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Sunday
Jan232011

Top Ten Lessons

September 1997 (en français)

Reprinted with permission from www.bcconnections.org

This article is a distillation of the lessons I have learned from hundreds of hours counseling dozens of breast cancer patients at the Community Breast Health Project (CBHP), in Palo Alto, CA. This is the best general advice I can offer anyone embarking on breast cancer decisions. I hope these lessons provide a starting point for more learning. I welcome your comments and suggestions.

[Note: as of 2008, CBHP is now Breast Cancer Connections]

1. Give yourself the time you need to make your decisions...

Most breast cancers take years to grow to the point where they are detectable. A newly diagnosed breast cancer patient can therefore be confident that three or four weeks of decision analysis should not jeopardize the effectiveness of whatever treatment is eventually selected--check with your doctor to be sure. Three or four weeks of decision analysis now may prevent years of suffering later, in cases where decisions are difficult or impossible to reverse and costly in their implementation. Too often, the people who are treating you rush you through decisions to schedule you for immediate appointments because that is convenient and profitable for them. Don't let anyone rush you, including yourself.

2. ...then get emotional support...

As painful as it may be for anyone to admit, the bottom line about breast cancer diagnosis and treatment is that, for the moment, no one knows what causes it, and no one knows how to cure it definitively. This unfortunate state of affairs leads to incredible variation in medical practices as doctors and patients strive to create the most appropriate strategy on a case-by-case basis. The people you consult may disagree on just about every facet of your breast cancer diagnosis and treatment. You almost surely will need support to stay afloat in this quagmire, much less to navigate. Joining a support group may be a good way for you to get the support you need. At a minimum, you need someone who will listen to your reactions, thoughts, and feelings. Recounting your experiences to someone you trust may help you separate the wheat from the chaff in terms of what makes sense to you and what doesn't.

Your personal and professional relationships are unique and will probably change as you deal with your breast cancer. People will react in surprising ways. You may find it worthwhile to get help in dealing with those relationships that are most important to you. Emotional support doesn't only come from support groups; it can come from family, friends, and colleagues. It can also come from groups you interact with as part of your religious practices or social interactions.

3. ...and make sense of the controversies to your satisfaction...

Not running into controversy in breast cancer may be a sign that you need to gather more information! Although the lack of consensus about how to treat breast cancer can be frightening, at least researchers, clinicians and patients are experimenting with new techniques and procedures, and generating "controversy." From their experiences and learning, you can strive to craft a strategy which you believe makes the most sense for you. But be prepared to make commitments: you will have to choose who and what to believe, and who and what to ignore. This may be difficult, for while no one has found a breast cancer treatment that dominates all others on every dimension, people do have favorites, and they tend to advocate them with passion. Each may appear convincing, even as they are contradictory. That's why you need time to analyze everything in a way that's comfortable for you. Aim to be comfortable and clear about the reasoning behind every breast cancer decision you make.

4. ... by managing your decisions like you manage other projects in your life...

Most of our clients at the Community Breast Health Project are accustomed to managing complex projects in their professional and personal lives. Often, the last thing they want to do is undertake responsibility for coordinating their breast cancer diagnosis and treatment decisions, on top of all their other burdens. However, no one else can scrutinize their decisions with the vigilance and self-knowledge that they bring to the task. If they do not act to ensure that their interests are served, someone with different interests will.

In general, unless you seize the decision-making reins, you are at risk of having someone act in your behalf without acting in your interest. Whatever your background or training, bring all your skills to bear on the task of managing your breast cancer "project." Your own established organizational and analytical skills will help you deal with all the controversies you may encounter in a way that's comfortable for you. If you're an inveterate list-maker, make lists. If you like to contemplate your other projects in solitude, make time to do that for this one, too. Approach your breast cancer project with as much confidence and strength as you can muster.

5. ...giving yourself permission to experiment and learn...

Very few decisions are "final" or irreversible. Many clients fret about decisions because they want to be absolutely sure they are doing the right thing before they act. In many cases, they fail to appreciate how much they may learn by trying some therapy. Some are worried that once they begin radiation, chemotherapy, tamoxifen, or hormone therapy (to name a few interruptible treatments) that they will not be allowed to stop. Those who feel supported and confident enough to approach some decisions as reversible experiments are often surprised at which therapies work well for them. However, some damage from side effects may already be done by the time they stop. Patients and doctors need to weigh that risk against the reward of discovering when an effective but frightening therapy is surprisingly tolerable.

6. ...recognizing that your preferences are unique and worthwhile...

While a broad range of information and alternatives are considered "acceptable" by people who deal with breast cancer patients, some of your caregivers may have difficulty accepting your preferences. Some will make presumptions about your preferences concerning your quality of life, your body image, your state of mind, and other things which they think they know better than you. As a decision analyst who has spent hundreds of hours helping people clarify their decisions, I have learned to respect and appreciate the infinite diversity of human preference. If you know what you like, be wary of people treating you as if you like--or should like--something else.

You may not always know what you like, and in that case, consulting yourself, or even others, may make sense. The experience of breast cancer often leads people to change the way they lead their lives because they realize what is really important to them. In my experiences helping breast cancer patients struggle with their decisions, the greatest source of frustration to me has been how other participants make presumptions about what the patient "must" want.

7. ...remaining vigilant about ignorance and backwardness even among people who appear professional and qualified...

You may tend to be more or less critical about people depending on their demeanor, attire, titles, and other superficial indicators. In a high-stakes situation such as breast cancer, you may want to rely on more critical methods for evaluating whether someone is an appropriate partner for you as you make your decisions. My approach, developed at Stanford University, intervenes with doctors and patients to help them orient their interaction as a teaching and learning partnership. We have been successful in helping CBHP clients prepare for upcoming consultations with surgeons, oncologists, and providers of complementary therapies.

In this limited space, the best advice I can give is that you may want to pay attention to whether the experts you consult are oriented towards teaching and learning. Such people will distinguish themselves by listening to and questioning you until they can summarize what is on your mind, and they will check with you that they have understood you before they make further observations or recommendations.

8. ...delegating tasks to people you trust...

Apart from the emotional support that you may find sustaining--and regardless of what your usual management style involves--you may want to delegate some of the overwhelming amount of work that your breast cancer project generates. Breast cancer patients often can find friends to whom they can delegate logistical tasks necessitated by their everyday lives, in order to free up time and energy for the breast cancer project. It may be possible to delegate other tasks, too, such as library or on-line research.

9. ...keeping records of your case...

There are at least two reasons to maintain, in your possession, a complete record of your breast cancer project. First, for your own education about your case, you will want to review it when it's convenient for you. Second, you will want all the material at your fingertips so that you can give copies of it to experts whom you consult for second opinions. This is something you should do for any report which leads people to make recommendations, such as the mammogram or pathology report.

Gathering and maintaining a complete record of your project may be one of those tasks that you can get your friends or volunteers at a resource center to help you accomplish. In addition, the best investment I think anyone facing breast cancer decisions can make is a portable tape recorder to audiotape the many consultations involving different specialists who try to devise treatments customized to your case. Bring someone along to your meetings to deal with the tape recorder if it's distracting or troublesome for you to do it yourself.

With audiotapes, and notes (ask for copies of notes made by any other participants in a meeting), you begin to have the material you need to educate yourself about your case. In addition, you may want to obtain all the records maintained by the organizations involved in your care. Many of these records may be initially indecipherable to you, but someone, somewhere will know how to translate them. That sounds like a task you can delegate, too.

10. ...and last, but not least, maintaining your sense of humor.

Your breast cancer project will be serious work, but there is a difference between serious work and working seriously. And remember to take breaks. Now is a time to put your needs first, and take care of yourself.

 

 

 

 

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