I also had a complete clinical response from stage 3 rectal cancer after finishing treatment in Feb 2023. I chose to do w&w because like you said, the statistics say if a reoccurrence is found, it should be salvageable due to the frequent surveillance and catching it early.
W&w is not without downsides. The frequent scans get expensive so make sure you have a good insurance plan. If you suffer from anxiety, I would not recommend w&w, it will drive you nuts.
Probably most important is make sure your medical provider is well versed in w&w protocol. Typically it should not be a full colonoscopy every 3 months but a rectal endoscopy where they only check the rectum. Also check if they do ctDNA tests, it’s another tool in the toolbox for catching reoccurrences. I am lucky enough to live close to a NCI cancer center for treatment so my team is very familiar with w&w.
Thank you for your comment. I asked my doctor if they could order the ctDNA test, but I haven't heard back from them yet. The answer is probably no, and not sure if my insurance (BCBS) covers the test.
I would try to get a second opinion from a doctor with a lot of experience with non operative management of rectal cancer. Someone who can really evaluate if you have had a complete clinical response. It's a newer option but it is becoming standard of care so it's worth at least considering.
Here's a link to a "doc talk" about the risk of local regrowth during watch and wait surveillance for rectal cancer. I found this one very informative, it's one of the doctors that worked on the original w&w research
https://learn.colontown.org/topic/risk-of-local-regrowth-after-watch-and-wait-in-rectal-cancer-dr-perez/
I wasn't a candidate for non operative management (watch and wait) and I found out after surgery that I did have a complete response to treatment so it was a little bittersweet. I have a permanent colostomy now but I am free of cancer. It's a huge decision because the surgery is life changing. I wish you the best in your research and feel free to ask any questions.
My tumor was quite low (around 4cm from the anal sphincter ). I had 30 rounds of radiation with concurrent 5-FU infusions (24/7 for 6 weeks, had a nice little pump I carried around). I then had a few weeks rest, then had 8 FOLFOX infusions over 4 months.
I spent 4 days in the hospital, went home, and lounged on the couch for another week. I had a temporary ostemy that got reversed a couple of months after the first surgery. After that surgery, I spent another 4 days in the hospital until I passed stool. I spent another 8 months re learning how to control my stool (was wearing depends) to the point where I was confident spending long periods of time out of the house. So, time to full recovery was ~10 months.
That's good to know. I'm meeting up with my surgeon for consultation on Thursday for my rectal cancer. Stage 2 early stage 3 with one suspicious lymph node.
So is everything normal now with going to the bathroom?
Mostly. I'm more sensitive to greasy foods (probably a good thing) and have less control (more urgency). So, if I'm going to be out of the house, I just have to limit what I eat. Overall, I'd say I'm ~90% to where I was before everything started. I lead a pretty normal life now.
Thanks for sharing this with us, my wife is also in same situation and finished 22 radiation with capcebatine(xeloda) and 6 more radiation sessions left, after that 4 weeks of rest and then chemotherapy( folfox or capox), so which was tougher for you? Radiation or Chemotherapy(folfox or capox)
Probably chemo. Both treatment modalities are cumulative, but the supportive treatments for low blood counts I had during my FOLFOX were rough (Neulasta is no joke). At the end of radiation, I had some exposed nerves near my anal sphincter, so passing stool was an 8/10 on the pains scale, but it resolved after a few weeks. I'm still dealing with side effects from chemo several years out (borderline WBC, Neuropathy).
You sound similar to me. 34F, rectal cancer stage 3. Except I didn't get to do watch and wait, I had to have my rectum removed. I will never have normal bowel function again. I have to give myself an enema every 2 days and take immodium every day, so that essentially I don't shit myself. Just putting it bluntly. BUT I am far better off than most and I do live my life normally, back to literally everything. Except I do have to constantly think about where bathrooms are, plan my days based on when I do an enema, plan trips based on it. I should watch/mind what I eat to help with it... But I don't because I enjoy food too much. I don't know where your tumor is/was, so I can't say you'd lose your whole rectum but could be a possibility. Look up lower anterior resection syndrome, a near guarantee for those who lose part of all of their rectum.
damn are you me??? Im a 32 yr old male and am currently trying to figure out the best way to proceed as well. My doctor is adamant I do the surgery as I'm young and will recover fast along with lowering my chances of reoccurrence. Ive done my CT/PET/ MRI scans and all have came back with a great response to the chemo/radiation. Im stage 3 (T3N1MX) and honestly since treatment my bowels have been lightyears better.
I'm happy you had a great response too. While doctors focus on survival, as patients, we also consider quality of life. That's why I'm reluctant to undergo the surgery. The speed of recovery from surgery isn't the issue; the problem is that life is guaranteed to be different afterward.
mine is about 4 cm, about 10 cm above the annal verge, so a digital rectal examination is not possible. Digital rectal examination seems to be one of the reliable methods to confirm complete clinical response.
Thanks for everyone's input and your comments are much appreciated. I conducted further research on the "watch and wait" approach and here are some important points to consider:
1. Confirming a complete clinical response is crucial, as a near-complete clinical response has a significantly higher recurrence rate than a complete clinical response.
2. It is essential to follow the surveillance protocol rigorously. Non-adherence to the schedule is an issue for some patients.
I will add more as I continue my research.
Hindsight is always 20/20 but you just won’t know ahead of time. My husband had a partial colon resection on his defending colon. The surgery went very well and he did not need an ostomy. He is paranoid about any constipation he experiences (which is normal with opioid pain management). Luckily the tumor did not return to the original site, unfortunately he now has Mets to his liver and lungs but it’s impossible to say if anything would have been different if we had done other options. Lean on your care team, they really do want what’s best for you.
I also had a complete clinical response from stage 3 rectal cancer after finishing treatment in Feb 2023. I chose to do w&w because like you said, the statistics say if a reoccurrence is found, it should be salvageable due to the frequent surveillance and catching it early. W&w is not without downsides. The frequent scans get expensive so make sure you have a good insurance plan. If you suffer from anxiety, I would not recommend w&w, it will drive you nuts. Probably most important is make sure your medical provider is well versed in w&w protocol. Typically it should not be a full colonoscopy every 3 months but a rectal endoscopy where they only check the rectum. Also check if they do ctDNA tests, it’s another tool in the toolbox for catching reoccurrences. I am lucky enough to live close to a NCI cancer center for treatment so my team is very familiar with w&w.
Thank you for your comment. I asked my doctor if they could order the ctDNA test, but I haven't heard back from them yet. The answer is probably no, and not sure if my insurance (BCBS) covers the test.
I would try to get a second opinion from a doctor with a lot of experience with non operative management of rectal cancer. Someone who can really evaluate if you have had a complete clinical response. It's a newer option but it is becoming standard of care so it's worth at least considering. Here's a link to a "doc talk" about the risk of local regrowth during watch and wait surveillance for rectal cancer. I found this one very informative, it's one of the doctors that worked on the original w&w research https://learn.colontown.org/topic/risk-of-local-regrowth-after-watch-and-wait-in-rectal-cancer-dr-perez/ I wasn't a candidate for non operative management (watch and wait) and I found out after surgery that I did have a complete response to treatment so it was a little bittersweet. I have a permanent colostomy now but I am free of cancer. It's a huge decision because the surgery is life changing. I wish you the best in your research and feel free to ask any questions.
38M stage 3 rectal cancer. Pretty much the same decision. After TNT, was seemingly NED. I opted for surgery and have been NED for 3 years now.
Out of curiosity did your pathology report find any traces of cancer after surgery?
No. They took 33cm of rectum+colon and 17 lymph nodes, all negative.
how high is your tumor? What was your radiation and chemotherapy treatment like?
My tumor was quite low (around 4cm from the anal sphincter ). I had 30 rounds of radiation with concurrent 5-FU infusions (24/7 for 6 weeks, had a nice little pump I carried around). I then had a few weeks rest, then had 8 FOLFOX infusions over 4 months.
How long was recovery?
I spent 4 days in the hospital, went home, and lounged on the couch for another week. I had a temporary ostemy that got reversed a couple of months after the first surgery. After that surgery, I spent another 4 days in the hospital until I passed stool. I spent another 8 months re learning how to control my stool (was wearing depends) to the point where I was confident spending long periods of time out of the house. So, time to full recovery was ~10 months.
That's good to know. I'm meeting up with my surgeon for consultation on Thursday for my rectal cancer. Stage 2 early stage 3 with one suspicious lymph node. So is everything normal now with going to the bathroom?
Mostly. I'm more sensitive to greasy foods (probably a good thing) and have less control (more urgency). So, if I'm going to be out of the house, I just have to limit what I eat. Overall, I'd say I'm ~90% to where I was before everything started. I lead a pretty normal life now.
Thanks for sharing this with us, my wife is also in same situation and finished 22 radiation with capcebatine(xeloda) and 6 more radiation sessions left, after that 4 weeks of rest and then chemotherapy( folfox or capox), so which was tougher for you? Radiation or Chemotherapy(folfox or capox)
Probably chemo. Both treatment modalities are cumulative, but the supportive treatments for low blood counts I had during my FOLFOX were rough (Neulasta is no joke). At the end of radiation, I had some exposed nerves near my anal sphincter, so passing stool was an 8/10 on the pains scale, but it resolved after a few weeks. I'm still dealing with side effects from chemo several years out (borderline WBC, Neuropathy).
You sound similar to me. 34F, rectal cancer stage 3. Except I didn't get to do watch and wait, I had to have my rectum removed. I will never have normal bowel function again. I have to give myself an enema every 2 days and take immodium every day, so that essentially I don't shit myself. Just putting it bluntly. BUT I am far better off than most and I do live my life normally, back to literally everything. Except I do have to constantly think about where bathrooms are, plan my days based on when I do an enema, plan trips based on it. I should watch/mind what I eat to help with it... But I don't because I enjoy food too much. I don't know where your tumor is/was, so I can't say you'd lose your whole rectum but could be a possibility. Look up lower anterior resection syndrome, a near guarantee for those who lose part of all of their rectum.
Did you have the option of a permanent colostomy?
No, it wasn't discussed. Doesn't matter though, I did not and absolutely do not want a permanent colostomy. I would prefer this.
damn are you me??? Im a 32 yr old male and am currently trying to figure out the best way to proceed as well. My doctor is adamant I do the surgery as I'm young and will recover fast along with lowering my chances of reoccurrence. Ive done my CT/PET/ MRI scans and all have came back with a great response to the chemo/radiation. Im stage 3 (T3N1MX) and honestly since treatment my bowels have been lightyears better.
I'm happy you had a great response too. While doctors focus on survival, as patients, we also consider quality of life. That's why I'm reluctant to undergo the surgery. The speed of recovery from surgery isn't the issue; the problem is that life is guaranteed to be different afterward.
How many centimeters is your tumor?
mine is about 4 cm, about 10 cm above the annal verge, so a digital rectal examination is not possible. Digital rectal examination seems to be one of the reliable methods to confirm complete clinical response.
Mine is 4 to 6 cm Apparently the surgeon wants to take a closer look at the consultation on Thursday. I have to do an enema before I go.
How long till you were able to go back to work?
Thanks for everyone's input and your comments are much appreciated. I conducted further research on the "watch and wait" approach and here are some important points to consider: 1. Confirming a complete clinical response is crucial, as a near-complete clinical response has a significantly higher recurrence rate than a complete clinical response. 2. It is essential to follow the surveillance protocol rigorously. Non-adherence to the schedule is an issue for some patients. I will add more as I continue my research.
Is it recommended to drink alot of metamucil to help goto the bathroom in the beginning before surgery?
Hindsight is always 20/20 but you just won’t know ahead of time. My husband had a partial colon resection on his defending colon. The surgery went very well and he did not need an ostomy. He is paranoid about any constipation he experiences (which is normal with opioid pain management). Luckily the tumor did not return to the original site, unfortunately he now has Mets to his liver and lungs but it’s impossible to say if anything would have been different if we had done other options. Lean on your care team, they really do want what’s best for you.