The Colon Club

I would be concerned about taking this relaxed an approach. The standard in most practices is 90 days. Even so, some studies show that recurrences happen in 15%+ percent of cases. Approximately 85% of these are “salvageable,” but the earlier they are caught, the better—there is less risk of an unsalvageable recurrence and greater potential for less radical salvage surgeries. Both benefits may be lost with additional time between scans and flex sigs. I understand “scanxiety”—believe me—but frankly, In my opinion it’s a small price to pay. And the cancer doesn’t care if you’re nervous.

Even more concerning, from the signature there appears to have been metastatic disease in this case. If so, that would suggest a need for increased monitoring, not reduced monitoring. Finally, while it sounds nice, I would be wary of an oncologist who uses the word “cured” under these circumstances (if he/she did) and within a year of the last known existence of disease (if I’ve read the information correctly).

I’m not trying to be negative or discouraging, and I just did a flex sig complete with scanxiety, but a little toughness and resolve now may pay huge dividends down the road. It’s a couple days of worry every 90 days for a couple of years in return for optimal management of disease and possibly many years of life. Just my view, but I think the benefits of frequent, comprehensive monitoring far outweigh the challenge of nervousness over what a scan or exam may show. Good luck!

roadrunner wrote:I would be concerned about taking this relaxed an approach. The standard in most practices is 90 days. Even so, some studies show that recurrences happen in 15%+ percent of cases. Approximately 85% of these are “salvageable,” but the earlier they are caught, the better—there is less risk of an unsalvageable recurrence and greater potential for less radical salvage surgeries. Both benefits may be lost with additional time between scans and flex sigs. I understand “scanxiety”—believe me—but frankly, In my opinion it’s a small price to pay. And the cancer doesn’t care if you’re nervous.

Even more concerning, from the signature there appears to have been metastatic disease in this case. If so, that would suggest a need for increased monitoring, not reduced monitoring. Finally, while it sounds nice, I would be wary of an oncologist who uses the word “cured” under these circumstances (if he/she did) and within a year of the last known existence of disease (if I’ve read the information correctly).

I’m not trying to be negative or discouraging, and I just did a flex sig complete with scanxiety, but a little toughness and resolve now may pay huge dividends down the road. It’s a couple days of worry every 90 days for a couple of years in return for optimal management of disease and possibly many years of life. Just my view, but I think the benefits of frequent, comprehensive monitoring far outweigh the challenge of nervousness over what a scan or exam may show. Good luck!

+1
@jsbsf I was being too nice!

@PRS - Thank you for sharing with us your wonderful news ! Are you the first 5 years clear from CCR around here ???? If so, big congrats. You have given all of us on the procedure lots of great hope and not to mention great advice too!

I haven't been checking in as often these days as life caught up. In some ways, I guessed it's a good sign that the Big-C word is gradually taking a smaller and smaller role in my everyday life.

But wow.. checking back onto this forum has reminded me not to take the every day for granted once again.

Hi Jolene, thank you for the kind words!

This June was actually my sixth year since CCR. I skipped my five year anniversary check up last year because it would have meant a trip into Los Angeles. The city was knee deep in Covid at the time!

My Doctor still wants me to go in for annual check ups. I think this might be because they need as much long term data as possible to allow W&W to be officially approved as a treatment.

Glad to hear you are doing well. I too have pretty much stopped thinking about it. I am actually happy to keep going in for check ups. There is definitely a sense of well being when the result comes back good.

Yes, this board continues to confirm how lucky we are to be successful Watch and Waiters. I just hope it doesn't take too much longer before the treatment becomes available to all.

So happy for you.

hi prs and the rest of the gang.
Just stopping by to say hi, 5 years in the game and score is on the my side. Just had last MRI-negative, CT was negative while back in the summer, scope, all good basically. Symptoms from chemo and rad will be there to remind me.

My surgeon said this is last MRI, as 5 years is up since CCR (actually will be in february ), but he will continue with scope, his choice.
In my neck of the woods TNT post CCR is now offered as standard care .
As Galileo Galilei said “And yet it moves.”

I am glad that I found this tread , helped me so much in making decision.
Wish best of the luck to all !

Outstanding, so good to see w&w success stories. Thank you for sharing mozart13.

mozart13 wrote:hi prs and the rest of the gang.
Just stopping by to say hi, 5 years in the game and score is on the my side. Just had last MRI-negative, CT was negative while back in the summer, scope, all good basically. Symptoms from chemo and rad will be there to remind me.

My surgeon said this is last MRI, as 5 years is up since CCR (actually will be in february ), but he will continue with scope, his choice.
In my neck of the woods TNT post CCR is now offered as standard care .
As Galileo Galilei said “And yet it moves.”

I am glad that I found this tread , helped me so much in making decision.
Wish best of the luck to all !

Congratulations @mozart13!

Great news, at the five year mark the odds of a recurrence have moved overwhelmingly in your favor!

MadMed wrote:Outstanding, so good to see w&w success stories. Thank you for sharing mozart13.

@MadMed welcome to the thread. Have you seen any further reduction in the size of your tumor post radiation?

Funny you should ask, I’m about to head out to get an MRI done. Simgmoidoscopy and DRE plus MRI results Wednesday.
I’m feeling anxious, hoping for W&W but aware that it is unlikely. I will report back as I find out.

Thanks for reaching out.

Wow ! Looks like we have our very first 2 cases of 5 years mark of NED while on WW on this board - both @PRS and @mozart123 ? Is that correct ?

Congrats to both !!!

On a side note, I just got official clearance on my 3rd year of NED on WW which should also reduce the chances of recurrence statistically !! Looking forward to the 4th and the 5th!

MadMed wrote:Funny you should ask, I’m about to head out to get an MRI done. Simgmoidoscopy and DRE plus MRI results Wednesday.
I’m feeling anxious, hoping for W&W but aware that it is unlikely. I will report back as I find out.

Thanks for reaching out.

MadMed, you are at eight weeks from the end of radiation so the swelling in your rectum should be pretty much gone. That should allow your doctors to make a proper determination of a CCR. My colorectal surgeon, who was the W&W expert, said it was the color of the remaining scar tissue that was one of the most important factors. I think that info is all here in this thread somewhere.

I also remember that tumor shrinking could continue for up to twelve weeks after radiation, so waiting it out another month might be an option if you are almost there after eight weeks.

Best of luck this week!

Jolene wrote:Wow ! Looks like we have our very first 2 cases of 5 years mark of NED while on WW on this board - both @PRS and @mozart123 ? Is that correct ?

Congrats to both !!!

On a side note, I just got official clearance on my 3rd year of NED on WW which should also reduce the chances of recurrence statistically !! Looking forward to the 4th and the 5th!

Congrats on three years Jolene!!!

Yeah, Group Hug!!!

prs wrote:

MadMed wrote:Funny you should ask, I’m about to head out to get an MRI done. Simgmoidoscopy and DRE plus MRI results Wednesday.
I’m feeling anxious, hoping for W&W but aware that it is unlikely. I will report back as I find out.

Thanks for reaching out.

MadMed, you are at eight weeks from the end of radiation so the swelling in your rectum should be pretty much gone. That should allow your doctors to make a proper determination of a CCR. My colorectal surgeon, who was the W&W expert, said it was the color of the remaining scar tissue that was one of the most important factors. I think that info is all here in this thread somewhere.

I also remember that tumor shrinking could continue for up to twelve weeks after radiation, so waiting it out another month might be an option if you are almost there after eight weeks.

Best of luck this week!

My doc may be pushing it but he mentioned that there are published papers going up to as high as 16 weeks. Just FYI. Mine was only CCR at week 12, had he followed the original week 8 I would have already gone under the knife. Counting my blessings everyday !

prs wrote:MadMed, you are at eight weeks from the end of radiation so the swelling in your rectum should be pretty much gone. That should allow your doctors to make a proper determination of a CCR. My colorectal surgeon, who was the W&W expert, said it was the color of the remaining scar tissue that was one of the most important factors. I think that info is all here in this thread somewhere.

I also remember that tumor shrinking could continue for up to twelve weeks after radiation, so waiting it out another month might be an option if you are almost there after eight weeks.

Best of luck this week!

Thanks Peter, yes this Wednesday is pre-op meeting with a planned sigmoidoscopy and review of the MRI. I don't have the MRI results yet. I am prepared for all eventualities except for spread.
W&W comes with it's own set of issues, right. Ongoing anxiety etc.. Have you had to deal with that much ?

@Jolene, may you be the next 5 year W&W success story. We need that good news