In July 1985, the media was abuzz with the breaking news of President Ronald Reagan’s colon cancer. The 74 year old Reagan’s malignant tumor was excised via bowel resection (colectomy) and he recovered well. Medical institutions sensibly took advantage of the hype and media exposure to raise public awareness of the signs and symptoms, causal factors, screening for and treatment of colorectal cancer. At the time, I resided on the charming little Caribbean island of Grand Turk, Turks and Caicos Islands with my wife Prudence and our baby son Myles (we are New Zealanders). I was 33 and working in a professional accounting capacity, so I was an expatriate yuppie, or I suppose yippie given the island location. As with most of my contemporaries, my interest in the President’s condition was essentially political, not medical. Our baby boomer generation had everything going for it and the broadcast and published causal factors for colorectal cancer, including lifestyle-related risk factors, were of only passing concern. But time is inexorable and now, almost thirty years later, about one in every twenty of us must contend with this life-threatening disease, the third most common cancer diagnosed in both men and women in the United States1.
If you have been diagnosed with colorectal cancer, then you and I are fellow travelers on this physiological, psychological, oncological journey. We’ve coped with the traumatic transition from BC (before cancer) to AD (after detection) and we’ve become acutely conscious of our own vulnerability and mortality. If you’ve only recently faced this transition, the objective of the short chapters that follow is to provide you and your family with a compendium of relevant information, perceptions and guidance from a patient’s perspective ahead of your medical treatment, to shorten your learning curve, reduce apprehension and anxiety and to help strengthen your resolve in dealing with this life changing condition. My medical journey has been a repetitive process of discovery, with the specifics of each treatment revealed only at the time of treatment; hence my motivation to produce a book to give newly diagnosed patients a prospective medical road map from the outset. If you are an experienced cancer survivor, I trust you’ll be able to relate to the content and will find it uplifting.
I was diagnosed with Stage IIIB rectal cancer in July 2004 at the age of 52. Having surpassed ten years as a cancer survivor, I was encouraged by my medical practitioners and others to relate my medical and philosophical journey to provide hope and purpose to fellow colorectal cancer survivors and their families, particularly newly diagnosed patients. An abdominoperineal (AP) resection was necessary in July 2004 due to the tumor’s low rectal position and I became an ostomate, permanently requiring a colostomy bag, which is an inconvenience I readily adjusted to physically and mentally. At the time, I was advised that the 5-year observed survival rate for Stage IIIB rectal cancer patients was 52%. The survival statistics are available on the Internet2 for those who are interested; I’m not, because I don’t consider myself to be a statistic. I have never asked a medical practitioner how many Auld Lang Syne’s it was thought I had left to sing and I’m looking forward to celebrating my 66 and 2/3rds birthday party in style.
Over the years, I have learnt that modern medicine treats the patient, not the condition and an unbelievably talented and dedicated medical team (see My Medical Team) has kept me ahead of the medical curve, despite the spread of my disease (distant metastases) and other setbacks. My cancer has been measurably responsive to each phase of treatment I have been fortunate to have received. I’ve been told I have ‘favorable biology’, so I’m lucky - you know, like Lucky the dog, with his tail and other bits missing and an abdomen that’s a checkerboard of surgical scars. Perhaps you also have favorable biology.
From 2004 to 2012 my medical journey required extensive travel from our home in Providenciales, Turks and Caicos Islands to Brisbane, Australia because oncology treatment was not available in the Islands and we had total family support in Brisbane; so it has been a journey measured in distance as well as in time. Fortunately, the opening of a new hospital in Providenciales led to the establishment of a fully equipped oncology clinic here in January 2012 (under the direction of visiting medical oncologists) and I have been receiving advanced oncology treatment in Providenciales since mid-2012. Consequently, arduous overseas travel is no longer necessary. I mention this because in the US your specialist oncology treatment is generally available in all of the main centers, so overseas travel for treatment will usually not be necessary.
I’ve discovered that purpose and humor and the joie de vivre that kept the BC man so buoyed still exist; it’s just that the AD man must consciously seek out these fundamental joys while bailing the lifeboat, on a sea of reflection.
Colorectal cancer patients cannot undertake this journey alone; we need the support of a principal caregiver (and there will be times when your principal caregiver will need support from family and friends and possibly also from medical professionals). For baby boomers, the principal caregiver is often their life-partner, but can be another family member or relative or friend or perhaps a health care provider from the health care system. Prudence is my very accomplished and supportive caregiver and apparently I ‘need a lot of supervision’. She has literally kept me going all these years, always available to assuage my more than occasional episodes of cantankerous behavior (fussing) with her immensely positive outlook and the patience of Edith Bunker3 .
You and your caregiver must become involved in every aspect of your medical treatment, from the outset. Your medical team will likely ultimately comprise an impressive list of practitioners including your (referring) general practitioner (GP), ER physicians, specialists such as surgeons, anesthetists, medical and radiation oncologists, radiologists, gastroenterologists, gynecologic oncologists, urologists, internists, pathologists, pharmacists, oncology specialist nurses, stomal nurses (enterostomal therapists), gastrointestinal (GI) ward nurses, surgical ward nurses, general ward nurses, laboratory, pharmaceutical, imaging and other medical technologists, physiotherapists, dieticians, hospital administrators and others. When necessary, you need to be able to specify to each of them your surgical and medical history, your current condition and any symptoms, as well as your currently prescribed medications and any allergies you may have, by accurately committing as much personal medical information to memory as possible and by having your medicines and recent medical scans and reports at hand (never turn up for imaging without all of your previous scans / film, with the accompanying radiologist reports).