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Cancer of Unknown Primary

by Amy Aiken |

One of our Abilitee Ambassadors, Jessica Buscho, wrote the following about her experience with cancer.

One of the funny things about being a colorectal cancer patient and survivor is that people almost always want to know your symptoms. "Hello, friend. Can we talk about your poop?" Poop as a conversation topic is a sometimes funny, awkward, and always under-discussed. Bowel habits aren't a body function that is talked about like sleep, menstrual cycles or eating. So I get the feeling that when people hear about my diagnosis they see it as an open door to finally talk to someone about their own bowl habits. They want to understand how I missed the symptoms and was diagnosed so late.

To wonder why someone would ask this would require you understanding something about me. Hi! I'm Jessica. Stage IV colorectal cancer patient, wife, volunteer and super mom. 2 years ago, I looked like I could do it all: keep up with my household duties, manage 3 children's busy schedules, cook all home-cooked meals, exercise, chair a local non profit volunteer advisory committee, lead a very active Girl Scout troop, plus be room mom AND the art teacher for 3 classrooms all while also working part time as a substitute teacher and participating in 10-15 weekly hours of community volunteer work.
WHEW. I'm exhausted just thinking about it. But it didn't feel that way at the time. I thrived in the busy. In being perfect. In saying "yes" to it all. My friends referred to me as Wonder Woman. I was everyone's emergency contact person, your "go-to" for advice, and the one with a sharpie and band-aids in her purse. I was that mom.

So when I was diagnosed with stage IV cancer I think it made everyone wonder: how could I have it all and lose it all? How could someone who seemed prepared for any obstacle fall so far? [To the point of near death.] What did she miss? Will I miss it too?

So when people ask if I had any missed symptoms, I eagerly share my story. But my story comes with an asterix** because my colorectal cancer symptoms were never bad enough that they raised a red flag. At least not one that I could see and certainly not my primary care doctor. My symptoms stumped me, my family and friends, a team of ER doctors, a GI doctor and a hematologist. Which is how I ended up laying in a CT machine on April 13, 2017 with the diagnosis of "Cancer of Unknown Primary."

Cancer of Unknown Primary is just what it sounds like. The doctors know you have cancer but don't know what kind it is or where it started. It means you are very sick. So sick that a doctor or team of doctors has taken to poking, prodding, scanning, testing and possibly even cutting you open to find out why you are so sick. Fortunately my cancer was found before we got to that last option and I did not end up in exploratory surgery. But in the weeks leading up until my diagnosis I had so many tests and treatments for symptoms of my unknown illness that my arms were purple and I had even asked my doctor for a picc line or port (something that is usually reserved for people with chronic illness).

There's an old adage: hindsight is 20/20. These words sting because I know there were symptoms that I missed and didn't understand. The only saving grace for me becomes the viral necessity to share my story in detail so that I may be part of the last cohort of young colorectal cancer patients to receive a late-stage diagnosis after being misdiagnosed. A retrospective reflection of missed signs leading up to my diagnosis provides clarity and insight that is vital to not repeating history. Please join my in this reflection and share my story to help end late-stage colorectal cancer diagnosis in young people.

In the year leading up to my diagnosis I was tired. No. Tired doesn't describe it. I was exhausted. I was still able to do the things I was obligated to do, but I was not doing anything extra. Some days I would get home from my daily classroom volunteering and just sit in my car in my garage, too tired to go into the house. I had lost interest in most of my hobbies or was too tired to do them but I was too embarrassed to tell anyone, I had been through a recent loss and thought I was just sad. If you feel so tired that you don't feel up to your usual hobbies or level of activity then tell your doctor. It could be mood related but it could also be a symptom of illness. If your doctor prescribes mood stabilizers without also giving you a physical, find a new doctor.

About a year before I was diagnosed I was on a run and collapsed. My doctor treated the bumps and bruises I got from that fall but did not look for why I collapsed. She prescribed more iron since I had suffered from iron deficiency anemia in the past. As the year went my iron deficiency anemia worsened, my doctor blamed this on "female problems" and did not look for the source of the anemia. She prescribed more iron. In the months before diagnosis I developed pica - the desire to eat ice or non-food items like paper or dirt. My doctor again prescribed more iron without looking for the source of the anemia. My anemia got so bad I needed an emergency blood transfusion - still, no one looked for why I had anemia. There is a recurring theme here. If you have a recurring deficiency: do not simply treat the symptoms, find the source of the deficiency.

Three months before I was diagnosed I had excruciating stomach pain followed by a white chalky bowel movement. I went to urgent care and they blamed it on the sugary coffee drink I had the day before. I had one of these drinks dozens of times before and I should have known to ask more, but I trusted my doctor. The stomach pain continued on and off for weeks. If you have unexplained sharp or long lasting stomach pain, do not dismiss it - your body is trying to tell you something.

I didn't notice at the time because the change was so gradual, but in hindsight I now remember that my bowel habits had changed over time. I was going more often, usually feeling unable to completely vacate my bowels. My stool itself had become dark and narrow. It wasn't black and tarry or bright red like expected with colorectal cancer, but it had changed. If your bowel habits change: in frequency, shape, diameter, color or if something just feels different this is something you should tell your doctor. In my perfect world, talking about bowel habits would become less taboo so that this symptom doesn't get missed. This is a major symptom that is missed by many because we don't talk about poop. Let's normalize potty talk.

Finally, I made the mistake of not knowing my family history. I had been asked countless times if I had a family history of colorectal cancer. I had a great-grandparent who did but that was not considered significant. What I didn't bother to find out is that both of my parents had a history of pre-cancerous polyps found during colonoscopy. If these polyps were not removed during a regular preventative colonoscopy, they could have developed into cancer. Not knowing this history caused me to be excluded from early colorectal cancer screening. Not all colorectal cancers are heredetary, but it is important to know your family's history of cancers and even polyps so that you can have a complete understanding of your risk.

In my case, it was the perfect storm of misunderstanding, not exploring symptoms, not knowing my risk factors, not pressing my doctor to look for the source of illness, or looking deeper myself. Colorectal cancer is 90% curable when caught early. In late stages, survival decreases. This is why early detection through regular screenings is essential. It is my hope that with increased awareness, my story can be the last like mine. Do me a favor and call your family members, find out your history. And at your next well check, talk to your doctor about your poop. It just might save your life.

- Jessica Buscho

Jessica Buscho goes hiking between chemo sessions

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