Coping with a Cancer Diagnosis

Those two words change your life in ways most people never imagine. Fortunately medicine is handling many forms of cancer better, and hopes of survival are genuine for an increasing number of cancer patients.

Cancer is a frightening disease because there are so many unknowns when you are diagnosed. How aggressive is it? Has it spread? Will it spread? These questions not only keep you up at night, they worry friends and family, who often don't know how to ask you where you stand in hopes of fighting the disease.

There is no set approach to fighting cancer. Every person with cancer must work with doctors to determine the best methods for treatment. If you are a caregiver for a cancer patient, as I have been several times now, it is your job to help people determine their best options, to listen and counsel them during stressful meetings with physicians and other medical professionals, and to be by the cancer patient's side during treatment itself. All of these challenges require focus and fortitude. It is best, therefore, to eliminate as many unknowns as possible, so you can get to the "knowns" and make good decisions.

Fear is your first major obstacle. In fact, fear may be the cancer patient and caregiver's worst enemy throughout diagnosis and treatment. Fear arrests your ability to think and respond rationally, to research and weigh information in hopes of determining the best course of action.

Fear is natural because cancer upsets just about everything in your life. Living through cancer means explaining the disease to yourself and many other people. Sometimes that's the worst part. Cancer takes over your identity, makes you feel part of a community to which you do not necessarily want to belong, and cancels many of your most precious plans. Just yesterday on a cancer discussion board I encountered a 20-year-old woman engaged to be married only to find out that she had ovarian cancer. Within a week or two of her diagnosis she had a hysterectomy and is scheduled for chemotherapy. Imagine the stress that news and those changes put on a young relationship. But they are not alone.

Cancer is everywhere, and people are learning how to seek support for themselves and others when it arrives.

The first point of support is, of course, the physicians and nurses with whom you work to decide a plan for treatment. It can be very helpful to research the background of the physician, hospital and medical organizations with whom you are about to engage on an unavoidable journey. Learning more about the doctor's background and philosophy as well as his or her record and reputation goes a long way in making you feel secure about recommendations for treatment. The medical community is often well documented online, for instance, where you can read about your doctor's training and associations.

All this information can be key to asking the right questions; not about their qualifications necessarily, but about what they know about treating cancer and what your options are. Cancer research is proceeding at such a fast pace that doctors are required to keep up with changes in protocols and treatments almost by the week. Old practices can be reinvented, like intraperitoneal chemotherapy, a method of going after abdominal cancers. For a long time IP therapy was avoided because it was too rough on the patient, but with drugs to manage nausea and other side effects, IP treatment came back into vogue suddenly. There are many approaches to treating cancer and new methods coming along quicker than ever. Find out how your doctor interacts with the medical community at large. That's an indicator as to how current your treatments are.

Next you should look into the hospitals where you may receive treatment. Do they honor your insurance (if you have it) and do they have a team dedicated to your form of cancer. Some hospitals are better known for cancer treatment than others. This is not a "one size fits all" enterprise we're talking about. Of course we'd all like to go to the very best cancer treatment centers in the world, if that is our diagnosis, but you have to examine the practicality of getting there, and affording it. Blessedly there are many competent, progressive cancer treatment hospitals and organizations these days. Do your best to find people who have had experience with these resources, and ask questions. How were you treated? Were people kind and considerate? Did the physicians keep you informed? Were there any problems, and how were they handled?

Usually cancer treatment requires a team of physicians such as your family doctor working with a cancer specialist. For instance, there are doctors who focus on treating testicular, lung and breast cancer, but if you are an HMO patient you may need referrals from your family doctor to see these specialists. Even if your insurance has no limitations on who you see, you will still want to establish and maintain a team of your own to monitor advice, get second opinions and track how payments for your treatments are being submitted and covered.

Even if you have good insurance, you will pay something for cancer treatment, for sure. But people without insurance have options as well. Many hospitals have foundations that provide payment assistance or have financing plans to help you if money is an issue.

The hierarchy for payment treatment is confusing, and a little odd. A standard chemotherapy treatment can be billed out at $45,000, but an HMO negotiates that price down to $23,000 and you might receive a bill for $1,000. Your share goes against your deductible, and after those are met you might not pay a single dollar for the $45,000 treatment. Those kinds of numbers can be daunting, and it is perhaps time for the government and insurers to come to terms with the real costs of treatment rather than playing this enormous shell game with medical dollars.

As a cancer patient, you must try your best to avoid the confusion over cost for treatment and the whole vocabulary you must adopt to discuss it. Terms like "infusion" get thrown around all over the place, and the nurses who treat you have an obligation to help you understand what it is they are doing. This is an important touchpoint for answers, asking those administering the treatment to explain the near- and long-term effects of treatment. It is important to get as much information as you can and write it down so that you can ask questions or research the unknowns on your own time.

But don't feel too bad if at some point you just feel like turning off the information spigot. Cancer treatment is often mentally and physically tiring. It's all you can do just to get through it. Even caregivers get wiped out with fatigue and stress. Pick your spots when it comes to digging around about the disease. Ten minutes on the Internet can be pretty depressing if you hit the wrong bit of news for your head at the wrong time. Reading books can be helpful, but you need to be choosey there as well.

One of the best ways to help yourself get through cancer treatment is by talking to other people going through the same thing. These are the people who have direct experience and straight answers. The American Cancer Society hosts a tremendous online community for cancer survivors. It is called, not surprisingly, the Cancer Survivors Network, and if you have cancer or know someone who does, you can go to www.acscsn.org and communicate with people who have experience, compassion and insight for your challenges.

You may also want to set up your own little network of supporters. There are at least two great ways to make things more efficient. Visit www.CaringBridge.org to set up a free online news blog that allows people to track how your treatments are going. This is a good way to distribute general or even specific news to those you trust.

For real time help and assistance with things like meals, rides and other vitals, consider a Share the Care Network. You can find out how to do this at www.SharetheCare.org. This site teaches the people around you how to help you.

These resources can hopefully make the experience of fighting cancer more manageable and secure. The fears and challenges are real, and many people learn that their faith community and friends are absolutely vital to maintaining hope in the face of one of life's most daunting realities, our own mortality.

There are millions of people who beat cancer every year. Knowing yourself and your resources improves your odds for survival. The amazing thing that many cancer survivors say is that the experience of fighting the disease makes them a better person. There is a lesson in that for those of us who take life and health for granted.