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Julie Krause

Patient/Survivor Stage I Colon Cancer Illinois
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I was diagnosed with stage I colorectal cancer in 2010. In short order, I was stage IV, in March 2012.

Thank goodness this does not happen to most people.

My family history is heavy with relatives who had colorectal cancer (CRC). Both my granddads died of it in the 1950s; my maternal grandma died of CRC in 1981; and my mom was diagnosed stage III in 1992, although that was not her cause of death.

I am smart. I should have known better, but I waited until I was 50 for a colonoscopy. They found one 7mm polyp and told me not to worry: It looked fine. The biopsy came back positive but only on the surface of the polyp.

I was told this news over the phone while I was at work: not the way anyone should be told.

Back in the day, surgery was optional, not even a suggestion. I opted for surgery to remove that section of colon. The surgeon said everything looked good and not to worry. He would see me in two weeks to remove the stapes.

I went in to have the staples removed, and he told me one of the 20 nodes removed was positive, so he referred me to an oncologist. The oncologist told me I had an 80% of being cured just with the surgery but a 95% chance of survival with chemo.

I opted for 12 rounds of the oxi cocktail. I was so worried to make sure I got all of my chemo, so I’d be cured, I did 10 rounds at full strength and still have neuropathy to this day. Other side effects from treatment include pain, skin rashes, and increased stress or anxiety.

Fast forward through 14 years as a CRC patient: I have had seven cancer surgeries, chemo, RFA, SBRT, numerous broken bones (related to five years of chemo), a retinal detachment (related to five years of chemo), and most recently, in 2020, VATS.

My tumor biomarkers were tested, and I received the results, but I haven't done anything beyond that.

I have not participated in clinical trials since I am an oligometastatic patient and my team has successfully played whack a tumor.

It has been seven years since I have had chemo, and I am not sure I will do it again if I have another occurrence.

I believe that currently I am NED, although I have learned that does not mean much when you are stage IV.

My advice to someone who is afraid to seek colorectal cancer screening is that testing is a breeze. Prep for colonoscopies isn't "fun" but stage IV CRC is by far worse!

My surgeon set the expectation for me that I should be able to work through chemo, and I did. For me that didn't allow time for a pity party. Staying busy, giving back, maintaining a positive attitude even if I needed medication to do it, avoiding isolation and being my own advocate. Lots of words of wisdom over 14 years from stronger patients than I'll ever be.

Seek second and third opinions.

Something every member of Congress needs to know is that every cancer patient has different needs. Patients need access to the best treatment that is available, where they live. Traveling to distant medical centers causes all kinds issues to both the patient and their families and increases disparities in treatment options for patients.

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