Badass Tips for Surviving Colorectal Cancer Treatment— Part 1
My Treatment Plan: IMRT Radiation, Chemo then Surgeries
Articles in this Series
The parts of this series are as follows. Links will be added as each is published. ✅ = this article.
- ✅ Part 1 — My Treatment Plan: IMRT Radiation, Chemo then Surgeries
- Part 2 — Tips For After You Are Diagnosed
- Part 3 — Radiation Survival Tips
- Part 4 — Chemo Survival Tips
- Part 5 — Tips for After LARS (Lower Anterior Resection) Surgery
- Part 6 — Ileostomy Tips + Video: Dealing With a Difficult Ileostomy
- Part 7 — Tips for After Reconnect Surgery (Ileostomy closure and resume using your butt)
Part of my mission to give back to the CRC community is to be available to other survivors, as they go through treatment, to answer questions as best I can and to share my experience as a means of conveying hope, providing options, helping others learn from my successes and mistakes, even as they teach me things from their own experiences.
It seems lately the number of people I’ve talked to about CRC treatment has grown — as has the number of people I’ve encountered who are being diagnosed. 😔 In addition to those one-off conversations or social media discussions (@ccndoc) where I often share thoughts about what worked for me during treatment or what I experienced, I decided that putting this information into a series of blog posts would be a great way to share the same knowledge with more people. A series, because not everyone goes through the exact same treatment plan. This way you can pick and choose what parts apply to you. If you know someone newly diagnosed or going through treatment now, please share this post with them!
When reading, please remember that every body is different and this article reflects my own personal experience and results. What worked for me may not work for everyone. Take what you like and leave the rest and always consult your care team. If you are a survivor and want to share your story, tips and advice for surviving chemo, I encourage you to do so in the reply/comments of this post. That said, please don’t condemn or call into question my personal journey, as it is just that. Thank you! If you are newly diagnosed, please don’t let this information scare you, because every body is different, each person reacts to treatment differently, and everyone does cancer their own way!
Background — My Treatment Plan
I am a stage 3b rectal cancer survivor, diagnosed in November 2021 and in remission, since June of 2022.
The following is the breakdown of my comprehensive treatment plan, in case you are comparing or investigating your treatment options. A caveat: It never ceases to amaze me how many different treatment plans there are for the same illness! People who had the same diagnosis as me had completely different protocols. Different countries, different healthcare systems, doctors, and even nuances in diagnosis all contribute to this fact. The good news is, many of my counterparts with those different plans achieved the same result. REMISSION! What matters most is that you 1) Are comfortable with your medical team and trust them implicitly 2) You have confidence in your treatment plan and treatment and 3) You believe that it’s possible to kick cancer’s ass! 🫏 🍑 💪
Diagnosis — November 2021
A diagnostic colonoscopy identified a 4.5’ Adenocarcinoma (tumor) located between the sigmoid colon and the rectum. It was tattooed (my first 🙄) and biopsied and sent to pathology for confirmation. Pathology confirmed cancer.
Shortly thereafter MRI and Cat scans (upper and lower with and without contrast) showed NO Metastasis (mets) — Yay! — But possibly 1–2 lymph nodes involved — with one being relatively certain. 😕 I was staged at 3B. 3 because of the size of the tumor and B because there was at least one lymph node involved. Staging is not just 1–4 (this was new to me) there is also a lettering system that goes from A-C. I learned that stage 4 always includes spread or metastasis and is also referred to as metastatic cancer.
Getting diagnosed is like stepping onto the bullet train when you thought you were on the leisurely glass-top tourist train just checking out the scenery. Things begin moving very fast and sometimes it’s hard to get your bearings! The next thing you know you’re off on a wild ride of scans and doctors appointments and scheduling radiation, chemo, etc. It’s a lot to take in, in a short amount of time. Take one day at a time, one minute at a time if you have to, and BREATHE! You will get through this!
See my post-series “Making of a BadASS” for more of my backstory.
Phase 1 — Radiation — December 2021 (Merry Christmas!)
IMRT (Intensity Modulated Radiation Therapy) — What used to be a 25-day protocol (still is for some) was concentrated into 5 days at an intensity level equivalent to the 25 days but in a much shorter timeframe (5 days). Radiation is always consecutive days with no time off for good behavior. According to my research, this new protocol was developed during the height of Covid in part to prevent patients (who were potentially immunocompromised due to cancer) the 25 days of daily exposure to Covid in clinics. Research then found it was just as effective and in some cases more so than the 25-day version. The downside is that you still get 25 days worth of radiation in a much shorter timeframe so it can pack a wallop! It did for me, but I was quite the 🦄 throughout some of my treatment! 🤷♀️ I will talk about radiation survival tips further in this series.
Phase 2 — Port Catheter Install — December 2021
Beam me up, Scotty! Between radiation and chemo, insertion of my Port Catheter for Chemo was performed. This is an intravenous port that is inserted into your chest just above the breast and connected to a vein in your neck for the administration of chemo (It looks a lot like the com badge from Star Trek but under the skin — thus the reference ⬆️ ). Most people’s veins cannot handle chemo in the arm. Upon the recommendation of my oncologist, I opted to have my port placed by an Interventional Radiologist rather than a surgeon. The procedure was less invasive and did not require anesthesia (just sedation). As I understand it, it can minimize common complications. That said, I know a lot of people who had their ports placed by surgeons under anesthesia and have had no issues whatsoever.
Phase 3 — Neoadjuvant Chemotherapy — January 2022 — April 2022
(Neoadjuvant means before surgery.) I recall that I had two chemo options to choose from. We chose FOLFOX at my oncologist’s recommendation.
Between January 2021 and April 2022, I completed 7 (out of 8) prescribed rounds of MODIFIED FOLFOX 6 Chemotherapy, scheduled every other week as part of that “new” protocol for treating rectal cancer — The 5-day rad and sequencing of the protocol with surgery last was new, but this chemo has been around for years.
The main drugs for FOLFOX are Oxaliplatin, Fluorouracil also known as 5FU (apropos nickname 🙄), and Leucovorin. A steroid and an anti-nausea med are also administered at the start of each round. Some people also get Benadryl (to limit allergic reactions) and an anti-anxiety med.
Each chemo round would include a 2–4 hour infusion of a chemo cocktail 🍸 — “Shaken not stirred and hold the olives!” — through a port catheter, in an infusion clinic (infusion just means a clinic where everyone gets chemo by IV), with a take-home bolus (butt pack with a chemo-filled ball and pump) of Fluorouracil lasting for another 46 hours after that. So basically, three days of chemo pumping through my port cath until Amy, the one with a fear of needles 😳 removed it on day 3. Yes, you can DIY that part though, some people go back to the clinic for removal. Good thing she’s the DIY queen!
Some treatment plans do chemo and radiation together at the same time. I was grateful not to have to do that. I was scheduled to start chemo within two weeks of radiation but had to postpone due to having rare and rather extreme radiation side effects. I was a 🦄 all the way around the rad and chemo block! 🙄 I started chemo almost a month later and I still made it to remission. In fact, chemo can often include stops and starts due to low white blood cell counts, so don’t stress about the timing!
Phase 4 — Surgery #1 — ULAR — June 2022
Your body needs 6–10 weeks to recover enough from chemo to tolerate surgery — this is largely due in part to low white blood cell count/immunity, and it’s important to have decent immunity before having a major surgery. Keeping in mind we were still dealing with Omicron Covid outbreaks at this time and surgery also requires a hospital stay, so there was a modicum of precaution. Cancer patients are very susceptible to germs!
Once chemo and rad were over and just before surgery there were scans, which luckily for me showed no evidence of the tumor left in my body. 💃🏼 This was a great sign. So why still have the surgery? For me and my team, surgery was still “essential” insurance against recurrence because that area is a “fertile bed” for recurrence and rectal cancer is an aggressive cancer. During this surgery, they remove where the tumor was as well as margins around it to ensure full removal of all cancer cells, and they remove a number of lymph nodes for the same reason. I had 12 removed.
My badass surgeon, #TheShettyShow, performed an Ultra Low Anterior Resection (ULAR also called LAR) with an anastomosis (a stapled connection between the colon ends before and after the removed parts) and placed a temporary Ileostomy to allow for healing of my southernmost region. The ULAR removed all of my sigmoid colon and the majority of my rectum. My baby rectum is now only 1” long! Just to give you an idea, your large intestine is around 3’ long, the average sigmoid colon is between 10” and 15.5” and the rectum is between 5–6”. So, I’m missing at least a foot or more at the end of my colon with all but a tiny bit of the very important parts (think poop storage) remaining. This is what I now refer to as my “Sassy Semicolon” or “Solinita” (Little Sun — Because the Solar Plexus chakra controls the colon and it’s yellow like the sun) ☀️.
The “loop” ileostomy (permanent one’s are called “end” ileostomies) was connected where the small intestine meets the large intestine, different for everyone depending on their anatomy. In my case, mine was right next to my belly button. This presented some challenges since my belly button is a pit 😂 and my ostomy was a sinker (meaning it was concave like a U). With an ileostomy you “poop” mostly liquid/gel consistency because it’s the digested food coming from your stomach before water is absorbed by the colon. The “poop goop” goes into a bag/pouch. I had my ileostomy for 10 weeks — More on that experience in a later post. All this so that my nether regions could heal from surgery. The last thing you want after a major surgery like that is feces leaking into other parts of your body and starting a whole different kind of house party. Ostomies are LIFE SAVING measures! In some countries, even this one, they bring great stigma (for no good reason). They also can present new challenges, but for most of us (unless you’re Matthew Perry) the trade-offs are still well worth it!
I will talk about my ileostomy in much greater detail as well as offering tips for dealing with difficult ileostomies in a future post in this series.
Phase 5 — Surgery #2 — Reconnect & Close the Ileostomy — August 2022
10 weeks after surgery #1 I went back in to have my parts reconnected so I could poop normally (well, normally for me now), meaning my temporary ileostomy was closed, once again allowing poop to travel all the way down and out my arse. That really wasn’t the end, but rather the beginning of a whole new lifestyle. Keep reading this blog for future articles on that part of my journey as well as my new habits, routines and Badass Eating a.k.a. The Semicolon Diet.
Phase 6 — Recovery
Almost one year has passed since that last surgery and I still consider myself to be in the recovery phase.
As do most cancer patients, I still contend with side effects related to my treatment. such as CIPN (chemo-induced peripheral neuropathy) mostly in my feet, fatigue (I do not have the same GO, GO, GO stamina I had before treatment), and a (now recovering) frozen shoulder — which could have been a latent side effect of my chemo. In my case, the remaining chemo side effects are mostly mild and mostly only mildly annoying now.
Of course, my pooping skills are forever altered and required some big lifestyle changes, made more manageable with certain therapies and Vitamin I (Imodium). Someday soon, I will be posting about a syndrome called LARS (lower anterior resection syndrome), which is common for people like me with a semicolon.
Here’s the deal though, I AM ALIVE TO THRIVE! I beat cancer! I always say, “I have it better than some and worse than others.” No matter what, I am grateful for every day I get to be here because well, I might not have been.
I share this information about recovery time because most people don’t realize that cancer treatment side effects can linger much longer than what webMD tells you. Be compassionate!
Phase 7 — Surveillance
Because I am in remission/NED (no evidence of disease), I will be in surveillance for 5 years before I can be deemed (by doctors) as “cancer free” — even though in my mind, body, heart, and soul I already am. 💃🏼 To continuously validate my remission, my surveillance schedule is as follows:
- Every 3 months: Blood work (CBC + CEA — a cancer antigen test) and a Guardant Reveal blood test (game changer and my peace of mind) to check for incremental circulating tumor DNA long before any evidence would be seen on a scan. A NEGATIVE Guardant result is like winning the lottery!
- Every 6 months: CAT Scans of my upper and lower torso with and without contrast — to confirm there is no recurrence or metastasis. Most CRC mets do not recur where it began but shows up in places like the liver or lungs instead. Check out my “BadASS Scanxiety” post.
- Every Year: Colonoscopy 💩 — You can check out my last one on our Instagram Channel!
The next part in this series will be focused on “Tips For After You Are Diagnosed.” Click the FOLLOW or SUBSCRIBE buttons to get notified when Part 2 posts!
If you liked this post, please SUBSCRIBE and SHARE! ❤️
I am not a doctor. I am married to one, but she’s the other kind thus all opinions herein are my own and should not be considered as medical advice. Please, do your own homework, make your own choices, and consult your own experts!
In addition to THIS BLOG, my personal writings on Medium can be found HERE. Feel free to follow me so you get an email each time I publish!
You can find all of CCnDoc’s adventures as well as freebies, our social media accounts, books, and fun merch HERE. My articles may sometimes include affiliate links and other links to make purchases, whereby I will make a small commission. Purchases and donations help support this blog, our podcast, social media efforts, my healthcare costs, and they supplement my donations to colorectal cancer organizations.💙
Haters will not be tolerated and any such comments will be deleted and reported.
