I would do whatever the oncologists recommend you do. I also have FAP, the only one in my family so it is a muatation that caused it during birth. I didn’t find out until I was 35 years old and had my colon and recum removed. I was diagnosed at Stage 3B and did 12 rounds of Folfox. After that they found cancer in a para aortic lymph node and I started on Folfiri + Avastin for life. The cancer then spread to my lungs and after more genetic testing it was determined that there weren’t many types of chemo that would help the lung Mets. Those have since spread to my brain and I have had SRT radiation to help those spots for a few months.
My advice would be to do whatever the oncologist tells you. Chemo sucks but it does help and it may be the thing that prevents the cancer from moving someplace else. Between all the different chemos I’ve had over the years it’s more than 65 treatments.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC, KRAS mutant, MSS
09/14-04/15 - 12 rounds of FOLFOX
07/15-CT showed para-aortic lymph node, onc thght inflammation
10/15-DX Stage IV, CT lymph node tripled in size, 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin
11/17 - no chemo since. Lung growth minimal, lymph node is stable