January 6th 2021 was not just an “off” day for me but it seemed like the world was on fire. COVID fatigue, an insurrection at the Capitol, and getting told that my cancer has come back with high progression.
In my previous post I mentioned after another routine CT scan, the radiologist found a very large mass in my lower abdomen, the size of a Skittles bag 😱. At the time, their best answer to this was “most probable a metastatic tumor” given my Stage IV diagnosis in 2018 and recent surgery to remove my colon and metastasis on my liver.
The day before my PET scan I had met with my colorectal surgeon, who in tandem with my liver surgeon, did a perfect job at removing all visible cancer with “clear” margins during my first surgery in January 2020. During our appointment his response to my CT scan blew my mind, “this does look like a desmoid tumor and not a metastatic one”. This was exactly what my thoughts were, likewise my mother who had extensive experience with this disease. The fine difference between these two terms is that cancerous tumors are highly invasive and can spread throughout your body, while desmoids are localized. However, this does not mean that they are to be taken lightly.
Desmoid tumors are quite interesting. These growths are linked to my underlining FAP diagnosis. Tumors like these are known to grow extremely fast, remain stable, and decrease at random time intervals. What’s even worse, desmoids can appear almost anywhere and can cause extreme pain and can prove fatal in instances where they remain unchecked.
Any type of imaging can prove difficult (Johnathan C.Valesano, 2017)
For every one million people worldwide, two to four are diagnosed with a desmoid tumor per year (Cancer.gov).
FAP has a very deep relationship with these benign tumors. A condition known as “Gardner’s Syndrome”, which is a rare form of FAP, is known to accelerate compared to other versions of FAP (including AFAP).
My mother had three desmoid tumors before they were surgically removed. However, she had to endure numerous rounds of intense chemotherapy to control the growth and allow for a smoother removal. Even with potent chemotherapy, these tumors are known to be difficult to control. For those that are unaware of this condition, most doctors prescribe specific NSAIDS that are known to assist in the wrangling of these growths. This can also help prevent additional ones from popping up. While not a cure or absolute fix, this can often help provide a layer of protection for some.
An example of a desmoid tumor on a CT Scan result, often mistaken as metatsatic disease.
CT scans assist in alerting oncology teams to the suspicion of cancer and other concerning lesions, however, only a needlepoint biopsy can definitively diagnose cancer and desmoid tumors which can be problematic when the location is hard to get at. This was the case of my mass; it was tangled in between my small bowel and the arteries that help feed the blood supply to that area. Now add the fact that COVID was creating massive delays for any procedure deemed “nonessential”; this played a factor in avoiding any biopsy. Instead, I was ordered to get a PET scan the day after seeing my colorectal surgeon. At the time I just wanted to schedule an appointment with everyone that could help, not thinking that they would prefer more conclusive scans – like the PET scan. Setting the stage for yet another co-pay 😭.
PET scan day was set for January 11th. For those who don’t live in the Albany, NY area winters tend to be very blah. By blah, I mean teasing gray skies with no snow, just the cold associated with it. Waking up, nothing really was exciting, so naturally, my mind was focused on my scan. Conveniently located a few blocks away from my apartment I actually walked, like most infusion days (back when my treatments were at that local hospital office). I walked into my oncology office, sat down, met with the lab tech, and got injected with a radioactive glucose dye. From that point on I was secluded for an hour before the actual scan; apparently, I was too radiant to be near (still working on my stand-up humor 🤣).
Jonny’s preference of humor
The PET scan itself was extremely easy, besides my recurring anxiety. Unlike CT, PET scans show a more complete image of your body by measuring and following where that dye is being transported and absorbed. While a step-up from CT scans, the PET is not without its’ cons. Remember this while digesting each doctor visit.
I had to wait until January 14th for the results, before the start of my expected new chemotherapy. My oncologist was extremely certain that this scan will prove her hypothesis, so she ordered and cleared my insurance hurdles beforehand, allowing me to start chemo as early as that day.
My body was quivering in my doctor’s office, waiting for the printouts. This time I didn’t have any advanced warning so my body was seized up, waiting for those results to walk in.
Setting up my reaction, I need to explain my relationship with my local oncologist. While important in my life, I have not always had a smooth affinity with them. In fact, I’ve never trusted them 💯. I can go on and mention the passive-aggressive personality, terrible empathic replies, or even an instance where they lied to me about an important decision. However, moving past blame, they simply did not give off vibes that I would like to see in someone this important in my life. I always say, “If I can’t make you laugh or smile during any discussion [good and bad], chances are, we aren’t a great match!”. My anxiety is driven by unrecognizable body language.
Jonny prepped and ready for his first surgery; Total Colectomy, Liver Resection, and Diaphram Resection at Albany Med in January 2020
Walking in they simply said, “Yes, we are seeing progression not just in the large mass but several clusters of additional nodules in the lower abdomen area.”. She references two larger nodules that the CT scan missed, which proved her theory. After that short review, she handed me the reports, which I extensively read during my new chemo regimen.
FOLFIRI with Certuxinab
A six-hour infusion, bringing back two potent chemo drugs, including the chemo pump which I thought I kissed goodbye to last year, after my initial surgery. I was set for six treatments before another staging scan.
One thing really irked me still. As strict as I was with my protocols to avoid a recurrence, I still did not feel confident about the full diagnosis. Sure, cancer looks likely, but this desmoid tumor thing made more sense. As FAP is familiar, desmoids only show up in rare cases within FAP and those that have a family member with that condition (as I did) have a higher likelihood of getting those as well. Deeper into my research I found evidence that desmoid tumors are common to occur up to a year later after major surgery. Again, my mind kept digging deeper hoping to find more.
One thing I did not want was more chemo. While chemo was great at acting against fast growing tumor cells, it also had an affinity against healthy cells. Which could render my body more susceptible to progression. A fact that I would end up proving right to myself months down the line when I had the opportunity to get that mass biopsy after my acceptance into NIH’s phase two clinical trial. Where I had tremendous success with an experimental immunotherapy drug and vaccine cocktail, allowing me to get surgery to remove an aggressive liver met that was the only location not responding to the Immunotherapy.
Guess what…that mass, which thankfully decreases slightly from the immunotherapy, tested positive for a desmoid. 💃 Thanks to my phenomenal NIH team, they were the ones that pushed for this as soon as it was feasible, to make sure we got it right.
Never doubt yourself, especially if you have evidence and research to back-up your claim. In my head still, I’m not certain if having my body exposed to five additional rounds of FOLFIRI helped progressing to form in my lungs and peritoneum cavity before ending my chemotherapy journey in April of 2021.
This has taught me to be diligent with my documentation; whether it’s my own protocols, diet, supplements, publishing articles and testimonials.