A Comprehensive Approach to Quality of Life with Cancer

A little-noticed study was published at the beginning of March about improving the quality of life of people with cancer. In the Journal of Clinical Oncology, Dr. Teresa Rummans of the Mayo Clinic College of Medicine, described a study which addressed quality of life in patients with advanced cancer undergoing radiation therapy. One group received standard medical care. Their quality of life scores dropped by 9% during the eight week study, while those who received the intervention increased by 3 points. That may not seem like a lot, but when you're dealing with advanced cancer, increasing your quality of life by 11% is a big deal!

The intervention addressed lifestyle (appropriate exercise and nutrition), stress management training, assertiveness skills, coping skills and goal setting. It even dealt with spiritual issues like religious beliefs and feelings of guilt, loss and hope. The researchers encouraged patients to process their feelings in the social group and in a journal.

A whole person approach. What a concept! I'm surprised that the study addressed spiritual issues along with the physical and emotional. A lot of medical professionals shy away from this vital aspect of healing. But if you ignore the person's most deeply held beliefs, he is less able to make real progress in other areas of life, like relationships and lifestyle changes. I was glad to see it as part of the study.

The most significant reason that these interventions helped people, in my opinion, is that they returned a measure of control back to the cancer patients. People did not have to hide their strong feelings or their beliefs. They could bring them out and share them safely. They learned skills by which they could deal better with the out-of-control events in their lives. They learned assertiveness skills so they could say "no" to things they didn't want and ask for what they did want.

Cancer and treatment rob people of that most basic human dignity, a sense of being in charge of your own destiny. No one can truly control the events in his/her life. Wars, floods, hurricanes, cancer...They just happen to us. Learning the skills that allow you to bring that sense of being in charge of yourself back, makes a big difference in how well you cope with those events. It's long been known that it's not really what happens to an individual that matters. It's what she does with it. It's what you believe about it. Working through the emotions, and learning how to take back your power is huge. Then we can talk about quality of life.

Something that would have made the study more interesting would have been to add skills that help people look at the future with positive expectations. This is not to be confused with a "positive attitude", that's for a different day. The authors thought the benefit of the training was worth the $2000 price tag, even with the "patients' limited lifespans". (I suppose it would be self-serving to say that working with a coach is about half that amount.)

The important point is that the doctors unfortunately believed their predictions about their patients' "limited lifespans". They shouldn't. Even with advanced cancer, people sometimes recover. Others outlive their prognosis, even by years. Helping people address their goals and dreams in a right here, right now way is critical to helping them outlive their prognosis and achieve a better quality of life. Outliving the doctor's prognosis, by the way, is one of my favorite goals!

When you see people, don't think in terms of prognosis or probable life span. See the contributions they might make with the life that's left. When a person is really focused on their contribution to their community or the world, the disease has a harder time stopping them. I'm not saying it's some kind of miracle cure. No. But it's a real edge, small but real.

Being focused on your potential contribution to the world is an even bigger edge in terms of quality of life. When you are focused on doing things you love, things that matter to you, physical ills just can't slow you down as easily. That's a study I would love to see done! Learning about and implementing positive expectations. I believe the results would be nothing short of astonishing.

All the best,
Judith
http://www.cancer-coach.com/

Cancer Test Recommendations Revised!

It's about time this recommendation is being made! Everyone in this business knows that any cancer can spread to the brain, but especially breast, lung, kidney, colon cancers and melanoma. For years I've encouraged my clients with those cancers, to request an MRI of the brain no matter what stage their disease. Sometimes their docs said, "good idea," and ordered it. But too often their doctors would turn them down flat, saying it's "alarmist" and not "medically necessary". Some patients continued to insist on the scan, and a few of those were rewarded with finding brain metastesis early, when it's most treatable. The doctors involved said it was a lucky break.

This article ( "Doctors Push to Find Brain Cancer Earlier" MSNBc.com) cites 150,000 cases of metastatic brain tumors, most of which were found when symptoms occurred, not with screening. One-third of breast cancer patients will experience brain metastesis, but, according to the article, it's not routinely screened for in most institutions or by most oncologists.

This is yet another example of why patients need to be active in researching the characteristics of their disease, and active partners in their care. If you have breast cancer and you discover how often it spreads to the brain, you would be much more likely to have this discussion with your doctor and direct him to schedule testing for it. The information on where different types of cancers typically spread is on the ACS and NCI websites, along with many others. It's critical information for patients to have, and to act on.

Despite the new recommendation from the American College of Neurology, it will take a long time for it to be put into routine practice in many institutions. Until then, if you're a cancer patient or survivor, print this article and take it to your doctor. Insist that he/she schedule an MRI (CT isn't sensitive enough to pick up early lesions) as soon as possible, and make it part of your routine follow up. It could save your life!

All the best,
Judith
http://www.cancer-coach.com/

Welcome to Crab Fight!

Welcome to Crab Fight! My thoughts on fighting cancer. As the Cancer Coach, I see the suffering that cancer brings into families, knowing that their ignorance about cancer, doctors, treatment and so on is a serious block to their recovery and long-term survival. So many people put their faith and their lives into the hands of one well-meaning but sometimes less informed, doctor. Or nurse practitioner. Or PA. Few people know how to mount a serious challenge to this disease, or any other for that matter. More than eve today, knowledge is the power that can restore your health.

Why Crab Fight? It's the Zodiac thing. I know very little about the Zodiac, but I know cancer is the crab. Thus, the name.

Sometimes when I say I’m The Cancer Coach, people step back, draw away, as if they might catch this plague from me. People equate cancer with death, and automatically think I’m a Hospice counselor. Then I say "I don’t help people die. I help them live, live better and even longer lives!" They’re surprised. This is a new idea! "You’re a saint! Bless you for doing this work" they say as they edge away. Balderdash! I love what I do because I get to watch people go from frightened victims to confident survivors, taking on their lives with gusto. So much for sainthood!

My job is made necessary by the fragmentation and profit orientation of our medical system. Doctors, even specialists, are so busy seeing their managed-care-mandated patient quotas that they often can’t keep up with the burgeoning volume of medical information. Providers are caught in the squeeze and end up making compromises they may not even by consciously aware of. Drug company reps provide carefully slanted information that passes for medical education. Hospitals take a dim view of physicians who routinely refer patients out of their axis to the doctors and services that would help them the most. Chemotherapy and radiation oncology have become major profit producers which influences, if not determines, the treatment doctors recommend.

Most of the doctors and health care providers I know are good people, trying their level best to help their patients. And they are successful much of the time. Look at the new statistics that show, for the first time in 70 years, deaths from cancer declined in 2003. Not by much, but every one of one of those 370 people who survived are really glad about it. Of course, the drop in smoking may have helped a little. But the process is so fragmented and frightening that people are often emotionally as well as physically scarred. As a medical system we could be so much more effective against cancer, or any other disease, if we could create some roadmaps for people, if we could earnestly look at what and where the really best treatment is for them, instead of doing the knee-jerk treatment that's given at your hospital.

So that’s what my blog is about. My thoughts, frustrations, victories and everyday observations about cancer, patients and the medical universe that’s supposed to treat them. I hope you’ll look in from time to time and engage in some discussion. If I’m off base, tell me. If I’m right on, support me. For what it’s worth, let’s start.