Resources

National Cancer Institute
Comprehensive information on conventional medical options

Cancer Treatment Centers of America Where I went for my treatment. A place that can help you integrate state-of-the-art medical treatments with complementary therapies and mind-body techniques

Love, Medicine and Miracles
by Dr. Bernie Siegel
Great advice and inspiring stories from one of the pioneers in the field of mind-body medicine. Bernie Siegel found that it was the patient, as much as the disease, that determined the outcome, and he began helping people to be “exceptional cancer patients”—those who survived in spite of the odds.

If you are newly diagnosed...

 

A diagnosis of cancer is always life-changing. How do you begin this journey?

Here are some principles that can help you put together a plan:

1. Treat the whole person

The immune system is the key in dealing with cancer, and although we tend to talk about the immune system as if it were a single organ or system, it is really a complex interaction of many organs and systems in the body. Thus, no matter what the location of a particular tumor, cancer is a whole-body disease, and the treatment will be most effective if it addresses the whole body. And as researchers learn more about the mind and emotions and their interaction with the body—especially the immune system—they are discovering how much of a difference treating the whole person makes.

2. Assemble your team

When you are looking at the whole person (rather than just a lump of abnormal cells) you realize that healing really is a team effort. The members of the team are fourfold:

1. You and your body (including your mind and emotions).

2. Your doctors, therapists and all those who help with the various aspects of your healing. When you are treating the whole person, you probably won’t find a single individual who is an expert in all the areas you want to work on, from the spiritual to the emotional to the physical.

3. Your family and friends. People close to you can also be an important part of your team, and they can provide help and support emotionally, spiritually and even physically that doctors and hospitals are not able to provide.

4. The force of healing. Last, but by no means least, is the wonderful force that most of us take for granted. Whatever you call it, this spiritual force is the true source of healing. This force is the true head of your team in the spirit realm. However, on this plane, you are the head of your team.

3. You are the head of your team

You are the one who must make the final decisions. You can gather around you all kinds of experts and helpers, but in the end, the buck stops with you. This concept gives you a lot of freedom, but it also carries with it responsibility. Bernie Siegel found that cancer patients who are actively involved in deciding their course of treatment have better outcomes.

4. You have time to make choices

Before you make a decision about surgery or any other treatment, take the time that you need to research your cancer and your options for treatment. The decisions you make will have long-lasting effects—and you will be making them at a time of great stress. The good news is that there is time to confirm the diagnosis, seek expert opinion (or second one), and develop a plan.

Some people feel a sense of urgency. They want their old life back. There is a healthy sense of urgency, which is the instinct of self-preservation. You want to face the issue head on, not fall into denial or procrastination that would allow the disease to progress further.

However, there is an unhealthy sense of urgency, the slightly panicked feeling that would cause you to jump at the first “solution” that is offered. It is sometimes communicated by well-meaning family and friends or even well-intentioned medical and surgical teams, who want to “do something” to solve the problem.

While you don’t want to delay unnecessarily, don’t let the idea of acting quickly rule your life. You do have time to become fully informed and to develop a plan.

5. Talk to those involved in your care

When you visit the doctor or talk to anyone concerned with your treatment, be sure to take a pen and notepad. Ask questions and take notes, or even record the conversation (with their permission). Make a list of your questions ahead of time, even the really basic ones. It is surprising how hard it is to think when you are stressed, taking medication, or worried. It is equally hard even to remember what was said.

I also highly recommend having someone with you.  After the consultation, compare notes and write down additional points you remember.

Doctor’s visits are often stressful when the stakes are high. Even when your doctor is friendly and helpful, you are also aware that he or she is a busy person, and this can create a certain pressure in itself. In a single visit, you may get good or bad news in the form of test results, followed swiftly by the recommendation for the next phase of treatment. You have to take in this information, process it, and then ask questions, all in a matter of minutes. And you may be expected to make major decisions about your life as a result all of this input.

One thing that can help is to plan ahead. Think about the possible outcomes and your choices ahead of time. If the result of the biopsy indicates cancer, what will I ask? What if the results are negative? Write down both lists of questions and take them with you.

It can also be helpful to decouple the information-gathering from decision-making. Remember that you do not have to make a decision on the spot—it’s OK to take the time you need to think and pray about what you will do.

6. Do your research

Think about how much information you need to make your decisions and feel confident about your choices. For some people, too much detailed information can create a sense of being overwhelmed and make it more difficult to make decisions. For others (and I am in this category) too little information is stressful.

Trust your feelings about how much information you need to feel well-informed. And if you are in the first category, consider enlisting a close friend or family member as your “research assistant,” whose job will be to gather information, make sure nothing has been missed, and give you what you need to make your choices.

One word of caution: there is a bewildering array of options in alternative and complementary therapies, and it is easy to get confused very quickly. Don’t be overwhelmed. Do your research, but don’t feel that you have to follow every bit of advice that you receive. Be selective and choose what is right for you.

7. Get a second opinion

Even if you feel confident about the diagnosis, the treatment choices, and what you want to do, I would strongly recommend getting a second opinion, preferably from a specialist. It is money well spent, and many insurance programs will cover the full cost of a second opinion. Sometimes it can make a big difference. I have spoken to a number people with cancer who wish that they had gotten a second opinion before starting their treatment.

8. See the Experts

When I went to see experts, I found that  the conversation was at a higher level than with local doctors. I could tell that they had seen more cases, done more procedures, had more up-to-date information, and had more resources available to them. They were very familiar and comfortable with patients who had problems just like mine.

Find the most experienced people you can. But above all, find a surgeon or a doctor you can talk to and whom you trust. Your body and your life will be in their hands while you are in their care.

9. Keep a journal of your experiences and insights

Thoughts and impressions are often fleeting, and I found it was good to capture them as they occurred. I would often read what I had written some time before, and I could look back and see that I had indeed made progress.

I also wrote down what doctors and therapists said, as well as comments from friends and family, especially when what they said moved me. They did not always talk about my treatment or my case but shared many insights from their hearts, and I cherished these. Sometimes a comment or phrase would linger in my mind for a long time—like a talisman or a good luck charm.

10. Keep a notebook of cancer resources

I found this very useful during my treatment. My notebook had sections for resources about cancer, conventional medical information, and alternative therapies. People sent me kinds of information, phone numbers, articles, and helpful hints. As each item arrived, I read it and filed it in the appropriate section. That way options did not just float through my brain with nowhere to lodge. I knew what I had considered and what I had discarded as not workable for me. It gave me a sense of empowerment at a time when my moorings seemed to be shifting wildly.

11. Keep a notebook of your medical progress

I had a separate notebook to keep track of my medical history: blood tests, mammograms, scans and X-rays, scheduling of medical appointments, and notes on what the doctor or therapist said at each appointment. I asked for copies of my medical records and filed them also. I took this notebook with me to all my appointments, and it was especially helpful if I was getting a second opinion or seeing a new doctor or therapist. They can do a better job for you if they have all the information they need.

I also kept a chronology of the illness on a separate page in this notebook. I recorded dates of key events. It seemed that there were many times when I had to recount my medical history.

I kept a separate page on which I listed all the medications and supplements I was taking. Each time I entered the hospital, I had to list these, and it saved a lot of time and energy to have all the information in one place—especially when I was tired or stressed or my brain was not functioning as well as usual.

12. Join a support group

Studies show that women with breast cancer who belong to support groups survive longer.

There was no formal support group in my rural area when I went through cancer, but during my three months of radiation treatment away from home, I shared a house with a group of other patients. We attended exercise classes and programs at the hospital, went on excursions, and talked a lot about our experiences with cancer.

We also laughed a lot—at ourselves, at the illness, and at the common experiences that we shared. No one on the outside really knows what it is like to go through cancer, and I felt that a unique bond was formed through our going through this experience together. Some of us still keep in touch by phone and e-mail and even schedule our follow-up appointments at the same time so that we can see one another again. 

 

Excerpted from A Journey through Cancer, by Neroli Duffy