“Near” Complete Clinical Response and what to do next

[PatMc4]

Hi, all! The first thing I need to do is thank all of the people who post here because this forum has been immensely helpful in my journey so far.

The short story is that I am approaching the 1 year anniversary of my rectal cancer diagnosis. As I have read on other posts, getting the medical team and treatment plan in place was not a quick process. About 6 weeks after diagnosis, I started chemo, then had XRT. About 6 weeks after finishing XRT, I went to a new surgeon who is head of the colorectal surgery department and a professor at the medical school.

Since then I have had an MRI, which indicated that they “suspected” some cancer might remain. I have had 2 flex sigs (the most recent today) and there are still some “bumps” near where the tumor was. There are no signs they are growing and my CEA is stable @ 1.2. My surgeon seems to be leaning toward a resection, although Watch & Wait is still an option. I decided to go another 3 months, have another MRI in February, along with another flex sig.

I think the fact that I am feeling so well (blood counts improving are probably the cause) may have led to taking the ostrich approach to having to face the real possibility of surgery. I know I am incredibly lucky that my treatment didn’t take more of a toll on me and I had a super support group of family and friends. I’m just a little bummed that I didn’t exactly get the results I was hoping for.

Any words of wisdom or thoughts, either about treatment or mindset? Thanks!

[Rock_Robster]

Hi, my story is very similar (except I was stage IV at diagnosis). I had a ‘complete metabolic response’ to chemoradiation (ie no cancer on PET), but after an MRI and flex sig my surgeon also suspected some cells remained. He mentioned W&W but really didn’t give me the choice. I had the surgery, and afterward tumour pathology was indeed positive (though negative margins, thankfully!), and 1 out of 26 nodes was also positive. So no regrets whatsoever from me. I have an ileostomy now (which is fine), and will go for reversal in Jan likely.

All I’d say is that W&W is not 100% reliable even in a confirmed complete pathological response, so for me in a ‘near complete response’ I wouldn’t consider it (and nor would my surgeon). However everyone is different, and having a ULAR isn’t nothing, so of course the call remains with you and your medical team.

Best of luck!
Rob

[hawkowl]

I would definitely want definitive answers. Can they rebiopsy one of the bumps? I opted against watch and wait even though I had a complete clinical response (and it turns out a complete path one also). Permanent colostomy and no regrets. I would much rather ovrrtreat than under treat

[Rock_Robster]

I would definitely want definitive answers. Can they rebiopsy one of the bumps? I opted against watch and wait even though I had a complete clinical response (and it turns out a complete path one also). Permanent colostomy and no regrets. I would much rather ovrrtreat than under treat

I tend to agree; I think there is a strong argument to try W&W for a cCR given that even in the case of a local recurrence the resection rate is still, I believe, >90%; and median overall survival doesn’t seem to differ vs up-front surgery. However I think the big question here is “is this really a complete clinical response?”. I wonder if there may be other helpful data points - for example a ctDNA test (in addition to rebiopsy as you suggest hawkowl).

The other consideration may be - how large would the surgery be if it went ahead? ULAR or APR? Open or lapro? Sphincter-sparing? Ostomy? Temporary or permanent? This might potentially help tip the risk/benefit scales one way or another.

[PatMc4]

Thank you both for your thoughts. After a little time to roll this around in my head, I tend to think that a suggestion that there may be cancer remaining is reason to have the resection. I did ask about a biopsy and was told they don’t usually do them since they would be testing such a small amount of tissue, but it could be done for my peace of mind. During my first visit with the surgeon, he said surgery would be robotic because I wouldn’t want his big hands in me. He has said there would be a temp ileostomy. Now I just need to make sure my head stays in “I got this” mode.

[susie0915]

I went through 5 weeks of chemo/radiation. After finishing my surgeon did a sigmoidoscopy and said all that was left was scar tissue. I had a pet scan that showed no evidence of disease. I was never offered watch and wait, but my surgeon said I may not need chemo after depending on pathology. When the pathology report came after my resection, margins were clear, but there was minimal residual cancer cells. I am sure if I would've been offered watch and wait I probably would've have done it, but my cancer would've returned. I did end up doing 6 rounds of Xelox after surgery. It is such a tough decision.

[PatMc4]

I went through 5 weeks of chemo/radiation. After finishing my surgeon did a sigmoidoscopy and said all that was left was scar tissue. I had a pet scan that showed no evidence of disease. I was never offered watch and wait, but my surgeon said I may not need chemo after depending on pathology. When the pathology report came after my resection, margins were clear, but there was minimal residual cancer cells. I am sure if I would've been offered watch and wait I probably would've have done it, but my cancer would've returned. I did end up doing 6 rounds of Xelox after surgery. It is such a tough decision.

Thank you for sharing your experience. It seems like there are a lot of tough decisions on this journey.

[CF_69]

I would say trust your doctors. This is what they do. Also, a stoma isn’t automatic. I was prepped for one but the surgeon determined that it wasn’t necessary in my case.

They won’t know anything for sure until they open you up and see what’s what.

[PatMc4]

I would say trust your doctors. This is what they do. Also, a stoma isn’t automatic. I was prepped for one but the surgeon determined that it wasn’t necessary in my case.

They won’t know anything for sure until they open you up and see what’s what.

Thank you.

[henry123]

I would say trust your doctors. This is what they do. Also, a stoma isn’t automatic. I was prepped for one but the surgeon determined that it wasn’t necessary in my case.

They won’t know anything for sure until they open you up and see what’s what.

I concur that they don't have exact picture till they actually open you up.

[_Jelen90]

I wouldn't mess with it and go for surgery especially if you had lymph node involvement...In my opinion it's way to risky to do watch and wait when you are Stage 3.

They thought my husband had a complete response to chemorad as the tumor was completely gone...turns out one lymph node tested positive after surgery.