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? Whom 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. . .
I started thinking about the question “What do you do first?” after seeing 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. However, you need to consider all of the treatment possibilities before making your own informed decision.
Taking charge of your own health is critical.
How to take charge of your care
No one’s going to hold your hand and walk you through every treatment 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 for your right to choose your preferred 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 my advice by way of cancer health literacy:
- 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.
- Pick some trusted sources where you can learn more about cancer. If you start searching for cancer information 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 and the nonprofit www.cancercontrolsociety.org. (At the time of this writing, the Cancer Control Society website is under construction. However, there is contact information listed if you need access to specific resources that they can provide.)
- Choose an advocate. What’s more, 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—more on that in a minute. Whomever you choose, make sure you’re comfortable bringing this person to doctor’s appointments with you.
- Select your medical team carefully. 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.
- 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 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.
- 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 in almost every case.
- Understand 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 statistics and what you can expect from the treatment he’s prescribing 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 when their doctors said they wouldn’t.
- Trust the right alternative treatments. I have confidence in alternative treatments and they are my first choice in almost every case. 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 percent, 30 percent or 80 percent 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 chemotherapy or radiation that your doctors will almost surely push on you. 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 and is open to supportive alternative therapies.
- 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.”
- Consider a “cancer concierge.” If you don’t have a large support system, or even if you do, you might consider hiring a cancer concierge service. There are a number of these services available now with the goal to teach people about available cancer resources in their area so they can make informed decisions about their treatment plans and future quality of life. These organizations can help 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. They can even help cancer patients find assistance 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
Please don’t submit blindly to whatever your conventional doctor tells you to do. Do your research or have someone you trust help you do the research. That’s why 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. I pray you never need them.
- “Breast Cancer Treatment Decision-Making: Are We Asking Too Much of Patients?” Livaudais, Jennifer C., et al. Journal of General Internal Medicine, November 2012. http://link.springer.com/article/10.1007%2Fs11606-012-2274-3
- “Cancer diagnosis? Advice for dealing with what comes next.” By Edward T. Creagan, MD. Cancer: In-Depth, Mayo Clinic. http://www.mayoclinic.com/health/cancer-diagnosis/HQ00379/NSECTIONGROUP=2