By Elaine L. Orr
In 2014, I wrote a tribute to my cousin, Linda Woltkamp, who died after a stage 4 colon cancer diagnosis. She fought it for years. Her lack of preventive scans is one reason I fought so hard for a three-year scan (instead of a doctor-preferred five years) in 2023. My two very aggressive tumors were caught at the colon wall (Stage 2A, not in lymph nodes) and do not appear to have metastasized.
Colonoscopies are not high on anyone's list of a fun way to spend two days, but I had six in eighteen years because I find them preferable to dying. Two times precancerous polyps were removed, including three years before my two fast-growing tumors presented themselves.
I do not usually write about such personal matters, but my cousin and I present such stark contrasts it seems worth the exposure. She was a responsible person and a heck of a lot of fun. She just didn't want to get a colonoscopy. (The photo at right shows us in 1987 with family members, in Anaheim during a Disney visit. Linda is on the left.)
I have a few suggestions, which should not be taken as medical advice.
1) Know when to get your first screening. The recommended age is now 45 for people with an average risk. If there are no polyps, people can usually wait ten years for the next one. Talk to a doctor if you have a close relative who has had it (parent or sibling, for example). You will need one earlier. Note I said need. Don't let anyone talk you out of it.
2) If you have any of the common symptoms, see a doctor soon. Colon cancer is striking more people younger than fifty and even some in their twenties, though the latter is uncommon.
3) Talk to your doctor about whether non-invasive testing is sufficient for now. Such tests look not only for blood in your stood but also things such as DNA mutations or certain proteins. (It depends on the test.) The big HOWEVER is that these tests detect cancer. Colonoscopies can prevent it by removing polyps.
4) Consider genetic testing if you have a close relative (or even cousins or a grandparent). However, colon cancer, like breast cancer, can strike if there is no history. History can be a warning sign, and genetic information can guide physicians - and you.
5) Be a strong advocate for yourself. Because of an insurance 'fight' between Blue Cross and a clinic, I could not go to my usual GI doctor for the procedure three years after finding the precancerous polyp. I could only have testing at a school of medicine. Good people, but if I had taken their five-year advice, I probably would have been Stage 4 instead of 2A. I had to argue three times to get the test at three years.
People don't read long articles, so I'm not giving common information such as symptoms. Look it up.
The medical school GI staff did not give my (stunned) husband and me info on colon cancer after giving us the news and sending us on our way. None, never. I got a bit when I saw a surgeon about ten days later (and he did a great surgery).
I found a definitive guide for patients from The National Comprehensive Cancer Network. They have guides for many cancers, which are are impartial, comprehensive, and regularly updated. Having this guide kept me from searching for 'everything' on the Internet. You can't become an expert, and why should you? It does help to know the vocabulary and have a broad perspective.
Finally, my CT and PET scans have been negative and my post-surgery colonoscopy is in 10 days. (I don't like being this personal!) You could say I'm lucky or stubborn. Either works. Just get your preventive screenings.
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