My colon cancer treatment journey
I know when I was first diagnosed, the first thing I did was hit Google to find a patient who looked just like me who had successfully navigated her disease: "45-year-old female colon cancer stage four liver metastases inoperable"
If you or someone you love has just been diagnosed, this page gives you a summary of my progression from the earliest signs of disease through all the treatment that followed.
Earliest symptoms (spring 2018): I attributed most of my early symptoms to the stress of being a working parent in a high-pressure, time-intensive job. I found myself losing weight without trying - I would often cook dinner, then find I was not hungry enough to eat more than a bite or two - and noticed I was a little more fatigued than usual when I had to work late nights. Eventually, I mentioned to our CEO while working on a pitch that the only thing I wanted to eat was potato, and I was losing weight. She told me that wasn't normal and to go see my doctor.
I saw my GP in July 2018, and only mentioned the fatigue as an afterthought at the end of my appointment. When my blood samples revealed anemia and slightly elevated liver enzymes, she was concerned and recommended a colonoscopy, which I struggled to get scheduled before December. By September 2018, I was sleeping almost entire weekends trying to catch up, and a concerned friend asked her friend, a GI specialist, to get me in for one. That weekend, I felt an internal hardening just under my ribcage. Neither my friend's friend nor the doctor who performed my colonoscopy were worried, because my liver enzymes were only slightly elevated.
But by the time I woke up, they had discovered a mass in my colon; and just days later a CT scan confirmed almost 80% of my liver was covered in tumor.
Specifics / Prognosis: Stage 4, MSS, wild type. CEA 931. My first three consults all give me 1-2 years and tell me they "hope medical science will have something better to offer you by then." None will discuss the possibility of surgery, and I know now that they doubted it would ever be possible. I find a fourth oncologist who is willing to treat me with curative intent.
October 2018: Just two weeks after diagnosis, I start FOLFOX + Vectibix at Northwestern and complete 5 cycles, every two weeks. One oncologist warns me that Vectibix may give me a rash, but if so, we could manage it. The rash appears just a few weeks after I begin chemo and becomes my worst side effect.
December 2018: My oncologist calls me to celebrate a "miraculous" response to chemotherapy - the largest met is was down to 5 cm. The following day, she calls again, telling me that a radiologist has reviewed my scan and noticed typhlitus, an infection in my colon that caused perforation. Initially, they worry they will have to remove a significant part of my colon; ultimately they release me after 8 days in the hospital and some serious antibiotics. While there, we discuss Y90 radiation, and I even do a procedure to prepare for it - but I end up not pursuing it when a surgical consult reveals that after Y90, I would not be eligible for an HAI pump, a treatment we had discovered in our initial weeks of Googling. My Northwestern oncologist gives me her blessing to contact MSK to see if I would be a good candidate, which we do.
January 2019: Resume FOLFOX + Vectibix for cycles 6-8 and have my first consult with oncologist Dr Nancy Kemeny and surgeon Dr T. Peter Kingham at MSK, who confirm I am a candidate for the pump and have the potential to live for "years and years and years."Dr Kemeny, who helped to develop the pump and initiated its use for colon cancer, assumes leadership of my treatment.
March 2019: Dr Phillip Paty resects my colon, where there is no remaining visible disease, and Dr Kingham installs an HAI pump. We had hoped that he might also be able to resect the liver, but the disease is still too significant and inconveniently placed, so we plan to do that via a later surgery.
April 2019: Resume chemotherapy for cycles 9-19: 5FU + Vectibix delivered systemically, every two weeks, plus FUDR delivered by the pump every other time. Northwestern continues to give me systemic chemo, and I travel to MSK once a month for systemic + pump chemo, carefully monitoring my liver enzymes to ensure I am healthy enough for treatment.
July 2019: I have my first liver resection at MSK. We had hoped that the additional chemo would allow us to resect the liver only once, but my surgeon recommends doing it in two stages for a safer procedure.
October 2019: Have my second liver resection, which removes all evidence of remaining disease. I have clear margins, and my pathology shows 95% of the cancer to be dead, which sounds like good news. But, I do not bounce back quickly from this surgery and have to return to the hospital a few days after the operation to have drains placed, which then have to be maintained for several months before removal.
January 2020: My first clear scan! I am officially NED (no evidence of disease)! Even better, my oncologist says I do not have to do mop-up chemo, as it had taken so long to heal from the last procedure that she feels it may not be necessary.
March 2020: My two-month scan shows evidence of two new spots on my liver - just as we are starting to watch news conferences about something called COVID-19. New York seems to be the epicenter of the breakout, so we secure MSK's approval to be treated locally, and I resume treatment. I do 5 cycles of FOLFIRI, and when a scan shows only modest reduction, we add back Vectibix for the next 5 cycles, and I have a significantly better response, in fact...
October 2020: Clear scans! Back to NED! (But my local oncologist warns me that a full pathological response to solely chemo is rare, and I should be prepared for it to come back - and unfortunately, she turns out to be right.
March 2021: My scan seems to show something new, but Dr Kemeny isn't totally sure the radiologist is right, and wants to rescan in a month. We sigh heavily and book a trip to Hawaii using points that same evening.
April 2021: The rescan confirms the cancer is back, and that I will need to resume chemo. I discuss with Dr Kemeny what chemo cocktail makes the most sense, and we arrive at the same conclusion: 5FU + Vectibix seem to be the power players for me, so that becomes the plan - she suggests just one cycle, then hopefully an ablation.
May 2021: Dr Kemeny and the interventional radiologist start talking, and decide that four cycles would be better than one prior to radiation; so that becomes the new plan.
June 2021: Clear scans - always a good thing, but in this case not quite what we want, as it means ablation cannot happen as the disease cannot be visualized. Which means resuming chemo. I try not to swear.
November 2021: The spot that disappeared now reappears on a scan, but it is not eligible for ablation; so I head back to MSK after Thanksgiving for six rounds of radiation.
March 2022: Clear scans - I am back to NED! And between what has been happening with my health and my career, I'm starting to better understand the role that fear plays in my life, as well as a sense of what my life's purpose might be. More than feeling just healthy, I'm feeling healed.
June 2022: My scan revealed a small met on my liver, near the area which had been radiated; and the ablation that never happened is now scheduled for July.
July 2022: Successful ablation at MSK with Dr Constantinos Sofocleous. He had to ablate a bit more than he expected, but the post-procedure PET scan and biopsy were both clear. Labs the next day showed that my liver enzymes had shot up from 17 to 700+, my highest ever; so they filled my HAI pump with steroids and had me start back on Ursidol.
September 2022: Clean scans - I am officially back to NED, just days before my four-year cancer anniversary and the launch of a year-long content series where I share a look back at an accelerated and authentic version of my journey via twice-weekly Substack newsletters on Strive for Five.