When does one no longer need scans?

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Chloe
Posts: 4
Joined: Thu May 25, 2023 11:31 am

When does one no longer need scans?

Postby Chloe » Thu May 25, 2023 12:17 pm

Hello!

I had a malicious colorectal tumor removed 7 years ago and have been cancer-free since then. The oncologist thinks that I no longer need to do periodic CT scans. I wonder if anybody knows cases when people with colon or rectal cancer had cancer return after more than 7 years (not necessarily the same type of cancer)?

I'd also like to know if there are blood tests one can do to check for cancer besides CEA?

Finally, I was also diagnosed with FAP. I had a complete colectomy, so I can't get colon or rectal cancer again, but aren't there other types of cancer I may be more susceptible to than people without this genetic mutation? I remember seeing an FAP discussion forum several years ago, but can't find it now.

Thank you very much for your help!

deha50
Posts: 31
Joined: Fri Nov 20, 2020 8:24 pm

Re: When does one no longer need scans?

Postby deha50 » Mon May 29, 2023 4:23 pm

Hi,
I am not trying to care you. I was diagnosed with stage 3b colon cancer in 2013 and then it metastasized in 2015. I had been totally cancer free until November of this past year, 2022. I was given the choice to stop scans 2 years ago. I decided to continue for ten years. I am glad I did. I think it depends on what stage you are and if your CEA marker is a good indicator of "trouble" for you. Hope you get better answers from a variety of people! Good luck.
Denise

Chloe
Posts: 4
Joined: Thu May 25, 2023 11:31 am

Re: When does one no longer need scans?

Postby Chloe » Tue May 30, 2023 9:50 am

Hello!

Thank you so much for responding!

deha50 wrote:I had been totally cancer free until November of this past year, 2022. I was given the choice to stop scans 2 years ago. I decided to continue for ten years. I am glad I did.


Do you mean to say that your cancer returned again in November of 2022?

And how can I know if CEA is a good indicator of "trouble" for me or not?

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: When does one no longer need scans?

Postby weisssoccermom » Tue May 30, 2023 10:11 am

I can only give you my experience with CEA. When I was dxd in 2006, I had a big rectal tumor but my CEA was only 0.5....normal limits with the test at that time were 0-3. So, if someone were to have relied solely on my CEA levels, they would have said I was perfectly normal. It's common for your CEA to go up slightly during treatment and, if I remember correctly. Mine never got above 1.7. About half the people diagnosed with CRC have perfectly normal CEA levels so for us, it's just not a good indicator. What was you CEA before you started treatment?

As for scans, your insurance company may stop covering them at a set time. After 5 years, mine stopped covering them. I've been cancer free since 2007 when I had my last treatment. I stopped seeing my once right around that time simply be ause I wanted to reclaim my life. I did, however, continue to see my GP regularly for blood work and she still ran CEA tests for another year or so until we both decided it just wasn't worth it. As I said earlier, CEA wasn't a good indicator for me and the anxiety the test caused just wasn't worth it.

I still do continue with my colorectal surgeon who performs my scopes and I am now on the 5 year plan unless I notice something or if so.ething just doesn't feel right.

Each person will have his/her own comfort zone with respect to when to stop the scans and bloodwork.
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deha50
Posts: 31
Joined: Fri Nov 20, 2020 8:24 pm

Re: When does one no longer need scans?

Postby deha50 » Tue May 30, 2023 2:30 pm

Yes, I meant that my metastatic cancer returned after 7 years of inactivity in November 2022. My CEA marker was never an indicator for me until November. Mine was always 1.4 or lower, even in my 2 previous diagnoses. In November, my CEA was at 5, which is high for me. It is now back to 1.8. CEA markers are not the only diagnostic markers, but they show trends and can be helpful, but I do not think many doctors rely solely on it.

Chloe wrote:Hello!

Thank you so much for responding!

deha50 wrote:I had been totally cancer free until November of this past year, 2022. I was given the choice to stop scans 2 years ago. I decided to continue for ten years. I am glad I did.


Do you mean to say that your cancer returned again in November of 2022?

And how can I know if CEA is a good indicator of "trouble" for me or not?

Chloe
Posts: 4
Joined: Thu May 25, 2023 11:31 am

Re: When does one no longer need scans?

Postby Chloe » Wed May 31, 2023 5:14 pm

Thank you so much for your messages!

weisssoccermom wrote:About half the people diagnosed with CRC have perfectly normal CEA levels so for us, it's just not a good indicator. What was you CEA before you started treatment?


I don't really know because I was diagnosed with CRC after a colonoscopy (I felt an obstruction), and so I first learned about CEA when a couple of years into surveillance the oncologist began spacing out CT Scans and ordering CEA at alternative appointments when I wasn't doing scans. But it probably doesn't matter, since, as Deha50's example shows, the same person may have elevated CEA with one instance of cancer and normal CEA with another.

It's interesting that CEA is only 50% effective at catching CRC! I wonder if it's better at detecting other types of cancer? Because I had a complete colectomy and no longer have either colon or rectum, CRC is the one kind of cancer I can't get again, but I know from my family history that it can come back as another type of cancer, and that's what I'm concerned about.

weisssoccermom wrote:I still do continue with my colorectal surgeon who performs my scopes and I am now on the 5 year plan unless I notice something or if something just doesn't feel right.


With me it's the gastroenterologist who does upper endoscopy and ileoscopy for me, and I'll continue doing it periodically, but it's the other cancers I worry about.

weisssoccermom wrote:As for scans, your insurance company may stop covering them at a set time. After 5 years, mine stopped covering them.... Each person will have his/her own comfort zone with respect to when to stop the scans and bloodwork.


I might wish to have one last scan at a ten-years marker, even if I have to pay for it myself, despite the high cost, if the oncologist agrees to order it for me and to let me see him once a year for a general examination, which I'll definitely wish to do.

deha50 wrote:Yes, I meant that my metastatic cancer returned after 7 years of inactivity in November 2022.


I'm very sorry to hear it. I wish you the very best of luck!

deha50 wrote:My CEA marker was never an indicator for me until November... CEA markers are not the only diagnostic markers, but they show trends and can be helpful, but I do not think many doctors rely solely on it.


I wonder what other diagnostic markers are there?

Thank you very much again for sharing information with me! It's very kind of you and is greatly appreciated!


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