Question from a patient partner...on reoccurance....

KathiM
KathiM Member Posts: 8,028 Member
edited March 2014 in Colorectal Cancer #1
One of my favorite PP's asked me about scans and reoccurance.

Her initial was in the rectum. Her reoccurance was in the lung. She is in treatment now, but her onc says he wants a PET scan every 6 weeks to watch her progress, she's a bit nervous about all the radiation, both past and future....Any thoughts? Is this 'normal'?

Hugs, Kathi

Comments

  • dorookie
    dorookie Member Posts: 1,731 Member
    Radiation from the PET scan?
    Is she worried about the radiation from the PET scan? If so I believe that is a small amount, but I am not an expert. I too, have had a reoccurance in the lung, they just recently did surgery to remove it, and from my my ONC said, I wont have to have radiation at all, just mop up chemo for 6 months. Is her case different? Is she being told she will have to have radiation as well as chemo? If that is the case then I am not sure of the side affects. I do have faith in my ONC and I dont see where any ONC is going to put one through more radiation if it were going to be worse for them, wouldnt you agree?

    Good Luck to your friend.
    God Bless
    Beth
  • Seems unusual
    Kathi, I also had rectal cancer with recent mets to my lung and surgery to remove the nodules. My thoracic surgeon is on the staff of the Medical College of Wisconsin and practices at a large teaching hospital. When I had my last PET and CT he told me that he would not recommend scanning sooner than every 3 months which is the shortest amount of time to identify any noticable difference. I don't think that radiation exposure was a big concern. Of course everyone's situation is different and it's possible that the location of the cancer is the concern or the rate of growth which might cause an obstruction. Might be beneficial to ask the oncologist for more information on that decision to scan so often.
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    Although I really like the
    Although I really like the doctor's aggressiveness, it does seem a little over the top to request Pet scans every 6 weeks. I'm not sure what he is hoping to accomplish, unless surgery is his end game. Is surgery an option?
  • kimby
    kimby Member Posts: 797
    PET scans
    My question is why PET's? They are usually used to find new mets and CT's would help determine tumor changes. Is he worried about more spread or monitoring what's already there? Also, 6 weeks isn't usually enough time to see appreciable difference in size is it? I thought 3 months was about as soon as changes would normally be noticeable. It sounds like he is looking for more spread. Yikes!

    Kimby
  • standbyme
    standbyme Member Posts: 41
    kimby said:

    PET scans
    My question is why PET's? They are usually used to find new mets and CT's would help determine tumor changes. Is he worried about more spread or monitoring what's already there? Also, 6 weeks isn't usually enough time to see appreciable difference in size is it? I thought 3 months was about as soon as changes would normally be noticeable. It sounds like he is looking for more spread. Yikes!

    Kimby

    scans
    My husband initially had rectal cancer two years ago with recurrance to lungs this year. He is currently receiving chemo and gets Cat scans every three months.

    Judy
  • KathiM
    KathiM Member Posts: 8,028 Member
    dorookie said:

    Radiation from the PET scan?
    Is she worried about the radiation from the PET scan? If so I believe that is a small amount, but I am not an expert. I too, have had a reoccurance in the lung, they just recently did surgery to remove it, and from my my ONC said, I wont have to have radiation at all, just mop up chemo for 6 months. Is her case different? Is she being told she will have to have radiation as well as chemo? If that is the case then I am not sure of the side affects. I do have faith in my ONC and I dont see where any ONC is going to put one through more radiation if it were going to be worse for them, wouldnt you agree?

    Good Luck to your friend.
    God Bless
    Beth

    No treatment radiation...
    Thank you, Beth, for responding! She has had some many scans, etc, but, no...she isn't scheduled for more treatment radiation...

    I will pass the 'good luck' to her!

    Hugs, Kathi
  • KathiM
    KathiM Member Posts: 8,028 Member

    Seems unusual
    Kathi, I also had rectal cancer with recent mets to my lung and surgery to remove the nodules. My thoracic surgeon is on the staff of the Medical College of Wisconsin and practices at a large teaching hospital. When I had my last PET and CT he told me that he would not recommend scanning sooner than every 3 months which is the shortest amount of time to identify any noticable difference. I don't think that radiation exposure was a big concern. Of course everyone's situation is different and it's possible that the location of the cancer is the concern or the rate of growth which might cause an obstruction. Might be beneficial to ask the oncologist for more information on that decision to scan so often.

    I'll pass it along...
    She was a bit surprised, too. She has had the tumor removed, and the surgeon was surprised that a PET scan, which found more activity, was done so soon after surgery...he feels that it is just residual healing.

    Thank you for the thoughts!

    Hugs, Kathi
  • KathiM
    KathiM Member Posts: 8,028 Member

    Although I really like the
    Although I really like the doctor's aggressiveness, it does seem a little over the top to request Pet scans every 6 weeks. I'm not sure what he is hoping to accomplish, unless surgery is his end game. Is surgery an option?

    Surgery already...clear margins...
    Thank you, Monica...this guy is one of the top oncs in CRC. But, she has medical connections like me, so she is more questioning (like me...lol!) than the 'regular guys'....

    Hugs, Kathi
  • KathiM
    KathiM Member Posts: 8,028 Member
    kimby said:

    PET scans
    My question is why PET's? They are usually used to find new mets and CT's would help determine tumor changes. Is he worried about more spread or monitoring what's already there? Also, 6 weeks isn't usually enough time to see appreciable difference in size is it? I thought 3 months was about as soon as changes would normally be noticeable. It sounds like he is looking for more spread. Yikes!

    Kimby

    I will pass this question along...
    Thank you, Kimby, for that question....I don't know, but I'll pass it along!

    Her onc is operating as if there is residual spread, after the resection or the lung. That is yet to be determined...but, he is proud to be one of the best CRC doctors in the nation, and wants to stay that way.

    Hugs, Kathi

    Hugs, Kathi
  • KathiM
    KathiM Member Posts: 8,028 Member
    standbyme said:

    scans
    My husband initially had rectal cancer two years ago with recurrance to lungs this year. He is currently receiving chemo and gets Cat scans every three months.

    Judy

    Thank you, Judy!
    Thank you for the info! How is hubby doing?

    Hugs, Kathi
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    KathiM said:

    I will pass this question along...
    Thank you, Kimby, for that question....I don't know, but I'll pass it along!

    Her onc is operating as if there is residual spread, after the resection or the lung. That is yet to be determined...but, he is proud to be one of the best CRC doctors in the nation, and wants to stay that way.

    Hugs, Kathi

    Hugs, Kathi

    Go for it...
    Then I say...go for it. My biggest complaint is that I have to continually fight because my doctors are not aggressive enough. It sounds like she is in great hands. Please wish her luck. Monica
  • standbyme
    standbyme Member Posts: 41
    KathiM said:

    Thank you, Judy!
    Thank you for the info! How is hubby doing?

    Hugs, Kathi

    Hanging in there
    He's doing okay. It's tough but others have a harder time.

    Judy
  • KathiM
    KathiM Member Posts: 8,028 Member
    standbyme said:

    Hanging in there
    He's doing okay. It's tough but others have a harder time.

    Judy

    He's lucky to have you...
    and your warm concern! Give him, and you, my biggest hugs...(lol-then you have to hug him twice!!!)

    Hugs, Kathi
  • taraHK
    taraHK Member Posts: 1,952 Member
    seems very frequent
    Every 6 weeks seems pretty frequent. My oncologist is now getting concerned (or should I say "mindful") about radiation exposure for me. He is leaning towards more MRIs, rather than PET/CT, as MRI involves no radiation exposure. I don't know what is available at her hospital, what insurance would cover, etc but I wonder if MRI is an option for her??

    Tara
  • KathiM
    KathiM Member Posts: 8,028 Member
    taraHK said:

    seems very frequent
    Every 6 weeks seems pretty frequent. My oncologist is now getting concerned (or should I say "mindful") about radiation exposure for me. He is leaning towards more MRIs, rather than PET/CT, as MRI involves no radiation exposure. I don't know what is available at her hospital, what insurance would cover, etc but I wonder if MRI is an option for her??

    Tara

    Wow! Great idea....
    I'll pass it along...she has a great attitude that she will beat this, too...and I believe her!!!!

    Thank you for the suggestion!

    Hugs, Kathi
  • lisa42
    lisa42 Member Posts: 3,625 Member

    Although I really like the
    Although I really like the doctor's aggressiveness, it does seem a little over the top to request Pet scans every 6 weeks. I'm not sure what he is hoping to accomplish, unless surgery is his end game. Is surgery an option?

    scans every 6 weeks
    Hi,

    I just wanted to say that my oncologist ordered a scan every 6 weeks. I would get a CT scan one time, then a PET the next, which meant a CT every 12 weeks & a PET every 12 weeks, but he would always do both. The oncologist that I recently had a consultation/2nd opinion appt with said he normally scans every 3 months, not every 6 weeks, unless there is a reason to do it more often (which sometimes there can be).
    I kind of wish I could be getting MRI's instead due to frequent radiation of CT's and PET's.
    My surgeon told me a while back that an MRI provides the best picture of the liver, but CT is best for the lungs. Maybe a combo of both can sometimes be done? Not sure about that, but something to talk to the onc about.

    Take care everyone,
    Lisa
  • hopefulone
    hopefulone Member Posts: 1,043 Member
    Too often?
    Hi KATHI. Bob has frequent scans, generally 3 mos apart. He will have a scan this time though in 4 weeks from date of his rfa as a "baseline" . Every 6 weeks seems to be a lot to me. Is he planning to do this throughout the treatment or just at the beginning to see if it's showing signs of progression. Also, not sure what insurance she has, but they may not approve so often. Hope you had a nice holiday. God Bless
    Diane
  • KathiM
    KathiM Member Posts: 8,028 Member

    Too often?
    Hi KATHI. Bob has frequent scans, generally 3 mos apart. He will have a scan this time though in 4 weeks from date of his rfa as a "baseline" . Every 6 weeks seems to be a lot to me. Is he planning to do this throughout the treatment or just at the beginning to see if it's showing signs of progression. Also, not sure what insurance she has, but they may not approve so often. Hope you had a nice holiday. God Bless
    Diane

    Good point!
    She is on Medicare...I don't know...that is an excellent point!

    We both think this is over the top...he said he does this routinely to monitor progress.

    Hummmmm....

    Thanks for the thought!

    Hugs, Kathi