Hi all,
This is my first post, I'm so glad I found this community. I am helping my mother face rectal cancer and would greatly appreciate your thoughts and advice.
She had a colonoscopy and then endoscopic ultrasound (EUS) concerning a suspicious polyp in the lower rectum. The EUS staging came back as T1. However biopsies taken during both the colonoscopy and EUS were only "high grade dysplasia." Based on these findings we were told that a endoscopic submucosal dissection (ESD) should be curative, but they wanted to do an MRI first. Well, we just got the MRI results and there were apparently are two suspicious lymph nodes. The MRI staging is T1N1b, which I understand is Stage IIIA (assuming it is also M0). The doctor that was going to perform the ESD advised cancelling that procedure and is instead referring my mom to a multi-disciplinary rectal cancer clinic where it sounds like they may do additional scans I guess to also check for spread to distant lymph nodes.
We are feeling whiplash from expecting that her case was relatively early and not even necessarily cancer to now hearing that she may have fairly advanced rectal cancer. It is a struggle for us because my mom doesn't research much about what is going on or ask many questions of the doctors so I try to join all the meetings I can but I am not always able to. For example when the doctor called her and told her about canceling the ESD procedure I would have all kinds of questions that I was not able to ask. So I am coming to you all in hopes that you may have some insights on some of my questions:
1. Is it normal that multiple biopsies would show only high grade dysplasia and yet the tumor is not only in fact cancerous but would have already spread to lymph nodes? What degree of certainty should we have about the MRI results in light of the biopsy results?
2. What would have been the harm in going ahead and doing the ESD and then testing the removed tumor and going from there? ESD wouldn't preclude later surgery, right?
3. Assuming no spread to distant lymph nodes, I am reading that the T1 part of T1N1 makes her case still have a good outlook relative to other stages, even some stage II that have higher T values? Are there folks that had T1N1 that can share their experience and what their treatment was like?
4. In the case that she has to do chemoradiation prior to and/or after surgery, how long might the course be and would she be quite fatigued? This is of concern in part because right now she provides childcare for my son while my spouse and I are at work, so I am wondering if we need to start figuring that out ASAP.
Thank you for any thoughts you may have!