susie0915 wrote:I was never offered the option of no surgery, but after chemo/radiation my surgeon did a sigmoidoscopy and said all that was left was scar tissue and I may be able to avoid chemotherapy after surgery depending on pathology. I also had a pet scan that showed no cancer before surgery but after chemo/radiation. The pathology came back after surgery and showed minimal residual cancer cells where tumor was, so my oncologist recommended chemo and I went ahead even though I was very disappointed. I think if I would've been offered no surgery, based on the pet scan and results of chemo/radiation I may have went that route. But now knowing there were still cancer cells I'm glad I didn't. I don't think it can be known for sure if there is still some cancer remaining unless it is taken out and examined. It is such a tough decision. There are a few on this board that have gone the route of no surgery that can probably give you better advice. My point is that you may finish chemotherapy and it may look as though there is no cancer remaining but there still could be cells I don't know. I'm not sure if they biopsy the area to check for cancer after you finish treatment.
prs wrote:afaust, does your oncologist have any data to support his opinion that your tumor could start to grow again during chemo?
I believe MSK are on the leading edge of colorectal cancer treatment, and I doubt they would have offered you this option if there was significant risk. Why not ask MSK to comment on your onc's opinion?
mozart13 wrote:"Delivering the systemic chemotherapy and the chemoradiation therapy before surgery could have several potential advantages for the patient. First, it will treat circulating tumor cells, which we believe are responsible for metastatic disease, earlier in the process. Second, it will increase the proportion of patients who complete the full dose of systemic chemotherapy. Third, it will improve the probability of local tumor eradication, thus improving the patient’s chance for sphincter preservation and selective NOM."
"At Memorial Sloan Kettering we found that delivering systemic chemotherapy after chemoradiation and delaying surgery yielded an increase in the rate of pathologic complete response, with no additional complications"
https://www.mskcc.org/clinical-updates/ ... ut-surgery
Few months into the chemo (folfox), was alerady cCR, they(my hospital) did MRI and CT, plan was for scope as well, since MRI and CT came back negative, there wasn't need for scope at that time, I continued with chemo. Had MRI and scope week before the start of therapy, also had CT,MRI and scope 2 weeks after chemo/rad, cCR was established at that time.
Gap between chemo/rad and folfox was a bit over 2 months.
Very close follow up is important for anyone qualifying and taking this path.
afaust wrote:rockhound wrote:I wanted it out sooner than later. About the only thing I would have done differently, if given the option, would have just done FOLFOX chemo before surgery and no radiation (there are trials with this). I only had the ileostomy for 3 months (manageable, though not ideal for sure) and had 6 cycles of adjuvant chemotherapy. Do you know your MSI status? That can/should play a role in how you are treated also. For example, the adjuvant chemo I did may have been overkill because my tumor was MSI-high and I have Lynch syndrome. So in that context, we were going to shoot for 8 rounds, decided 6 was not really much different (since MSI-H tumors don't exactly respond to 5FU) and if I was only going to be able to handle 3, so be it (again, because of the MSI status - if I was MS-Stable I would have pushed through for 8 for sure or as best as I could). Anyway, tough choice. I did not want to look back and wonder "what if I would have only had the surgery..."
Thx rockhound for your thoughts/advice. Only 3 months with the ileostomy sounds great - I was told to expect more like 6 months but, in the grand scheme of things, it's only six months and versus a permanent I should be able to manage anything! I do not know my MSI status - and immediately had to do some research just to even understand what that meant! My docs have said zip to me about this, so I'll poke around. I know I do not have Lynch syndrome - that much was found out. Now that I'm thinking about it - would the pathology results from my original colonoscopy show my MSI status?
For sure not moving forward with surgery would create a level of anxiety - wondering if there's just that one cell in my body that has decided to go rogue status!
rockhound wrote:.... Determining MS status should be something that is standard for ALL colorectal cancer patients, esp. at diagnosis or soon after, because of the treatment options (e.g., potential for immunotherapy). Oncologists, nurses, etc. should all be onboard with this and if they are not, everyone needs to press them why not...
...The Association for Molecular Pathology recommends to subject all new colorectal cancers to MSI analysis to classify them into three subgroups: sporadic MMR-proficient, sporadic dMMR, or Lynch dMMR..."
Reference: Funkhouser WK, Jr., Lubin IM, Monzon FA, et al. Relevance, pathogenesis, and testing algorithm for mismatch repair-defective colorectal carcinomas: a report of the association for molecular pathology. J Mol Diagn 2012; 14: 91-103 -- https://www.ncbi.nlm.nih.gov/pubmed/22260991
chemo sabe wrote:.... on chemo or not - as long as a cancer tumor exists, it is quite busy shedding thousands of cells every day. Many of those cells are dying on their own but In the case of rectal cancer, those cancer cells are going straight to the lungs (normal body circulation). I find this to be very scary. I still think about it....
chemo sabe wrote:NHMike, I suspect this will sound rude but that is not my intent. Telling people that a treatment is 'rough" is not descriptive. What is it that is rough for you ?? Similarly, you state that chemo is "harder" with an ileostomy. What does that mean and where did you get your information. Lets face it, chemo is not a walk in the park but I did it for 6 months and only missed work on infusion days (every 3 weeks with Xelox). I have permanent neuropathy from the oxaliplatin but that does not mean everyone will. At the end of my chemo, hand/foot syndrome was setting in and I stopped taking my oral chemo a week early. Please tell us your experience rather than write "rough".
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