Chemo or surgery: decision point, seeking perspectives

Hi friends,

On October 19, I had my first colonoscopy following symptoms of bright red blood in stools that had appeared over the summer. A tumor was found, later identified as a T3 rectal cancer, stage IIi, with no known lymph node involvement, about 6-7 cm above the anal verge.

I did 6 weeks of daily chemo /radiation treatment that ended on January 26. Two and half weeks later, I had an MRI which appeared to show a possible complete response, with no visible remaining tumor. A follow up endoscopy on March 10 however did find an ulcer of highly irregular cells that was identified in the first pathology report as high grade dysplasia, which my team at Penn Medicine advised needed to come out with LAR surgery. The medical oncologist explained that chemo was not a viable option because it would not address high grade dysplasia.

I consulted with an oncology surgeon at Fox Chase Cancer Center who sought a second read of the March 10 biopsy and another endoscopy to see if the ongoing effects of radiation had led to any further progress since the March 10 scope. The second read of the biopsy led to a diagnosis of intramucosal adenocarcinoma, which Fox Chase identifies as cancer; Penn Medicine says that in their terminology, high grade dysplasia (which is not cancer, but pre-cancer), is the same thing as intramucosal adenocarcinoma. The second scope of April 6 found that the ulcer was still there.

Both teams of doctors at Penn Medicine and Fox Chase are excellent and I am incredibly fortunate to have their care. The folks at Penn Medicine are compassionately clear that LAR surgery to remove most of the rectum and sigmoid colon and create a temporary ileostomy to be reversed later, is necessary. At Fox Chase, they agree that the standard of care is the surgery and that that would be the most advised next step.

They did however say that they could support a 3-month course of Folfox chemo to see if that could address the issue and lead to a complete clinical response. They do see the cells in the ulcer as cancer, they note that I was responsive to the earlier chemo/radiation treatment and that this could be a way to avoid the surgery. They estimate the chance of success via chemo to be 30-35%. They do note that the chemo has its own difficulties, potentially long-term in neuropathy which is a concern for me as a musician.

I know that no one can ultimately make this decision but me, but I would value the perspective and experiences of folks here to help in my consideration. The surgery is attractive for its relative simplicity in addressing the cancer. The short-term is very daunting to me, including the ileostomy, reversal and the challenges of adapting to a changed body. But the long-term prognosis seems good; the location of my tumor makes the doctors feel that while my body will be changed for the long-term, the function should be fairly close to normal and not restrict my life in any significant way.

The chemo, while holding the possibility of avoiding surgery, carries its risks and pushes the timeline back another 3 months while waiting to see if it will be effective. Chances are I will still need surgery and so would be beginning that whole process months from now rather than getting started and then of the road to recovery that much sooner.

The doctors have been great. My Fox Chase surgeon says that surgery is the cleanest route and would be his first recommendation, but that the chemo route could be successful and they could support that if my primary goal is to avoid surgery if at all possible.

Thanks for reading this long post and for the many shared experiences on this board that have helping me through this journey. Thank you for any thoughts you may have to help make this decision.

With appreciation,

Rich