Initially, my treatment plan was based on a recent trial called PROSPECT, which showed that initial chemotherapy regimen called FOLFOX (FOLinic Acid [leucovorin], Fluorouracil [5-FU], and OXaliplatin), followed by surgery, has the same survival outcomes as the standard of care treatment which includes radiation with the chemo and surgery.  Each of the three treatments have their own side effects, so cutting out one of them is definitely preferable. This plan started on August 30, 2024 when I had a port implanted for chemo delivery. Click here for more about my port placement.  I was originally supposed to start chemo on September 4th, but we delayed it becasue my oncologist wanted me to consult with the surgeon first on Sept. 6th. That was the consultation that really sent me for a loop.

When I met with the surgeon, I was under the impression that we were merely checking a box to confirm that the tumor was high enough to "spare my sphincter" meaning I wouldn't need a colostomy bag the rest of my life.  Supposedly, anything higher that 5cm should qualify and with mine at 7.9cm, we were very certain that my sphincter would be spared.  However, when I met with the surgeon, he explained that he would have to perform and Total Mesorecatl Excision (TME) meaning that he would have to remove 90+% of my rectum.  He would be able to reattach my butthole, but I would have something called Lower Anterior Resection Syndrome (LARS) the rest of my life.  Basically, without a rectum to "store the payload", LARS patients don't get any warning when they have to release solids or gas. There is also more frequent and clustered events.  Over time, a "new normal" will be reached, but Quality of Life is definitely affected.  The only way for me to avoid LARS is to avoid surgery and the only way to avoid surgery is to follow the protocol of another recent trial called OPRA, where patients received chemoradiation, followed by the FOLFOX and 20-30% of those showed no signs of cancer and were able to enter a "Wait and See" protocol.  In an attempt to try to save my rectum, I met with a radiation oncologist on Sept. 9th to discuss possible short and long term side effects of radiation to help make my decision.  After getting a good understading of what to expect from radiation, I decided to move forward with the OPRA protocol.

I thought my decision had been made, and was scheduled to start my radiation protocol, but a new option presented itself.  After telling a few people in my close circle, I was introduced to a colorectal surgeon, other than the one I had consulted with.  Again, I was touched at how above and beyond people have gone for me when this surgeon spent over an hour on the phone with me on a Sunday night.  During our thorough conversation, he confirmed everything I had heard from the first surgeon, but also suggested I speak with another oncologist (just to get another set of eyes on me) and let me know which surgeon in Phoenix was respected as being the most experienced and probably "the best" at the TME procedure.  Although I was (and am) completely confident in my current care team, I decided to meet the new oncologist (who was called by the surgeon and fit me in THE SAME DAY!) and see what he had to say.  At that visit, the oncologist offered an ongoing trial called JANUS, which follows the OPRA treatment schedule, but during the chemotherapy phase, half of the patients are given FOLFOX, which consists of two active chemo drugs, and the other half are given FOLFIRINOX, which adds a third active drug Irinotecan.  The study is to specifically determine whether the additional drug keeps more rectal cancer patients off the surgery table.  I met with the research coordinator and brought home a copy of the informed consent.

At that time, a couple main thoughts were going through my head.  First, I realized how much I really loved my rectum.  I'm more than willing to endure some pretty nasty side effects to save that little piece of poop luggage that allows me the privilege of home field advantage (most of the time).  Secondly, I thought I had to make a quick and difficult decision.  Do I abandon the care team I have been so happy with for the opportunity to partiipate in this trial to increase my chances of avoiding surgery?!?

I reached out to a couple people I trust, asking their opinion about the trial and/or what they would do.  But then I realized how much I trusted my own doctor.  I felt 100% confient that if he knew the JANUS trial would postiviely affect my mortality or morbidity, he would happily refer me to the other team.  My wife and I reached out to him and he immediately responded that FOLFIRINOX is already an approved treatment and I could follow that treatment protocol without the JANUS trial.  The trial is just comparing two available treatment options to see which one is better.

This was great news! To me, this meant that I could have the best of both worlds.  I keep my current care team AND get to follow the JANUS study arm (FOLFIRINOX) which will maximize my chances of "organ preservation".  My mind was made up, and I already had my schedule.  I start chemoradiation (I take an oral chemo during radiation) on September 19th (edit: this was moved to 9/23) and am following the OPRA/JANUS protocol.  I'm REALLY hoping to be in the lucky 30%, so please keep me in your thoughts and prayers.

An additional benefit from the "second opinion" was that the Informed Consent I came home with is chock full of specifics regarding the medications and their side effects.  I will post the side effects and thier incidence on my Side Effects page and will hopefully keep the page up to date with a description of any that I am experiencing.