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PET/CT Scan Results

Forums General Melanoma Community PET/CT Scan Results

  • Post
    jennunicorn
    Participant

    Got my scan results this morning..

    Good news: no mets in distant organs. Yay!

    Inconclusive news: lymph nodes in my neck, one in my left armpit and one in my left groin lit up. My oncologist is sure the neck ones lit up from a cold that I had a couple of weeks ago. She's not sure why one lit up in my armpit, maybe also related to the cold. The groin one is most concerning since it is the area that I had my SLNB in which 3 nodes removed had melanoma. 

    So, tomorrow my oncologist will be going over all of this with the tumor review board to see what to do next. If they feel it is concerning enough and they are able to get a needle in the nodes to check for melanoma then they might do that. Or, I might just get another scan sooner than planned. I would normally have another scan in 12 weeks, and now might have another in 6 weeks to check on everything.

    Has any other stage 3 folks had a similar experience?

    I'm relieved that it's not terrible news. Of course, it isn't fun not really knowing why certain lymph nodes decided to light up. 

    Thank you to everyone for their positive thoughts while I was having my scanxiety! 

Viewing 23 reply threads
  • Replies
      Scooby123
      Participant

      Hi Jenn,

      so pleased for you Hun, let's hope if they decide to scan you in 6 weeks all nodes which did light up have gone due to your cold .

      cannot comment on stage 3 , due to I went from stage 2 to stage 4 hoping for good scans results soon.

      love pic of you and your dog, my cockapoo is now 19 months old and so loving he is like a baby lol. Always sits on the widow side when I go out. He has been a god sense for me when been feeling down xx

      scooby❤️

      Scooby123
      Participant

      Hi Jenn,

      so pleased for you Hun, let's hope if they decide to scan you in 6 weeks all nodes which did light up have gone due to your cold .

      cannot comment on stage 3 , due to I went from stage 2 to stage 4 hoping for good scans results soon.

      love pic of you and your dog, my cockapoo is now 19 months old and so loving he is like a baby lol. Always sits on the widow side when I go out. He has been a god sense for me when been feeling down xx

      scooby❤️

        jennunicorn
        Participant

        Thank you, my dog's name is Cooper and he is a HUGE help for me when I am feeling overwhelmed with all this stuff. Dogs are the best therapy 🙂

        jennunicorn
        Participant

        Thank you, my dog's name is Cooper and he is a HUGE help for me when I am feeling overwhelmed with all this stuff. Dogs are the best therapy 🙂

        jennunicorn
        Participant

        Thank you, my dog's name is Cooper and he is a HUGE help for me when I am feeling overwhelmed with all this stuff. Dogs are the best therapy 🙂

      Scooby123
      Participant

      Hi Jenn,

      so pleased for you Hun, let's hope if they decide to scan you in 6 weeks all nodes which did light up have gone due to your cold .

      cannot comment on stage 3 , due to I went from stage 2 to stage 4 hoping for good scans results soon.

      love pic of you and your dog, my cockapoo is now 19 months old and so loving he is like a baby lol. Always sits on the widow side when I go out. He has been a god sense for me when been feeling down xx

      scooby❤️

      WithinMySkin
      Participant

      Hey Jenn! That is GREAT news about no mets!! Woohoo! smileyI also had good and inconclusive news in my last scans with a possible in-transit, no mets. We are taking the watch approach on the in-transit, and if it gets larger, we will do a needle biopsy. I know it's frustrating to get mixed news, but keep your chin up! Focus on the good news and have an extra big glass of wine tonight in celebration! 

      WithinMySkin
      Participant

      Hey Jenn! That is GREAT news about no mets!! Woohoo! smileyI also had good and inconclusive news in my last scans with a possible in-transit, no mets. We are taking the watch approach on the in-transit, and if it gets larger, we will do a needle biopsy. I know it's frustrating to get mixed news, but keep your chin up! Focus on the good news and have an extra big glass of wine tonight in celebration! 

        jennunicorn
        Participant

        Thank you! I think I will take your suggestion on the wine 🙂

        jennunicorn
        Participant

        Thank you! I think I will take your suggestion on the wine 🙂

        jennunicorn
        Participant

        Thank you! I think I will take your suggestion on the wine 🙂

      WithinMySkin
      Participant

      Hey Jenn! That is GREAT news about no mets!! Woohoo! smileyI also had good and inconclusive news in my last scans with a possible in-transit, no mets. We are taking the watch approach on the in-transit, and if it gets larger, we will do a needle biopsy. I know it's frustrating to get mixed news, but keep your chin up! Focus on the good news and have an extra big glass of wine tonight in celebration! 

      Dalym44
      Participant

      Jenn, 

      Glad to hear that there has been no met!

      Thank you for all the suppor you have given me. I know all will be well once you review this with the oncologist!

      Mike

      Dalym44
      Participant

      Jenn, 

      Glad to hear that there has been no met!

      Thank you for all the suppor you have given me. I know all will be well once you review this with the oncologist!

      Mike

      Dalym44
      Participant

      Jenn, 

      Glad to hear that there has been no met!

      Thank you for all the suppor you have given me. I know all will be well once you review this with the oncologist!

      Mike

      JuTMSY4
      Participant

      Hi Jenn,

      Sounds like generally good news.  I did have a similar experience, but nodes light up for all sorts of reasons.  I had a deep melanoma (4mm or so) followed by a positive SLNB and then a wide removal of about 20 nodes (3 had melanoma).  My next scan showed a positive node "upstream" – I had nodes removes in my left groin previously and a hot area showed up near my left kidney.  

      My doc felt it was probably melanoma, but we did a biopsy to confirm.  Not an overly terribly procedure.  At the time, my doc wasn't all that great (old doc) and I had other issues – pain in my chest and shoulder (which were bone mets).  She wasn't listening to me.

      I had another node removal surgery and switched docs.  That doc immediately followed up with a scan and Dxed me at Stage IV for the very obvious bone metastasis (that's where the pain was from).

      So, 1) you don't have any stage IV symptons (good!) and 2) you're on ipi, so your immune system is definitely doing something, which means nodes are full of all sorts of stuff.  Both are good signs.  

      Maybe they'll consider a biopsy.  Maybe they'll wait it out and see if something happens.  But for now, you've got a lot of options.  

      Hang in there – Justin

      JuTMSY4
      Participant

      Hi Jenn,

      Sounds like generally good news.  I did have a similar experience, but nodes light up for all sorts of reasons.  I had a deep melanoma (4mm or so) followed by a positive SLNB and then a wide removal of about 20 nodes (3 had melanoma).  My next scan showed a positive node "upstream" – I had nodes removes in my left groin previously and a hot area showed up near my left kidney.  

      My doc felt it was probably melanoma, but we did a biopsy to confirm.  Not an overly terribly procedure.  At the time, my doc wasn't all that great (old doc) and I had other issues – pain in my chest and shoulder (which were bone mets).  She wasn't listening to me.

      I had another node removal surgery and switched docs.  That doc immediately followed up with a scan and Dxed me at Stage IV for the very obvious bone metastasis (that's where the pain was from).

      So, 1) you don't have any stage IV symptons (good!) and 2) you're on ipi, so your immune system is definitely doing something, which means nodes are full of all sorts of stuff.  Both are good signs.  

      Maybe they'll consider a biopsy.  Maybe they'll wait it out and see if something happens.  But for now, you've got a lot of options.  

      Hang in there – Justin

        Suzi
        Participant
        Hi Jenn, hope it all comes out okay. I’m curious to what mine will show in my neck, I have had pain for a couple months on the left side of my neck. The doctors feel around and think it’s stress. Sometimes it goes under my chin. I have done the lymph node drain exercises but it does not really work that well. So I did not know you could do a needle biopsy for melanoma? I had 8 done in my breast before. …ouch!
        Hope you get some answers soon.
        Suzi
        Suzi
        Participant
        Hi Jenn, hope it all comes out okay. I’m curious to what mine will show in my neck, I have had pain for a couple months on the left side of my neck. The doctors feel around and think it’s stress. Sometimes it goes under my chin. I have done the lymph node drain exercises but it does not really work that well. So I did not know you could do a needle biopsy for melanoma? I had 8 done in my breast before. …ouch!
        Hope you get some answers soon.
        Suzi
        jennunicorn
        Participant

        Thanks Suzi, hope your lymph pain goes away for you, I know that can be uncomfortable.

        jennunicorn
        Participant

        Thanks Suzi, hope your lymph pain goes away for you, I know that can be uncomfortable.

        jennunicorn
        Participant

        Thanks Suzi, hope your lymph pain goes away for you, I know that can be uncomfortable.

        Suzi
        Participant
        Hi Jenn, hope it all comes out okay. I’m curious to what mine will show in my neck, I have had pain for a couple months on the left side of my neck. The doctors feel around and think it’s stress. Sometimes it goes under my chin. I have done the lymph node drain exercises but it does not really work that well. So I did not know you could do a needle biopsy for melanoma? I had 8 done in my breast before. …ouch!
        Hope you get some answers soon.
        Suzi
        jennunicorn
        Participant

        Thanks Justin, glad you switched doctors to someone who would listen, frusterating to deal with the medical world sometimes. 

        jennunicorn
        Participant

        Thanks Justin, glad you switched doctors to someone who would listen, frusterating to deal with the medical world sometimes. 

        liberty04281
        Participant
        From my experience I will tell you my opinion. Sorry to hear your lymph nodes lit up, I believe your nodes are positive for melanoma. Do not wait long to get it biopsed.
        liberty04281
        Participant
        From my experience I will tell you my opinion. Sorry to hear your lymph nodes lit up, I believe your nodes are positive for melanoma. Do not wait long to get it biopsed.
        jennunicorn
        Participant

        Thank you, it is very possible. I will do what the melanoma oncology doctors decide is the best option right now. Will find out tomorrow. I am thankful to be able to go to one of the best melanoma centers in the country so I trust in their experience and what they think is the best option. They might not be able to get a needle in them, but if they can, it sounds like they're leaning toward trying so they can know for sure if it is melanoma.

        jennunicorn
        Participant

        Thank you, it is very possible. I will do what the melanoma oncology doctors decide is the best option right now. Will find out tomorrow. I am thankful to be able to go to one of the best melanoma centers in the country so I trust in their experience and what they think is the best option. They might not be able to get a needle in them, but if they can, it sounds like they're leaning toward trying so they can know for sure if it is melanoma.

        liberty04281
        Participant
        I had to do twice surgical biopsy, needle was not accurate. After surgical biopsy melanoma was confirmed in lymph nodes. It was my case.
        liberty04281
        Participant
        I had to do twice surgical biopsy, needle was not accurate. After surgical biopsy melanoma was confirmed in lymph nodes. It was my case.
        jennunicorn
        Participant

        Good to know, thank you. I always appreciate all feedback so I can be as informed as possible.

        jennunicorn
        Participant

        Good to know, thank you. I always appreciate all feedback so I can be as informed as possible.

        jennunicorn
        Participant

        Good to know, thank you. I always appreciate all feedback so I can be as informed as possible.

        liberty04281
        Participant
        It happened to me the same thing. I had surgical biopsy because needle biopsy was not accurate. I think it happened twice too.
        liberty04281
        Participant
        It happened to me the same thing. I had surgical biopsy because needle biopsy was not accurate. I think it happened twice too.
        liberty04281
        Participant
        It happened to me the same thing. I had surgical biopsy because needle biopsy was not accurate. I think it happened twice too.
        liberty04281
        Participant
        I had to do twice surgical biopsy, needle was not accurate. After surgical biopsy melanoma was confirmed in lymph nodes. It was my case.
        jennunicorn
        Participant

        Thank you, it is very possible. I will do what the melanoma oncology doctors decide is the best option right now. Will find out tomorrow. I am thankful to be able to go to one of the best melanoma centers in the country so I trust in their experience and what they think is the best option. They might not be able to get a needle in them, but if they can, it sounds like they're leaning toward trying so they can know for sure if it is melanoma.

        liberty04281
        Participant
        From my experience I will tell you my opinion. Sorry to hear your lymph nodes lit up, I believe your nodes are positive for melanoma. Do not wait long to get it biopsed.
        jennunicorn
        Participant

        Thanks Justin, glad you switched doctors to someone who would listen, frusterating to deal with the medical world sometimes. 

      JuTMSY4
      Participant

      Hi Jenn,

      Sounds like generally good news.  I did have a similar experience, but nodes light up for all sorts of reasons.  I had a deep melanoma (4mm or so) followed by a positive SLNB and then a wide removal of about 20 nodes (3 had melanoma).  My next scan showed a positive node "upstream" – I had nodes removes in my left groin previously and a hot area showed up near my left kidney.  

      My doc felt it was probably melanoma, but we did a biopsy to confirm.  Not an overly terribly procedure.  At the time, my doc wasn't all that great (old doc) and I had other issues – pain in my chest and shoulder (which were bone mets).  She wasn't listening to me.

      I had another node removal surgery and switched docs.  That doc immediately followed up with a scan and Dxed me at Stage IV for the very obvious bone metastasis (that's where the pain was from).

      So, 1) you don't have any stage IV symptons (good!) and 2) you're on ipi, so your immune system is definitely doing something, which means nodes are full of all sorts of stuff.  Both are good signs.  

      Maybe they'll consider a biopsy.  Maybe they'll wait it out and see if something happens.  But for now, you've got a lot of options.  

      Hang in there – Justin

      keepthefaith11
      Participant
      Jenn, thinking of you hoping the nodes that lit up are nothing. Let us know what you find out today.

      Annie

      keepthefaith11
      Participant
      Jenn, thinking of you hoping the nodes that lit up are nothing. Let us know what you find out today.

      Annie

      keepthefaith11
      Participant
      Jenn, thinking of you hoping the nodes that lit up are nothing. Let us know what you find out today.

      Annie

      jamieth29
      Participant
      Hi Jenn,
      Any of the suspect lymph nodes enlarged? I have had a couple ct guided fine needle aspirations,one to my groin and one to my iliac nodes. Neither was painful. There is always the worry that they cannot get a good enough sample from fna. I would also think that if the node had cancerous metabolic activity the would be enlarged some. For me when they were about a cm or larger image became worried something was going on. I hope it’s nothing as we all know lymph nodes do odd things.
      jamieth29
      Participant
      Hi Jenn,
      Any of the suspect lymph nodes enlarged? I have had a couple ct guided fine needle aspirations,one to my groin and one to my iliac nodes. Neither was painful. There is always the worry that they cannot get a good enough sample from fna. I would also think that if the node had cancerous metabolic activity the would be enlarged some. For me when they were about a cm or larger image became worried something was going on. I hope it’s nothing as we all know lymph nodes do odd things.
        jennunicorn
        Participant

        Yes, my onc did say that the groin one in particular was enlarged, not by a lot but some enlargement was there. Hopefully I hear from her soon, waiting for that call on what to do next is not my favorite.

        jennunicorn
        Participant

        Yes, my onc did say that the groin one in particular was enlarged, not by a lot but some enlargement was there. Hopefully I hear from her soon, waiting for that call on what to do next is not my favorite.

        jennunicorn
        Participant

        Yes, my onc did say that the groin one in particular was enlarged, not by a lot but some enlargement was there. Hopefully I hear from her soon, waiting for that call on what to do next is not my favorite.

      jamieth29
      Participant
      Hi Jenn,
      Any of the suspect lymph nodes enlarged? I have had a couple ct guided fine needle aspirations,one to my groin and one to my iliac nodes. Neither was painful. There is always the worry that they cannot get a good enough sample from fna. I would also think that if the node had cancerous metabolic activity the would be enlarged some. For me when they were about a cm or larger image became worried something was going on. I hope it’s nothing as we all know lymph nodes do odd things.
      jennunicorn
      Participant

      Update: They do want me to get the fine needle aspiration on the groin lymph node, so I will get that done on Monday. If that comes back positive for melanoma then they want to do the same for a lymph node that lit up in my armpit as well. The neck lymph nodes they aren't worried about right now, very likely that was from my recent cold.

      jennunicorn
      Participant

      Update: They do want me to get the fine needle aspiration on the groin lymph node, so I will get that done on Monday. If that comes back positive for melanoma then they want to do the same for a lymph node that lit up in my armpit as well. The neck lymph nodes they aren't worried about right now, very likely that was from my recent cold.

        keepthefaith11
        Participant
        Sounds expected, and a good call. When will you find out results from the biopsy Monday? Did you initially have radiation to the groin area?

        I am sure the neck one is related to the cold you had like they said.

        Thinking of you.
        Annie

        keepthefaith11
        Participant
        Sounds expected, and a good call. When will you find out results from the biopsy Monday? Did you initially have radiation to the groin area?

        I am sure the neck one is related to the cold you had like they said.

        Thinking of you.
        Annie

        jennunicorn
        Participant

        I've never had radiation. The first time I had a scan back in November nothing lit up and lymph nodes were normal size, only micro met in the lymph nodes found after the SLNB. They said it could take about a week for results.

        Thank you 🙂

        jennunicorn
        Participant

        I've never had radiation. The first time I had a scan back in November nothing lit up and lymph nodes were normal size, only micro met in the lymph nodes found after the SLNB. They said it could take about a week for results.

        Thank you 🙂

        jennunicorn
        Participant

        I've never had radiation. The first time I had a scan back in November nothing lit up and lymph nodes were normal size, only micro met in the lymph nodes found after the SLNB. They said it could take about a week for results.

        Thank you 🙂

        keepthefaith11
        Participant
        Sounds expected, and a good call. When will you find out results from the biopsy Monday? Did you initially have radiation to the groin area?

        I am sure the neck one is related to the cold you had like they said.

        Thinking of you.
        Annie

        JuTMSY4
        Participant

        Disappointing, but I'm glad you've got options.

        The biopsies aren't fun, but they aren't that bad.  

        You are on an immune boosting drug, so it's not overly surprising to see immune activity.  To me, it's even possible that Ipi might be presently being doing all sorts of things.  Hard to say.

        Best of luck and hang in there

        -Justin

        JuTMSY4
        Participant

        Disappointing, but I'm glad you've got options.

        The biopsies aren't fun, but they aren't that bad.  

        You are on an immune boosting drug, so it's not overly surprising to see immune activity.  To me, it's even possible that Ipi might be presently being doing all sorts of things.  Hard to say.

        Best of luck and hang in there

        -Justin

        jennunicorn
        Participant

        Thanks Justin, I am hoping it is just Ipi making things a little crazy right now. Just got home from the biopsy, was very strange to watch the whole thing on the ultrasound monitor. A little sore, but not too bad. Hoping for good news from the pathology lab.

        jennunicorn
        Participant

        Thanks Justin, I am hoping it is just Ipi making things a little crazy right now. Just got home from the biopsy, was very strange to watch the whole thing on the ultrasound monitor. A little sore, but not too bad. Hoping for good news from the pathology lab.

        jennunicorn
        Participant

        Thanks Justin, I am hoping it is just Ipi making things a little crazy right now. Just got home from the biopsy, was very strange to watch the whole thing on the ultrasound monitor. A little sore, but not too bad. Hoping for good news from the pathology lab.

        JuTMSY4
        Participant

        Disappointing, but I'm glad you've got options.

        The biopsies aren't fun, but they aren't that bad.  

        You are on an immune boosting drug, so it's not overly surprising to see immune activity.  To me, it's even possible that Ipi might be presently being doing all sorts of things.  Hard to say.

        Best of luck and hang in there

        -Justin

      jennunicorn
      Participant

      Update: They do want me to get the fine needle aspiration on the groin lymph node, so I will get that done on Monday. If that comes back positive for melanoma then they want to do the same for a lymph node that lit up in my armpit as well. The neck lymph nodes they aren't worried about right now, very likely that was from my recent cold.

      jennunicorn
      Participant

      In case anyone checks back:

      Just got the biopsy results and it's all good, no melanoma in the lymph node!

      So, I continue on as planned with my maintanence doses of Ipi and scans every 3 months.

      jennunicorn
      Participant

      In case anyone checks back:

      Just got the biopsy results and it's all good, no melanoma in the lymph node!

      So, I continue on as planned with my maintanence doses of Ipi and scans every 3 months.

        spiderman
        Participant

        Awesome news Jenn! You deserved some good news. I want everybody to get good news, but especially so for young people like you. 

        spiderman
        Participant

        Awesome news Jenn! You deserved some good news. I want everybody to get good news, but especially so for young people like you. 

        spiderman
        Participant

        Awesome news Jenn! You deserved some good news. I want everybody to get good news, but especially so for young people like you. 

        BrianP
        Participant

        Great news! 

        BrianP
        Participant

        Great news! 

        BrianP
        Participant

        Great news! 

        DZnDef
        Participant

        Congratulations Jenn!

        DZnDef
        Participant

        Congratulations Jenn!

        DZnDef
        Participant

        Congratulations Jenn!

        keepthefaith11
        Participant
        Jenn, I can not believe I missed this! I have been wondering and was going to message you. SOOOOO excited to see this wonderful news!!

        Annie

        keepthefaith11
        Participant
        Jenn, I can not believe I missed this! I have been wondering and was going to message you. SOOOOO excited to see this wonderful news!!

        Annie

        jennunicorn
        Participant

        Thanks everyone! It's been a big heavy burden off my shoulders and now I can live life and not worry about another melanoma related appointment until May!

        jennunicorn
        Participant

        Thanks everyone! It's been a big heavy burden off my shoulders and now I can live life and not worry about another melanoma related appointment until May!

        _Paul_
        Participant

        Woohoo!!!

        _Paul_
        Participant

        Woohoo!!!

        _Paul_
        Participant

        Woohoo!!!

        jennunicorn
        Participant

        Thanks everyone! It's been a big heavy burden off my shoulders and now I can live life and not worry about another melanoma related appointment until May!

        keepthefaith11
        Participant
        Jenn, I can not believe I missed this! I have been wondering and was going to message you. SOOOOO excited to see this wonderful news!!

        Annie

      jennunicorn
      Participant

      In case anyone checks back:

      Just got the biopsy results and it's all good, no melanoma in the lymph node!

      So, I continue on as planned with my maintanence doses of Ipi and scans every 3 months.

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