CT scan result query

Ouch_Ouch_Ouch
Ouch_Ouch_Ouch Member Posts: 508 Member
edited October 2014 in Anal Cancer #1

If a scan shows that one has no evidence of disease (NED), will it actually say that?

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Comments

  • qv62
    qv62 Member Posts: 434 Member
    ouch

    the part of the report I recieved last week that I translated to NED  read "There is currently no evidence of primary or metastatic disease"

  • qv62
    qv62 Member Posts: 434 Member
    ouch

    It also said "the previous mass is no longer noted" I like that part too :)

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    qv62 said:

    ouch

    It also said "the previous mass is no longer noted" I like that part too :)

    Thank you

    Thanks for replying. My scan result was nowhere so succinct. It was paragraphs and paragraphs....

  • qv62
    qv62 Member Posts: 434 Member

    Thank you

    Thanks for replying. My scan result was nowhere so succinct. It was paragraphs and paragraphs....

    ouch

    mine was just sentences, pretty cut and dry which made it easy for me and the look on the doctors face when she handed it to me said it all, all good, I hope you are doing well

  • mp327
    mp327 Member Posts: 4,440 Member
    Ouch

    I have had many scans and some of them have stated "no evidence of disease" in the impression, some have had other wording indicating basically the same thing.  It probably boils down to the reading radiologist's choice of words.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    mp327 said:

    Ouch

    I have had many scans and some of them have stated "no evidence of disease" in the impression, some have had other wording indicating basically the same thing.  It probably boils down to the reading radiologist's choice of words.

    Irked...

    I had CT scans on March 31st, April 9th (for radiation planning), May 9th, and October 3rd. I had a PET scan on April 15th.

    My recent scan goes on and on about lymph nodes in various places (many not previously mentioned in other scans) that are stabile in size compared to previous scans, reduced in size, or normal size. (If nodes are a-okay, would they show up on the scan or not? I searched around the 'Net without finding an answer.)

    So, how is the primary tumor doing you ask? "The distal rectum and anus are collapsed and the mucosa is not definitively evaluated for residual disease on CT."  "Collapse" isn't mentioned on any of the other scans nor by the radio oncologist during his exams. It doesn't feel like a prolapse to me. So, the big money shot fizzled. >_<

    There's also a Tarlov cyst noted. This is something new to me and upon looking it up, I wish I hadn't.

    On a brighter note, the uterus that was removed 9 years ago is now seen in "a neutral position" and not in an incinerator somewhere! .^_^.

    This last scan feels like a big anti-climatic let-down. I'm not sure whether to cry or laugh....

    Tomorrow is The Big Three Month Sigmoidoscopy. Although it can't answer lymph node questions, it should find out what collapsed and why, fingers, toes, and eyes crossed.

    [Forgive any typos - I'm on the deck and can barely read the screen.]

     

     

  • pializ
    pializ Member Posts: 508 Member

    Irked...

    I had CT scans on March 31st, April 9th (for radiation planning), May 9th, and October 3rd. I had a PET scan on April 15th.

    My recent scan goes on and on about lymph nodes in various places (many not previously mentioned in other scans) that are stabile in size compared to previous scans, reduced in size, or normal size. (If nodes are a-okay, would they show up on the scan or not? I searched around the 'Net without finding an answer.)

    So, how is the primary tumor doing you ask? "The distal rectum and anus are collapsed and the mucosa is not definitively evaluated for residual disease on CT."  "Collapse" isn't mentioned on any of the other scans nor by the radio oncologist during his exams. It doesn't feel like a prolapse to me. So, the big money shot fizzled. >_<

    There's also a Tarlov cyst noted. This is something new to me and upon looking it up, I wish I hadn't.

    On a brighter note, the uterus that was removed 9 years ago is now seen in "a neutral position" and not in an incinerator somewhere! .^_^.

    This last scan feels like a big anti-climatic let-down. I'm not sure whether to cry or laugh....

    Tomorrow is The Big Three Month Sigmoidoscopy. Although it can't answer lymph node questions, it should find out what collapsed and why, fingers, toes, and eyes crossed.

    [Forgive any typos - I'm on the deck and can barely read the screen.]

     

     

    ouch ouch ouch

    I am confused! How can your uterus that was removed be in a neutral position? Was it even your scan? 

    Good luck with the sigmoidoscopy

    Liz

  • mp327
    mp327 Member Posts: 4,440 Member

    Irked...

    I had CT scans on March 31st, April 9th (for radiation planning), May 9th, and October 3rd. I had a PET scan on April 15th.

    My recent scan goes on and on about lymph nodes in various places (many not previously mentioned in other scans) that are stabile in size compared to previous scans, reduced in size, or normal size. (If nodes are a-okay, would they show up on the scan or not? I searched around the 'Net without finding an answer.)

    So, how is the primary tumor doing you ask? "The distal rectum and anus are collapsed and the mucosa is not definitively evaluated for residual disease on CT."  "Collapse" isn't mentioned on any of the other scans nor by the radio oncologist during his exams. It doesn't feel like a prolapse to me. So, the big money shot fizzled. >_<

    There's also a Tarlov cyst noted. This is something new to me and upon looking it up, I wish I hadn't.

    On a brighter note, the uterus that was removed 9 years ago is now seen in "a neutral position" and not in an incinerator somewhere! .^_^.

    This last scan feels like a big anti-climatic let-down. I'm not sure whether to cry or laugh....

    Tomorrow is The Big Three Month Sigmoidoscopy. Although it can't answer lymph node questions, it should find out what collapsed and why, fingers, toes, and eyes crossed.

    [Forgive any typos - I'm on the deck and can barely read the screen.]

     

     

    Ouch

    Have you had all of your scans at the same facility?  I hate to say it, but I do think there can be differences in machines.  And since radiologists are humans, we know there are definitely differences in them. 

    I have noticed that when I read the results of a recent scan, sometimes there are references to something that has grown or decreased in size, as compared to a previous scan on such and such a date.  When I pull the report on the previous scan, there is no mention of it.  I think some radiologists give a more complete evaluation of a film than others, mentioning everything that is seen, even if it is felt to be insignificant.  Others will not even mention such things, only noting things of significance or that are in the area that the scan is being done to evaluate.  One thing we have to remember is that the reading radiologist is looking at the film itself and we are only priviledged enough to look at the narrative report in most cases. 

    I had a CT scan in June 2013 on which the narrative does refer to an area of low attenuation on my liver.  I was supposed to see my oncologist a few days later to go over the scan results, but got a call from his office cancelling my appt. because he felt the scan results were so good that he didn't need to see me.  They scheduled an appt. for me to see him in 6 months.  I was supposed to have had a scan before that appt., but did not because he forgot to order it.  When I saw him in his office, he asked me about my scan.  When I told him I hadn't had one for 6 months, he got a horrible look on his face.  I told him none had been ordered, which he confirmed when he checked my chart.  He said we would just get one in June 2014, which I did.

    Fast forward to June 2014 and that's when I had the CT scan, which shows an area of low attenuation on my liver, gives measurements, and compares those measurements to the scan of June 2013.  When my oncologist saw that it had increased in size, he ordered a PET/CT scan for me, followed by a CT 2 months past that.  So, it's left me confused.  If it needs to be further evaluated in 2014, why didn't it need further evaluation in 2013?  Pelvic nodes that showed up on the first CT scan of 2014 but were not there in June 2013 were a concern as well.  After the PET/CT in June and the CT in August, it was determined that the lymph nodes were no longer seen.

    I am telling you all of this because this happens to so many of us.  My only saving grace is that my next door neighbor and dear friend happens to be a radiologist where I get all of my scans.  He is closely watching out for me and always sees my scans even before the reading radiologist sometimes.  I feel confident that he is not going to let anything slip under the radar.  If something needs immediate attention, he'll be on the horn to my oncologist.  I am so very fortunate and belive me, I realize that each and every day.

    My suggestion would be to have a serious discussion with your oncologist about your scan results.  You deserve to have all of your questions and concerns addressed.  I will be thinking of you tomorrow as you have your scope.  I hope you will get all good news.

    Martha 

  • eihtak
    eihtak Member Posts: 1,473 Member

    Irked...

    I had CT scans on March 31st, April 9th (for radiation planning), May 9th, and October 3rd. I had a PET scan on April 15th.

    My recent scan goes on and on about lymph nodes in various places (many not previously mentioned in other scans) that are stabile in size compared to previous scans, reduced in size, or normal size. (If nodes are a-okay, would they show up on the scan or not? I searched around the 'Net without finding an answer.)

    So, how is the primary tumor doing you ask? "The distal rectum and anus are collapsed and the mucosa is not definitively evaluated for residual disease on CT."  "Collapse" isn't mentioned on any of the other scans nor by the radio oncologist during his exams. It doesn't feel like a prolapse to me. So, the big money shot fizzled. >_<

    There's also a Tarlov cyst noted. This is something new to me and upon looking it up, I wish I hadn't.

    On a brighter note, the uterus that was removed 9 years ago is now seen in "a neutral position" and not in an incinerator somewhere! .^_^.

    This last scan feels like a big anti-climatic let-down. I'm not sure whether to cry or laugh....

    Tomorrow is The Big Three Month Sigmoidoscopy. Although it can't answer lymph node questions, it should find out what collapsed and why, fingers, toes, and eyes crossed.

    [Forgive any typos - I'm on the deck and can barely read the screen.]

     

     

    Ouch.....

    My recommendation is to laugh not cry, but first question a couple things just because we all deserve not to be confused about test results.

    Martha is very right, different radiologist have different more commonly used wording and cause comparison questions when looking back at previous scans. I always get a hard copy and after a general discussion with my onc, go over them at home and compare with the last one(s).

    Funny that ca treatment can grow a uterus, but amazing things do happen,lol. I once had a scan say that my gahlbladder had been surgically removed!!! Not to my knowledge?!? I accused (jokingly) my surgeon of taking it out during ostomy surgery and selling it. My onc looked at the scan and said it was actually collapsed and unseen behind (whatever it could be behind).

    My concern was that if the radiologist did not see this, could he be missing something else????

    There is always notation of my nodes, although I had pelvic node involvement in my dx.

    My onc stated that while scans are a useful tool in follow-up, they are only one of several in many cases and need be compared with blood work, symptoms, and physical exams.

    As far as the cyst, I have heard of but know very little. (The base of the spine I believe) Any symptoms of pain in that area? Result of treatment?

    Good luck with your sig. tomorrow.....keep us posted.

    katheryn

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    eihtak said:

    Ouch.....

    My recommendation is to laugh not cry, but first question a couple things just because we all deserve not to be confused about test results.

    Martha is very right, different radiologist have different more commonly used wording and cause comparison questions when looking back at previous scans. I always get a hard copy and after a general discussion with my onc, go over them at home and compare with the last one(s).

    Funny that ca treatment can grow a uterus, but amazing things do happen,lol. I once had a scan say that my gahlbladder had been surgically removed!!! Not to my knowledge?!? I accused (jokingly) my surgeon of taking it out during ostomy surgery and selling it. My onc looked at the scan and said it was actually collapsed and unseen behind (whatever it could be behind).

    My concern was that if the radiologist did not see this, could he be missing something else????

    There is always notation of my nodes, although I had pelvic node involvement in my dx.

    My onc stated that while scans are a useful tool in follow-up, they are only one of several in many cases and need be compared with blood work, symptoms, and physical exams.

    As far as the cyst, I have heard of but know very little. (The base of the spine I believe) Any symptoms of pain in that area? Result of treatment?

    Good luck with your sig. tomorrow.....keep us posted.

    katheryn

    Encouragement appreciated

    Thank you for the words of encouragement.

    "Funny that ca treatment can grow a uterus, but amazing things do happen,lol. I once had a scan say that my gahlbladder had been surgically removed!!!" Ha! Ha! Ha! Maybe we should contact NIH and suggest some clinical studies regarding spontaneous organ appearences and disapparences, secondary to cancer treatment.

    No symptoms of the Tarlov cyst, as far as I know, unless some of the bumper pain and/or rectal-anal collapse are related to it. It wasn't mentioned previously at all. It would have been nice for the interpretor to have stated the size of the thing for future comparasin.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    mp327 said:

    Ouch

    Have you had all of your scans at the same facility?  I hate to say it, but I do think there can be differences in machines.  And since radiologists are humans, we know there are definitely differences in them. 

    I have noticed that when I read the results of a recent scan, sometimes there are references to something that has grown or decreased in size, as compared to a previous scan on such and such a date.  When I pull the report on the previous scan, there is no mention of it.  I think some radiologists give a more complete evaluation of a film than others, mentioning everything that is seen, even if it is felt to be insignificant.  Others will not even mention such things, only noting things of significance or that are in the area that the scan is being done to evaluate.  One thing we have to remember is that the reading radiologist is looking at the film itself and we are only priviledged enough to look at the narrative report in most cases. 

    I had a CT scan in June 2013 on which the narrative does refer to an area of low attenuation on my liver.  I was supposed to see my oncologist a few days later to go over the scan results, but got a call from his office cancelling my appt. because he felt the scan results were so good that he didn't need to see me.  They scheduled an appt. for me to see him in 6 months.  I was supposed to have had a scan before that appt., but did not because he forgot to order it.  When I saw him in his office, he asked me about my scan.  When I told him I hadn't had one for 6 months, he got a horrible look on his face.  I told him none had been ordered, which he confirmed when he checked my chart.  He said we would just get one in June 2014, which I did.

    Fast forward to June 2014 and that's when I had the CT scan, which shows an area of low attenuation on my liver, gives measurements, and compares those measurements to the scan of June 2013.  When my oncologist saw that it had increased in size, he ordered a PET/CT scan for me, followed by a CT 2 months past that.  So, it's left me confused.  If it needs to be further evaluated in 2014, why didn't it need further evaluation in 2013?  Pelvic nodes that showed up on the first CT scan of 2014 but were not there in June 2013 were a concern as well.  After the PET/CT in June and the CT in August, it was determined that the lymph nodes were no longer seen.

    I am telling you all of this because this happens to so many of us.  My only saving grace is that my next door neighbor and dear friend happens to be a radiologist where I get all of my scans.  He is closely watching out for me and always sees my scans even before the reading radiologist sometimes.  I feel confident that he is not going to let anything slip under the radar.  If something needs immediate attention, he'll be on the horn to my oncologist.  I am so very fortunate and belive me, I realize that each and every day.

    My suggestion would be to have a serious discussion with your oncologist about your scan results.  You deserve to have all of your questions and concerns addressed.  I will be thinking of you tomorrow as you have your scope.  I hope you will get all good news.

    Martha 

    Consult?

    Thank you for the wisdom. The scans were done through the same medical center-ette, though at 2 different sites. Each interpretation was by a different person. Some scan results are more abbreviated than others. I did long for that statement of "no evidence of disease", though.

    Say - does your neighbor take in fiilms for consultation? If not, just slip them in your pile....

    My oncology appointment isn't for another 3 weeks, but I can't wait that long! After the scoping report has a chance to get to her, I'll call her office and ask what's up.

    My husband tells me to stop driving myself crazy as that's his job .^_^.

  • mp327
    mp327 Member Posts: 4,440 Member

    Consult?

    Thank you for the wisdom. The scans were done through the same medical center-ette, though at 2 different sites. Each interpretation was by a different person. Some scan results are more abbreviated than others. I did long for that statement of "no evidence of disease", though.

    Say - does your neighbor take in fiilms for consultation? If not, just slip them in your pile....

    My oncology appointment isn't for another 3 weeks, but I can't wait that long! After the scoping report has a chance to get to her, I'll call her office and ask what's up.

    My husband tells me to stop driving myself crazy as that's his job .^_^.

    Ouch

    I have had scans read by the same radiologist before, but I do not have one radiologist who reads every scan, except my next door neighbor.  He is not officially one of my doctors, but he is at the top of my list when it comes to who plays the most important role in my care.  My hospital has many radiologists--actually, they are their own group who contract with the hospital.  They can rotate between locations too.  Northside Hospital has multiple hospitals in the Atlanta metro area.  Only some of their doctors are trained to read PET scans, which requires additional training.

    I think the answer to your question about a consult would be no, unless your physician was the one to call and request it.  Sorry.

    I'm glad you'll be calling your oncologist prior to your appt. to get your questions asked and hopefully answered.  Oncologists are pretty good at looking at scans, but if there are still unanswered questions, I hope your doc will consult with the reading radiologist and get a better explanation.  Persistence may be necessary here!  Good luck!

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    mp327 said:

    Ouch

    I have had scans read by the same radiologist before, but I do not have one radiologist who reads every scan, except my next door neighbor.  He is not officially one of my doctors, but he is at the top of my list when it comes to who plays the most important role in my care.  My hospital has many radiologists--actually, they are their own group who contract with the hospital.  They can rotate between locations too.  Northside Hospital has multiple hospitals in the Atlanta metro area.  Only some of their doctors are trained to read PET scans, which requires additional training.

    I think the answer to your question about a consult would be no, unless your physician was the one to call and request it.  Sorry.

    I'm glad you'll be calling your oncologist prior to your appt. to get your questions asked and hopefully answered.  Oncologists are pretty good at looking at scans, but if there are still unanswered questions, I hope your doc will consult with the reading radiologist and get a better explanation.  Persistence may be necessary here!  Good luck!

    Blushing....

    "I think the answer to your question about a consult would be no, unless your physician was the one to call and request it."

    I'm sorry that I wasn't clear, but I was teasing you - out of jealousy for your good fortune, of course! .^_^.

  • mp327
    mp327 Member Posts: 4,440 Member

    Blushing....

    "I think the answer to your question about a consult would be no, unless your physician was the one to call and request it."

    I'm sorry that I wasn't clear, but I was teasing you - out of jealousy for your good fortune, of course! .^_^.

    Ouch

    I figured you were kidding, but you just never know.  My next door neighbor is an absolute angel.  Of all the good fortune I've had in my life, having him as a friend is right at the top of the list!

  • sandysp
    sandysp Member Posts: 868 Member

    Encouragement appreciated

    Thank you for the words of encouragement.

    "Funny that ca treatment can grow a uterus, but amazing things do happen,lol. I once had a scan say that my gahlbladder had been surgically removed!!!" Ha! Ha! Ha! Maybe we should contact NIH and suggest some clinical studies regarding spontaneous organ appearences and disapparences, secondary to cancer treatment.

    No symptoms of the Tarlov cyst, as far as I know, unless some of the bumper pain and/or rectal-anal collapse are related to it. It wasn't mentioned previously at all. It would have been nice for the interpretor to have stated the size of the thing for future comparasin.

    What a mystery!

    When you meet with the Oncologist be sure you have your mouth wide open in a well deserved GAPE.

    You deserve some good explanations.

    All the best,

    Sandy

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    Sigmoidoscopy done Friday evening.

    Why must every single thing hurt so? I'm going to have to change my name to OUCH!!!_OUCH!!!_OUCH!!! .^_^.  And, again, how often do we have to go through this? I had to be catherized in order to leave the hospital, the first time anesthesia has effected me that way. Either that or all the Betadine sealed my urethra shut...

    I'm trying not to eat because passing BMs is when it really hurts. I'm drinking Boost (low residue), but after I took a Percoset last night, it made me queasy and the last Boost came right back up. Bummer.

    The colo-rectal doc explained that the word on the scan, "collapsed", is not a pathology. The GI tract is a potential tube. When there's no food, stool, air, or medical scopes in it, it relaxes shut on itself. He also said that the geography where my tumor is/was is difficult to visualize on a scan in the first place.

    All in all, I really, really hate pain.

  • mp327
    mp327 Member Posts: 4,440 Member

    Sigmoidoscopy done Friday evening.

    Why must every single thing hurt so? I'm going to have to change my name to OUCH!!!_OUCH!!!_OUCH!!! .^_^.  And, again, how often do we have to go through this? I had to be catherized in order to leave the hospital, the first time anesthesia has effected me that way. Either that or all the Betadine sealed my urethra shut...

    I'm trying not to eat because passing BMs is when it really hurts. I'm drinking Boost (low residue), but after I took a Percoset last night, it made me queasy and the last Boost came right back up. Bummer.

    The colo-rectal doc explained that the word on the scan, "collapsed", is not a pathology. The GI tract is a potential tube. When there's no food, stool, air, or medical scopes in it, it relaxes shut on itself. He also said that the geography where my tumor is/was is difficult to visualize on a scan in the first place.

    All in all, I really, really hate pain.

    Ouch

    So sorry this was such a bad experience for you!  I hope you heal fast so you can go back to eating real food.  Here's wishing a night with less pain.

    Martha

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    mp327 said:

    Ouch

    So sorry this was such a bad experience for you!  I hope you heal fast so you can go back to eating real food.  Here's wishing a night with less pain.

    Martha

    Thanks....

    Apparently, I have a delicate anal flower back there.

    .^_^.

    Maybe the doc really dug for the biopsies. Not every sigmoidoscopy in the future will need to have biopsies done, will they?

  • mp327
    mp327 Member Posts: 4,440 Member

    Thanks....

    Apparently, I have a delicate anal flower back there.

    .^_^.

    Maybe the doc really dug for the biopsies. Not every sigmoidoscopy in the future will need to have biopsies done, will they?

    Ouch

    Neither my colorectal doctor nor my radiation oncologist favor doing biopsies post-treatment, due to potential healing complications.  The only exception would be if there are symptoms indicating the need for one.  I hope you are feeling better now. 

  • jcruz
    jcruz Member Posts: 379 Member

    Thanks....

    Apparently, I have a delicate anal flower back there.

    .^_^.

    Maybe the doc really dug for the biopsies. Not every sigmoidoscopy in the future will need to have biopsies done, will they?

    delicate flower!

    Hi Ouch

    Three weeks ago I had an exam and anoscopy under anesthesia and my surgeon took a biopsy of a questionable area.  It turned out to be nothing.  Hooray.  And a big ow!  I went home packed with gauze to catch the bleeding and I still am seeing some light blood on the pads I wear all the time. I had to take percocet for about 5 days and pull out my special pillow for my office chair.  It was not fun to say the least.  The last EUA I had there was no biopsy so the recovery was minimal.  I hope for both of us that no more biopsies are necessary.

    Janet