Thursday, March 19, 2009

"You have cancer." Now what? My Top 10 List.

“You have cancer.” Three little words. Those are the words I heard on April 29, 2005. It is almost like it happened yesterday. A doctor did a fine needle aspiration on one of the lymph nodes in my neck. She poked a long fine needle into one of my lymph nodes a few times, withdrew some fluid, left the room, came back a few minutes later, and repeated the procedure. When she came back three minutes later, she said, “You have cancer.” There it was, plain and simple. There was no “let’s run some more tests.” There was no “maybe” in her declaration. I had cancer. I soon learned that it was stage IV, the most severe.

I’ve learned a lot of lessons about cancer and treatment over the past four years. A “post” recently asked – what would you tell someone who just found out they had cancer? Here’s a list of things I would say:

1. Know your cancer. There are hundreds of different cancers. The American Cancer Society (“ACS”) lists 16 categories of cancer representing over 1.4 million new cases in 2008. Each type of cancer is different in the way it invades your body, the treatment options, and the prognosis. The more you know about your specific cancer, the better off you are in working with your medical team and making decisions about how to proceed. The Internet provides access to a wealth of information and resources.

2. Find the right cancer clinic. The ACS estimates that cancer caused 566,000 deaths in the U.S. last 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. Unfortunately, I have talked to too many women who were told “don’t worry” that lump is probably this or that (e.g., a clogged milk duct). Well, sometimes the doctors were wrong, and those women died. I like the motto: “Hope for the best, but prepare for the worst.” 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.

3. Find the right doctors within the cancer clinic. I switched oncologists within my cancer clinic after the first year. I lost faith in my original oncologist, so I decided 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.

4. 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 specialize 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.

5. 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. The best doctors don’t have the answers. They use their best judgment and if you are confident in your doctor, then you will have an easier time choosing the right paths.

6. 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.

7. 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. Phase II trials are still primarily experimental and will be limited to a few hundred people. Phase III trials are where it gets really interesting. 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 -- Zactima (ZD6474) -- has been under study for years. There are currently 77 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 70,000+ trials taking place in 163 countries. This is a great resource. There may be a clinical trial out there for you.

8. Understand your health insurance in depth. Read your health insurance document. Not just the guide, but the booklet. 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.

9. 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.

10. 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.


Anonymous said...

Thanks, Ed. I'm sure that list would be helpful to the newly diagnosed, and it also serves as a reminder to us seasoned warriors.


Anonymous said...

As always, a very helpful, thoughtful, actionnable analysis, with the intent of helping others along a road far-too-much traveled. Many people will - unfortunate in their circumstances - find your "Top 10" to be a valuable guide as they navigate the process, the medical community, the treatment options, the impact on their loved ones, and of course, the impact on themselves. Thanks for being a beacon, and so glad you're continuing to be "NED".

Fran from Pit

Anonymous said...

Thank you, Ed, for your Top 10 List. Given the grim cancer statistics, I expect to use your list at some time in my life. It is a shame, but you are the expert!
Thank you!

Megan said...

Hi Ed. From time to time I come across personal blogs that have a relation to Oral Cancer. I've read a few of your posts and notice that you were diagnosed with Oral Cancer 4 years ago. I didnt read if you are continuing to battle the cancer or if it has cleared, but either way I wish you the best. Im from The Oral Cancer Foundation. We have a forum on our website thats completly free and user-friendly. On this forum, we have over 7,000 people including doctors, patients, survivors, friends and family members. We're all one big family in spreading awareness and helping those in need of advice, support or just someone to talk to thats going through the same thing. I encourage you to sign-on and share your stories. I think that your stories could go a long way in helping someone else in need and you might even find something that will help you at the same time. If you ever need anything, we're here for you.