An "Uncommon" Cancer A "Common" Mistake - A Letter to Physician Colleagues

Dear Friends and Colleagues

An “Uncommon” Cancer?

Many of you, like me thought of Carcinoid as one of those Zebras about which you would learn only enough to answer the single question on the your board exam (if there even was a single question). You could then forget about it because you would probably never ever see a patient with this rare condition.

As a Family Physician I see common things all the time. I pride myself in my ability to (with the help of many of you) diagnose and manage simple and complex cases. My wife Catherine at age 50 had several years of intermittent mild asthma, reflux and eventually “menopausal” flushing. In fact, these symptoms were caused by carcinoid cancer and its metastatic effects known as Carcinoid Syndrome. Her diagnosis was confirmed several weeks later by removal of a neuroendocrine tumor from her appendix in December 2005.

You can imagine my disappointment. NETs often mimic other conditions and even when suspected are difficult to diagnose. Standard imaging studies with CT, MRI and even PET scans fail to reveal these elusive cancers. Even when suspected, specific testing for carcinoid such as Octreotide scans and serotonin remain normal. I began looking for telltale signs of neuroendocrine tumors. Unfortunately, there is no cure for Carcinoid. I now know that approximately a quarter of a million Americans have carcinoid or a related neuroendocrine tumor (NET). Tragically, it is estimated that about half of this number, or 125,000 Americans, have not been diagnosed.

Neuroendocrine cancers are not rare; they are unknown.

As a result of my personal experience I am now determined to:
1. Increase Awareness in the Medical Community: Often doctors are insufficiently aware of NET/carcinoid symptoms to consider the diagnosis and make referrals. Accurate knowledge is the key to optimal treatment. Even with accurate diagnosis at this time there is no cure. Fortunately, many individuals have an indolent clinical course for years making the diagnosis even more elusive. Some NET /Atypical carcinoid cancers behave like small cell cancers and even with optimal managment have a dismal prognosis.
2. Fundraising: blackwoodcaring.com is our family website. This diarizes our journey as a family and offers a template for increasing awareness through this site is fast, simple, and secure. Because neuroendocrine cancers share molecular features of pancreatic, lung, and other cancers, as well as diabetes, your donation has the potential to help millions of people in North America alone, and tens of millions worldwide. You can read about more ways to participate on our sunflower and triathlon pages.
3. Research: The Caring for Carcinoid Foundation is unique in its focus on research. We pursue a clearly defined, 3-step research road map based on guidance from our Board of Scientific Advisors. The scientists we support are already making progress. However, we urgently need your help to expedite and expand the research. Carcinoid patients struggle and die every day because no cure exists. We know the lonely feeling of fighting an incurable cancer that receives little governmental research funding and little pharmaceutical company interest. We also know that greater insight into carcinoid cancer will result in greater insight into other cancers such as neuroendocrine, endocrine, gastrointestinal, and prostate. There is much to be optimistic about. The first scientific blog gives us much to be thankful for progress already made. The author is one of the foremost carcinoid researchers working in Boston at the Dana Farber Cancer Institute.


Please join me in this fight. June 1st, I will be participating in the Breezy Point Triathlon along with Catherine and all of our 10 children. Many other Triathletes are also joining us is this cause. For most of our family members, this will be our first Triathlon but it will not be our last. It marks the beginning of a long intense struggle as well a focal point for awareness. I am competing to complete. Although all of us dream of winning a more realistic goal is to finish. This is also true of Catherine’s fight with Carcinoid and gives us a tangible way of identifying with her - and many others with NETs - as we struggle with our own minds and bodies. As we train for this race, our dedication to finish is both a symbol and a challenge.


All donations go directly support carcinoid cancer research and are tax-deductible. Together, we will achieve our mission. Thank you for your dedication and generosity. The good news is that carcinoid, along with other cancers, is curable. Recent breakthroughs in science have made what has always seemed a mere dream – discovering a cure for cancer - an achievable goal. In 2003 the National Cancer Institute (NCI) set as its goal to cure suffering and death related to cancer by 2015.


I am deeply indebted to many of you who have over the last 14 years since I moved from Canada to Virginia provided excellent care and support to many, many of my patients. I am deeply grateful for your care for all, but especially to those of you who are involved in Catherine’s care.


Yours sincerely,


Robb Blackwood MD