Anyone avoid surgery after radiation and chemotherapy?

stage3rectalcancer · January 2023

Hi,

I have stage 3 rectal cancer. Has anyone gone through chemoradiation and chemotherapy and decided not to go through surgery? Seems like the recommendation is to go through surgery even if it appears the cancer is completely gone. Curious about anyone who chose not to have surgery-how they made that decision and how it worked out for them. Thank you!

SnapDragon2 · January 2023

There is the watch and wait approach.

Have you and your team discussed it?

stage3rectalcancer · January 2023

https://csn.cancer.org/discussion/comment/1702761#Comment_1702761

I tried, but they seem more familiar and comfortable with recommending surgery regardless of whether there is evidence of cancer after chemo/radiation. I have 3 more weeks of chemo/radiation and then 4 months of chemotherapy so I don't know how well I will do with chemo and radiation alone. But I was surprised by the implication that I should get surgery regardless of my response to the chemo/radiation.

My husband helped me find a review article today (from the Winship Cancer Institute of Emory) of several studies that looked at the watch and wait approach v. surgery and it does give me the impression that depending on how well I respond to treatment, watch and wait could be a reasonable choice. Site won't let me post the link but it is called Nonsurgical Management of Rectal Cancer and was published in JCO Oncology Practice.

SnapDragon2 · January 2023

2nd and 3rd consults with surgeons (preferrably board certifed in crc) and oncologists specializing in crc might be a good idea now. Not at same hospital or oncology center.

stage3rectalcancer · January 2023

https://csn.cancer.org/discussion/comment/1702769#Comment_1702769

I think you're right.

agekrelve · January 2023

I decided not to have surgery and I'm currently enrolled in the watch and wait protocol. I originally was diagnosed with stage 3 rectal cancer (T1/T2) and 1 lymph node was borderline suspect. I initially did 4 months of Folfox then after a 3 week break I had 28 days of pelvic radiation with taking Xeloda orally on days of radiation. My decision was based on biologically how my cancer responded to chemotherapy initially (80% reduction) and then after Chemoradiation achieving a clinical complete response. This means DRE clean, visually looking by Flex Sig. no cancer present, Bioposy of scar tissue is benign, and MRI and CT detected no cancer. Everyone's situation is unique, but that is what I based my decision on. If your tumor is relatively small T1/T2 depth and has very few lymph nodes (1-3) impacted that also respond to Chemotherapy and Chemoradiation by going back to normal shape and size and you eventually achieve a clinical complete response I would consider watch and wait. Also, the salvage surgery is highly successful when you are under a rigorous protocol for monitoring any reoccurrence. I simply thought if I have a clinical complete response and do surgery to later find out I achieved a pathological complete response (looking at tissue after surgery) then I would be stuck with the post morbidities of surgery for the rest of my life and why did I do that. So if you achieve a clinical complete response you have options and that is where I was at and prayed for. To each his/her own as there is always risk and nothing is every 100% or 0%. Also, I have ready that distant metastasis is the same percentage with or without surgery and the theory is cancer cells break away from the tumor early on before treatment or surgery so there is that too. Surgery doesn't cure that. The likelihood of local or local regional reoccurrence is higher though for watch and wait than for surgery by TME for example. Surgery has been the gold standard for a long time, but there is a trend with more and more people given the right results and data going watch and wait. However, there is still a lot to learn and limitations exist with our detection of cancer. Good luck and we will be praying for you.

chrissy62 · January 2023

Hi I was debating on not having surgery but I’m glad I did now. I had stage3 B rectal cancer, the plan was chemo folfox, radiation and then surgery. The chemo and radiation did it’s job but the surgeon saw a tiny bit left. I decided to have the surgery. I had an ileostomy bag for 6 weeks and just got a reversal on 12/13. The rectal cancer is gone and now I will be going for CT scans and MRI every 6 months. I’m happy I had surgery

Bobs54 · January 2023

I was dx stage 3 (4nodes involved) rectal cancer and I am part of a phase 2 clinical trial for TNT. I did 4 rounds of Folfox, the one week of IMRT radiation in combination with 5-FU in a pump that I wore the entire 5 days, then 4 more rounds of Folfox. I got a CCR and joined the watch and wait protocol and I am a year and 5 month out and all scans are clear. I get either MRI/CT or a flex sig every 3 months until the 2 year mark.. then every 6 months after that. I am SO HAPPY that I chose this trial as my initial treatment! The radiation process I had is still experimental but is an ultra-targeted and high intensity IMRT. As I only had to do it for a week, I had no burns, andI largely avoided many radiation complications that could have manifested from a month-long standard course. The BEST outcome of my treatment was avoiding low rectal surgery.. which has a high rate of complications. My team of doctors were all delighted to advise me that I got a CCR and could join the watch and wait list. I am very, very happy I have avoided surgery and all that comes with it. So far, I good.

stage3rectalcancer · January 2023

https://csn.cancer.org/discussion/comment/1702833#Comment_1702833

Thank you so much

JohnBravo · February 2023

I was stage II almost III, I pushed for treatment first because the tumor was very low and I would likely ended up with a permanent bag. TNT gives you the possibility of avoiding surgery and not ending up with a permanent colostomy. But it’s not the standard of care. I’m glad I did because now the cancer is visibly gone. I will be doing watch and wait, provided nothing unexpected happens. I will be doing signatera genetic testing to make sure there is no sign of it in my blood . If it come back negative I’ll officially be in remission.

stage3rectalcancer · February 2023

https://csn.cancer.org/discussion/comment/1703669#Comment_1703669

Thank you. I'm in danger of a permanent bag. I finished chemoradiation and I'm about to start chemotherapy. Response so far is strong. Hoping I will have the option to wait and watch too. I'll have to ask about signatera testing. They've just done CEA testing to monitor progress.

JohnBravo · February 2023

There are videos on YouTube explaining it.

Bobs54 · February 2023

https://csn.cancer.org/discussion/comment/1703669#Comment_1703669

I second this… TNT is not the standard of care at this time but I’m hoping the success of trials like the one I am in will hopefully make this approach the new “gold” standard. From all I have learned so far, only 8-15% of patients who complete TNT get a CCR which is what qualifies you to do watch and wait. It doesn’t sound like much, but it is still A LOT of people who are spared the consequences of low rectal surgery and afforded a better quality of life. Being able to identify these patients prior to surgical intervention is an amazing step forward. The other benefit of course, is that the treatment phase is complete up front, PRIOR to surgery for those who will still need surgery. This means not having to endure chemo while wearing a bag (whether permanent or temporary) and also tumor shrinkage enabling the least invasive surgery possible. My late ex-husband presented with stage 4 inoperable low rectal cancer and endured round after round of chemo with a permanent bag and it was a STRUGGLE… so being able to spare even a few patients that is phenomenal progress in my book.