Jennie / Idlehunters

Lovekitties
Lovekitties Member Posts: 3,364 Member
in Colorectal Cancer #1
Dear Jennie, was just wondering how your appointment with the doc went on Tuesday.

Hope that you got a good treatment map.

Hugs,

Marie who loves kitties

Comments

  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #2
    Hey Marie....
    Thanks so much for asking. So sweet of you to remember or even have this on your mind. You are awesome!

    Onc actually surprised me. Normally he is a chemo pusher. This time he said he is NOT convinced that I in fact have a recurrence and wants more proof before he does ANYTHING. The Rad Onc that did my Cyberknife did the PET/CT and gave me the results. My Onc said that is just 1 persons opinion and he wants to form his own. He says I have not had a PET/CT in 9 months and it was noted back then that I had multiple "lung nodules" or what they "thought" was lung nodules...but they have never been measured. Not then or on any other scan, MRI, or xray that has been done in the following months. Onc said he wants to gather every picture that has been taken of my lungs over the past 9 months and compare sizes. If these "nodules"..if thats what they are....have NOT grown in all this time...he says they may not even be cancer and therefor not recurrence or of importance. But why then do these "spots" light up on PET? He says I still have plenty of radiation from Cyberknife in my body that can cause this and he is basically not a fan of PETs anyway because there are a lot of false positives. He says he is not trying to offer me any false hopes but is not going to just assume another doctors opinion is correct. Especially since my CEA has consistently dropped over the past 9 months...all the way to normal range. BUT..it just rose from 3.8 to 5.9 last month. This was the first time in all those months and he says this could be from LOTS of things not related to cancer. I know that is a fact but EVERY time my CEA has risen it was followed by recurrence. Nothing is set in stone with cancer...he says...and patterns can and do change all the time.

    So, he redid my CEA Tuesday and is gathering all my previous scans for comparison and I meet back with him on the 17th to see what his findings are. I have been feeling great other than some unrelated back issues so I have no "symptoms" of anything. I do have to say it really excited me to think that "maybe" theres a chance that there is not a recurrence BUT... I am not holding my breath. Being stage IV the odds are definately against you so I will wait....and pray!

    Jennie
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #3
    idlehunters said:

    Hey Marie....
    Thanks so much for asking. So sweet of you to remember or even have this on your mind. You are awesome!

    Onc actually surprised me. Normally he is a chemo pusher. This time he said he is NOT convinced that I in fact have a recurrence and wants more proof before he does ANYTHING. The Rad Onc that did my Cyberknife did the PET/CT and gave me the results. My Onc said that is just 1 persons opinion and he wants to form his own. He says I have not had a PET/CT in 9 months and it was noted back then that I had multiple "lung nodules" or what they "thought" was lung nodules...but they have never been measured. Not then or on any other scan, MRI, or xray that has been done in the following months. Onc said he wants to gather every picture that has been taken of my lungs over the past 9 months and compare sizes. If these "nodules"..if thats what they are....have NOT grown in all this time...he says they may not even be cancer and therefor not recurrence or of importance. But why then do these "spots" light up on PET? He says I still have plenty of radiation from Cyberknife in my body that can cause this and he is basically not a fan of PETs anyway because there are a lot of false positives. He says he is not trying to offer me any false hopes but is not going to just assume another doctors opinion is correct. Especially since my CEA has consistently dropped over the past 9 months...all the way to normal range. BUT..it just rose from 3.8 to 5.9 last month. This was the first time in all those months and he says this could be from LOTS of things not related to cancer. I know that is a fact but EVERY time my CEA has risen it was followed by recurrence. Nothing is set in stone with cancer...he says...and patterns can and do change all the time.

    So, he redid my CEA Tuesday and is gathering all my previous scans for comparison and I meet back with him on the 17th to see what his findings are. I have been feeling great other than some unrelated back issues so I have no "symptoms" of anything. I do have to say it really excited me to think that "maybe" theres a chance that there is not a recurrence BUT... I am not holding my breath. Being stage IV the odds are definately against you so I will wait....and pray!

    Jennie

    That is very encouraging
    That is very encouraging news. My new onc does ct scans instead of pet scans for tbat very reason of false positives. I think Craig said his onc feels tbe same way about scans.

    Jeff
  • janie1
    janie1 Member Posts: 753 Member
    #4
    janderson1964 said:

    That is very encouraging
    That is very encouraging news. My new onc does ct scans instead of pet scans for tbat very reason of false positives. I think Craig said his onc feels tbe same way about scans.

    Jeff

    That's great that onc is
    That's great that onc is going to go over all the past scans in the last 9 months and do some measurements.
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #5
    idlehunters said:

    Hey Marie....
    Thanks so much for asking. So sweet of you to remember or even have this on your mind. You are awesome!

    Onc actually surprised me. Normally he is a chemo pusher. This time he said he is NOT convinced that I in fact have a recurrence and wants more proof before he does ANYTHING. The Rad Onc that did my Cyberknife did the PET/CT and gave me the results. My Onc said that is just 1 persons opinion and he wants to form his own. He says I have not had a PET/CT in 9 months and it was noted back then that I had multiple "lung nodules" or what they "thought" was lung nodules...but they have never been measured. Not then or on any other scan, MRI, or xray that has been done in the following months. Onc said he wants to gather every picture that has been taken of my lungs over the past 9 months and compare sizes. If these "nodules"..if thats what they are....have NOT grown in all this time...he says they may not even be cancer and therefor not recurrence or of importance. But why then do these "spots" light up on PET? He says I still have plenty of radiation from Cyberknife in my body that can cause this and he is basically not a fan of PETs anyway because there are a lot of false positives. He says he is not trying to offer me any false hopes but is not going to just assume another doctors opinion is correct. Especially since my CEA has consistently dropped over the past 9 months...all the way to normal range. BUT..it just rose from 3.8 to 5.9 last month. This was the first time in all those months and he says this could be from LOTS of things not related to cancer. I know that is a fact but EVERY time my CEA has risen it was followed by recurrence. Nothing is set in stone with cancer...he says...and patterns can and do change all the time.

    So, he redid my CEA Tuesday and is gathering all my previous scans for comparison and I meet back with him on the 17th to see what his findings are. I have been feeling great other than some unrelated back issues so I have no "symptoms" of anything. I do have to say it really excited me to think that "maybe" theres a chance that there is not a recurrence BUT... I am not holding my breath. Being stage IV the odds are definately against you so I will wait....and pray!

    Jennie

    Dear Jennie
    Yes, please do not hold your breath...while I am sure blue is a good color for you...it is not so much when it is your face! lol

    Glad to hear that the docs are doing due diligence before putting you on a treatment plan, which you might not need.

    We will keep praying and sending the "no cancer" vibes your way.

    Hugs,

    Marie who loves kitties
  • lauragb
    lauragb Member Posts: 370 Member
    #6
    idlehunters said:

    Hey Marie....
    Thanks so much for asking. So sweet of you to remember or even have this on your mind. You are awesome!

    Onc actually surprised me. Normally he is a chemo pusher. This time he said he is NOT convinced that I in fact have a recurrence and wants more proof before he does ANYTHING. The Rad Onc that did my Cyberknife did the PET/CT and gave me the results. My Onc said that is just 1 persons opinion and he wants to form his own. He says I have not had a PET/CT in 9 months and it was noted back then that I had multiple "lung nodules" or what they "thought" was lung nodules...but they have never been measured. Not then or on any other scan, MRI, or xray that has been done in the following months. Onc said he wants to gather every picture that has been taken of my lungs over the past 9 months and compare sizes. If these "nodules"..if thats what they are....have NOT grown in all this time...he says they may not even be cancer and therefor not recurrence or of importance. But why then do these "spots" light up on PET? He says I still have plenty of radiation from Cyberknife in my body that can cause this and he is basically not a fan of PETs anyway because there are a lot of false positives. He says he is not trying to offer me any false hopes but is not going to just assume another doctors opinion is correct. Especially since my CEA has consistently dropped over the past 9 months...all the way to normal range. BUT..it just rose from 3.8 to 5.9 last month. This was the first time in all those months and he says this could be from LOTS of things not related to cancer. I know that is a fact but EVERY time my CEA has risen it was followed by recurrence. Nothing is set in stone with cancer...he says...and patterns can and do change all the time.

    So, he redid my CEA Tuesday and is gathering all my previous scans for comparison and I meet back with him on the 17th to see what his findings are. I have been feeling great other than some unrelated back issues so I have no "symptoms" of anything. I do have to say it really excited me to think that "maybe" theres a chance that there is not a recurrence BUT... I am not holding my breath. Being stage IV the odds are definately against you so I will wait....and pray!

    Jennie

    This is some encouraging
    This is some encouraging news, Jennie. Hope you continue to feel great and find that those
    lung thangs are nothing.

    Light and Prayers.
    Laura
  • karguy
    karguy Member Posts: 1,020 Member
    #7
    idlehunters said:

    Hey Marie....
    Thanks so much for asking. So sweet of you to remember or even have this on your mind. You are awesome!

    Onc actually surprised me. Normally he is a chemo pusher. This time he said he is NOT convinced that I in fact have a recurrence and wants more proof before he does ANYTHING. The Rad Onc that did my Cyberknife did the PET/CT and gave me the results. My Onc said that is just 1 persons opinion and he wants to form his own. He says I have not had a PET/CT in 9 months and it was noted back then that I had multiple "lung nodules" or what they "thought" was lung nodules...but they have never been measured. Not then or on any other scan, MRI, or xray that has been done in the following months. Onc said he wants to gather every picture that has been taken of my lungs over the past 9 months and compare sizes. If these "nodules"..if thats what they are....have NOT grown in all this time...he says they may not even be cancer and therefor not recurrence or of importance. But why then do these "spots" light up on PET? He says I still have plenty of radiation from Cyberknife in my body that can cause this and he is basically not a fan of PETs anyway because there are a lot of false positives. He says he is not trying to offer me any false hopes but is not going to just assume another doctors opinion is correct. Especially since my CEA has consistently dropped over the past 9 months...all the way to normal range. BUT..it just rose from 3.8 to 5.9 last month. This was the first time in all those months and he says this could be from LOTS of things not related to cancer. I know that is a fact but EVERY time my CEA has risen it was followed by recurrence. Nothing is set in stone with cancer...he says...and patterns can and do change all the time.

    So, he redid my CEA Tuesday and is gathering all my previous scans for comparison and I meet back with him on the 17th to see what his findings are. I have been feeling great other than some unrelated back issues so I have no "symptoms" of anything. I do have to say it really excited me to think that "maybe" theres a chance that there is not a recurrence BUT... I am not holding my breath. Being stage IV the odds are definately against you so I will wait....and pray!

    Jennie

    Good luck
    I hope it is not a recurrence but something else.I will be praying for you.
  • Varmint5
    Varmint5 Member Posts: 384 Member
    #8
    idlehunters said:

    Hey Marie....
    Thanks so much for asking. So sweet of you to remember or even have this on your mind. You are awesome!

    Onc actually surprised me. Normally he is a chemo pusher. This time he said he is NOT convinced that I in fact have a recurrence and wants more proof before he does ANYTHING. The Rad Onc that did my Cyberknife did the PET/CT and gave me the results. My Onc said that is just 1 persons opinion and he wants to form his own. He says I have not had a PET/CT in 9 months and it was noted back then that I had multiple "lung nodules" or what they "thought" was lung nodules...but they have never been measured. Not then or on any other scan, MRI, or xray that has been done in the following months. Onc said he wants to gather every picture that has been taken of my lungs over the past 9 months and compare sizes. If these "nodules"..if thats what they are....have NOT grown in all this time...he says they may not even be cancer and therefor not recurrence or of importance. But why then do these "spots" light up on PET? He says I still have plenty of radiation from Cyberknife in my body that can cause this and he is basically not a fan of PETs anyway because there are a lot of false positives. He says he is not trying to offer me any false hopes but is not going to just assume another doctors opinion is correct. Especially since my CEA has consistently dropped over the past 9 months...all the way to normal range. BUT..it just rose from 3.8 to 5.9 last month. This was the first time in all those months and he says this could be from LOTS of things not related to cancer. I know that is a fact but EVERY time my CEA has risen it was followed by recurrence. Nothing is set in stone with cancer...he says...and patterns can and do change all the time.

    So, he redid my CEA Tuesday and is gathering all my previous scans for comparison and I meet back with him on the 17th to see what his findings are. I have been feeling great other than some unrelated back issues so I have no "symptoms" of anything. I do have to say it really excited me to think that "maybe" theres a chance that there is not a recurrence BUT... I am not holding my breath. Being stage IV the odds are definately against you so I will wait....and pray!

    Jennie

    Wow.
    Nice to hear of a doctor hinting they are not all God and all-knowing and never wrong. So... I am hoping his hunch is correct and will add my prayers for you!

    Sandy
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #9
    Varmint5 said:

    Wow.
    Nice to hear of a doctor hinting they are not all God and all-knowing and never wrong. So... I am hoping his hunch is correct and will add my prayers for you!

    Sandy

    CEA.....
    I could have called yesterday and got my CEA results from Tuesday but I just didn't want to know. Boy, that's a first! I figure I will know Thursday the 17th when I see my Onc again. I just want a few more days that I feel free and don't have to think about it or worry about it. So until Thursday I am going to pretend I am still NED and just deal with it then....... :-). Smile....maybe I will get another miracle!

    Jennie
  • jjaj133
    jjaj133 Member Posts: 867 Member
    #10
    idlehunters said:

    CEA.....
    I could have called yesterday and got my CEA results from Tuesday but I just didn't want to know. Boy, that's a first! I figure I will know Thursday the 17th when I see my Onc again. I just want a few more days that I feel free and don't have to think about it or worry about it. So until Thursday I am going to pretend I am still NED and just deal with it then....... :-). Smile....maybe I will get another miracle!

    Jennie

    I will certainly praying for
    I will certainly praying for that miracle too.
    Big Hugs,
    Judy
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #11
    idlehunters said:

    Hey Marie....
    Thanks so much for asking. So sweet of you to remember or even have this on your mind. You are awesome!

    Onc actually surprised me. Normally he is a chemo pusher. This time he said he is NOT convinced that I in fact have a recurrence and wants more proof before he does ANYTHING. The Rad Onc that did my Cyberknife did the PET/CT and gave me the results. My Onc said that is just 1 persons opinion and he wants to form his own. He says I have not had a PET/CT in 9 months and it was noted back then that I had multiple "lung nodules" or what they "thought" was lung nodules...but they have never been measured. Not then or on any other scan, MRI, or xray that has been done in the following months. Onc said he wants to gather every picture that has been taken of my lungs over the past 9 months and compare sizes. If these "nodules"..if thats what they are....have NOT grown in all this time...he says they may not even be cancer and therefor not recurrence or of importance. But why then do these "spots" light up on PET? He says I still have plenty of radiation from Cyberknife in my body that can cause this and he is basically not a fan of PETs anyway because there are a lot of false positives. He says he is not trying to offer me any false hopes but is not going to just assume another doctors opinion is correct. Especially since my CEA has consistently dropped over the past 9 months...all the way to normal range. BUT..it just rose from 3.8 to 5.9 last month. This was the first time in all those months and he says this could be from LOTS of things not related to cancer. I know that is a fact but EVERY time my CEA has risen it was followed by recurrence. Nothing is set in stone with cancer...he says...and patterns can and do change all the time.

    So, he redid my CEA Tuesday and is gathering all my previous scans for comparison and I meet back with him on the 17th to see what his findings are. I have been feeling great other than some unrelated back issues so I have no "symptoms" of anything. I do have to say it really excited me to think that "maybe" theres a chance that there is not a recurrence BUT... I am not holding my breath. Being stage IV the odds are definately against you so I will wait....and pray!

    Jennie

    No mets!!!
    Praying the onc is right!

    *hugs*
    Gail
  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
    #12
    tootsie1 said:

    No mets!!!
    Praying the onc is right!

    *hugs*
    Gail

    Waiting and praying with

    Waiting and praying with you. Enjoy the freedom you are feeling. Sounds like a very thorough onc....good.

    Cathleen Mary
  • dorookie
    dorookie Member Posts: 1,731 Member
    #13
    idlehunters said:

    CEA.....
    I could have called yesterday and got my CEA results from Tuesday but I just didn't want to know. Boy, that's a first! I figure I will know Thursday the 17th when I see my Onc again. I just want a few more days that I feel free and don't have to think about it or worry about it. So until Thursday I am going to pretend I am still NED and just deal with it then....... :-). Smile....maybe I will get another miracle!

    Jennie

    Well thats still a few days away
    Are you out parting or having a drink at least??? I know never a dull moment in your life huh? Are you out shopping or cruzing in that cool car of yours....

    Miss ya
    Beth
  • lesvanb
    lesvanb Member Posts: 905
    #14
    idlehunters said:

    Hey Marie....
    Thanks so much for asking. So sweet of you to remember or even have this on your mind. You are awesome!

    Onc actually surprised me. Normally he is a chemo pusher. This time he said he is NOT convinced that I in fact have a recurrence and wants more proof before he does ANYTHING. The Rad Onc that did my Cyberknife did the PET/CT and gave me the results. My Onc said that is just 1 persons opinion and he wants to form his own. He says I have not had a PET/CT in 9 months and it was noted back then that I had multiple "lung nodules" or what they "thought" was lung nodules...but they have never been measured. Not then or on any other scan, MRI, or xray that has been done in the following months. Onc said he wants to gather every picture that has been taken of my lungs over the past 9 months and compare sizes. If these "nodules"..if thats what they are....have NOT grown in all this time...he says they may not even be cancer and therefor not recurrence or of importance. But why then do these "spots" light up on PET? He says I still have plenty of radiation from Cyberknife in my body that can cause this and he is basically not a fan of PETs anyway because there are a lot of false positives. He says he is not trying to offer me any false hopes but is not going to just assume another doctors opinion is correct. Especially since my CEA has consistently dropped over the past 9 months...all the way to normal range. BUT..it just rose from 3.8 to 5.9 last month. This was the first time in all those months and he says this could be from LOTS of things not related to cancer. I know that is a fact but EVERY time my CEA has risen it was followed by recurrence. Nothing is set in stone with cancer...he says...and patterns can and do change all the time.

    So, he redid my CEA Tuesday and is gathering all my previous scans for comparison and I meet back with him on the 17th to see what his findings are. I have been feeling great other than some unrelated back issues so I have no "symptoms" of anything. I do have to say it really excited me to think that "maybe" theres a chance that there is not a recurrence BUT... I am not holding my breath. Being stage IV the odds are definately against you so I will wait....and pray!

    Jennie

    good news Jennie
    I like your onc's thinking; great to have a thinking skeptical oncologist! I sure hope this is a respite for you Jennie!!

    love, Leslie

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