Heather’s Story: In Honor of Appendix Cancer Awareness Month
Pictured above, RCRF Operations Coordinator Heather Ronshaugen during her treatment in 2014 and then present day with her family.
For Appendix Cancer Awareness Month, RCRF’s very own Operations Coordinator Heather Ronshaugen shares her experience with the disease, from diagnosis and treatment to valuable lessons learned throughout the process.
If you or a loved one has been recently diagnosed with Appendix Cancer and you are looking for patient resources, please feel free to visit the Appendix Cancer Pseudomyxoma Peritonei Research Foundation at: https://acpmp.org/
Q: When were you diagnosed with Appendix Cancer and how did you go about receiving a diagnosis? Did you have any symptoms?
A: My cancer was discovered in 2014 after a routine OBGYN visit. My doctor felt what she thought was a large ovarian cyst and followed up with Ultrasound and CT imaging studies. The results from those scans were ruled “highly suspicious for ovarian cancer” and warranted surgery. During surgery, a robotic procedure performed by one of the top GYN/ONC specialists in the Midwest, the pathology reports came back negative. I woke up from surgery and the results of the day included a complete hysterectomy, appendectomy, no Port-a-Cath and no cancer diagnosis!
In recovery, I could hear the medical staff chatting. I recall them talking about the removal of my appendix and in my post-anesthesia stupor I was sure a mistake was made and that they had performed the wrong surgery. I imagined myself as the next cautionary tale taught in medical school. The surgery took longer than anticipated and afterwards the doctor told my waiting room of family and supporters that she had never seen anything like it and along with the hysterectomy and appendectomy she had and lasered what she could see of the mucinous material contained within my abdomen. I was discharged to home the next day, a little confused but mostly overjoyed at the words “not ovarian cancer.” That was what we hoped and prayed for, and I was ready to move forward.
Specimens were sent for testing to the lab at the Mayo Clinic in Rochester, MN, for further evaluation. I was home and mostly recovered from the surgery when I received a call about 10 days later confirming that it was in fact cancer, just not ovarian. They told me the cancer originated in my appendix and called it low-grade mucinous adenocarcinoma of the appendix with pseudomyxoma peritonei. In recent years, the medical community has changed the terminology used for AC/PMP diagnoses, though it seems that based on where you’re treated there are some inconsistencies with the terminology used.
In retrospect and after some education, I think there were symptoms that I and my previous healthcare providers overlooked. One very experienced doctor even suggested that the occasional abdominal discomfort I experienced was most likely a result of diet and probably the sparkling water I had recently discovered. I knew it was not GI related but didn’t question him further. I had also been told about a palpable ovarian cyst, but at that time no imaging studies to confirm or follow up exams were ordered, so though it hovered in the back of my mind, I was not concerned enough to push for further evaluation.
Q: Did you know anything about Appendix Cancer before your diagnosis? If not, what were some of the most interesting things you learned throughout your treatment and experience?
A: I knew absolutely nothing about AC prior to my diagnosis. My first reaction was much like many of the people who hear my story. Even within the cancer community, most will say things like, “I didn’t know you could get cancer in your appendix” or the ever popular “oh good, you don’t need that anyway” as though that simple, unnecessary organ didn’t just wreak havoc inside my body. There were even medical professionals who looked through my chart and responded in that manner.
When I was first diagnosed, it was thought that 1 in a million people are diagnosed with AC/PMP each year. However, the incidence numbers are increasing and are as confusing as the diagnosis itself due to the various types of appendiceal tumors, classifications and factoring in the presence of PMP.
There are many things I have learned over the years, but what stands out is that diagnosis, treatment, and surveillance look different for everyone even within the smaller Appendiceal Cancer communities. The copy/paste approach to medicine must become a thing of the past and the medical community, not just oncology, must make room for personalized medicine. I believe that patients, now more than ever, need to advocate for themselves and the textbook ways of practicing medicine should not be barriers to individualized medicine.
Q: If comfortable, please share how your treatment journey went. What was the most difficult part of the process?
A: My treatment involved multiple surgeries. The second of which the AC community has nicknamed “the mother of all surgeries” (MOAS) also known as CRS/HIPEC (Cytoreductive Surgery/Heated Intra Peritoneal Chemotherapy). It is likened to the physical exertion of running a full marathon. (So, no need to add that to my “To Do” list!) My CRS/HIPEC lasted 14 hours, during which my liver and diaphragm were scraped, and all remaining non-essential abdominal organs and even my belly button were removed, as well as all visible tumors and mucin. When that was completed, a heated chemo bath (HIPEC) was perfused into my abdominal cavity for approximately 120 minutes and washed around to destroy any unseen or microscopic disease that remained. Thankfully, I have not needed to receive further treatment, have had No Evidence of Disease (NED) since and have now been told I no longer require surveillance.
There was physical pain and discomfort following the surgery, but the hardest part for me was emotional. From the moment I was able to comprehend my diagnosis I had one goal, and it was simply to live and get to raise my kids. I was thankful it was physically happening to me and not someone I loved, but a cancer diagnosis affects everyone, no matter how hard you try to shield them. I was 33 years old, my husband had just started a new job, and we had just moved to a town where we really didn’t know anyone. Our new adventure had just begun nearly 3 hours away from most of our extended family. My oldest son was just a first grader learning his way through brand new school hallways and friends, my daughter, an eager preschooler, was busy dominating the start/stop on her bicycle, and my youngest son had recently taken his first steps and just celebrated his first birthday. Putting on a brave face every day was necessary but challenging and sometimes I failed. There were days when it was incredibly difficult to navigate the fears, uncertainty, financial burden and the wide-ranging emotional roller coaster all while just trying to be their mom. Even 11 years later, the fear creeps in and sneaks up on me occasionally but I know how fortunate I am to be here and am so grateful for those who have fought this battle by my side.
Q: Did you take the opportunity to connect with other rare cancer survivors? Feel free to talk about how this connected you to the rare cancer community and even RCRF.
A: I am so fortunate and had an incredible family support system, but it took me a while to connect with other AC survivors. I was cautious regarding information on the internet and was even advised to avoid it. Eventually, I found a group and met some of the very best people and mentors and was fortunate to work alongside them advocating for appendiceal cancer research in the non-profit space. This path led me to my current role with RCRF.
Though I didn’t get to know him long enough, Mark’s vision and guiding principles resonated with me as did his frustrations with the countless roadblocks to real and meaningful paths to new discoveries. I am not satisfied with the current landscape surrounding cancer research, particularly rare cancers, and neither was Mark. None of us should be. Researchers having limited or no access to data should never be what prevents forward momentum to treatments and cures. The heart of these “data points” and oftentimes heavily guarded “intellectual properties,” are actual PEOPLE. They are people like me who understand being grateful for each new sunrise but urgently need effective treatment options and while we’re at it, let’s add prevention and cures.
Even though research has taken a devastating hit in the past few months, we must stay vigilant and hopeful. With every sample donated there is a new chance. Patients have a significant opportunity to contribute to meaningful research and will be the driving force to accelerate these efforts. They just need to know that programs like pattern.org exist and it’s the patient-powered collaborative efforts that fuel true innovation and progress.
Q: What advice would you give to someone newly diagnosed with Appendix Cancer?
A: # 1 – Get to a specialist however possible. AC is a tricky and complex disease, and it takes dedicated expertise and experience for the best outcomes. There are much better resources available online now but be sure to get information from reputable groups.
#2 - Donate your tissue and medical data and know that you, the patient, are an integral part of the solution and the necessary key to making research move forward.
#3 - Be as informed as you can tolerate and surround yourself with a team you can rely on. Medicine and technology are changing so rapidly that it is difficult for providers to stay current, which means advocating for yourself or having a team that can help you is vital.
#4 - Finally, kindness, gratitude and humor. I don’t believe there is a “right way” to journey through a cancer diagnosis and at the risk of sounding like a “Hang in There” cat poster, just remember there will be bad days, but the good ones are there too. It’s easy to spiral into tough days and it’s okay when it happens but just remember it’s not a place to stay. Give the good days the pedestal they deserve and never give up hope.
