Fortunately, or maybe I should say, unfortunately, I never had any symptoms of colon cancer. Perhaps if I had, I would have gotten a colonoscopy at an earlier age or at least the then recommended age of 50.
At 53, it was finally “convenient” for me to get one. I scheduled the appointment with a local GI doctor and just bit the bullet and did it, expecting it to be completely normal.
However, after awakening from the sedation and barely coherent, my local GI doctor told me there was a 7 cm mass in my cecum. I didn’t even know what the cecum was. He also said it did not appear to be cancer; however, it needed to come out. My thoughts at that time were, well, I’m not having it done locally, and how can I get this done without much disruption to my work schedule.
I figured perhaps I could get it done over winter break. As a special education teacher, that 10-day break over the winter holidays was always a time to catch up with friends or do personal things, but also an opportunity to get necessary medical stuff done without taking time away from your class.
As I scheduled an appointment with a colon surgeon at an NCI accredited, academic hospital, The University of Pennsylvania in Philadelphia, I thought to myself, what else will this surgeon need to be able to schedule the surgery as soon as possible? Perhaps, he would need a CT scan of the abdomen. I called my local GI doctor and requested that he order one. This way, I would have everything the doctor at Penn needed, and we could hopefully have this cecal mass removed, and I would be on my way without any interruption in my work schedule.
The day before my “big appointment with the colon surgeon,” I went to pick up the disc and the report from that CT of the abdomen on my lunch break.
With a tuna salad sandwich on my passenger seat, I went into the radiology center, which was only 2 miles from work, went in, and picked up a sealed envelope with a disc inside of it.
As I drove away, but now stopped at a red light, I opened the envelope, fast-forwarded to the impression section of the written report to read “hepatic metastatic tumors in both lobes” of my liver. Apparently, that mass in the cecum was cancerous and had spread to my liver.
Things went black. I knew what it meant. My brother, mother, and sister all had cancer, two of which had passed because of it, and my only remaining family member survived but was disabled from treatments. I knew what it meant.
I pulled over to a local dog park and sat there. Thinking to myself, what do I do, what do I do, I called my closest person, who was in a meeting not be reached. I called my disabled sister, who was also unavailable, and then I called my best friend, who too was unavailable. I thought to myself, LuAnn, you need to go back to school, tell the principal you have a dire emergency and need to leave school immediately, hoping he could get coverage for me for the rest of the school day. I did just that. Then, I went home, still in a black fog, and dug into researching my disease. The initial results and data were not good.
This time frame from colonoscopy to the realization of what I was dealing with was late November 2017 to the middle of December 2017. I was so enthralled with research that I did not begin treatment until the end of January 2018. I don’t necessarily recommend this for everyone, but I knew once I started chemo, my brain was going to be shot, so I needed to arm myself with knowledge about my disease while I had my wits about me.
For all of 2018, it was chemo, hair loss, vomiting, diarrhea, extreme weakness, extreme fatigue, and surreal.
In May 2018, I was one of the fortunate stage 4 colon cancer patients who could be resected. This was huge and considered the gold standard for the shot at a cure for the disease. All in one day, surgeons were able to remove my appendix, cecum, right ascending colon, half of the transverse colon (so about half of my large intestine in all), about a third of my liver, and my gallbladder.
In September 2018, finally able to be ambulatory and somewhat normal, we resumed chemo. This is called adjuvant chemo, or mop up chemo, to hopefully kill any remaining cancer cells. It seemed to have worked because scans and the utilization of liquid biopsies were coming back as no evidence of disease. Of course, I was still very sick but happy and enjoying life because of the results and was very optimistic.
As I continue my battle, I have learned that we must be our own advocates and work with our doctors as a team. If you do not like your doctor, do not stay with them but line up a doctor you do like first.
Social media support groups are the absolute BEST! Without them, I would not know a fraction of what I know, and I would feel alone. Because of many different social media groups, many of which I now administer, I feel I am still alive. Up to the most current treatments and therapies for my disease PLUS, I am helping others.
In 2020, right before the Covid-19 pandemic hit, a recurrence was discovered via a CT scan, and liquid biopsies were coming back positive for ctDNA. This time it was in my peritoneum outside a section of the liver that had been resected. This was probably from seeding. Rare, very rare, but it happened indeed. Guardant Liquid Biopsies were picking something up. Mutations that were not in my Solid Tumor Panel Report were there. Something was brewing, and we were alerted to it.
Fortunately, again, it was able to be resected. Resection was done on March 5, 2020.
My new oncologist was suggesting additional biomarker testing, and thank goodness he did. NOTE: I fired my previous oncologist because although we had indications something was brewing, even scans that showed it, she was not as proactive as I needed her to be.
This is where biomarkers finally came into my story. My new, progressive oncologist tested additional biomarkers and discovered I had a TMB of 15.4 and PDL1 expression of 26. Although I was considered MSS, not MSI-H, he felt immunotherapy could be a valid option.
This is just about the time when the FDA approved certain immunotherapies for certain cancers with certain TMB’s.
Because I had affiliations with Bristol Myers Squibb (my deceased brother used to work for them, and their faculty softball fields are named after him at their Princeton, NJ location), we decided to go with Opdivo instead of Keytruda. We also added Yervoy to the mix for 4 cycles, 3 weeks apart.
When I was resected in March 2020, I prepared the surgeon to do a Signatera Liquid Biopsy. I connected with Natera. Natera is a company that is doing liquid biopsies for ctDNA (namely Signatera), I called the company, made arrangements with them for testing, and ordered the tests myself, telling my new oncologist I was doing it. They sent a mobile phlebotomist to my home to take the blood sample.
Here is a brief breakdown of how the Signatera liquid biopsies went.
March 2020 – test came back positive for ctDNA at 1.8 M/ML
April 2020 – test came back positive for ctDNA at 3.8 M/ML
May 2020 – test came back positive for ctDNA at 7.7 M/ML
We immediately made arrangements for a PET scan, and the cardiophrenic lymph node was completely absent of any cancer. Anything that had been visible prior was now completely gone. At this point, we are now waiting on another Signatera liquid biopsy and an upcoming PET scan. Fingers crossed.
Always hopeful, always trying to embrace the positive, and again, fingers crossed.
Interview update, September 2022.
How is your health since you last shared your story with GCCA?
My health is great! Pushing 28 months with no evidence of disease!
Although treatment with immunotherapy did cause serious side effects, namely Addison’s Disease, which is a serious disorder of the pituitary gland and production of cortisol (a mandatory, lifesaving hormone), I’m here, happy, living a great life grateful to be alive.
When a recurrence was discovered via CT scans in late February 2020, I was able to undergo resection surgery but, it was at the exact moment of our first pandemic lockdown in March 2020.
Getting care and even being able to contact my care team was near impossible and I’m sure there is a degree of PTSD from such an ordeal. There are no words to describe the impending doom of having an aggressive, stage 4 cancer during a global pandemic.
Scans revealed the cancer was making its way to my heart (literally in cardiophrenic lymph nodes) and there was such an overwhelming feeling of complete despair that made it almost impossible to be positive in any size, shape or form.
After nearly 3 months of complete confusion, frustration and utter despair, my oncologist suggested a new course of treatment, based on NEW biomarker testing that led to not only a rapid, miraculous remission, but has given me nearly 28 months of being numerically (via liquid biopsies) and radiographically NED (no evidence of disease).
My life is not only active, I did not having to deal with the devastating side effects from chemotherapy. A targeted course of treatment for my individual cancer biomarkers prompted medical professionals to consider treating with immunotherapy. This targeted treatment resulted in a radical, favorable response. Although it brought about Addison’s disease, not having chemotherapy, which can be debilitating has allowed me to focus on making myself stronger with each and every day. There are bad days and there are good days but, with each good day I am able to work on making myself stronger and live more of active life, spend time with my family, loved ones and friends and regain positivity in the simplest of pleasures.
I’ve been able to see my youngest son make his way through high school, attend his performances in school functions, with pride and grace and plan for his future by visiting colleges and doing what a parent wants to be able to do for their child.
I’ve been able to see my oldest son grow in his career and become more independent and continue to help him flourish with life.
We adopted a new puppy, who admittedly has been a handful, but is a complete joy.
My wife and I had a goal. If my cancer was ever contained, we would purchase a second, vacation home, but with the economy and real estate values being so inflated, plus the expenses of treating cancer, we decided to buy a very large RV and travel within obtainable areas and simply work on grounding ourselves. It’s worked. We love our time away, seeing new areas and finding delightful places to shop and dine out while almost, kind of traveling with our bedrooms. It works perfectly for a stage 4 cancer patient. We have trained our new puppy to camp with us and it has brought about new experiences and memories that are so enjoyable.
Have you had any further biomarker testing? Have biomarkers been used in your follow-up care to monitor you?
When diagnosed with a recurrence, my oncologist did additional biomarker testing to include immunohistochemistry testing. This particular biomarker testing is what revealed that my cancer had what is considered PDL1 expression. With this expression, my oncologist felt trying a specific immunotherapy, which has favorable results with PDL1 expression may be beneficial. It was! It was not only beneficial, my cancer responded with only two rounds of this targeted treatment and I was considered in remission.
Without that particular biomarker testing, it would have been more than likely that chemotherapy was my only choice. Chemotherapy worked for my first diagnosis but, it didn’t last long. Within 6 months, I had cancer again. This biomarker testing opened my treatment options up greatly and well, saved my life.
Have you talked to other CRC patients and survivors about biomarkers?
Weekly, often daily, I talk to other CRC patients around the world, via social media avenues, hoping to educate them to know what biomarkers are and what biomarkers may apply to targeted treatment for their particular cancer. In my opinion, knowing your biomarkers (as many as possible) allows you to truly know what your cancer is comprised of. It tells you what your particular cancer is at a core level. This will educate you to seek out targeted therapies and medical professionals that are willing to listen and work with you as a team to save your life.
How has it been to see your story in various patient advocacy initiatives?
In one aspect, I’m surprised at how many contacts I have met because of my remarkable story, but my phone is always active with requests. If I could devote my life to helping others understand what worked for me, I would be in my glory but, I do have a family and need to move forward. This is a hard issue for me. I try and balance it by working with large initiatives (Global Colon Cancer Association, Guardant, Natera, etc.) by doing organized campaigns or PSAs so my story can be widely spread to help others. Receiving inbox messages from patients from around the world, 24/7, that just need hope is a big order to be able to fill. If by working with larger outlets I can accomplish that and share with “my people” (i.e, others with the same cancer), via social media outlets, it allows me to still be an individual but, help others. It’s a perfect marriage of good.
What advice do you have for anyone who isn’t sure if they’ve had biomarker testing
It is mandatory! ASK! Ask your doctor! This is something that every cancer patient should know! It is also so important to have a patient portal. I absolutely love mine. If a patient doesn’t have one, stop what you’re doing and set one up now! There, you can request, if not automatically posted, everything you need to educate yourself about what YOU can do to save your own life. There, you should find all biomarker testing (if it has been done), all surgical pathology reports, all treatments, medications and more in one neatly wrapped folder.
Then, go to social media – Facebook, Twitter, Instagram and find your people! They are out there!
Any other updates you’d like to share?
Just that life is good. Daily, I still shake my head as to why I’m still alive but then I talk to others who have followed my journey and they tell me, “you researched, you fought, you did what your gut told you to do and you made it.”
I don’t know what the future has in store for me but my family and I take it one day at a time. If anyone ever reaches out to me because they or one of their loved ones has been diagnosed with cancer, the first thing I say to them is “Know Your Biomarkers”.
