"Blindsided by Cancer" article

http://www.cnn.com/2014/03/12/health/cancer-blindside/index.html

The entire article is below. I don't want it to disappear into the Internet graveyard. I wish I had read this article when I was first diagnosed.

Here is my experience on each of the main points:

Take a breath. I was lucky, diagnosed when I was off work due to the surgery. Shortly after my diagnosis a friend (since Jr. High School) came to visit. I was able to just blurt out everything I was thinking. It was a tremendous help to have someone who listened. We also had wonderful conversations about when we were young, which was a lovely distraction. Because I was away from the stress of my workplace, I was able to take a deep breath.


Own your cancer. I remember accepting the diagnosis fairly quickly. But I had trouble with the mets. I was convinced that the liver lesions were due to my use of NSAIDs for my arthritis. Frequently I stepped back and used my professional skills (My degree and credentials are in Health Information Management). I incorporated the gym routine into my weekly routine. I focused on what I could do. Years ago, I thought if I ever got cancer, I'd want it cut out of my body immediately. I was relieved when the hysterectomy took care of it. It's been interesting coping with the more recent cells that have betrayed my body.

Others have named their cancer, as a way of fighting it. I seem to understand that it is part of me, just like an inflamed boil, or ugly zit.

Don't run to the Internet. That's the first thing I did. My medical terminology course let me know how leiomyosarcoma broke down. But I didn't understand the difference between cancer and sarcomas... or how LMS was different. So I did the research. I stuck to the official sites. Avoided the quack cures (coffee enemas?? really?) I understand why the article says not to do that. That was also advice from my oncologist. -- Including don't look at the test results until she and I have discussed them. When we discuss the results, I leave with a plan. When I'm just reading the test results.... I don't know what will happen next.

In fact, that was some of the first advice my oncologist gave me.... Avoid searching the Internet about your cancer. She had a point. Because this is a rare sarcoma, the studies have relatively few subjects. Many of the studies are 5 to 15 years old. We've made progress in treatment since then. I can't compare myself to the others in the studies... they may be older, less healthy, diagnosed later. I do know I need to beat 14% at 5 years. The day I found that stat was discouraging... that was before my first appointment with the oncologist.

Select the right physician partners. I was very fortunate with this. I lived less than two miles from Moffitt Cancer Center. My gynecologist had a residency with my oncologist a few years before. After reading others' experiences with finding a sarcoma specialist, I'm grateful for this. And her team at Moffitt is amazing from the lab techs to the office staff to the nursing professionals and physicians.

Understand two critical features of your cancer. This was difficult for me. I wanted the cancer to not have metastasized. That changed the odds tremendously. At times I've given up for an hour or two, then redoubled my efforts with exercise or eating right. Most important to me was understanding that the cancer was there, and I'd be living with it for the rest of my life.



Now here's the original article..






No one is ever truly prepared to hear, "You have cancer" -- three little words that, despite impressive advances in treatment, immediately conjure up frightening images of hair loss, chronic nausea, surgery and even death.

But hearing "the C-word" is even more overwhelming when it is entirely unexpected, spoken to a seemingly healthy person. The unanticipated lesion on your mammogram. The unsuspected tumor on your routine colonoscopy. The surprise prostate nodule on your physical exam.

And it may become more common: The American Society of Clinical Oncologists predicted in a report released Tuesday that cancer will become the leading cause of death in the United States in 16 years, surpassing heart disease.


Dr. Peter Edelstein

For thousands of "healthy" individuals each year, the fears engendered by those three little words are accompanied by a horribly powerful shock.

So what do you do first when blindsided by cancer? Here, in order, are four initial actions and one inaction that will help you remain oriented and in control of your life.

Take a breath. Seriously. You are the same person today as you were yesterday when you didn't know you had cancer. You have no symptoms, so while possible, it is unlikely your cancer has spread throughout your body. You truly have time to get yourself together, your thoughts organized. Your cancer is not spreading with every passing second or even every passing day. Take a breath and then commit to the following four steps.

Own your cancer. This is the single most important step in addressing your cancer and your life.

You are in shock over the diagnosis. So many fears are swirling around in your head. You'll never be able to understand this complex, life-threatening disease. You are way past overwhelmed. The independent, successful, active, intelligent person you were just days ago (before you were a "cancer patient") has rapidly disintegrated. You must surrender yourself over to "the experts" -- the doctors and nurses and therapists. You must forfeit all involvement in your care.

No, you must not! Don't hand over control of decisions that will affect both the duration and quality of your life to experts, who are strangers, who know nothing about you the individual, you the person.

Don't give up ownership of your life. Continue owning your life by owning your cancer and accepting responsibility -- learning the limited number of critical facts about your malignancy, selecting physicians, actively participating in your care decisions. Own your cancer and remain in charge of your life.

Don't run to the Internet. In the midst of your initial shock and fear, the worst thing you can do is jump onto the World Wide Web. Not only are you emotionally volatile, you are not yet prepared to understand and interpret the prognostic and treatment statistics as they relate to your type and stage of malignant disease.

You likely don't yet possess the knowledge to differentiate credible from the layers of crazy "alternative therapy" websites floating through the ether. Don't worry. If you follow step two and truly own your cancer, you'll soon recognize trustworthy sites and successfully translate information into meaningful knowledge specific to you.

Select the right physician partners. Most newly diagnosed cancer patients are so overwhelmed they simply accept without question the surgeon, radiation oncologist and oncologist to whom they are referred. But who makes these referrals? Doctors who don't really know you refer you to other doctors who don't know you at all.

No one better than you and your loved ones understand your personality, style and approach to life (including life's challenges). You are far and away the most fit to select physicians who should partner with you in battling your disease.

It may be foreign to you, even intimidating, but you need to select your physician partners. Interview doctors. No, you won't have the knowledge to analyze deeply the appropriateness of their treatment recommendations (that's why you should interview more than one), but you're really listening for how they interact with you and your family.

Do they welcome questions? Are they interested in educating you? Do you feel rushed? Are they too serious? Not serious enough? To participate actively in your care, you need to select physician partners who are the best fit for you.

Understand two critical features of your cancer. Yes, you are smart enough to learn about the two critical features of your cancer, as guided by your physician partners and credible resources, and put that knowledge to good use.

First, you must learn how your specific type of cancer behaves, as each (breast, prostate, whatever) is unique. Second, you must understand your specific cancer stage. Staging differs by cancer type. However, common to all staging is objective evaluation of your tumor, of malignant spread (metastasis) to your lymph nodes, and of tumor metastasis to distant organs or structures.

Your specific cancer type and stage determine everything that matters to you: your chance of cure, potential treatments (and, therefore, associated risks and side effects), and your likelihood of recurrent cancer following treatment.

Yes, you were blindsided by your cancer. But you have the time and the smarts to make the right moves. Own your cancer.