Name: Camilla Row
Age at diagnosis: 39
From: Los Angeles, California
How were you diagnosed and what’s your treatment?
I started experiencing heartburn in December 2015 when I was 37 years old. I had some heartburn with my pregnancies but this felt different. The pain was burning, stabbing, and most nights I was in tears. I would wonder if I was having a heart attack. I went to see my PCP who referred me to a gastroenterologist and a cardiologist.
Cardio found nothing abnormal, the Gastro told me that heartburn was very common and that I was young and healthy and didn’t have the risk factors that would even warrant an endoscopy.
So he sent me off with instructions to use Prilosec and to check back in in a few months. I used the Prilosec but it bothered me to use it indefinitely without knowing what was the cause. I tried to get myself off PPI’s but couldn’t because of the rebound pain. In March 2018, the pain became so intolerable, I walked into see my PCP and she sent me to see a young gastro who was willing to do an endoscopy right away but his first opening was in 2 months taking me into May 2018.
June 1, 2018
I was given the news that my biopsy came back malignant, even worse it was a very aggressive form of diffuse stomach cancer known as signet ring cell carcinoma. Shocked and petrified with a 3 and 5 year old at home, I went through all the tests and luckily my clinical stage was 1A. with that news, the treatment was surgery only.
On July 2, 2018 I underwent total gastrectomy removing my entire stomach and 47 lymph nodes, 2 which came back positive for cancer. My staging was upstaged to 1B and because of lymph involvement, chemo was strongly recommended to mop up any rogue cancer cells.
August 15 to November 28, 2018
From August 15 to November 28, 2018, I completed eight rounds of FOLFOX6. I was declared NED, cancer-free, in remission! It was during this process I also had genetic testing done and I discovered that I had a germline CDH1 VUS mutation.
I am an anxious person by nature so the thought of recurrence was always in the back of my mind. But I felt like I had an aggressive surveillance plan with quarterly bloodwork, bi-annual CT scans, bi-annual Signatera tests for monitoring ctdna.
In addition, due to the uncertainty of my VUS mutation, my geneticist placed me on an aggressive breast monitoring schedule. I was alternating mammograms with breast MRIs and Ultrasounds.
In December 2020, I had my third abnormal breast MRI and though doctors just wanted to monitor the spot, I asked my Onc to order a MRI guided breast biopsy and I was diagnosed with Atypical Hyperplasia that would at minimum require a lumpectomy and hormone blockers.
Though my family thought it was extreme, I opted for a double mastectomy with reconstruction. So on Cinco de Mayo 2021 (5/5/21) I had my breasts removed.
Shortly afterward in July it was yet time again for another Signetera. I wasn’t worried as I have had numerous in the past that all came negative. But not this time. I got the call from my Onc that it was positive. Barely positive at 0.06 but still a positive is a positive.
I asked for a repeat test the following month in August 2021, which came back positive and significantly higher at 0.19. Needless to say I was freaking out. I had convinced myself I was going to die from a full-blown recurrence.
I contacted experts on ctdna and the consensus was there is a very strong positive correlation between a positive signetera and having a recurrence. And this was very true for me. On December 28, 2021, I went for my 3.5 year CT Scan. I felt great. I was back to my pre-cancer weight, I was walking on average 3-5 miles several times a week in addition to weight training.
I couldn’t process what my surgeon was telling me on the phone Jan. 4, 2022. “Camilla, they found some soft tissue masses in your pelvis and it’s highly concerning for Krukenberg tumors.” My heart sank. I knew what that meant. It meant stage 4 and the data for Krukenberg survivors was grim. I wasn’t ready for this, but whoever is? Right? Wh oever thinks about how they will die until it’s facing them smack in the face and you have no choice but to fight. Giving up in just not an option. It doesn’t exist.
I couldn’t get in for my diagnostic laparoscopy and peritoneal washing until February 1, 2022 because there was a huge Omicron surge in Los Angeles and hospitals were understaff and delaying many procedures. On Feb 9, my surgeon called me again to confirm what I was already fearing and dreading – “I m sorry, it is Krukenberg.” The first think I asked my surgeon was “Dr. Please tell me, what kind of prognosis am I looking at?” He replied, “ I really can’t say because most of my gastric cancer patients don’t make it as far as you….”
It was surreal. Who goes from stage 1B to stage 4? What I thought was such a freak and unlucky thing actually is known to happen apparently because cancer loves ovaries. And there is some mysterious poorly understood pathway between the layers of the stomach and ovaries. Luckily my peritoneal wash came back atypical and I let out a sigh of relief. It’s not negative, but it’s not positive.
Missteps But Blessed
There have been so many missteps but I have also been so blessed to have such a great team around me. Krukenberg was confirmed on February 9, 2022 and I was having surgery on Feb 12, 2022 to remove them on a Saturday! The Gyn Onc was a young woman about my age and as I was profusely thanking her she said “Listen, if they were in me, I would want them out as fast as possible.”
So on Feb 12, 2022 I had a salpingo-oophorectomy. The cancer was contained to the ovaries and the fallopian tubes were negative for cancer infiltration. Nothing else in my pelvis was affected. The plan was to start chemo or consider Hipec – but first we needed to wait for the results of my Tempus NGS to check if there are any actionable biomarkers. But there were none. My PDL was less than 1, I was Her2 negative, nothing. I wanted to be as aggressive as I could so I opted for FLOT since I am taxane naïve and I qualified for Opdivo due to the metastatic nature of my disease.
On Feb 28, 2022, I took my post-surgery signatera test and it was NEGATIVE!!!!!!
I really do believe this will come to replace scans and other bloodwork for surveillance in the future. But until that happens, it’s a damn shame that the current standard of care does not include treatment for cancer on a microscopic level.
They will only treat once the disease can be visualized on an imaging test. Can you image how many recurrences could be prevented if we could treat ctdna?
I truly believe I had an advantage because my Onc started ordering tests when my first Signatera was positive. I had a PET-Ct and EDG with biopsies that were both clear in September 2021, 3 months before my Krukenbergs were discovered.
So where am I now? I started my first round of FLOT and Opdivo on March 14, 2022. It was tough and I was miserable for a week but I got through it unscathed.
My Current Treatment Plan
Unfortunately, I wasn’t able to complete my 2nd round because of low neutrophils but I am ready for next week. My current treatment plan will include 6-8 round of systemic chemotherapy and then I will be evaluated for HIPEC.
I am also an amateur researcher looking at things like NK Killer Cell therapy which is currently only in trials in the states but available in countries like Japan and Germany, cancer vaccines, and just have a general interest in divergent thoughts on gastric cancer treatment internationally.
As a clinical psychologist, I have read through countless research studies and have become pretty adept at making sense of statistics, I just never thought I would be using my doctoral level skills to digest articles about stomach cancer.
I consider myself very blessed. I have an incredibly supportive family who will move mountains to help me. As a psychologist, I have an arsenal of tools, tips, and tricks I use daily. But honestly at the end of the day, we are all human and I have my good days and bad days.
Stage 4 Doesn’t Have To Be So Terrifying
As of lately, it just seems like we are losing fellow gastric cancer friends left and right. It weighs so heavily on my heart and if my story could offer a glimmer of hope to anyone, I would be so grateful.
I know in my heart of hearts, I will beat this and I want others to know that stage 4 doesn’t have to be so terrifying (even though I fully acknowledge the fear). One of the hardest parts for me was hearing that number “4” over and over again. But I will not let define me as a person.
Initially, I was secretive of my stage 4 status because I didn’t want people to look at me as a sickly cancer patient, but now I feel like I am on a mission to spread awareness and hopefully be an example of a stage 4 patient who is thriving.
What is your hope and what do you want to share with others?
That stage 4 could be beaten and I will Prove it!