› Forums › General Melanoma Community › When did you get your first pet/ct scans?
- This topic has 51 replies, 8 voices, and was last updated 9 years, 7 months ago by
5dives.
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- October 18, 2014 at 10:26 pm
Hi Emcjones,
First of all, I'm 45 years old and I'm being treated in Chicago. I was diagnosed on June 10, SLNB / WLE on July 10, micrometastases found in one node after kind of a long process (in my opinion) with a second opinion. Had my PET / CT on September 16 in preparation for a third opinion (path results really weird) at Memorial Sloan-Kettering.
PET / CT was completely clean (woot!) and the Sloan-Kettering doc confirmed the micrometastases in the one node. I am now stage 3a and have been told I'll be followed with scans every six months. Unclear what kind of scans I'll be having until I see my med. onc. next. The MSK doc said he'd rather not see me have my brain scanned "too frequently" as melanoma rarely goes to the brain without also going somewhere else first.
He strongly recommended no node dissection and no interferon.
I'd be very interested in hearing what your next steps are, since our situations seem pretty similar.
Best,
Elaine
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- October 22, 2014 at 2:29 am
Elaine-
I read all the posted answer. It is interesting the amount of information and course of treatments. I will have my second opinion visit on the 31st, the primary doesn't want to scans until after I am completely healed from surgery so the the "ground state" scans are not obscured by inflammation, which makes sense. 8 weeks seems about right.
My micrometastases were, isolated tumor cells, how big were yours?
Genie
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- October 22, 2014 at 2:29 am
Elaine-
I read all the posted answer. It is interesting the amount of information and course of treatments. I will have my second opinion visit on the 31st, the primary doesn't want to scans until after I am completely healed from surgery so the the "ground state" scans are not obscured by inflammation, which makes sense. 8 weeks seems about right.
My micrometastases were, isolated tumor cells, how big were yours?
Genie
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- October 22, 2014 at 2:29 am
Elaine-
I read all the posted answer. It is interesting the amount of information and course of treatments. I will have my second opinion visit on the 31st, the primary doesn't want to scans until after I am completely healed from surgery so the the "ground state" scans are not obscured by inflammation, which makes sense. 8 weeks seems about right.
My micrometastases were, isolated tumor cells, how big were yours?
Genie
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- October 18, 2014 at 10:26 pm
Hi Emcjones,
First of all, I'm 45 years old and I'm being treated in Chicago. I was diagnosed on June 10, SLNB / WLE on July 10, micrometastases found in one node after kind of a long process (in my opinion) with a second opinion. Had my PET / CT on September 16 in preparation for a third opinion (path results really weird) at Memorial Sloan-Kettering.
PET / CT was completely clean (woot!) and the Sloan-Kettering doc confirmed the micrometastases in the one node. I am now stage 3a and have been told I'll be followed with scans every six months. Unclear what kind of scans I'll be having until I see my med. onc. next. The MSK doc said he'd rather not see me have my brain scanned "too frequently" as melanoma rarely goes to the brain without also going somewhere else first.
He strongly recommended no node dissection and no interferon.
I'd be very interested in hearing what your next steps are, since our situations seem pretty similar.
Best,
Elaine
-
- October 18, 2014 at 10:26 pm
Hi Emcjones,
First of all, I'm 45 years old and I'm being treated in Chicago. I was diagnosed on June 10, SLNB / WLE on July 10, micrometastases found in one node after kind of a long process (in my opinion) with a second opinion. Had my PET / CT on September 16 in preparation for a third opinion (path results really weird) at Memorial Sloan-Kettering.
PET / CT was completely clean (woot!) and the Sloan-Kettering doc confirmed the micrometastases in the one node. I am now stage 3a and have been told I'll be followed with scans every six months. Unclear what kind of scans I'll be having until I see my med. onc. next. The MSK doc said he'd rather not see me have my brain scanned "too frequently" as melanoma rarely goes to the brain without also going somewhere else first.
He strongly recommended no node dissection and no interferon.
I'd be very interested in hearing what your next steps are, since our situations seem pretty similar.
Best,
Elaine
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- October 18, 2014 at 11:27 pm
Hi Emcjones1, I was doing some research last week when I came across a web site called Onclive. It has a great series on Melanoma made this year. There are 12 different episodes with the same panel of surgeons and oncology dr. The topic of when to scan and how often came up in episode 9. I watched all the episodes from the start and it is an excellent series. Look up Onclive then on the left, under cancer topics pick Melanoma, then choose the video titled Nivolumab Plus Ipilimumab in advanced Melanoma ( guy in bow tie is Jeffrey Weber from Moffitt. Once you pick this video scroll down and you will see the 12 episodes. I hope this will help you in your search for some answers. The panel all have different opinions on the topic of when and how often to scan. Wishing you the best!!! Ed
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- October 18, 2014 at 11:27 pm
Hi Emcjones1, I was doing some research last week when I came across a web site called Onclive. It has a great series on Melanoma made this year. There are 12 different episodes with the same panel of surgeons and oncology dr. The topic of when to scan and how often came up in episode 9. I watched all the episodes from the start and it is an excellent series. Look up Onclive then on the left, under cancer topics pick Melanoma, then choose the video titled Nivolumab Plus Ipilimumab in advanced Melanoma ( guy in bow tie is Jeffrey Weber from Moffitt. Once you pick this video scroll down and you will see the 12 episodes. I hope this will help you in your search for some answers. The panel all have different opinions on the topic of when and how often to scan. Wishing you the best!!! Ed
-
- October 18, 2014 at 11:27 pm
Hi Emcjones1, I was doing some research last week when I came across a web site called Onclive. It has a great series on Melanoma made this year. There are 12 different episodes with the same panel of surgeons and oncology dr. The topic of when to scan and how often came up in episode 9. I watched all the episodes from the start and it is an excellent series. Look up Onclive then on the left, under cancer topics pick Melanoma, then choose the video titled Nivolumab Plus Ipilimumab in advanced Melanoma ( guy in bow tie is Jeffrey Weber from Moffitt. Once you pick this video scroll down and you will see the 12 episodes. I hope this will help you in your search for some answers. The panel all have different opinions on the topic of when and how often to scan. Wishing you the best!!! Ed
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- October 19, 2014 at 12:04 am
I had a brain CT and PET scan within 2 weeks of my initial surgery
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- October 19, 2014 at 7:14 am
My dad had a WLE, and the path report a week or so later showed nodular melanoma with a depth of 20 mm. They had him in for a PET/CT in less than a week.
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- October 19, 2014 at 7:14 am
My dad had a WLE, and the path report a week or so later showed nodular melanoma with a depth of 20 mm. They had him in for a PET/CT in less than a week.
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- October 19, 2014 at 7:14 am
My dad had a WLE, and the path report a week or so later showed nodular melanoma with a depth of 20 mm. They had him in for a PET/CT in less than a week.
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- October 20, 2014 at 2:11 am
i had my SNB in November of 2011. After finding micro mets and deciding I wanted to be treated at Memorial Sloan Kettering, I consulted with Doctors the following January and my PET scan there as well
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- October 20, 2014 at 3:01 am
Hi sabklyn,
What treatment (or no treatment) did your Sloan-Kettering doctors recommend? Did you have a node dissection? My MSK doc told me MSK is an "anti-interferon" institution, so I'm guessing you didn't go that route? Is that right?
Thanks!
Elaine
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- October 20, 2014 at 3:01 am
Hi sabklyn,
What treatment (or no treatment) did your Sloan-Kettering doctors recommend? Did you have a node dissection? My MSK doc told me MSK is an "anti-interferon" institution, so I'm guessing you didn't go that route? Is that right?
Thanks!
Elaine
-
- October 20, 2014 at 3:01 am
Hi sabklyn,
What treatment (or no treatment) did your Sloan-Kettering doctors recommend? Did you have a node dissection? My MSK doc told me MSK is an "anti-interferon" institution, so I'm guessing you didn't go that route? Is that right?
Thanks!
Elaine
-
- October 20, 2014 at 1:25 pm
Hi Elaine,
You're right. My doctors (surgeon and oncologist) both thought, based on the data that it would be of limited value. Instead I was offered to participate in a study which would monitor me via ultra-sound as an option to the CLND. I decided the surgery was abetted option for means had the procedure in February of 2012. Other than that, I participated in a clinical study at Memorial and since have had regular visits (first every 3 months, now every 6) to monitor, scan, etc. hope that helps!
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- October 20, 2014 at 1:25 pm
Hi Elaine,
You're right. My doctors (surgeon and oncologist) both thought, based on the data that it would be of limited value. Instead I was offered to participate in a study which would monitor me via ultra-sound as an option to the CLND. I decided the surgery was abetted option for means had the procedure in February of 2012. Other than that, I participated in a clinical study at Memorial and since have had regular visits (first every 3 months, now every 6) to monitor, scan, etc. hope that helps!
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- October 21, 2014 at 11:44 pm
I thought I would share too, Elaine. I had a similar situation- micromet in 1 node. I went to msk for a second opinion. They also suggested no clnd and no interferon. I did still do the clnd but am not doing interferon. I hope all goes we with you!
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- October 21, 2014 at 11:44 pm
I thought I would share too, Elaine. I had a similar situation- micromet in 1 node. I went to msk for a second opinion. They also suggested no clnd and no interferon. I did still do the clnd but am not doing interferon. I hope all goes we with you!
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- October 23, 2014 at 10:24 pm
Hi Happy_girl,
Thanks for sharing. What made you decide to do the node dissection? Have you had lymphedema? Did your CLND happen to be a groin dissection?
The MSK doc basically said that I shouldn't do the CLND. His reasoning was that there is a study (recently concluded, but no results yet) that followed CLND / no CLND patients to gauge survival. He said that no doctor could ethically place a patient in the "no CLND" arm of such a trial, if the CLND was known to improve survival. He told me that he could not promise me that there is no melanoma in my node basin at the current moment, but that at my age (45, 3 kids, full-time job) he thought I needed to keep my nodes. I have really struggled with this.
I'd love to hear what led you to do it.
Thanks,
Elaine
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- October 24, 2014 at 10:42 pm
My clnd was not groin- it was left armpit. I understand the toughness of thi decision! It's hard and scary. I heard the same things you did. I pretty much decided that being 31 with a 9 month old baby teaching 3rd graders- I still wanted to get it. I'm not good with letting things go…. So the "what if" would have been a horrible mental game. I know I would have been constantly worried.
Thankfully the surgey went well- no complications or lymphodema- and they are predicting it won't happen since it hasn't already.
hope this is helpful. Sometimes it's just comforting to know there are others in a similar situation- even if it's melanom 🙂
-
- October 26, 2014 at 3:56 pm
Happy_girl,
Thanks so much. I agree, it's an incredibly tough decision. I feel a fair amount of pressure from those around me to "do something", but all of my docs have recommended that for me in my situation, both the CLND and interferon would appear to be overkill. It's hard to decide because I do not want to have regrets. My husband is supportive of taking a "wait and see" approach, but sometimes I'm afraid it's because he doesn't fully understand the seriousness of melanoma. He's sort of distrustful of doctors, etc. and I have a tendency to throw babies out with bathwater, so…between the two of us it's hard to make a rational decision.
I'm seeing my surgical oncologist again on November 6th, so I am going to lay the whole thing out with him and see what he says about CLND.
I appreciate your input.
Best,
Elaine
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- October 26, 2014 at 8:34 pm
Hi Elaine.I have just one thought about doing the CLND and that is the future and the role lymph node play with your bodies immune response. I had both my arm done and I still progressed and I am currently on Nivo or Ipi or the two (double blind trial). I must say that my present understanding of what the new drugs do and the value of my lymph node would have been valueable back in 2012 when I was facing the decision to leave them in or take them out. Do the research and be informed before going forward. Best of luck!!!! Ed
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- October 26, 2014 at 8:54 pm
Thank you for that, Ed. It seems that many people in my life have no understanding what lymph nodes do, so they are quick to say "yank them out!" The decision is actually far less obvious than that.
I'm still leaning toward keeping my nodes, but I'm considering all input.
Best,
Elaine
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- October 26, 2014 at 8:54 pm
Thank you for that, Ed. It seems that many people in my life have no understanding what lymph nodes do, so they are quick to say "yank them out!" The decision is actually far less obvious than that.
I'm still leaning toward keeping my nodes, but I'm considering all input.
Best,
Elaine
-
- October 26, 2014 at 8:54 pm
Thank you for that, Ed. It seems that many people in my life have no understanding what lymph nodes do, so they are quick to say "yank them out!" The decision is actually far less obvious than that.
I'm still leaning toward keeping my nodes, but I'm considering all input.
Best,
Elaine
-
- October 26, 2014 at 8:34 pm
Hi Elaine.I have just one thought about doing the CLND and that is the future and the role lymph node play with your bodies immune response. I had both my arm done and I still progressed and I am currently on Nivo or Ipi or the two (double blind trial). I must say that my present understanding of what the new drugs do and the value of my lymph node would have been valueable back in 2012 when I was facing the decision to leave them in or take them out. Do the research and be informed before going forward. Best of luck!!!! Ed
-
- October 26, 2014 at 8:34 pm
Hi Elaine.I have just one thought about doing the CLND and that is the future and the role lymph node play with your bodies immune response. I had both my arm done and I still progressed and I am currently on Nivo or Ipi or the two (double blind trial). I must say that my present understanding of what the new drugs do and the value of my lymph node would have been valueable back in 2012 when I was facing the decision to leave them in or take them out. Do the research and be informed before going forward. Best of luck!!!! Ed
-
- October 26, 2014 at 3:56 pm
Happy_girl,
Thanks so much. I agree, it's an incredibly tough decision. I feel a fair amount of pressure from those around me to "do something", but all of my docs have recommended that for me in my situation, both the CLND and interferon would appear to be overkill. It's hard to decide because I do not want to have regrets. My husband is supportive of taking a "wait and see" approach, but sometimes I'm afraid it's because he doesn't fully understand the seriousness of melanoma. He's sort of distrustful of doctors, etc. and I have a tendency to throw babies out with bathwater, so…between the two of us it's hard to make a rational decision.
I'm seeing my surgical oncologist again on November 6th, so I am going to lay the whole thing out with him and see what he says about CLND.
I appreciate your input.
Best,
Elaine
-
- October 26, 2014 at 3:56 pm
Happy_girl,
Thanks so much. I agree, it's an incredibly tough decision. I feel a fair amount of pressure from those around me to "do something", but all of my docs have recommended that for me in my situation, both the CLND and interferon would appear to be overkill. It's hard to decide because I do not want to have regrets. My husband is supportive of taking a "wait and see" approach, but sometimes I'm afraid it's because he doesn't fully understand the seriousness of melanoma. He's sort of distrustful of doctors, etc. and I have a tendency to throw babies out with bathwater, so…between the two of us it's hard to make a rational decision.
I'm seeing my surgical oncologist again on November 6th, so I am going to lay the whole thing out with him and see what he says about CLND.
I appreciate your input.
Best,
Elaine
-
- October 24, 2014 at 10:42 pm
My clnd was not groin- it was left armpit. I understand the toughness of thi decision! It's hard and scary. I heard the same things you did. I pretty much decided that being 31 with a 9 month old baby teaching 3rd graders- I still wanted to get it. I'm not good with letting things go…. So the "what if" would have been a horrible mental game. I know I would have been constantly worried.
Thankfully the surgey went well- no complications or lymphodema- and they are predicting it won't happen since it hasn't already.
hope this is helpful. Sometimes it's just comforting to know there are others in a similar situation- even if it's melanom 🙂
-
- October 24, 2014 at 10:42 pm
My clnd was not groin- it was left armpit. I understand the toughness of thi decision! It's hard and scary. I heard the same things you did. I pretty much decided that being 31 with a 9 month old baby teaching 3rd graders- I still wanted to get it. I'm not good with letting things go…. So the "what if" would have been a horrible mental game. I know I would have been constantly worried.
Thankfully the surgey went well- no complications or lymphodema- and they are predicting it won't happen since it hasn't already.
hope this is helpful. Sometimes it's just comforting to know there are others in a similar situation- even if it's melanom 🙂
-
- October 23, 2014 at 10:24 pm
Hi Happy_girl,
Thanks for sharing. What made you decide to do the node dissection? Have you had lymphedema? Did your CLND happen to be a groin dissection?
The MSK doc basically said that I shouldn't do the CLND. His reasoning was that there is a study (recently concluded, but no results yet) that followed CLND / no CLND patients to gauge survival. He said that no doctor could ethically place a patient in the "no CLND" arm of such a trial, if the CLND was known to improve survival. He told me that he could not promise me that there is no melanoma in my node basin at the current moment, but that at my age (45, 3 kids, full-time job) he thought I needed to keep my nodes. I have really struggled with this.
I'd love to hear what led you to do it.
Thanks,
Elaine
-
- October 23, 2014 at 10:24 pm
Hi Happy_girl,
Thanks for sharing. What made you decide to do the node dissection? Have you had lymphedema? Did your CLND happen to be a groin dissection?
The MSK doc basically said that I shouldn't do the CLND. His reasoning was that there is a study (recently concluded, but no results yet) that followed CLND / no CLND patients to gauge survival. He said that no doctor could ethically place a patient in the "no CLND" arm of such a trial, if the CLND was known to improve survival. He told me that he could not promise me that there is no melanoma in my node basin at the current moment, but that at my age (45, 3 kids, full-time job) he thought I needed to keep my nodes. I have really struggled with this.
I'd love to hear what led you to do it.
Thanks,
Elaine
-
- October 21, 2014 at 11:44 pm
I thought I would share too, Elaine. I had a similar situation- micromet in 1 node. I went to msk for a second opinion. They also suggested no clnd and no interferon. I did still do the clnd but am not doing interferon. I hope all goes we with you!
-
- October 20, 2014 at 1:25 pm
Hi Elaine,
You're right. My doctors (surgeon and oncologist) both thought, based on the data that it would be of limited value. Instead I was offered to participate in a study which would monitor me via ultra-sound as an option to the CLND. I decided the surgery was abetted option for means had the procedure in February of 2012. Other than that, I participated in a clinical study at Memorial and since have had regular visits (first every 3 months, now every 6) to monitor, scan, etc. hope that helps!
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