Find Your People: Helpful Advice to Follow After a Colon Cancer Diagnosis
When the worst happens, the best thing you can do is find your people. What’s the worst? According to NIH National Cancer Research website, for over 1.8 million people in the United States during the year 2020, it would be a cancer diagnosis. For approximately 8 percent of those people, more specifically, it will be a diagnosis of colon cancer — a sneaky form of the disease that is often dismissed as irritable bowel syndrome or even just occasional bouts of constipation. Yet when or if you receive this diagnosis, you’re often overwhelmed with advice, well wishes and doctors’ visits, but now is the time to find your people.
Who are your people? As a fellow suffering from CRC (colon/rectal cancer), I am going to recommend you look for three specific groups to gather around you while undergoing your treatment.
FAMILY
This may seem obvious, but now is the time to gather your family near. Are you the independent sort? I know I was — even with an infant of 4 months in my arms at the time of diagnosis! I did not want to lean on anyone. Well, now’s the time to learn to accept support! Family can range from blood relatives to friends and are a necessary tool to help you navigate your diagnosis.
Take a family member with you to appointments. You may be overwhelmed with information and a second set of ears is always helpful. Use friends to vent your worries and frustrations to. Accept help when offered — whether it’s in the form of a casserole or a ride home from your treatment.
DOCTORS
Typically once you get a diagnosis, you will be seen by an oncologist and they’ll hopefully become an important member of your team, but don’t stop there. Unless you are being treated at a major medical center or a national cancer institute, there’s a key individual you may not see until much further into your diagnosis (or never) and that’s a qualified surgeon for your specific type of cancer.
You’re probably thinking, won’t my oncologist refer me immediately to a surgeon? Why tell me this?
Unfortunately in the colon cancer community, it is common for oncologists to decide whether or not a patient is operable. However, surgery isn’t their specialty. In the article, Surgery Ups Survival, So Why Are CRLM Not Referred for Resection, Kristin Jenkins delves into the issues surrounding oncologists not referring their patients to qualified surgeons for liver resections. She writes, “only 15% of patients with CRLM are referred for resection even though it is estimated that 30% could benefit.” While this article only discusses the liver, you can also see surgeons that specialize in other areas of the body such as the colon and the lungs.
This is a topic I feel passionate about as my oncologist told me point blank, multiple times, that I was inoperable. When I suggested a consult at a National Cancer Institute out of state, I was begrudgingly given a referral to a small local surgeon. While this surgeon was not confident about surgery, he gave me information about my condition that contradicted my oncologist. Therefore I chose to make an appointment with a world class surgeon at City of Hope on my own recognizance. This surgeon, Dr Yuman Fong, would go on to wholeheartedly agree to surgery after another set of scans were performed. I would have life preserving surgery three weeks later.
This happens time and again across this country — oncologists decide their patients are inoperable and do not refer them to surgeons. Or if they finally capitulate, the surgeon is not experienced in CRC and therefore tells the patient they are inoperable. If the individual then takes their case to a more experienced surgeon, sometimes surgery is granted. Even if not — and this is important to note as well- a good surgeon may give you options you did not know you have.
Please add an experienced CRC surgeon, or two, to your team at the time of diagnosis or shortly thereafter.
COMMUNITY
When you are gathering people around you for support, a key element that many people seem to lack is a support community, specifically the CRC community. Believe it or not — and I know this may be a hard pill to swallow, you are lucky. Colon cancer has some of the best online support groups available.
There are multiple communities to try out, but I would suggest you look towards those who push scientifically backed medical discourse and stay abreast of current developments. For myself, I found my community at COLONTOWN. Found within Facebook’s groups, COLONTOWN is over 140 private groups that discuss all aspects of CRC — from the different stages to clinical trials to groups specifically for the location of your tumors. While it was overwhelming when I first joined, COLONTOWN would give me the knowledge and the confidence to reach out to Dr Fong, the surgeon who performed my liver surgery. Without this community and the knowledge obtained from the experience of countless others, I would still be floundering in the midst of my diagnosis.
Colon cancer is, without a doubt, frightening and overwhelming. Yet you don’t need to walk this path alone. Reach out, gather your emotional and spiritual support around you, depend on your medical staff and use the power of the internet to gain more knowledge and advice to help you in your daily journey. There is a great power that comes from a good support system — and I hope you find it for yourself.
References:
Common Cancer Sites — Cancer Stat Facts. (n.d.). Retrieved September 08, 2020, from https://seer.cancer.gov/statfacts/html/common.html
Jenkins, K. (2020). Surgery Ups Survival, So Why Are CRLM Not Referred for Resection? Medscape. Retrieved September 7, 2020, from https://www.medscape.com/viewarticle/935145?fbclid=IwAR1zTt08P1eUBSi8KwrPj1anTyCVt6r3ty3Wy1hdFIxY5KxGTiCxhSh9emI
Welcome to COLONTOWN. (2020, January 21). Retrieved September 08, 2020, from https://colontown.org/
