Oh, boxhill, you've hit the nail on the head. I have been agonizing about this decision for the past two weeks, and every time I think I've come to terms with it something happens and I start second guessing again.
My understanding is that the goal in my particular case is to reduce the chance of local recurrence, and that's all. There is a whole bunch of playing with statistics involved, but what it boils down to is a 5-7% lower incidence of local recurrence with the radiation, depending on which study you cite. So their logic is that recurrence is very bad, and they want to do everything possible to reduce risk. The also feel that in my case, because the tumor is quite large, that they would end up recommending radiation after surgery anyway (again to reduce risk of recurrence, although I haven't asked if the statistics are different in this case), and outcomes are generally better when it's done before surgery.
I am not convinced that 5-7% is worth premature menopause and the possible damage to my vagina. There is also a possibility that if I decline the radiation I will avoid the ileostomy altogether, the surgeon says it depends on how the surgery goes, she may feel that everything needs a couple of weeks to heal without waste passing through and I'll have it anyway.
I did have to push in the beginning (they weren't going to give me a gyn appointment until like a month AFTER my surgery!) but after I started pushing everyone started backing off and saying that while they do recommend I do it, it's my decision (and the radiation oncologist said this on the phone with me last night) that the 5-7% benefit is small enough that they won't object if I decline. UGH.
I had a moment of clarity last weekend, and realized that if I didn't have small children, I would have declined already. But I'm not sure I can throw away any percentage points, however small, because I damn well intend to be here to help them grow up.
As of right now the plan stands, and I have the last set up appointment tomorrow morning when I will get the schedule for next week. I've got one more appointment with the surgeon for tomorrow morning as well, to talk about the surgery in general because we haven't done that yet, but I'm also going to get her take on how the radiation affects surgical outcomes. She's about my age, and has kids about my kids' age too, and she also said yesterday on the phone that she wasn't sure what she'd do in my position... This is so, so hard.
I did order the silicone dilators that were recommended on the vaginal stenosis thread, I've already talked to the gyn about hormone replacement, and I'm taking full advantage of the integrative therapies that they offer, so I have a few acupuncture appointments next week to hopefully help mitigate side effects as well, plan to drink lots of water, etc. etc. but as I said I'm still second guessing.
38 year old stay at home mom to 8 and 3 year old
Stage 2a rectal cancer diagnosed April 2019
Short course radiation May 20-24
Surgery June 6 - LAR with temp ileo
Starting xeloda July 11 for 6 months
Pathology - clear margins, t3n0m0, grade 2