Hello, all. It's been a while. I am done with 4 months of FOLFOX and 28 sessions of Chemo/Rad. I finished radiation last week and while I feel like I should celebrate, after enduring all of that for the last 6 months, thoughts of the future sober me quickly. I get a break now and then get scans in mid-January - to determine how much the tumor has shrunk. My initial chemo apparently reduced it a bit; time will tell what radiation does. Doctors tell me surgery happens fast after scans - so I feel like I need to be ready and researched.
Watch & Wait (or, as my team calls it - "Surveillance") could be an option for me if the tumor has completely shrunk. But, most likely, I will have surgery. I am assuming the latter. It seems like a lifetime ago since I spoke to my surgeon so I don't recall the exact wording for the surgery she plans to but I do believe they will be taking my entire rectum and uterus and creating a new rectum for me.
I have been reading a lot about RC folks and their struggles with LARS and I am wondering ... >>is there is ANYONE who does NOT have LARS after surgery?<<
Having just been through chemo radiation and still dealing with the stomach and bowel issues associated, I have a new understanding of how LARS affects one's life. ("Increased frequency and urgency" is no joke and really limits you.)
As it's been stated - the surgeons don't seem to discuss this ahead of time - even though it's well documented in the literature (though I can't follow all of it). Neither of the surgeons I consulted with mentioned anything about it. As one surgeon put it, when I asked what life would be life after surgery - he said, "You just may not want to eat before you go to a cocktail party." Based on what I've read - it's far more complicated of an issue for most. Is there anyone out there who had surgery who does NOT have LARS? Or is it pretty much a foregone conclusion? It sounds like a life changer.
Also, I am about to embark on WATCH & WAIT research. Now that I've been indoctrinated into the medical world, I know how things work and I probably won't have much time to make a decision or the opportunity for back and forth conversations with my surgeon to get answers I need - if I indeed have a decision to make, that is. I will research the boards on my own, but if anyone has seen any new research on W&W or any good current info, I'd appreciate it. Or, if you are watching and waiting or know anyone who has, I'd love your perspective. When I read a little about this when I started this "journey" in the Spring, I assumed I'd never consider Watch & Wait, but the doctors seem to talk it up as a real option and given LARS seems to be such a life-changer, perhaps I should research and consider W&W more seriously.
Thanks to all who helped me out with chemo advice. I truly value this board as a resource and community. But I also feel far more stupid than most on here. I am an educated person with a BA and Masters, but I am amazed at the level of understanding most on here have for this topic. Personally, I find the learning curve to be extremely steep. And when you already have anxiety about the topic and your spouse/caregiver prefers to take the doctors at their word (and is not willing to help research or bounce ideas off of), I sometimes have to just lessen one anxiety and not read about anything for a while - even if it could prove helpful. Am I the only one? You all seem like pit bulls for information and PhDs in science. (My parents are PhDs in scientific research and would read scientific studies for fun, but sadly, they both were diagnosed with dementia as I was diagnosed and don't even realize I am sick, let alone able to help me decipher these studies.)
Happy Thanksgiving to all too! It was a joy to have a real (mini) meal after eating only applesauce, rice, and bananas for the previous month!
50 - F - Mom
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 - MRI & flex sig show tumor gone
Feb 19 - MRI & flex sig show tumor gone
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good