Friday, November 11, 2011

"You have cancer." What now? My Top 12 List (updated).

Two and a half years ago on March 19 2009 I wrote a similar blog entry. A link to that entry is at the bottom of this post. There is a revolution (see number 7 of 12 below) taking place in the world of cancer prevention, detection, and treatment. If you or someone close to you was recently diagnosed with cancer or are currently undergoing treatment, this list is for you. I've written about all of these topics before, but so much research and translational science work is coalescing, it felt like time for an update.

1. Know your cancer. The American Cancer Society (ACS) published a 68 page PDF containing a wealth of cancer information covering the year 2010. They estimated that there will be over 1.5 million new cancer cases diagnosed and almost 600,000 deaths (1,500 per day) in 2010. There is a marked increase in the 5 year survival rate when comparing a period in the mid 1970s (50%) to a period in early 2000 (68%). The document highlights 15 different types of cancers (many with multiple sub-types) listed along with cancers stratified along geographic, demographic, race, and ethic backgrounds. The document then delves into specific cancers. The more you know about your cancer, the better off you are in working with your medical team and making decisions about how to proceed. This document published by the ACS is a great starting point.

2. Use the Internet. This is such a powerful tool to research your specific cancer and discover the resources available. My focus is on head and neck cancer. So, by way of example, I've found the following web resources. 1) SOPHNC - Support for People with Head and Neck Cancer ( They have 108 support chapters throughout the US, many of which meet at least once a month. They also have the National Survivor Volunteer Network (NSVN) which matches patients and caregivers going through treatment with people who have already gone through similar ordeals. 2) The Oral Cancer Foundation ( This is a non-profit entity designed to reduce suffering and save lives through prevention, education, research, advocacy, and patient support activities. 3) The Head and Neck Cancer Alliance ( This was formerly known as the Yul Brenner Head and Neck Cancer Foundation. Much of their effort goes into prevention and fund raising.

Most of these sites have Newsletters on up to date treatment breakthroughs, patient and caregiver forums, activities on how to become involved, and fund raising. For head and neck cancer, this list just touches the surface; there are dozens of other reputable sites (e.g.,,, Although I haven't focused my attention on other cancer types, I suspect that more pervasive cancers have an even greater treasure trove of support and information resources available.

3. Find the right cancer clinic. Cancer will kill over 600,000 people in the US this year. That is more than one death per minute, 24 hours per day, 365 days per year. Cancer doesn't take off for weekends or holidays. Finding the right clinic can help save your life. In my journey I've met enough people who either said, if I hadn't come here (referring to their current cancer center), I'd be dead now. On the other hand, I’ve known people who have passed away, in some cases unnecessarily, because they waited too long to find the right cancer treatment clinic. You want a cancer clinic that specializes in your type of cancer. Many clinics are fully prepared and qualified for plan A, but if plan A doesn't work, they are not going to be able to perform plan B. Plan B for them is referring you to a larger, better equipped center. For me, I’d rather start off with a clinic that can perform plan A, B, C, and D.

4. Find the right doctor(s) within the cancer clinic. I switched one of my doctors within my cancer clinic after the first year. I lost faith in my original doctor, so I asked to switch doctors. This is your life, and you should feel confident in the treatment prescribed. There are many options, and being an informed patient will help in choosing a path that is right for you.

5. Treat your core set of doctors as a team. Cancer is so complicated, one doctor is not enough. To be great, doctors specialize. In my case, the core team included an oncologist, surgeon, radiologist, and their physician assistants. They have been supplemented at times with other doctors who specialized in pain management, psychology, and other areas. You should understand how your doctors collaborate. For me, I liked knowing that each week my doctors gathered to talk about each patient, their treatments, progress, and next steps.

6. Understand your treatment and options. This means their probable success, timing, and life altering outcomes. Cancer is treated in slang terms as slash (surgery), burn (radiation), and poison (chemotherapy). These terms were not arrived at lightly. Many cancer treatments are as much art as science. Even the best doctors don’t have all the answers and field is constantly changing. They use their best judgment and if you are confident in your doctor, then you will have an easier time choosing the right paths.

7. Consider genetic testing. This is where the revolution is taking place and it may save your life. If your cancer center doesn't offer a genetic testing service consider a different cancer center or an independent testing laboratory. There are now many therapies which target specific genetic mutations. A great example of this is the EML4-ALK mutation in lung cancer. I've written about this before and you can search my blog or the Internet for more information on this specific mutation. The discovery of this mutation and the drug, Crizotinib, which has thrown a life line to about 7,000 lung cancer patients per year in the US is a remarkable success story for select patients, researchers, physicians, and pharmaceutical companies. In addition, Vanderbilt-Ingram Cancer Center has created a public database named My Cancer Genome at which currently lists six cancers including breast, lung, prostate, and melanoma where genetic mutations have been identified and based on a specific mutation, therapies have been shown to be effective in treating that mutation for that cancer. This whole field is causing an explosion of paradigm shifts within cancer centers, pharmaceutical companies, and even in the basic building blocks for how cancer is viewed. I'll touch on each of these areas briefly.

Cancer centers - MD Anderson Cancer Center recently announced the establishment of the Center for Targeted Therapies (CTT). See reference. The CTT's mission begins with hypothesis-driven research that identifies and validates targets; continues with the discovery, development and design of biological therapies and drug agents; and is followed by pre-clinical and clinical trials – with each step working toward the goal of personalized medicine. In an ASCO presentation last June, MD Anderson announced a goal of genetically testing each of their 30,000 patients annually within 5 years. In another example, the University of Pittsburgh Medical Center (UPMC ) recently announced that it will invest nearly $300 million to create the Center for Innovative Science, a research facility that aims to revolutionize the way treatments are designed for individual patients.

Pharmaceutical companies - Using Pfizer as an example, they created the drug Crizotinib for the treatment of the EML4-ALK mutation. Although this only addresses a small subset (4%) of people with non-small cell lung cancer, they made the investment and were successful in gaining fast track FDA approval for this drug on August 26 2011. In addition, Abbott Labs won speedy FDA approval for a test for this mutation. What is remarkable about this is the pharmaceutical company's recognition of the importance of how genetic findings will drive treatment approaches in the future. When one compares this to a drug like Lipitor, a cholesterol lowering medication and another Pfizer product having over five billion dollars in sales in 2010, it is this paradigm shift which is pushing even the largest drug companies to pursue drugs with relative small target populations. As a side note, a number of pharmaceutical companies offer assistance to those who can not afford an expensive chemotherapy agent. Talk to your cancer clinics business or clinical trial area for more information on this topic.

Basic building blocks for how cancer is viewed - Today, when one talks about cancer, they talk about lung cancer or breast cancer or prostate cancer, etc. The paradigm shift taking place in this area is talk about genetic mutations transcending specific cancer types. The American Society of Clinical Oncologists (ASCO) published a document last month which gives weight to this shift in thinking. I wrote about ASCO's document in my last blog entry and as such will not repeat myself here, but I predict that this shift is coming and there are cancer centers like MD Anderson, UPMC and Vanderbilt-Ingram which are embracing this shift. Then, there are the others. What is your cancer center doing in this field?

8. Understand clinical trials. Clinical trials are typically categorized as I, II, III, or IV. In a Phase I trial, the researchers are generally looking at the toxicity impacts on the human body. These trials are generally small with 10 or less humans. Phase II begins to assess drug efficacy. There may be varying dosages within a Phase II trial looking for the magic bullet and right balance between dosage and efficacy. Phase II trials are still primarily experimental and will be limited to a few hundred people. Phase III trials are where it goes mainstream. The research has proven that the drug can be tolerated (Phase I) and it has shown some promise (Phase II). A drug in a Phase III trial could include 1,000s of people across many different medical institutions and countries. They can take years to complete. One drug I’ve been interested in -- Crizotinib -- has been under study for about 4 years. There are currently 21 trials listed for this drug with a status of active, recruiting, terminated, or completed. Clinical trials have very specific inclusion and exclusion criteria. The website allows you to search among its 116,000+ trials taking place in 178 countries. This is a great resource. There may be a clinical trial out there for you.

9. Learn to live with uncertainty. As mentioned, for many cancers, treatment is as much art as science. It can take months for chemotherapy drugs to work or not work. It can be months between major tests. Some surgeries will require the surgeon to keep cutting until they find clean margins. They may not be able to tell you beforehand how much permanent damage there will be, how long the recovery time may take, or even if the surgery will be successful. I remember waking up after a major surgery. In the recovery room, the doctor was talking to the patient in the bed next to mine. He said, “I’m sorry, but the cancer has fully taken over several vertebrae and we were not able to remove it.” I could tell it had been a long, complicated surgery. I couldn’t see the patient as there was a curtain between us, but I could tell that the prognosis was bleak.

10. Understand your health insurance in depth. Read your health insurance document. Not just the guide, but the entire plan document. There are a lot of areas that become gray to one’s insurance company when the bills start coming in. What looked like a no brainer suddenly becomes a major issue. My insurance company has been reasonable, but not without a few major fights. Know your rights, stick up for them, and use the appeal process if you feel your rights have been violated. For those who have been paying insurance premiums for many years, it is an obligation (contract) for the insurance company to support your needs should they arise.

11. Take charge of the cancer. To the extent possible, don’t let the cancer control your life. There are drugs and therapies that can help you manage chronic, acute, and psychological pain and issues. Take advantage of these resources and make the most out of your current situation.

12. Understand the impact of your cancer on family and friends. Cancer can create stress in relationships. It can also create bonds. Sometimes cancer impacts close family and friends more so than the cancer patient. It has certainly impacted some of my relationships -- some for the better, and some for the worse. This impact can be more powerful than the cancer itself.

I hope sharing this information is helpful. If you would like to comment or add to the discussion, please post a comment. If you have ideas for other discussions or topics, please let me know.


"You have cancer." What now? My top 10 list (from March 19 2009)

ACS 2010 Statistics

MD Anderson Center for Targeted Therapies

UPMC Announcement

FDA Crizotinib Approval

Abbott Labs ALK mutation test

Lipitor sales information

1 comment:

Lucy Richardson said...

Thank you for sharing your story with the world, Ed. Your posts are not only knowledgeable and creative, they are helpful and thought provoking.... I work in the communications office at MD Anderson. I would love the opportunity to speak with you about potential collaborations. If you are interested please email me at Thank you.