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What do you make of these CT scan findings?

Forums General Melanoma Community What do you make of these CT scan findings?

  • Post
    swissfarm7
    Participant

      After my husband's Stage IIIB diagnosis this past summer, he went to Seattle Cancer Care Alliance/University of Washington Medicine, and we were in very good hands.  His follow-up care is local, and I feel far less confident about the care.   Example:  He had a CT scan done a couple of weeks back.  (He had his first scan at SCCA and will have one every six months for the next couple of years.)  The week after the scan, he had an appointment with the oncologist.  They discussed how things are going with the interferon, but the doctor made no m

      After my husband's Stage IIIB diagnosis this past summer, he went to Seattle Cancer Care Alliance/University of Washington Medicine, and we were in very good hands.  His follow-up care is local, and I feel far less confident about the care.   Example:  He had a CT scan done a couple of weeks back.  (He had his first scan at SCCA and will have one every six months for the next couple of years.)  The week after the scan, he had an appointment with the oncologist.  They discussed how things are going with the interferon, but the doctor made no mention of the scan until I brought it up.  He said everything looked good. 

      Yesterday I accessed the scan results myself.   The summar of the findings are as follows ~ I've highlighted the portions that raise a red flag for me:

      1) Three statisticall benign pleural and sub-pleural nodules as detailed above.  Follow-up noncontrast CT chest CT in 6 months may be performed for further evaluation, as clinically indicated.

      2) Irregularly marginated soft tissue density within the left axilla surrounded by multiple surgical clips.  This is nonspecific but may represent residual or recurrent disease.  Postoperative changes could have similar appearance.  Clinical correlation is advised.  CT directed biopsy may be performed for further evaluation, if clinically indicated. 

      Alert: Unexpected findings.

      * * * * *

      To me, these are not "everything looks good" findings.  (Hmm…sorry this is still bolded ~ and italicized, too.  I can't seem to change the font.)  I emailed the oncologist with my concerns.  He replied to the effect, "Yes, we'll have to talk about it at the next appointment."  My confidence isn't increasing here.  It's like…Did he even read all the findings before or what?  Beyond that, the findings themselves concern me.  What are your thoughts? 

      Cheers,

      Colleen

    Viewing 14 reply threads
    • Replies
        mama1960
        Participant

          Sometimes you really have to hold their feet to the fire. I feel that you just keep asking until you get an answer that makes sense to you. If you really feel unconfident about your doctor, you may need to think about a second opinion. This is a fight for life, nothing less. is your oncologist a melanoma specialist? Something to look into.

            vivian
            Participant

              I have learned to get a print-out of any report as soon as it is available on the hospital system's "powerchart".  My primary care physician (not the oncologist)  watches for me the day of scans and calls me with the results – usually the same day.  Then he faxes the report itself, which I pour over and try to decipher.  If I have questions, I am on the phone right away to the medical oncologist.  His office can take a week or more to give me results if I don't call.  Sometimes I think he has too many sets of urgent scans to look at everyday, and my "routine" ones are way down on his list.  Sure wish I had been as assertive two years ago when my primary was first discovered – maybe things wouldn't have gotten to stage III before being diagnosed.   I agree with Mama1960 – if this is worrying you (and I can sure understand why it would), get a second opinion and/or bug your oncologist until you get the answers you need.  

              vivian
              Participant

                I have learned to get a print-out of any report as soon as it is available on the hospital system's "powerchart".  My primary care physician (not the oncologist)  watches for me the day of scans and calls me with the results – usually the same day.  Then he faxes the report itself, which I pour over and try to decipher.  If I have questions, I am on the phone right away to the medical oncologist.  His office can take a week or more to give me results if I don't call.  Sometimes I think he has too many sets of urgent scans to look at everyday, and my "routine" ones are way down on his list.  Sure wish I had been as assertive two years ago when my primary was first discovered – maybe things wouldn't have gotten to stage III before being diagnosed.   I agree with Mama1960 – if this is worrying you (and I can sure understand why it would), get a second opinion and/or bug your oncologist until you get the answers you need.  

                vivian
                Participant

                  I have learned to get a print-out of any report as soon as it is available on the hospital system's "powerchart".  My primary care physician (not the oncologist)  watches for me the day of scans and calls me with the results – usually the same day.  Then he faxes the report itself, which I pour over and try to decipher.  If I have questions, I am on the phone right away to the medical oncologist.  His office can take a week or more to give me results if I don't call.  Sometimes I think he has too many sets of urgent scans to look at everyday, and my "routine" ones are way down on his list.  Sure wish I had been as assertive two years ago when my primary was first discovered – maybe things wouldn't have gotten to stage III before being diagnosed.   I agree with Mama1960 – if this is worrying you (and I can sure understand why it would), get a second opinion and/or bug your oncologist until you get the answers you need.  

                mama1960
                Participant

                  Sometimes you really have to hold their feet to the fire. I feel that you just keep asking until you get an answer that makes sense to you. If you really feel unconfident about your doctor, you may need to think about a second opinion. This is a fight for life, nothing less. is your oncologist a melanoma specialist? Something to look into.

                  mama1960
                  Participant

                    Sometimes you really have to hold their feet to the fire. I feel that you just keep asking until you get an answer that makes sense to you. If you really feel unconfident about your doctor, you may need to think about a second opinion. This is a fight for life, nothing less. is your oncologist a melanoma specialist? Something to look into.

                    lhaley
                    Participant

                      Why don't you send a copy of the CT on a disc to your Seattle oncologist and ask for his opinion. 

                      I do know that many don't have scans while on interfuron because false negatives are often given. 

                      I hope it ends up being nothing.

                      Linda

                        POW
                        Participant

                          I agree with all of the other posters. Get a disk of the CT scans and a copy of the radiology report and send them to Seattle. Be sure to include any specific questions you would like then to answer (like "Should my husband have a CT guided needle biopsy of this node?"). Being proactive is not only best for your husand's prognosis, but it will help you sleep better and you will be learning more about this whole melanoma treatment process as you go along.

                          POW
                          Participant

                            I agree with all of the other posters. Get a disk of the CT scans and a copy of the radiology report and send them to Seattle. Be sure to include any specific questions you would like then to answer (like "Should my husband have a CT guided needle biopsy of this node?"). Being proactive is not only best for your husand's prognosis, but it will help you sleep better and you will be learning more about this whole melanoma treatment process as you go along.

                            POW
                            Participant

                              I agree with all of the other posters. Get a disk of the CT scans and a copy of the radiology report and send them to Seattle. Be sure to include any specific questions you would like then to answer (like "Should my husband have a CT guided needle biopsy of this node?"). Being proactive is not only best for your husand's prognosis, but it will help you sleep better and you will be learning more about this whole melanoma treatment process as you go along.

                            lhaley
                            Participant

                              Why don't you send a copy of the CT on a disc to your Seattle oncologist and ask for his opinion. 

                              I do know that many don't have scans while on interfuron because false negatives are often given. 

                              I hope it ends up being nothing.

                              Linda

                              lhaley
                              Participant

                                Why don't you send a copy of the CT on a disc to your Seattle oncologist and ask for his opinion. 

                                I do know that many don't have scans while on interfuron because false negatives are often given. 

                                I hope it ends up being nothing.

                                Linda

                                Swanee
                                Participant

                                  Hi Colleen,

                                  I am really bad at reading and interpreting medical jargon!  Everything sounds scarry and life threatening, even benign bumps!

                                  I just want you to know that I  go to SCCA and am being treated there and feel they are on top of things.  They are in constant communication with the top melanoma dr.'s in the country and know all the in's and out's of  each other's clinical trials and can and will recommend sending you to different facilities for treatment  if that's an option.  I'm not sure where "local" is for you,  but I would strongly recommend that you see a melanoma specialist and if you're not, your oncologist should be  working with one who can  recommend such treatments or direction.  Make no mistake, some dr.'s have egos that do not allow them to  recommend you to someone more knowledgeable.  This is your life, if you're not comfortable or things are not being explained to you in a way that makes you feel confident in your doctor,  it might be time to move on to someone else, or worth the travel time to go back to SCCA.

                                  Wishing your husband success in future scans and most of all a NED status.  

                                  Best wishes to both of you,

                                  Swanee

                                  Swanee
                                  Participant

                                    Hi Colleen,

                                    I am really bad at reading and interpreting medical jargon!  Everything sounds scarry and life threatening, even benign bumps!

                                    I just want you to know that I  go to SCCA and am being treated there and feel they are on top of things.  They are in constant communication with the top melanoma dr.'s in the country and know all the in's and out's of  each other's clinical trials and can and will recommend sending you to different facilities for treatment  if that's an option.  I'm not sure where "local" is for you,  but I would strongly recommend that you see a melanoma specialist and if you're not, your oncologist should be  working with one who can  recommend such treatments or direction.  Make no mistake, some dr.'s have egos that do not allow them to  recommend you to someone more knowledgeable.  This is your life, if you're not comfortable or things are not being explained to you in a way that makes you feel confident in your doctor,  it might be time to move on to someone else, or worth the travel time to go back to SCCA.

                                    Wishing your husband success in future scans and most of all a NED status.  

                                    Best wishes to both of you,

                                    Swanee

                                    Swanee
                                    Participant

                                      Hi Colleen,

                                      I am really bad at reading and interpreting medical jargon!  Everything sounds scarry and life threatening, even benign bumps!

                                      I just want you to know that I  go to SCCA and am being treated there and feel they are on top of things.  They are in constant communication with the top melanoma dr.'s in the country and know all the in's and out's of  each other's clinical trials and can and will recommend sending you to different facilities for treatment  if that's an option.  I'm not sure where "local" is for you,  but I would strongly recommend that you see a melanoma specialist and if you're not, your oncologist should be  working with one who can  recommend such treatments or direction.  Make no mistake, some dr.'s have egos that do not allow them to  recommend you to someone more knowledgeable.  This is your life, if you're not comfortable or things are not being explained to you in a way that makes you feel confident in your doctor,  it might be time to move on to someone else, or worth the travel time to go back to SCCA.

                                      Wishing your husband success in future scans and most of all a NED status.  

                                      Best wishes to both of you,

                                      Swanee

                                      Swanee
                                      Participant

                                        Hi Colleen,

                                        I am really bad at reading and interpreting medical jargon!  Everything sounds scarry and life threatening, even benign bumps!

                                        I just want you to know that I  go to SCCA and am being treated there and feel they are on top of things.  They are in constant communication with the top melanoma dr.'s in the country and know all the in's and out's of  each other's clinical trials and can and will recommend sending you to different facilities for treatment  if that's an option.  I'm not sure where "local" is for you,  but I would strongly recommend that you see a melanoma specialist and if you're not, your oncologist should be  working with one who can  recommend such treatments or direction.  Make no mistake, some dr.'s have egos that do not allow them to  recommend you to someone more knowledgeable.  This is your life, if you're not comfortable or things are not being explained to you in a way that makes you feel confident in your doctor,  it might be time to move on to someone else, or worth the travel time to go back to SCCA.

                                        Wishing your husband success in future scans and most of all a NED status.  

                                        Best wishes to both of you,

                                        Swanee

                                        Swanee
                                        Participant

                                          Hi Colleen,

                                          I am really bad at reading and interpreting medical jargon!  Everything sounds scarry and life threatening, even benign bumps!

                                          I just want you to know that I  go to SCCA and am being treated there and feel they are on top of things.  They are in constant communication with the top melanoma dr.'s in the country and know all the in's and out's of  each other's clinical trials and can and will recommend sending you to different facilities for treatment  if that's an option.  I'm not sure where "local" is for you,  but I would strongly recommend that you see a melanoma specialist and if you're not, your oncologist should be  working with one who can  recommend such treatments or direction.  Make no mistake, some dr.'s have egos that do not allow them to  recommend you to someone more knowledgeable.  This is your life, if you're not comfortable or things are not being explained to you in a way that makes you feel confident in your doctor,  it might be time to move on to someone else, or worth the travel time to go back to SCCA.

                                          Wishing your husband success in future scans and most of all a NED status.  

                                          Best wishes to both of you,

                                          Swanee

                                          Swanee
                                          Participant

                                            Hi Colleen,

                                            I am really bad at reading and interpreting medical jargon!  Everything sounds scarry and life threatening, even benign bumps!

                                            I just want you to know that I  go to SCCA and am being treated there and feel they are on top of things.  They are in constant communication with the top melanoma dr.'s in the country and know all the in's and out's of  each other's clinical trials and can and will recommend sending you to different facilities for treatment  if that's an option.  I'm not sure where "local" is for you,  but I would strongly recommend that you see a melanoma specialist and if you're not, your oncologist should be  working with one who can  recommend such treatments or direction.  Make no mistake, some dr.'s have egos that do not allow them to  recommend you to someone more knowledgeable.  This is your life, if you're not comfortable or things are not being explained to you in a way that makes you feel confident in your doctor,  it might be time to move on to someone else, or worth the travel time to go back to SCCA.

                                            Wishing your husband success in future scans and most of all a NED status.  

                                            Best wishes to both of you,

                                            Swanee

                                            Janner
                                            Participant

                                              My thoughts…. the radiologists who read this stuff HAVE TO give the worst case – just to rule things out.  But if you read the report, they give as much emphasis on "postoperative changes have a similar appearance" as they do to recurrence.  You might not have highlighted that bit, but that's how I read it.  So basically, based on the recent surgery and interferon, this doctor is saying we should let the surgical area heal a bit longer before we jump to any conclusions as post operative changes are very likely the cause.  Certainly, you can request that your husband have an immediate biopsy of the area.  More surgery.  You can also ask for another interpretation of the CT scan which will likely give both possibilities again.  But short of doing a biopsy right now, what they will really want to do is monitor the area over time i.e. the next scan.  THEN you can compare and see if things have healed or if things have progressed.  A PET scan would likely be as inconclusive with recent surgery so that option isn't much better.  My father has had lung cancer and his reports read like there are tons of ugly things in his lungs IF YOU ONLY READ ONE REPORT.  But if you do a comparison from scan to scan, you'll see that there are very little changes.  So I read it that your doctor and the radiologist most likely think this is post operative changes (hence no surgery) but they can't absolutely rule out a recurrence.  If your husband is unwilling to wait until the next scan for comparison and wants to have more surgery and an immediate answer, then you need to tell the doctor that your husband requires surgery and an answer now.  You can obviously send the scan to Seattle but I honestly don't think another read could rule out one possibility over the other – there will still be some uncertainty. 

                                              The biggest problem with cancer is the uncertainty factor — and that's where your husband is now.  What can he live with?  Does he want this biopsied?  Is he willing to wait until the next scan to see if there are changes?  He's the one who really has to be comfortable with things.  It's easy for us to say "biopsy it" or "get a second opinion", but I certainly see where your doctor is coming from.  If you don't like his style or opinion, then it might be time to move on.  My opinion is a bit contrary to everyone elses here, but scans are only so telling by themselves and change over time is one of the best ways to rule out benign or cancerous stuff.

                                              In the end, your husband has to do what HE feels works best for him – no one else.

                                              Best wishes,

                                              Janner

                                              Janner
                                              Participant

                                                My thoughts…. the radiologists who read this stuff HAVE TO give the worst case – just to rule things out.  But if you read the report, they give as much emphasis on "postoperative changes have a similar appearance" as they do to recurrence.  You might not have highlighted that bit, but that's how I read it.  So basically, based on the recent surgery and interferon, this doctor is saying we should let the surgical area heal a bit longer before we jump to any conclusions as post operative changes are very likely the cause.  Certainly, you can request that your husband have an immediate biopsy of the area.  More surgery.  You can also ask for another interpretation of the CT scan which will likely give both possibilities again.  But short of doing a biopsy right now, what they will really want to do is monitor the area over time i.e. the next scan.  THEN you can compare and see if things have healed or if things have progressed.  A PET scan would likely be as inconclusive with recent surgery so that option isn't much better.  My father has had lung cancer and his reports read like there are tons of ugly things in his lungs IF YOU ONLY READ ONE REPORT.  But if you do a comparison from scan to scan, you'll see that there are very little changes.  So I read it that your doctor and the radiologist most likely think this is post operative changes (hence no surgery) but they can't absolutely rule out a recurrence.  If your husband is unwilling to wait until the next scan for comparison and wants to have more surgery and an immediate answer, then you need to tell the doctor that your husband requires surgery and an answer now.  You can obviously send the scan to Seattle but I honestly don't think another read could rule out one possibility over the other – there will still be some uncertainty. 

                                                The biggest problem with cancer is the uncertainty factor — and that's where your husband is now.  What can he live with?  Does he want this biopsied?  Is he willing to wait until the next scan to see if there are changes?  He's the one who really has to be comfortable with things.  It's easy for us to say "biopsy it" or "get a second opinion", but I certainly see where your doctor is coming from.  If you don't like his style or opinion, then it might be time to move on.  My opinion is a bit contrary to everyone elses here, but scans are only so telling by themselves and change over time is one of the best ways to rule out benign or cancerous stuff.

                                                In the end, your husband has to do what HE feels works best for him – no one else.

                                                Best wishes,

                                                Janner

                                                Janner
                                                Participant

                                                  My thoughts…. the radiologists who read this stuff HAVE TO give the worst case – just to rule things out.  But if you read the report, they give as much emphasis on "postoperative changes have a similar appearance" as they do to recurrence.  You might not have highlighted that bit, but that's how I read it.  So basically, based on the recent surgery and interferon, this doctor is saying we should let the surgical area heal a bit longer before we jump to any conclusions as post operative changes are very likely the cause.  Certainly, you can request that your husband have an immediate biopsy of the area.  More surgery.  You can also ask for another interpretation of the CT scan which will likely give both possibilities again.  But short of doing a biopsy right now, what they will really want to do is monitor the area over time i.e. the next scan.  THEN you can compare and see if things have healed or if things have progressed.  A PET scan would likely be as inconclusive with recent surgery so that option isn't much better.  My father has had lung cancer and his reports read like there are tons of ugly things in his lungs IF YOU ONLY READ ONE REPORT.  But if you do a comparison from scan to scan, you'll see that there are very little changes.  So I read it that your doctor and the radiologist most likely think this is post operative changes (hence no surgery) but they can't absolutely rule out a recurrence.  If your husband is unwilling to wait until the next scan for comparison and wants to have more surgery and an immediate answer, then you need to tell the doctor that your husband requires surgery and an answer now.  You can obviously send the scan to Seattle but I honestly don't think another read could rule out one possibility over the other – there will still be some uncertainty. 

                                                  The biggest problem with cancer is the uncertainty factor — and that's where your husband is now.  What can he live with?  Does he want this biopsied?  Is he willing to wait until the next scan to see if there are changes?  He's the one who really has to be comfortable with things.  It's easy for us to say "biopsy it" or "get a second opinion", but I certainly see where your doctor is coming from.  If you don't like his style or opinion, then it might be time to move on.  My opinion is a bit contrary to everyone elses here, but scans are only so telling by themselves and change over time is one of the best ways to rule out benign or cancerous stuff.

                                                  In the end, your husband has to do what HE feels works best for him – no one else.

                                                  Best wishes,

                                                  Janner

                                              Viewing 14 reply threads
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