Radiation for metastases: What to expect

Diagnosed: July 2018

Stage: IV

Type: Colon cancer, metastases in liver

Now this is a story all about how my life got flipped-turned upside down and I’d like to take a minute just sit right there I’ll tell you how I was diagnosed with stage 4 colorectal cancer. My name is Jason, and I was diagnosed stage 4 at age 35 on July 17, 2018. Two weeks prior to this date is when I first experienced any symptoms that were considered red flags. I went to my PCP to get it looked at, mentioning diverticulitis that my mom had several times, and they ordered a CT scan to verify. There was a 5cm sigmoid mass and 14 metastatic lesions in my liver, all but one being 2.5cm in diameter and the last one being 11.5cm x 7cm.

Due to a full blockage via the tumor and the extent of cancer in the liver, I was deemed inoperable and an emergency 10cm titanium SEMS stent was placed to keep the sigmoid colon open and me alive. I began chemotherapy within a week of diagnosis (I’m a lucky guy), and I had 9 cycles of FOLFIRINOX (slightly different than FOLFOXIRI), the big guns to start. 

In November and December 2018, I took a heavy chemo break to have Y90 mapping and 2 Y90 procedures done. I resumed heavy chemo within a month and did 11 cycles of FOLFOX. I stopped this due to it diminishing my platelet counts to the point we were concerned I may need a bone marrow transplant. During the time after my Y90s, I started to see an integrative medicine doctor who helped improve the symptoms and side effects I was experiencing. This allowed me to go back to work in May 2019. 

Scans in August 2019 showed a very good and continued response to chemo and Y90. I also had 5 biopsies (4 colon, 1 liver) performed, with results of no malignancy detected. Scans still showed a few liver spots and one near the colon. October 2019 CT scans showed 2 abnormalities on the lungs. I had an upper respiratory infection at the time when those spots showed up. To be safe, my team put me back on FOLFIRI with Vectibix for 4 cycles. I asked about the possibility of resection surgery for both the colon and liver and was told that it still was not approved by the review board, especially now that those two spots showed up in the lungs. Scans in November 2019 revealed the lung spots were much smaller and labeled as consistent with inflammation or infection, but they could not rule out metastatic disease due to the possibility the chemotherapy was what had shrunk them. I then asked about surgery again and was told no, chemo for life. 

This is when I decided to take the knowledge learned in COLONTOWN, and others, to seek out a second opinion about liver surgery, because what did I have to lose at this point? I wanted to have confirmation by one of the best that I would truly not be a candidate for resection surgery. Learning this information would let me feel confident that I had at least tried to exhaust all options before resigning myself to the chemo for life and inoperable prognosis.

I got my second opinion from a specialist who focuses on only mCRC liver mets. He reviewed it all and explained to me that I was the perfect candidate for his resection surgery. He explained that my right lobe Y90 procedure had worked a bit of overtime and killed off my entire portal vein. It performed its own Portal Vein Embolization (PVE) that [a specialist] uses as a gauge in his two-part surgery. Mine had already shown that the left lobe compensated for the dead part of the right and I would be having surgery with curative intent in a single surgery instead of the 2-phase surgery he normally requires. Best part is his surgery comes with an average of 40-50% curative rate. This is a game changer after being told inoperable beyond palliative reasons. The January lead up CT and PET scans determined the lungs had no lesions and it was infection or inflammation.

He brought on board another surgeon to perform my anterior resection surgery, stent removal, and ileostomy placement. I had a 9 hour long surgery on February 25, 2020 and had 30cm of colon including my stent removed, my entire right liver lobe removed, gallbladder removed, and ileostomy placed.

My pathology report came back two weeks later to reveal that I had a rare, near complete pathological response to the 30 cycles of chemotherapy and two Y90s; with <1% of total tumor remaining from date of diagnosis, 99% was tumor necrosis, the remaining tumor was removed well within the margins, and 5 microscopic lesions on the left lobe were ablated successfully. Of the 31 lymph nodes removed during surgery, all were negative for metastatic cancer! My surgeon was glowing with excitement at the report and basically called me his unicorn patient. WOW, I am a lucky dude to hear that from one of the best at what he does. The other surgeon was impressed at the colon as well, minus the whole stent part (about to get to that), and he is a very good CRC surgical oncologist that had just came from [a great cancer center]. I fully recovered from that massive surgery successfully and had my ileostomy reversed on May 19, 2020. Not one bit leading up to that surgery was easy though.

Three weeks prior to my liver/colon surgery, my friendly lifesaving stent decided to flip the tables and try and kill me by fracturing and perforating my bowels. If I had emergency surgery here in Kansas to remove the colon and stent, it would have taken the curative liver surgery off the table- a surgery I was told I would NEVER have prior to this. Sorry, not having it, I had come too far to not try and tough it out. I have three children, one that was born just two hours after my 8th chemo cycle, and my wonderful wife, who was 6 months pregnant at diagnosis — so I decided to tough it out and make it to the surgery in California come hell or high water.

Those three weeks were extremely difficult for me, because I basically lived in a hot shower, could not eat or drink more than a few cups of water or liquids at a time, and had to have a heating pad on me constantly. I was taking 6-10 showers per day for 20-30 mins at a time to fight off the hunger pangs and the tremendous pain of the stent not wanting to pass much stool (and then when it managed to pass something, it felt like razor blades). I was away from my family, suffering in my parent’s basement, not able to sleep for more than a few hours at a time- tired, scared, lonely, doped up on pain meds, just ready for the day to come when I would become chopped liver, desperately hoping the stent would not get infected or fail my body, even though it had perforated my bowel. 

My stomach was making noises from antibiotics that were not from this world, starting to swell a little bit due to inflammation. I had previously managed to get off the opioid pain meds for a long time due to not having any pain, but I had to have them those three weeks, it hurt so badly. If I had to describe a feeling I was going through, it was dying. I lost an additional 35 lbs. to the already 75 lbs. lost in the year and a half prior due to cancer. Losing 35 lbs. in 3 weeks was very taxing on my body in that short time before surgery. I wish this feeling upon no one. 

Considering what I had just gone through, getting to the surgery was a major accomplishment in my cancer experience, and my medical oncologist now is over the moon about the results of the liver surgery. However, in October of 2020 my CT scan revealed a spot near my coccyx and my rectum as well as a positive Signatera test (88 mtm/ml) and we started me back on 4 more cycles of FOLFIRI and Vectibix before more scans. The day after my last chemo infusion I discovered I had COVID-19 and it delayed my treatments and scans for a full month. Once I was able to get scanned again, the tumor board decided that to get me to a surgical state again that I would need to have 28 chemoradiation sessions to my entire pelvic region. This happened in February and March of 2021 and it caused me some considerable side effects, especially with LARS symptoms and specifically clustering and tenesmus. I was spending upwards of 2 hours on the toilet, and it was not a fun time but my tumor did show response to both the chemo and chemoradiation we threw at it. 

My scans prior to surgery revealed that the tumor had infiltrated my coccyx bone and I had a full abdominal perineal (APR) resection surgery on June 4th, 2021 with an en block coccygectomy, where they remove the entire tailbone and, in my case, also 1cm of sacrum. I lost my entire rectum and anus in the procedure too and was stitched up from behind like a Ken/Barbie doll and got a permanent colostomy bag. 

The margins were clear, albeit very close (1mm), but clear and I was determined to be NED on the follow up scans and pathology report. The same pathology report showed 0 of 11 lymph nodes positive for cancer too. I took a Signatera test before surgery and after surgery as well and both came back negative, but we will continue to use that and standard monitoring tools to watch for reoccurrence and on an accelerated schedule of 2 months instead of 3. The permanent colostomy bag is very easy too, I spend less than 5 minutes per day messing with it most days which is great compared to the 2 hours I was spending on the porcelain throne. We opted to not do any more chemo or radiation, even though 5 sessions of SBRT was offered if I wanted to be overcautious and I am okay with that and being aggressive with the monitoring.

I have my own maintenance routine as well, taking a few supplements that have shown some preventative measures for CRC that were recommended by my oncologist and surgeon- Vitamin D and low dose aspirin. I also take one that is repurposed but under the direction of my integrative medicine doctor, which is an immunomodulatory, but that is for another discussion. Mental health, diet, and exercise have been important, with a largely Mediterranean style, high fiber diet. I cannot stress enough how important it is to take care of your mind during this cancer experience as well as just your physical well-being. Easier said than done, but if you can see a therapist to talk or find a meditation that works for you, then please do it, and don’t hold back. There is no shame in any of this, none of us deserve this and it can really help to talk to a professional. I see a therapist every week to talk about so many things, but it has helped get me through many of the harder to process emotions than I can do on my own. 

I cannot tell you the feelings and emotions that come with going from a situation of not having much hope with a bad prognosis… desperate, scared… and having that flipped completely around and being NED. It has been positively life changing and very emotional at the same time. I have a lot of survivor’s guilt, so I try to cope by providing help to others. I try to help them find their own voice in their cancer experience or try to point people in the right direction (which may prove to be beneficial to their situation). No one in my family will ever understand it either, no matter how much I explain it to them, that’s why COLONTOWN is also my family; we all understand the depth of it all here and there is comfort in that.

I know exactly where some of you all are. It isn’t fun, hearing things that make you go to dark places, things that add layers of stress to an already stressful world that is life-changing, life-impacting nonsense that no one deserves. I’ve had about 6 surgeries including a fistula surgery, 34 chemo treatments, 2 Y90s and mappings, 28 chemo radiations, countless other procedures along the way, 5 colonoscopies, a chemo leak from the take home pump that caused severe chemical burning, had to learn to self-catheterize when my tumor had blocked me from urinating, many ER trips, and so much more. I want to provide some hope, love, support, and encouragement for those who too may feel lost and hopeless at stage 4 and that even something as simple as knowledge of a new procedure or drug protocol your oncologist may not know about that you may learn here, or if you seek a second opinion, or as many as you need, that it can change the whole trajectory of your prognosis, maybe not, but worth pursuing.

One of the first things my integrative medicine doctor told me the first time I met him, after looking me straight in the eyes, was: “Jason, I want you to keep your eyes on the prize, and never take them off. Set a goal, plan a vacation, an upcoming event, anything to look forward to and to keep your eyes on the prize. When you reach your goal, immediately set a new one and remember to always keep your eyes on the prize”. What he said stuck with me, and I never looked back no matter what was going on.