Hello,
I am a new member, but have been a regular visitor (lurker) to ColonClub for the last 15 months. The collective courage, compassion, knowledge, and wisdom of this community is inspiring, and has helped me beyond words. It is time to pay it forward.
My wife was diagnosed with Stage II Rectal cancer almost 15 months ago; our journey so far is summarized in the signature. We have been very fortunate, in so many ways. We are a 90-minute drive from a major NCI Cancer Center for treatment, and we have had exceptional and attentive care. She was offered, and was able to tolerate, total neoadjuvant (TNT) treatment without significant complication, without interruption, and with only minor dosing adjustments. She was a “good responder” and the result was complete clinical response, after completion of chemo and CRT, which has allowed her to potentially avoid surgery. This had been our hope from the beginning, and was discussed openly with our team prior to treatment commencing. The official treatment plan was, of course, always to proceed with surgery following CRT. However, given the excellent response to treatment and cCR, the team supported her decision, and agreed to proceed with non-operative management (NOM). We know she is not their only RC patient currently in NOM, but there are very few.
Her treatment was complete mid-July 2018, and we are 6+ months into active surveillance. It seems, because W&W is not a standard of care, there are no uniform guidelines/parameters for what the active surveillance should be. In our specific case, it has evolved to:
• Every 3 mos for 2 years: DRE, flexible proctoscopy, MRI of pelvis and CEA
• Every 6 mos for 2 years: CT of chest & abdomen
• After two years, the 3-month monitoring is extended to every 6 months for the next 3 years. Unsure if CT interval will be extended from every 6 mos to 12 mos.
• A colonoscopy was done (instead of Flex sig) 11/18. It was clear, so the next one will be in 3 years, and at 3 year intervals thereafter.
We are very interested in your experience with the “watch” portion, and what active surveillance programs others are following, and any other information or insight others may have. I will also add, I am happy to try to answer any questions about any aspect our journey so far. Thank you.