Postby rockhound » Thu Jan 04, 2018 10:25 pm
kal74 wrote:I’m 43 and was dx with a very low rectal tumor in July 2017, staging before treatment was Stage 1 T2 N0 M0 after meeting with 3 surgeons I decided to do 6 week of Xeloda and Radiation to shrink the tumor to get clear margins and avoid a permanent bag. My tumor shrunk by approx 50% and I’m now 4 weeks out of a successful LAR resection and currently have a stoma for 12 weeks. They removed 35 lymph nodes and all were clear and they said the tumor was a T2 from MRI prior to surgery and after they removed the tumor on the pathology report.
I’m meeting with my on oncologist next week to discuss possible additional chemo, my surgeon is recommending it along with the oncologist to be aggressive since I’m young but I’m feeling like if I’m actually a Stage 1 is additional chemo worth it. I feel like I’d be ok with doing the Xeloda again since I know what to expect and tolerated it well but I’m really scared of getting a port. Has anyone else been faced with a similar decision?
I was in a similar situation- decided to go ahead and do FOLFOX chemo and if I started having major side effects, then just stop it cold. Initially the plan was 8 cycles, but my NCI center oncologist overseeing everything (and local onc who oversaw the chemo) both thought 6 would be fine after the ASCO meeting this summer- that was about two weeks before I started. I've got Lynch syndrome, so the 5FU does not really do anything alone and the idea with the chemo was that oxaliplatin might help and was worth doing just to be aggressive given my age. My oncologist talked to other folks at the ASCO meeting about my case who were more familiar with Lynch and they all agreed with doing the chemo.
I may have been over-treated, have minor neuropathy in my finger tips and feet (chemo ended in late August), but I'm allright with my decision. I would not have minded having more lymph nodes removed, but that's allright too and trust my surgeon. My oncologist and surgeon both made the case that even though my pre-treatment MRI showed no lymph node involvement, the radiation would have nuked everything that may have been involved, so to error on safe side, it would be best to just go ahead with the adjuvant chemo. I was staged a bit higher before treatment (MRI report states T2, surgeon and onc told me T3) also and my tumor did shrink a ton via radiation, but it was not completely wiped away.
The port was fine- I had mine installed and then started chemo next morning. It was sore for a few weeks, then I got used to it.. Got it removed when I had my ileostomy takedown in september. Good luck on your decision- it is not easy!
45 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
5/18 - CT, NED
11/18 - CT, NED
5/19 - CT, NED..moving to yearly CT scans
5/20 - CT, NED
5/21 - CT, NED (4 yr. scan)