NHMike wrote:I had the full 28-day course of radiation and neo-adjuvant chemo before surgery and didn't have any permanent issues with the radiation but results may be all over the place on that. They will recommend drinking a lot of water before the radiation and that's definitely important as the water absorbs radiation.
The ileostomy requires some training and this should be provided at the hospital but I found that I still had difficulties. They give you a pouching solution but it may not be the best one and it can take some trial and error to find the best solution (there are several different vendors and each vendor has multiple products). I found that it was easier to do the bag changes with help. I think that I only changed it once by myself.
I recommend building a small emergency bag with supplies in case you need to change things on the road. Coloplast sent me a small bag in a sample kit and I used that to hold supplies for an emergency change.
It is good news that the tumor is higher. The lower the tumor, the worse the odds of being able to control things after the reversal. I do have difficulties with LARS (Low Anterior Resection Syndrome) and I'm at Dana Farber in Boston right now waiting to see my surgeon about LARS and obstructions due to scar tissue at the ileostomy site.
There can be difficulties with this stuff though you're stage II which is earlier than many of us. We can answer questions, especially the type where you ask what happens next.
Cmarie03 wrote:I am sorry you have to go through this. I am a stay at home mom of a 3yo and 10mo. I was diagnosed stage 3 rectal cancer. Read the thread on here about vaginal stenosis. Search for it - good info and these women helped me a lot. Get a good set of dialators or stay sexually active (obv post surgery you will use dialators when you are recovered and able to). I am a few weeks out from radiation - radiation was tough for me (nausea and lost weight) but everyone is different!!
I went to GYN today and got the estrogen cream I heard about from vaginal stenosis thread on this. It is true not all the docs will tell you about side effects but ask!!! And find a good gyn to help you deal with menopause. I had my last period first week of radiation and haven’t had one since. My dr ordered bloodwork today to see where my hormone levels are at.
Sorry if this is rambly. I feel your pain!! Hang in there.
HappyNao wrote:.... Any thoughts and encouragement are much appreciated, thank you.
"Short-course radiation therapy (25 Gy in 5 fractions) with surgery within 1 to 2 weeks of completion of therapy can also be considered for patients with ultrasound or pelvic MRI stage T3 rectal cancer. ...
Reference https://www2.tri-kobe.org/nccn/guideline/colorectal/english/rectal.pdf REC-D, page 32
Microsatellite Instability (MSI) or Mismatch Repair (MMR) Testing
• Universal MMR* or MSI* testing is recommended in all patients with a personal history of colon or rectal cancer...
• Stage II MSI-H patients may have a good prognosis and do not benefit from 5-FU adjuvant therapy.
• MMR or MSI testing should be performed only in CLIA-approved laboratory...
Reference https://www2.tri-kobe.org/nccn/guideline/colorectal/english/rectal.pdf REC-A, page 25
HappyNao wrote: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.
HappyNao wrote:... Do you know anything about the long term side effects of the short course compare to those of the long course? Something to ask the radiation oncologist I suppose...
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