What I Wish I Had Known About Colon Cancer Before My Diagnosis

PATIENT EXPERT
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Colon cancer is on the rise in people under the typical age of 50 despite the fact that it is the most beatable, treatable, and preventable cancer. According to MD Anderson Cancer Center, cases of colon cancer are expected to increase by 90 percent in patients aged 35 and younger. When I was diagnosed with stage 3C colon cancer at age 39, I was in total shock. There are many things I wish I had known before my diagnosis that could have made a huge difference for myself and my family.


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Family medical history is key in cancer monitoring

The internet has allowed everyone the opportunity to research their family history and find their roots, but many do not realize how important it is to know your family medical history as well. The National Cancer Institute (NCI) has a free online family medical history tool that can be used to record this information and even share it with others in your famiy. Knowing your history can help keep you healthy.


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Rapid weight loss can be a sign of colon cancer

Losing weight typically takes work and dedication. When I dropped a dress size in one month without really trying, I was thrilled! Over the next three months I dropped another three dress sizes, and again, was thrilled to be weighing less than I did in high school. What I did not know was that my rapid weight loss was a sign that there was something seriously wrong. The tumor that was growing in my ascending colon was hijacking all the calories and nutrients I was taking in.


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Bleeding is not normal

One thing no one really wants to do is look in the toilet bowl after they've used it. We were not raised to look at what our body rids itself of, especially not bowel movements. If I had paid better attention to what my body was trying to tell me, I would have realized that the black bowel movements were that color because there was blood in my stool. It was yet another sign that my body was trying to tell me that things were just not right.


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Fatigue so intense I was always tired

I was tired all the time. I couldn’t even walk up the steps to my bedroom without having to sit, rest, and catch my breath. No amount of sleep got rid of the amount of fatigue I experienced. Unbeknownst to me, that type of fatigue was due to internal blood loss and/or the cancer cells using up all of my energy. It is easy to shrug off any concerns and make excuses due to work, family, and personal obligations.


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You aren't too young for colon cancer

Being in my 30s, I found that the doctors I saw all had different thoughts about what I was dealing with. I was told I had IBS, had an iron deficiency, and my all time favorite – that I had endometriosis. Ten years ago, no one thought to send me for a colonoscopy, and it certainly did not cross their minds that I could possibly have colon cancer. I was too young. Colorectal cancer is on the rise in those under the typical age of 50. Make sure you educate yourself and your doctors.


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Don’t be afraid to advocate for your health

When I left the hospital, I was given a list of doctors that had been assigned to me. I never thought to do research and find the best oncologist and GI doctors. In addition, whatever they told me, I never questioned. When I did start to question things, I was told that I was overreacting! Don’t be afraid to question your doctors, challenge them, and even get a second opinion. Read the book When Doctors Don’t Listen by Leana Wen, M.D., for great information about how to avoid a misdiagnosis.


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Lynch Sydrome's relationship to colon cancer

Lynch Syndrome is a genetic condition that puts you at a greater risk of developing colorectal cancer, endometrial cancer, and various other types of aggressive cancers, often at a very young age. I was five years out of my diagnosis before I learned about this genetic disorder and spent the next five years arguing with my oncologist to let me get tested. You need to know that if you are diagnosed at a young age, it's a test that your doctor should do right away.


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You are not alone

Being young and dealing with cancer brings with it unique issues. Things like dating, telling your young children about your diagnosis, and how to pay for college loans if you can’t work during treatment are just a few. Colon Talk is an online support group where young colorectal cancer patients can connect and be supported. It is a safe place to ask questions and find the help you need to get through a difficult time.


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Sharing your colorectal cancer story can save lives

The Colon Club publishes a yearly magazine called On The Rise that features survivors and caregivers who bravely share their stories. Another way to share your story is by using CaringBridge, a free online health journal. You can keep family and friends updated with your cancer journey so you don’t have to personally contact anyone or worry about having to tell the same story over and over.


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Resources and support are available for colon cancer patients

You don’t have to feel like you are lost when you or a loved one are diagnosed with colorectal cancer. Here are some great websites to visit that were not already mentioned:

  • Fight CRC – They offer support for patients, family members and their caregivers, and serve as a resource for colorectal cancer advocates, policymakers, medical professionals, and health care providers.
  • United Ostomy Association of America (UOAA) – A nonprofit organization that supports, empowers, and advocates for people who have had or who will have an ostomy.
  • American Cancer Society – Learn about cancer research, patient services, early detection, treatment, and education.