My DH is just a few months ahead of you in getting nearly same news as far as a rectal mass goes. Lots of tests happened over the next few weeks. Everyone here helped me by letting me know that the waiting would happen but would offer necessary insight. Getting doctors was awful as I knew little more than flip and dip through lists. What helped a lot is finding out that our local cancer center uses a multidisciplinary team (oncologist, radiologist, Surgeon, nutritionist, palliative care nurse) all who work with cancer. We were originally just given a surgeon name scribbled on the oncology report and knew no better. I started talking and calling anyone to find out who was not a general surgeon but a colorectal specialist - that’s when I found my state has one (ha - not sure of any others), and he is part of my cancer center’s multidisciplinary team. I canceled surgeon appt and got in with him. He was great because he understood the entire cancer process and wasn’t simply there to do a surgery. I think he was the one that got all the tests rolling.
Also, one huge help is that I started a binder right away. I printed out a calendar and began writing all appts along with phone numbers and contact info. I could’ve done this electronically, but there’s something about writing it out that seemed helpful - and we could just grab the red binder anytime to file receipts and reports and prescriptions and more. That binder has been a huge help, and I took it to all appts.
I didn’t find out till too late how you can go with a well-renowned cancer center far away but have radiation and chemo handled locally. If I could do it again, I would’ve done that. I was under wrong impression that we’d have to travel hours per day. What a shame. If things get worse for us, I’ll want to switch to a major cancer center.
I hope this is helpful.
As for this summer, it was lost to tears and worry and anxiety. I can’t say enough how helpful it was to have that multidisciplinary team all meet simultaneously with us and talk. It was huge. It was good to see everyone in accord. Two disagreed in the clinical staging, so they went with the more severe to be safe. It sounds weird, but I just needed this team to give facts, a plan, and hope. They did.
Also, this board has been a huge help. Honestly - people here are so helpful. I wish I could meet them all and thank them personally.
Here’s something I was told when I insisted they just cut out the tumor. Docs said it took about 10 years to get to this size, so waiting a few more weeks for a successful surgery under optimum conditions was fine.
My husband is through that first stint of daily chemo and radiation. Now we wait 6-8 weeks before surgery. They call it the cool down period. The Xeloda chemo was a pill
Form twice a day (six pills per day), and he didn’t lose hair. And, the anti-nausea pills worked every time.
I hope this is helpful and offers hope.
DH, 56, Sigmoid & rectum
G2: Moderately differentiated
5/19 Baseline CEA value - 18.9
Lymphovascular invasion (LVI): present
Perineural invasion (PNI): not identified
Surgical margins: proximal -negative; distal - negative 1.5cm; circumferential - negative 1mm)
MSI status: Waiting
Lynch status: ?
Open Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileo w/Appendectomy
Adjuvant Chemo: to begin 11/19