Peter was kind enough to point me to this thread. I may be putting the cart ahead of the horse, as I have not been given the W&W option yet, but I want to research now, just in case (as I may be able to more calmly research now when I have less anxiety about the decision as it's further off).
I did 4 months of FOLFOX over the summer. Had a month's break, with a pelvic MRI during this time that showed the chemo alone shrank the tumor somewhat (and I had to stop the Oxaly after 5 rounds due to severe hand and leg cramping). I just finished, last week, 28 sessions of radiation with capecatabine (as much as I could tolerate, which turned out to be 20 days). They tell me I will get another pelvic MRI in mid-January (I think that will be close to 8 weeks post radiation) to determine next steps and if W&W is an option for me.
My team is pretty excited about the W&W option - as you can probably tell by the path they chose for me (total neoadjuvant therapy). In fact, early on, they asked me to be part of a clinical trial, which involved being chosen randomly to either get chemo first and then chemo/rad OR the flip option (chem/rad first and then chemo). I was too freaked out at that point and the decision needed to be made quickly in order to start treatment (and I felt a lot of pressure), so I declined being part of it. Anyway, they are excited about the option, so if I meet their criteria (which I need to find out the specifics of), I will have that option.
I have read through this thread once and need to do it again while taking notes, but I'm curious what you folks think are the most important questions regarding the W&W option. (Has anyone made such a list anywhere else?) I also need to learn more about terminology (because terminology and acronyms in these threads always frustrates me and halts my research) and the difference between a pathological response and a clinical response - because that seems critical to this discussion.
Questions for W&W:
- What criteria will they use to determine if W&W is an option for me? (I have a large, poorly differentiated, Stage 3a tumor. Does tumor size/type/location matter in this decision?)
- Will there be any biopsy option (as someone seemed to have in this thread) to show that I've had a pathological (right?) complete response?
- How much higher is the risk of recurrence than if I had surgery?
- Would surgery still be an option in the future if there is a recurrence? (Is this "salvage" surgery?) And are people worse off after salvage surgery than having the surgery initially?
- I realize there are trials running now and there isn't much LT data, but what is the longest term data we have for patients who have chosen W&W?
- What will be the plan for surveillance after we choose this option?
Any questions you folks would add to this - perhaps questions you wish you had asked? (I'm sure I'm missing a lot of critical info as I'm just starting this process.)
This is a great thread which has been very helpful, but I have to admit it causes me much anxiety.(What a decision!) I feel like I equally need to do more research on LARS too, so I know what I may live with if I do surgery.
Thanks very much. And best wishes to all.
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - Tumor gone but determining next steps