2 pathologists came to the same assessment
I was diagnosed on 7-12-12
Had WLE and SNB on 8-1-12 at Emory, just got path report today which is SO confusing.
Clinical stage is IIA, T3, N0
However due to the 2nd node shows scattered subcapsular immunopositive cells and immunistains for S100 are negative there was a comment attached that stated "Multiple recuts and melan-A immunostains do not resolve the issue of whether the immunopositve cells in part B represent metastic melanoma or nevus, metastatic tumor cannot be excluded.
2 pathologists came to the same assessment
This additional information made my surgeon restage my cancer to stage III and has scheduled PET and complete lymph node removal of the groin (20 nodes) on August 29.
Only 2 nodes were removed at SNB.
Margins of WLE are clear and although we thought we had GOOD news with the stage IIA, after she changed it to III we became extremely distraught.
Any info you can give would be appreciated!
God still performs Miracles,
Gayla
- Replies
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- August 15, 2012 at 2:50 am
Even though two pathologists looked at this, they were both from the same institution and probably work together regularly. (Pretty common to have multiple eyes on any path at a larger institution). However, this is one of those times that I, personally, would probably send my slides to another place to get another set of eyes. The conclusion is unclear – they can't say for certain it is metastatic but they can't say it isn't. I think I would feel better having another set of eyes give their opinion. If it is the same, then you go with it. If it's different, then you evaluate your options. You may still do the same treatment either way erring on the side of caution, but I'd personally feel better with that second opinion from a different lab – preferably a major melanoma center.
Best wishes,
Janner
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- August 15, 2012 at 2:50 am
Even though two pathologists looked at this, they were both from the same institution and probably work together regularly. (Pretty common to have multiple eyes on any path at a larger institution). However, this is one of those times that I, personally, would probably send my slides to another place to get another set of eyes. The conclusion is unclear – they can't say for certain it is metastatic but they can't say it isn't. I think I would feel better having another set of eyes give their opinion. If it is the same, then you go with it. If it's different, then you evaluate your options. You may still do the same treatment either way erring on the side of caution, but I'd personally feel better with that second opinion from a different lab – preferably a major melanoma center.
Best wishes,
Janner
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- August 15, 2012 at 2:50 am
Even though two pathologists looked at this, they were both from the same institution and probably work together regularly. (Pretty common to have multiple eyes on any path at a larger institution). However, this is one of those times that I, personally, would probably send my slides to another place to get another set of eyes. The conclusion is unclear – they can't say for certain it is metastatic but they can't say it isn't. I think I would feel better having another set of eyes give their opinion. If it is the same, then you go with it. If it's different, then you evaluate your options. You may still do the same treatment either way erring on the side of caution, but I'd personally feel better with that second opinion from a different lab – preferably a major melanoma center.
Best wishes,
Janner
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- August 15, 2012 at 4:26 pm
Janner is absolutely right. You need to get a second instution involved before you go through a complete lymph node dissection, especially of the groin. It could be as simple as pathologists covering their butts. Ask for a referral to a melanoma specialist, your oncologists should not be offended.
Good Luck,
Mary
Stage 3
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- August 15, 2012 at 5:20 pm
I had 2 pathologists review the report from Emory- both agreed to do the complete lymph node dissection based on the path report from Emory.
How bad is a complete lymph node dissection? Physically? Mentally? Will I return to work? Any info I would appreciate. PET scan will be before surgery…waiting on PET date, surgery is 8-29-12.
How do I get the slides for another institution to review? Just ask for them to send them or physically take them myself- might be a nutty question, 🙂
Thanks!
Gayla -
- August 15, 2012 at 7:25 pm
My PET is tomorrow at 8 am- they said results from that come within 24 hours, then I will know from my nose to my toes was the nurses words:)
Still concerned about complete node dissection but I suppose it is what it is, I just have to believe a miracle is coming my way, for me, my husband and 6 year old beautiful son:)
Keeping the faith!Gayla
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- August 15, 2012 at 9:38 pm
I had 37 nodes removed from pelvis, groin and top part of Rt leg in 2010. I would ask about a new minimally invasive node dissection technique being tested and whether they can use that. And where EXACTLY they will take the nodes from.In my case they removed nodes from around my abdominal organs and down the inside of my rt leg, also moving a muscle that attached to the front of my hip to now connect to my lower pelvis to protect this area since the Femoral artery was much more exposed.
Hope this doesn’t scare you, it was rough but I would definitely do it again! Still here and fighting, stage 4, cardiac met, currently on Zelboraf.
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- August 16, 2012 at 2:04 am
Did they do a PET before your surgery?
Glad you are still here and fighting:)
That’s my plan as well- simply not ready to go- going to get a prayer pager and every time a prayer is said for me- they page me and lift my spirits!
I think this is a wonderful idea- I believe I will be healed
Gayla -
- August 16, 2012 at 2:47 am
You HAVE to get a PET. I had a PET and also had a CT of the area – abdominal and prob leg. I don’t see anywhere in here that you are seeing a melanoma oncologist? Have you just been talking to the surgeon and the pathologist? Maybe this is the weak link in the chain here. I depend on my oncologist to interpret all the gobbledygook English that comes back from test results of any kind. You wouldn’t believe some of the things I’ve read and thought “Now what on God’s Green Earth does that even mean??” I have NEVER talked to a pathologist and the onc I have know is awesome at coordinating with all my other ologists behind the scenes. -
- August 16, 2012 at 2:47 am
You HAVE to get a PET. I had a PET and also had a CT of the area – abdominal and prob leg. I don’t see anywhere in here that you are seeing a melanoma oncologist? Have you just been talking to the surgeon and the pathologist? Maybe this is the weak link in the chain here. I depend on my oncologist to interpret all the gobbledygook English that comes back from test results of any kind. You wouldn’t believe some of the things I’ve read and thought “Now what on God’s Green Earth does that even mean??” I have NEVER talked to a pathologist and the onc I have know is awesome at coordinating with all my other ologists behind the scenes. -
- August 16, 2012 at 2:47 am
You HAVE to get a PET. I had a PET and also had a CT of the area – abdominal and prob leg. I don’t see anywhere in here that you are seeing a melanoma oncologist? Have you just been talking to the surgeon and the pathologist? Maybe this is the weak link in the chain here. I depend on my oncologist to interpret all the gobbledygook English that comes back from test results of any kind. You wouldn’t believe some of the things I’ve read and thought “Now what on God’s Green Earth does that even mean??” I have NEVER talked to a pathologist and the onc I have know is awesome at coordinating with all my other ologists behind the scenes. -
- August 16, 2012 at 2:04 am
Did they do a PET before your surgery?
Glad you are still here and fighting:)
That’s my plan as well- simply not ready to go- going to get a prayer pager and every time a prayer is said for me- they page me and lift my spirits!
I think this is a wonderful idea- I believe I will be healed
Gayla -
- August 16, 2012 at 2:04 am
Did they do a PET before your surgery?
Glad you are still here and fighting:)
That’s my plan as well- simply not ready to go- going to get a prayer pager and every time a prayer is said for me- they page me and lift my spirits!
I think this is a wonderful idea- I believe I will be healed
Gayla -
- August 15, 2012 at 9:38 pm
I had 37 nodes removed from pelvis, groin and top part of Rt leg in 2010. I would ask about a new minimally invasive node dissection technique being tested and whether they can use that. And where EXACTLY they will take the nodes from.In my case they removed nodes from around my abdominal organs and down the inside of my rt leg, also moving a muscle that attached to the front of my hip to now connect to my lower pelvis to protect this area since the Femoral artery was much more exposed.
Hope this doesn’t scare you, it was rough but I would definitely do it again! Still here and fighting, stage 4, cardiac met, currently on Zelboraf.
-
- August 15, 2012 at 9:38 pm
I had 37 nodes removed from pelvis, groin and top part of Rt leg in 2010. I would ask about a new minimally invasive node dissection technique being tested and whether they can use that. And where EXACTLY they will take the nodes from.In my case they removed nodes from around my abdominal organs and down the inside of my rt leg, also moving a muscle that attached to the front of my hip to now connect to my lower pelvis to protect this area since the Femoral artery was much more exposed.
Hope this doesn’t scare you, it was rough but I would definitely do it again! Still here and fighting, stage 4, cardiac met, currently on Zelboraf.
-
- August 15, 2012 at 7:25 pm
My PET is tomorrow at 8 am- they said results from that come within 24 hours, then I will know from my nose to my toes was the nurses words:)
Still concerned about complete node dissection but I suppose it is what it is, I just have to believe a miracle is coming my way, for me, my husband and 6 year old beautiful son:)
Keeping the faith!Gayla
-
- August 15, 2012 at 7:25 pm
My PET is tomorrow at 8 am- they said results from that come within 24 hours, then I will know from my nose to my toes was the nurses words:)
Still concerned about complete node dissection but I suppose it is what it is, I just have to believe a miracle is coming my way, for me, my husband and 6 year old beautiful son:)
Keeping the faith!Gayla
-
- August 15, 2012 at 5:20 pm
I had 2 pathologists review the report from Emory- both agreed to do the complete lymph node dissection based on the path report from Emory.
How bad is a complete lymph node dissection? Physically? Mentally? Will I return to work? Any info I would appreciate. PET scan will be before surgery…waiting on PET date, surgery is 8-29-12.
How do I get the slides for another institution to review? Just ask for them to send them or physically take them myself- might be a nutty question, 🙂
Thanks!
Gayla -
- August 15, 2012 at 5:20 pm
I had 2 pathologists review the report from Emory- both agreed to do the complete lymph node dissection based on the path report from Emory.
How bad is a complete lymph node dissection? Physically? Mentally? Will I return to work? Any info I would appreciate. PET scan will be before surgery…waiting on PET date, surgery is 8-29-12.
How do I get the slides for another institution to review? Just ask for them to send them or physically take them myself- might be a nutty question, 🙂
Thanks!
Gayla
-
- August 15, 2012 at 4:26 pm
Janner is absolutely right. You need to get a second instution involved before you go through a complete lymph node dissection, especially of the groin. It could be as simple as pathologists covering their butts. Ask for a referral to a melanoma specialist, your oncologists should not be offended.
Good Luck,
Mary
Stage 3
-
- August 15, 2012 at 4:26 pm
Janner is absolutely right. You need to get a second instution involved before you go through a complete lymph node dissection, especially of the groin. It could be as simple as pathologists covering their butts. Ask for a referral to a melanoma specialist, your oncologists should not be offended.
Good Luck,
Mary
Stage 3
-
- August 16, 2012 at 1:25 am
An accurate treatment plan first requires an accurate diagnosis, not speculation. Would you repair a car without knowing what the problem was?
Get a third opinion and get it from a dermapathologist .
As the name implies,a dermapath ONLY looks at and tests skin biopsies……………….nothing else. As such, they are most adept at sorting out and granulating pesky suspect melanoma lesions..
Not dissing the folks at Emory, they should know what they are doing, but sometimes it is just scientifically difficult to reach a consensus fillled diagnosis and warrants caution before agreeing to a treatment plan.
Can't put my finger on the video, but the MRF did a Symposium three years ago and one of the featured speakers was a dermapath who addressed cases EXACTLY like yours and the importance of accurate diagnosis.
Bottom line? Get a dermapath as a third opinion. Any treatment plan is premature at this point because you lack an accurate diagnosis.
Hope this helps.
Charlie S
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- August 16, 2012 at 2:08 am
Wow , would love to see that video.
I was so confused to have one stage on the pathology report (IIA) and then re-staged by surgeon to III because of the fact they could not exclude the unknown cell as being melanoma
Will post results of PET- wish me luck!Gayla..
-
- August 17, 2012 at 12:07 pm
Should have PET results today…
Complete node dissection still scheduled for the 29th-
Wondering if PET were to show clear, would complete dissection still be the plan with a “questionable” node since mine could not be ruled positive for nevus or melanoma 1 was totally clear and 1 was questionable during the SNB when they did the WLE. -
- August 17, 2012 at 12:57 pm
A PET scan does not show microscopic disease. Tumors typically have to be about 1cm or larger to show up on a PET scan. So, really, the PET scan will most likely not influence the decision to have the LND or not – it's looking to see if you have measurable disease elsewhere in the body. If your docs are treating this as stage III, then they will most likely recommend the LND regardless of the PET scan results as a LND is standard protocol with a positive SNB. The only other scenario I could see would be to ask for ultrasound monitoring of the lymph node basin. There was a clinical trial comparing this method to LND in stage IIIA disease for those who only had one positive node with very little disease. I'm not sure the clinical trial has ever been completed because I've never seen results published. Anyway, it is another option you could discuss. You still get to make the decisions and you don't have to have the LND. But most likely, your docs will recommend the "standard" LND and it will have to be your decision to deviate.
Janner
-
- August 18, 2012 at 3:52 pm
PET was all clear! But still moving forward with the complete node dissection- finally all healed from WLE and SNB, now going back on the 29th. I believe this surgery will be worse by far from first one.. Any experience of the nodes removed in groin, please share your experience and helpful tips with me- I have a 6 year old, no family help except my husband who must continue to work since I certainly cannot right now!
And what about long term- any long term things I should expect?
Thanks for the info!
Gayla
Stage III -
- August 22, 2012 at 12:27 pm
6 days until complete lymph node dissection- trying to build my immune system as best as I can-
Had a nurse tll me yesterday to throw a lot of pineapple into my juice for a couple days before as it will reduce swelling.
I am 20 days past WLE on right thigh and SNB right groin- completely healed from that one- was not near as long recovery as I expected.
Any advice on the complete node dissection of the groin ?
I am juicing, taking Dr David Williams supplements, Essiac, Levive, organic cottage cheese with flax seed oil and following Bill Hendersons cancer diet
If you have had the groin complete dissection- any advice would be welcome!Gayla
Stage III -
- August 22, 2012 at 8:22 pm
My top 100 USA Melanoma Surgeon and researcher spend much time on my groin operation. The PET showed extensive inguinal and Iliac involvement. I was warned that he would follow the node chains and get reports from the pathologist during the operation to determine how extensive to go. Using this method he was able to determine that my melanoma lymph nodes followed the path down my abdominal side and he did not have to go far down my thigh. This kept them from having to rebuilt a flap to protect my majorthigh blood pathways and also reduced the damage to my Lymph pathways. Yes it took seven hours on the operating table and extensive work inside and outside of the omentum. The great side of this work was that I have had no problems with lymphedema after healing from the operation in 2007. I was building a deck 30 days after the operation (Still had my second drain in). This was draining up to 400 ml of fluids (YUK) a day. The first drain was removed after 2 weeks when its drainage rate dropped to below 20 ml per day. The less damage to the lymph channels the less chances of lymphedema during the coming years. Elevation of the affected limb is very important, especially in the months following the operation. One problem is determining the proper amount of usage in the limb since the movement of the muscles is what "pumps" the lymph fluid up the channels to above the heart. (Don't have a "heart type pump" for lymph fluid.) To reformat lymph pathages requires movement, but controlled, and elevation of the limb at rest is also very importantt. Be sure that you get a referral to a lymphedema massage specialist to teach you how to do seelf massages to help restore the lymph flow.
How Complete is the "complete" lymph node removal to be? Good luck.
-
- August 22, 2012 at 8:22 pm
My top 100 USA Melanoma Surgeon and researcher spend much time on my groin operation. The PET showed extensive inguinal and Iliac involvement. I was warned that he would follow the node chains and get reports from the pathologist during the operation to determine how extensive to go. Using this method he was able to determine that my melanoma lymph nodes followed the path down my abdominal side and he did not have to go far down my thigh. This kept them from having to rebuilt a flap to protect my majorthigh blood pathways and also reduced the damage to my Lymph pathways. Yes it took seven hours on the operating table and extensive work inside and outside of the omentum. The great side of this work was that I have had no problems with lymphedema after healing from the operation in 2007. I was building a deck 30 days after the operation (Still had my second drain in). This was draining up to 400 ml of fluids (YUK) a day. The first drain was removed after 2 weeks when its drainage rate dropped to below 20 ml per day. The less damage to the lymph channels the less chances of lymphedema during the coming years. Elevation of the affected limb is very important, especially in the months following the operation. One problem is determining the proper amount of usage in the limb since the movement of the muscles is what "pumps" the lymph fluid up the channels to above the heart. (Don't have a "heart type pump" for lymph fluid.) To reformat lymph pathages requires movement, but controlled, and elevation of the limb at rest is also very importantt. Be sure that you get a referral to a lymphedema massage specialist to teach you how to do seelf massages to help restore the lymph flow.
How Complete is the "complete" lymph node removal to be? Good luck.
-
- August 22, 2012 at 8:22 pm
My top 100 USA Melanoma Surgeon and researcher spend much time on my groin operation. The PET showed extensive inguinal and Iliac involvement. I was warned that he would follow the node chains and get reports from the pathologist during the operation to determine how extensive to go. Using this method he was able to determine that my melanoma lymph nodes followed the path down my abdominal side and he did not have to go far down my thigh. This kept them from having to rebuilt a flap to protect my majorthigh blood pathways and also reduced the damage to my Lymph pathways. Yes it took seven hours on the operating table and extensive work inside and outside of the omentum. The great side of this work was that I have had no problems with lymphedema after healing from the operation in 2007. I was building a deck 30 days after the operation (Still had my second drain in). This was draining up to 400 ml of fluids (YUK) a day. The first drain was removed after 2 weeks when its drainage rate dropped to below 20 ml per day. The less damage to the lymph channels the less chances of lymphedema during the coming years. Elevation of the affected limb is very important, especially in the months following the operation. One problem is determining the proper amount of usage in the limb since the movement of the muscles is what "pumps" the lymph fluid up the channels to above the heart. (Don't have a "heart type pump" for lymph fluid.) To reformat lymph pathages requires movement, but controlled, and elevation of the limb at rest is also very importantt. Be sure that you get a referral to a lymphedema massage specialist to teach you how to do seelf massages to help restore the lymph flow.
How Complete is the "complete" lymph node removal to be? Good luck.
-
- August 24, 2012 at 3:36 am
Mine is 20 nodes in the right groin area, I don’t know how many are positive, guess that will be determined after the surgery?
In my biopsy, I had 1 that contained suspicious cells that could not be determined if it was nevus or melanoma- that is why the dissection is necessary.
Recovered from WLE and SNB. rather quick and feel great!Gayla
Stage III
KEEPING THE FAITH! -
- August 24, 2012 at 3:36 am
Mine is 20 nodes in the right groin area, I don’t know how many are positive, guess that will be determined after the surgery?
In my biopsy, I had 1 that contained suspicious cells that could not be determined if it was nevus or melanoma- that is why the dissection is necessary.
Recovered from WLE and SNB. rather quick and feel great!Gayla
Stage III
KEEPING THE FAITH! -
- August 24, 2012 at 3:36 am
Mine is 20 nodes in the right groin area, I don’t know how many are positive, guess that will be determined after the surgery?
In my biopsy, I had 1 that contained suspicious cells that could not be determined if it was nevus or melanoma- that is why the dissection is necessary.
Recovered from WLE and SNB. rather quick and feel great!Gayla
Stage III
KEEPING THE FAITH! -
- August 22, 2012 at 12:27 pm
6 days until complete lymph node dissection- trying to build my immune system as best as I can-
Had a nurse tll me yesterday to throw a lot of pineapple into my juice for a couple days before as it will reduce swelling.
I am 20 days past WLE on right thigh and SNB right groin- completely healed from that one- was not near as long recovery as I expected.
Any advice on the complete node dissection of the groin ?
I am juicing, taking Dr David Williams supplements, Essiac, Levive, organic cottage cheese with flax seed oil and following Bill Hendersons cancer diet
If you have had the groin complete dissection- any advice would be welcome!Gayla
Stage III -
- August 22, 2012 at 12:27 pm
6 days until complete lymph node dissection- trying to build my immune system as best as I can-
Had a nurse tll me yesterday to throw a lot of pineapple into my juice for a couple days before as it will reduce swelling.
I am 20 days past WLE on right thigh and SNB right groin- completely healed from that one- was not near as long recovery as I expected.
Any advice on the complete node dissection of the groin ?
I am juicing, taking Dr David Williams supplements, Essiac, Levive, organic cottage cheese with flax seed oil and following Bill Hendersons cancer diet
If you have had the groin complete dissection- any advice would be welcome!Gayla
Stage III -
- August 18, 2012 at 3:52 pm
PET was all clear! But still moving forward with the complete node dissection- finally all healed from WLE and SNB, now going back on the 29th. I believe this surgery will be worse by far from first one.. Any experience of the nodes removed in groin, please share your experience and helpful tips with me- I have a 6 year old, no family help except my husband who must continue to work since I certainly cannot right now!
And what about long term- any long term things I should expect?
Thanks for the info!
Gayla
Stage III -
- August 18, 2012 at 3:52 pm
PET was all clear! But still moving forward with the complete node dissection- finally all healed from WLE and SNB, now going back on the 29th. I believe this surgery will be worse by far from first one.. Any experience of the nodes removed in groin, please share your experience and helpful tips with me- I have a 6 year old, no family help except my husband who must continue to work since I certainly cannot right now!
And what about long term- any long term things I should expect?
Thanks for the info!
Gayla
Stage III -
- August 25, 2012 at 9:40 am
The clinical trial has not ben completed yet. I was given all of the paperwork for the trial after my SNB turned up 1 node with a microscopic amount of melanoma (my surgical oncologist is the lead investigator at my clinic for the trial – http://www.seattlecca.org/clinical-trials/melanoma-NCT00389571.cfm)
However, I was not eligible due to already having a messed up immune system due to ulcerative colitis. But fortunately my doctor said I could go ahead and choose to follow the observation branch of the trial on my own (versus removing all of my nodes). This is what I am doing for now. I will have my first ultrasound of the groin area next month. I think this was the right choice for me because I ended up getting a nasty infection after my WLE and ended up in the hospital for 4 days. The thought of having a more invasive surgery with all sorts of possible complications was really scary (because of the colitis… I don't heal very well). So long story short… observation is what I am doing. The bad news is that I'm not sure yet if my insurance will cover it….
-
- August 25, 2012 at 9:40 am
The clinical trial has not ben completed yet. I was given all of the paperwork for the trial after my SNB turned up 1 node with a microscopic amount of melanoma (my surgical oncologist is the lead investigator at my clinic for the trial – http://www.seattlecca.org/clinical-trials/melanoma-NCT00389571.cfm)
However, I was not eligible due to already having a messed up immune system due to ulcerative colitis. But fortunately my doctor said I could go ahead and choose to follow the observation branch of the trial on my own (versus removing all of my nodes). This is what I am doing for now. I will have my first ultrasound of the groin area next month. I think this was the right choice for me because I ended up getting a nasty infection after my WLE and ended up in the hospital for 4 days. The thought of having a more invasive surgery with all sorts of possible complications was really scary (because of the colitis… I don't heal very well). So long story short… observation is what I am doing. The bad news is that I'm not sure yet if my insurance will cover it….
-
- August 25, 2012 at 9:40 am
The clinical trial has not ben completed yet. I was given all of the paperwork for the trial after my SNB turned up 1 node with a microscopic amount of melanoma (my surgical oncologist is the lead investigator at my clinic for the trial – http://www.seattlecca.org/clinical-trials/melanoma-NCT00389571.cfm)
However, I was not eligible due to already having a messed up immune system due to ulcerative colitis. But fortunately my doctor said I could go ahead and choose to follow the observation branch of the trial on my own (versus removing all of my nodes). This is what I am doing for now. I will have my first ultrasound of the groin area next month. I think this was the right choice for me because I ended up getting a nasty infection after my WLE and ended up in the hospital for 4 days. The thought of having a more invasive surgery with all sorts of possible complications was really scary (because of the colitis… I don't heal very well). So long story short… observation is what I am doing. The bad news is that I'm not sure yet if my insurance will cover it….
-
- August 17, 2012 at 12:57 pm
A PET scan does not show microscopic disease. Tumors typically have to be about 1cm or larger to show up on a PET scan. So, really, the PET scan will most likely not influence the decision to have the LND or not – it's looking to see if you have measurable disease elsewhere in the body. If your docs are treating this as stage III, then they will most likely recommend the LND regardless of the PET scan results as a LND is standard protocol with a positive SNB. The only other scenario I could see would be to ask for ultrasound monitoring of the lymph node basin. There was a clinical trial comparing this method to LND in stage IIIA disease for those who only had one positive node with very little disease. I'm not sure the clinical trial has ever been completed because I've never seen results published. Anyway, it is another option you could discuss. You still get to make the decisions and you don't have to have the LND. But most likely, your docs will recommend the "standard" LND and it will have to be your decision to deviate.
Janner
-
- August 17, 2012 at 12:57 pm
A PET scan does not show microscopic disease. Tumors typically have to be about 1cm or larger to show up on a PET scan. So, really, the PET scan will most likely not influence the decision to have the LND or not – it's looking to see if you have measurable disease elsewhere in the body. If your docs are treating this as stage III, then they will most likely recommend the LND regardless of the PET scan results as a LND is standard protocol with a positive SNB. The only other scenario I could see would be to ask for ultrasound monitoring of the lymph node basin. There was a clinical trial comparing this method to LND in stage IIIA disease for those who only had one positive node with very little disease. I'm not sure the clinical trial has ever been completed because I've never seen results published. Anyway, it is another option you could discuss. You still get to make the decisions and you don't have to have the LND. But most likely, your docs will recommend the "standard" LND and it will have to be your decision to deviate.
Janner
-
- August 17, 2012 at 12:07 pm
Should have PET results today…
Complete node dissection still scheduled for the 29th-
Wondering if PET were to show clear, would complete dissection still be the plan with a “questionable” node since mine could not be ruled positive for nevus or melanoma 1 was totally clear and 1 was questionable during the SNB when they did the WLE. -
- August 17, 2012 at 12:07 pm
Should have PET results today…
Complete node dissection still scheduled for the 29th-
Wondering if PET were to show clear, would complete dissection still be the plan with a “questionable” node since mine could not be ruled positive for nevus or melanoma 1 was totally clear and 1 was questionable during the SNB when they did the WLE. -
- August 16, 2012 at 2:08 am
Wow , would love to see that video.
I was so confused to have one stage on the pathology report (IIA) and then re-staged by surgeon to III because of the fact they could not exclude the unknown cell as being melanoma
Will post results of PET- wish me luck!Gayla..
-
- August 16, 2012 at 2:08 am
Wow , would love to see that video.
I was so confused to have one stage on the pathology report (IIA) and then re-staged by surgeon to III because of the fact they could not exclude the unknown cell as being melanoma
Will post results of PET- wish me luck!Gayla..
-
- August 16, 2012 at 1:25 am
An accurate treatment plan first requires an accurate diagnosis, not speculation. Would you repair a car without knowing what the problem was?
Get a third opinion and get it from a dermapathologist .
As the name implies,a dermapath ONLY looks at and tests skin biopsies……………….nothing else. As such, they are most adept at sorting out and granulating pesky suspect melanoma lesions..
Not dissing the folks at Emory, they should know what they are doing, but sometimes it is just scientifically difficult to reach a consensus fillled diagnosis and warrants caution before agreeing to a treatment plan.
Can't put my finger on the video, but the MRF did a Symposium three years ago and one of the featured speakers was a dermapath who addressed cases EXACTLY like yours and the importance of accurate diagnosis.
Bottom line? Get a dermapath as a third opinion. Any treatment plan is premature at this point because you lack an accurate diagnosis.
Hope this helps.
Charlie S
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- August 16, 2012 at 1:25 am
An accurate treatment plan first requires an accurate diagnosis, not speculation. Would you repair a car without knowing what the problem was?
Get a third opinion and get it from a dermapathologist .
As the name implies,a dermapath ONLY looks at and tests skin biopsies……………….nothing else. As such, they are most adept at sorting out and granulating pesky suspect melanoma lesions..
Not dissing the folks at Emory, they should know what they are doing, but sometimes it is just scientifically difficult to reach a consensus fillled diagnosis and warrants caution before agreeing to a treatment plan.
Can't put my finger on the video, but the MRF did a Symposium three years ago and one of the featured speakers was a dermapath who addressed cases EXACTLY like yours and the importance of accurate diagnosis.
Bottom line? Get a dermapath as a third opinion. Any treatment plan is premature at this point because you lack an accurate diagnosis.
Hope this helps.
Charlie S
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