First steps to take if they tell you it's cancer

So You Have Cancer.
What's the Next Step?

    Most people are at sea when they get a cancer diagnosis. It's no wonder. Cancer is a completely life-changing experience.

    An avalanche of questions begins almost as soon as you're told you have it. Where should you go for treatment advice? Who should you trust? What can you even afford? What works? What's proven? What natural alternatives do you have? Glad you asked. I have a few ideas about where to go for answers. . .

Continued below. . .

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Is there such a thing as too much health responsibility?

    I started thinking about the question "What do you do first?" after seeing recent research on women with early-stage breast cancer. More than one in five felt they had too much responsibility for treatment-related decisions. The study also said those women were more likely to end up regretting the treatment choices they made.

    There are a couple issues at play here. First, there's our cultural hang-up where doctors are seen as gods and medical technology is miraculous, even though that's hardly the case. I'll concede that most doctors are truly committed to healing, and our medical technology is remarkable.

    But taking charge of your own health is still critical. No one's going to hold your hand and walk you through every possibility out there. At least, no one in the modern medical system. As nice as it might seem to hand off all the decision-making to an expert, that's just not an option with cancer.

    There's also the problem that money and power have too much influence within the medical system. So even if your doctor has the best intentions, he may have been courted (and bribed) for so long by Big Pharma that his perspective is distorted. I've written in these pages how many oncologists make most of their money from marking up the chemotherapy drugs, not from the actual services they provide.

    So the first thing to do is roll up your sleeves and start learning.

    After that, you need someone who advocates your right to choose your treatment. And then you need to put your treatment plan into action.

Here's what I recommend ...

    Now more than ever, doctors are able to tailor their treatment recommendations to individual patients. That's especially true of alternative treatments, where there's a dazzling variety of treatments that work.

    Just as there's no textbook cancer case, there's no such thing as a one-size-fits-all treatment. So here's what I recommend by way of cancer health literacy:

1. Make it your number one priority to get better. A cancer diagnosis isn't the time to play the blame-game with yourself, or anyone else. Just focus on healing.
2. Pick some trusted sources where you can learn more about the disease. If you start searching for cancer info on the Internet, you're bound to scare yourself into a panic that won't do a bit of good in the long run. I recommend our own website, first of all:www.CancerDefeated.com. Also good are www.CancerTutor.com, created by my friend Webster Kehr, and Bill Henderson's site, www.beating-cancer-gently.com. All three have large, searchable databases of valuable free information. I also recommend the nonprofit www.cancercontrolsociety.com.
3. Choose an advocate. And never see the doctor without your advocate. He or she is your best friend in your fight against cancer (even if you have to pay them!)Your main job is to get well. It takes a lot of energy to filter information and weigh the pros and cons of different treatment options. Rely on someone else to support you and help you navigate the complicated medical system. Your spouse or a close friend are good choices, or you might turn to a neighbor or even a paid advocate. Whomever you choose, make sure you're comfortable bringing this person to doctor's appointments with you.
4. If you don't feel up to making all the decisions, it's fine to choose the right medical provider for you and THEN give that person a lot of decision-making responsibility. But even then you have to choose the provider for yourself. And believe me, it had better be an informed choice — NOT the nearest conventional oncologist. Once you've found the right doctor, tell him or her how much responsibility you're comfortable taking. You'll have fewer regrets later on.
5. Get rid of whatever is causing stress in your life — and be ruthless about it. If you have a boss who thinks you should put in a 70-hour week or an adult child who won't grow up, now is the time to grow a backbone and tell them you have to put your own needs first. Period. As Ann Landers used to say, "No one can take advantage of you without your permission." This is a good time to stop carrying the whole world on your shoulders.
6. Learn the details of your diagnosis. Find out the specifics, like the size and location of your cancer. Then ask about treatment options. Don't hesitate to get a second opinion. Don't allow yourself to be rushed into chemotherapy or surgery. Frankly, cancer is rarely a rush where every day counts. You've got time to think things over and learn about your choices.
7. There's a world of difference between late-stage and early-stage cancer. When it comes to late-stage cancer, conventional treatments are a failure for most types of cancer and should be rejected. But for early-stage cancer, conventional chemotherapy, radiation and surgery have a decent success rate, at least with certain kinds of cancer. And of course mainstream medicine's got the published statistics — the proof, if you will -- to tell you how good your chances are. Don't be shy about asking your doctor to show you the survival stats and what you can expect for the treatment he urges on you. Remember, conventional doctors like to brag about being "evidence-based." So, demand the evidence — or just get online and look it up. In many cases, what they offer the late-stage patient is only a few more weeks or months of life, in horrible discomfort, at great expense. And even that's doubtful, because often the studies have been manipulated. I've talked to people in that situation who turned to alternatives and gained a lot more time (without the misery of chemo). And I've also talked to people who got completely well.
8. I have confidence in alternative treatments and they would be my first choice. For late-stage cancer, alternative medicine is the ONLY option as far as I'm concerned. But just be aware that no one can give you the Las Vegas odds on whether an alternative treatment is going to work. Nobody can tell you whether 10%, 30% or 80% of patients with "X" type of cancer survive more than five years. The evidence is mostly based on case studies — anecdotes. As I've written before, a reasonable choice is to have conventional surgery first, to get rid of most of the tumor, but then choose alternatives rather than accept the chemo that your doctors will almost surely push on you.
9. If you decide on conventional cancer treatment, at least choose an oncologist you feel comfortable with. Someone who listens to your concerns and answers your questions in detail.
10. Pace yourself. A cancer diagnosis might mean your energy level takes a hit, so be prepared to rest more and cut back on tasks that keep you constantly busy. I recommend a daily nap. Reach out to family and friends. Plenty of studies correlate survival with social contacts. Even a pet can help. You know the saying, "If you want a friend, get a dog."

"Cancer concierge"

    The good news is we're starting to see models for cancer health literacy cropping up to help sufferers, like the nonprofit service called Connect Inc. that opened recently in Wisconsin. The center is run by sisters Kimberly Demeny and Jennifer Hickey. Demeny's husband, sadly, passed away from a brain tumor.

    The service had been the long-time vision of Demeny, her husband, and their friends and family. The goal is to teach people in their area about available cancer resources so they can make informed decisions about their treatment plans and future quality of life.

    The organization helps new patients better understand their cancer diagnosis as well as what treatment options are available. They also provide information about clinical trial results, care standards, second opinions, support groups, and therapy options.

    The center even helps cancer patients find help with things like childcare and pet care services, along with incidentals like house cleaning, food delivery, and lawn care. They even locate palliative and hospice care providers when needed.

Bottom line: You're in charge

    Never just meekly submit to what your conventional doctor tells you to do. It's a good idea to inform yourself BEFORE you find out you're sick and go into a panic. Weigh your options with a cool head, ahead of time.

    I started this newsletter to inform people about alternatives that few doctors know about — conventional OR alternative. I've seen too many of my own loved ones suffer from cancer, and I want to make sure anybody else facing the disease knows about all the promising options out there.

    Just remember, it's up to you to be responsible for your own healthcare decisions. It doesn't matter how much money you make, how many years in school you finished, or what you've done with past health decisions. You deserve to have just as much say in your own cancer treatment as any medical professional.