CT frequencies?

[salysue]

My husband has been having CT scans every 6 months since his treatments ended. Now that it has been over two years since diagnosis, the doctors (surgeon, oncologist and radiation onc) are now recommending yearly CT scans as long as his CEA is stable. I suffer from scanxiety when he has them every six months, and now I am concerned because of the yearly recommendation. I guess I have begun to think of the CTs as a security blanket. Your thoughts?

[weisssoccermom]

I know exactly what you mean. I've gone from every 6 months to once a year as well. Initially it's a little scarey - ok let's be honest - it's a LOT of scariness - but there will come a point when you have to have faith and confidence in your doctors that they think things are doing well and stretching out the treatments is a very viable option.

It may very well be that this is the best thing in the world for your husband - the sense that he can let go a little bit. DOesn't necessarily make it any easier on you but for me, just stretching out the visits was really helpful. It's not as though your husband is going only once a year from now on - it's just that the scans are being stretched out. Sooner or later it had to happen and if all the doctors are comfortable with that recommendation, you have to trust in their judgement. He's still going to have onc appointments and the doctors will be watching his blood work, etc. very carefully - so try to relax a little bit and enjoy this new follow up schedule.

Jaynee

[livingbyfaith]

I would be more oncerned about frequent ct scans and the radiation which can be cancer causing in itself.

[CRguy]

I would be more oncerned about frequent ct scans and the radiation which can be cancer causing in itself.

This is a huge concern for me also, only not as concerning as missing an early, treatable lesion because you failed to look for it !

I adjusted my follow up schedules to get a CT every spring, and Xrays and Ultrasound every fall, with blood tests and physical exams every three months. Reduces the radiation BUT still keeps up the surveillance. Worked for me so far.

Yes, chemo and radiation may be their own risks for future mutagenesis. My take on this is "If I don't deal with THIS tumor NOW...I may not be here to worry about future cancer risks ??? "

YMMV.

Cheers
CRguy

[BrownBagger]

I'm with the "less is probably better" crowd. Having received probably more than my share of radiation in rad therapy, I'm a little reticent about getting any more than necessary. I do what the doctors recommend, but I wouldn't mourn a reduced schedule.

I guess CT frequency varies depending on your dx. In my case, I'm scheduled to get one a year for the next two years and then, if nothing pops up, my doctor says I can opt out of the "program." And that's what I intend to do.

[SkiFletch]

It definitely does depend a bunch on the original DX. I wish me and my fellow Stage IV peeps could back off a little, but we don't have the luxury. Oh well, beam me up Scotty

[tytiff]

My husband, who is Stage IV, has a PET/CT scan every eight weeks and as such we live our lives in 8 week segments. I understand your scanxiety. However, if he has progressed to once a year scans, I would really try to take that as a positive thing. I also understand that is easier said than done. But as many people have said on this board, God is in control of our lives and you just have to try to "Let Go, Let God" be your guide. Put it in his hands and give it peace. Also, I'm sure if your husband has any symptoms or problems, they would be willing to move the scan up to check it out. Good luck.

[BrownBagger]

I'm optimistic that techniques will continue to be developed that will help make CT, PET and other types of radiation-exposing tests less prevalent. While not a surefire indicator, the CEA test comes to mind. Yesterday during a follow up visit to my oncologist, I mentioned that my maternal grandmother died of CRC in 1949 (at age 49) after it metastizied to her brain. I said I'm concerned about that. He said a brain CT is not recommended under the circumstances. Instead, he said, "Call me if you start to get headaches, especially if they persist." I thought that was good, practical advice. I realize that there are usually not symptoms associated with liver and lung mets, (hence the scans), but we seem to be headed in the right direction.

[Terry]

I can imagine that would be scarey. I've never gotten to the point of every two year scans but I do hope to and I'm sure I will be nervous then also. I think once you get your first two year scan and it's clean you'll become more comfortable with it. How often will they do his CEA? I was on every six month scans after I was diagnosed with stage II and the first three came back clean, it was my CEA rising that told me something wasn't right and so I had my next CEA two months early. So maybe you could change your security blanket to the CEA test if his shows changes with the cancer.

If you are a believer in our Lord, put it in his hands.
Terry

[pearlgirl]

The problem arises when CEA is not a good indicator of cancer activity. B's oncologist told him at his last visit that after the next CT, it ill be up to B whether he wants to go to once a year. That' scary to me, because it's essentially going a full year without any testing, when he's already had one recurrence. His CEA has never risen, so his blood tests mean very little, apart from monitoring anemia, etc.

[Staci's team]

This is a particularly timely subject for me and Staci now, as she's in the middle of her two-day post-infusion hookup for cycle #6. She'll be done after 8, and at yesterday's pre-infusion meeting the onc said that going forward, she'll be scheduled for a CT once a year, but that's a conversation he wanted to have when he sees her prior to infusion #8.

He's said before that CEA doesn't appear to be a particularly good indicator for her, so I can't help but think that a once-a-year CT isn't good enough. He's been right on the money so far, though, and we trust him implicitly....but since it was her mom there instead of me, and because he said we'd talk about it more at a future visit, they didn't push the frequency issue. Like CRGuy said, I'm more worried about "missing an early, treatable lesion because you failed to look for it!"

Oh well, I'll ask when we see him again and will try my best to find research-based followup recommendations.


Chris