[W]omen or their advocates must act assertively to ensure the best care and
confront physicians who may be unresponsive to their needs.
[E]veryone wants the results of tests delivered as soon as possible.
The gap between what I feel and what I feel allowed to say widens and
deepens and swallows my voice.
Sensitivity is a door that swings both ways.
[T]he problems of knowledge and responsibility weigh heavily on the
shoulders of all who must deal with a life-threatening illness
The proper role of a doctor is to inform you, educate you and guide you to make reasonable decisions.
Doctors are Not Gods
The following article is excerpted from Chapter 5 of Advanced
Breast Cancer: A Guide to Living with Metastatic Disease, 2nd Edition, by Musa Mayer, copyright 1998, published by O'Reilly & Associates, Inc. For
book orders/information, call (800) 998-9938. Permission is granted
to print and distribute this excerpt for noncommercial use as long as
the above source is included. The information in this article is
meant to educate and should not be used as an alternative for
professional medical care.
When first diagnosed with breast cancer, one of the more daunting tasks a woman must face is that of selecting a surgeon and oncologist who are competent and responsive to her needs. If she has a recurrence, the good relationship she has hopefully already established with her oncologist will stand her in good stead, at least as a point of departure.
In their book, Breast Cancer: The Complete Guide, Drs. Yashar Hirshaut and Peter Pressman write about why it can be important to seek at least a second opinion, even if your relationship with your initial oncologist has been a good one. "Even if all you want is the reassurance of a fresh evaluation, you should certainly get more than one opinion. It makes sense to reevaluate the work of the people who were responsible for your care and to consider alternatives." Drs. Hirshaut and Pressman go on to advise that since treating recurrent breast cancer requires special expertise, your treating physician--ideally head of your "treatment team"--should: 1) have treated many patients with metastatic breast cancer, 2) approach treating the disease in a "vigorous" fashion, as an "impassioned advocate, determined to secure the best results for you," and 3) act as an expert diagnostician, whose knowledge is always up to date, keeping up with the constantly changing treatments and discoveries in the field, and whose method is patient and meticulous.1
Like many others, Pat Leach learned the hard way about how important a second opinion can be:
If I hadn't gotten a second opinion after initial diagnosis, I would have had extensive surgery and a doctor who intimidated me and I didn't really trust. I was so confused and scared at first, that I was willing to do whatever he said. Thank God for my friend Ruth, who had heard a group of doctors from Boston give a talk. I went to see them and immediately felt more confident, less scared, felt I was doing the best I could for myself. I've had other second opinions to confirm treatment options and never regretted doing it. I went back to the old doctor for the treatment.
For Bob and Ginger Crisp, as for many others, the most important part of this effort came at the beginning of treatment:
We were careful to obtain second opinions at the start. However, once we had assembled a team, then it was not so much about getting second opinions as agreement from the team. In our case, it included a local oncologist, a local radiation oncologist and an oncology surgeon (who did Ginger's surgeries), the chemo oncologist, and the head of BMT (bone marrow transplant) where Ginger was treated.
It's difficult to make any hard and fast pronouncements about what personal qualities of an oncologist are likely to make a particular patient feel at ease. Some people prize their doctor's compassionate, friendly manner; others are more comfortable with a more formal, professional stance. Some expect their doctors to show a great deal of concern for how they are managing the cancer in their lives, while others relate to their oncologist as a specialist, preferring to seek their emotional support elsewhere. Some like an authoritative, take-charge manner, while others prefer more of an equal relationship, where their participation in decision-making is freely elicited, and a real give-and-take ensues.
There are some factors, however, that are universally appreciated: doctors who spend enough unhurried time; who freely share, when asked, their own reasoning process and expertise on treatment decisions; who are open to questions, no matter how technical on the one hand, or uninformed on the other; who treat family members with consideration; and who are available in a reasonable time frame both during and outside of office hours. And, of course, everyone wants the results of tests delivered as soon as possible. Delays, whether waiting for test results, scheduled appointments, second opinions or consultations, are particularly maddening for people coping with metastatic breast cancer, and serve to raise already heightened anxiety levels still further.
Sometimes, when test results get lost in administrative limbo, or other promised events fail to materialize in a timely way, women or their advocates must act assertively to ensure the best care and confront physicians who may be unresponsive to their needs.
It's difficult for many women to confront doctors on whom they feel dependent. Often it takes time to muster the courage. Kathy Stone wrote to the Breast Cancer Discussion List about her growing frustration with her doctor, and was encouraged to discuss her concerns with him.
Tomorrow when I have my weekly oncologist visit I need to get things straight between the doctor and myself. I don't think he realizes how unhappy I am with some of the ways he responds to me or my situation. I don't expect him to change much, but I am hoping that he will at least acknowledge the fact that I have some reasonable complaints and try to reach some sort of method to solve them.
Clearly, she was not going into this meeting with confidence that this discussion would resolve much. "I have made yet another list," Kathy wrote. "Hopefully I will follow through and make sure we discuss the important topics before I am casually dismissed once again for another week." Her next message was triumphant, however.
I kept my courage and backbone and spoke to my oncologist about unacceptable behavior and attitudes from some of his office staff. About them not following up, leaving me hanging and even lying about simple things
him not reviewing my records before coming into the exam room, and my gut feeling that "the left hand didn't know what the right hand was doing" at times. He apologized, said he would try harder to make me feel more comfortable and he would speak with his staff (mainly office manager) about miscommunications. I could tell he was embarrassed and surprised
but I kept my cool
didn't get mad and treated the subject as something I was "owed" as a patient of his. I know he took the message to heart, because after my visit, he called the head oncology nurse at the hospital and spoke to her about it and asked if she had ever heard of me being unhappy or if she had ever heard of other patients being unhappy. Of course she has heard a lot and told him so. Maybe things will change.
As she approached the high-dose chemotherapy treatment she was counting on, yet dreading, Nancy Gilpatrick found herself increasingly upset with her oncologist.
I've just been realizing my doctor isn't very accessible to me. I get good information from the radiation oncologist, who will talk with me for 45 minutes. My medical oncologist sends her nurse, whom I happen to like and connect with, instead of herself. I decided last Friday when I realized this that I would confront her when I go in tomorrow. I don't feel like I can change doctors at this point and I don't want to. The office is a good and peaceful place. I am going to tell her that it is unacceptable to me to pay the money when it is the nurse who gives me my care. I want her to talk with me, even if it's as simple as acknowledging my presence when I'm in the treatment room and she is walking the hall. I basically think she--who is near my age--is scared by my breast cancer. If it can happen to me, it can happen to her. I think medical professionals say to themselves, "Oh, that can't happen to me, I get mammograms," or, "I'm educated," or, "I'm rich and she's poor," or whatever. They make themselves separate from us. With me she's having a harder time. No one seems to really want to deal with the fact they think I'm going to die from this disease due to its resistance to radiation and chemo (so far). Anyway, I'm angry and I'm going to let her know that.
The following story makes clear just how important it is to consult a physician you like and trust. When Sharon Multhauf's recurrence to bone was first diagnosed, she had been seeing an oncologist for follow-up who had been assigned by her managed care system. Her detailed account of what happened then is a classic example of poor communication between doctor and patient.
On December 28, 1994, Lloyd and I waited in the exam room for my most unfavorite oncologist to come in. This woman is very cold and matter-of-fact. She seems not to know how to smile, and she doesn't deal in hopefulness. She walked in and sat down, opened my chart, and proceeded to ask me how I was doing. I said I didn't want to talk about anything else right now until I knew what the bone scan report said. She hadn't received a typed copy yet, but went out to the office and listened to the dictated report on the internal phone system. She returned to tell me that there were "two things going on," at which I stiffened. She rattled off the places where I had always known I had arthritis, and then said that there were areas of uptake in the sacrum, pelvis and hip that were "highly suggestive of metastatic disease."
Further tests were scheduled, including an MRI. It was two weeks later, on a day Sharon now calls "Black Tuesday," that the diagnosis was confirmed. Sharon had been telling herself it was possible the initial tests had been mistaken, or that if they were confirmed, she still had a chance to somehow find a cure for this recurrence. These hopes evaporated during the consultation.
This office visit held no pleasantries. We cut to the results, and they were bad. She read the conclusions in the report and we asked to see the films. She had them with her (she knew what to expect from us by now), and she showed us the areas of arthritis and, by contrast, the areas of metastasis.
A fact-based and rationally motivated person herself, in this situation Sharon was stunned by this doctor's coldness.
Again, Lloyd and I held tight to one another's hands, and we continued to question: What kind of result was likely from the tamoxifen? What kind of symptoms could I expect? We did not ask how long I had to live. I knew I didn't want to get that answer from any doctor right now--especially from her. We asked what would follow if the hormones failed. She said I would take chemo, starting with CAF and moving on to others. I asked her how long I would need to be on chemo, and she said, "The rest of your life." I hated that answer. She wasn't going to allow me any shred of hope for a cure, was she? Lloyd asked what new investigative treatments we might look into, and she replied, "Like what?" That made him mad, because he felt she should be leading us, not the other way around. He said, "Like bone marrow transplant," which we had only barely begun to know about. The oncologist replied, "She wouldn't be eligible for that, because she has cancer in her bones." In the months to come, when I learned about peripheral stem cell replacement, I felt very annoyed that this doctor had not responded with information about how I might be helped, rather than dismissing Lloyd's question so offhandedly.
After all this, the oncologist asked me where I was having pain. The words that came out of my mouth summed up the mood of the moment. I said, "In my heart." She didn't know what to say, so she went on to the next question.
This discordance between a patient's concerns, which are only partly expressed by her physical symptoms, and the physician's focus on diagnosis and treatment, highlighted here by this disturbing example, is a problem that is to some extent inherent in any consultation of this kind. In his book At the Will of the Body, medical sociologist Arthur Frank makes the important distinction between disease, a bodily process, and illness, which is our total experience of living with a disease.
Medical treatment is designed to make everyone believe that only the disease--what is measurable and mechanical--can be discussed. Talking to doctors always makes me conscious of what I am not supposed to say. Thus I am particularly silent when I have been given bad news. I know I am supposed to ask only about the disease, but what I feel is the illness. The questions I want to ask about my life are not allowed, not speakable, not even thinkable. The gap between what I feel and what I feel allowed to say widens and deepens and swallows my voice.2
The stories that follow detail the qualities some people particularly appreciate in their physicians. After her liver metastases had failed to respond to Adriamycin, Mary D'Angelo agreed to seek a second opinion at a well-known cancer center. It was after this visit that Mary finally realized that her friends who had been advising her to seek a new oncologist were right.
Charlie and I were in a panic state, thinking what are we going to do? When we saw Dr. H., everything changed. Here was this lovely young doctor who said, "You know, I looked at your scan and I don't think that these are new tumors." He didn't think that there were many more tumors, but that it was the way the scan was taken.
PJ Hagler describes feelings of loyalty to her doctor.
My first doctor had cancer himself, and I couldn't deal with the idea that the person trying to save me was dying. I also felt that he had not been vigilant, and that he really didn't know what he was doing. There had been many instances of that which I overlooked, because I thought he was taking care of me well. But I always felt, after that first time of seeing Dr. H., that there was lots of hope. He encouraged me that way, although he was always bluntly honest, which I like and want. He said, "Make no mistake about it, you are going to die of breast cancer." Which was fine, because I thought, well, this is an honest person. But he said also, "I don't know when. It depends, but there are lots of treatments, and we'll put you on tamoxifen." I thought, what? That tiny little half-an-aspirin sized pill? That everyone is taking prophylactically? I'm going to take this for a disease that's supposed to kill me in three months, when the most deadly chemo did nothing? But I said, okay. I'll try it.
My oncologist wants to know everything about me and my care. He has made Mike and me a part of his team. I have had him and only him for over six years. I'm never passed to anyone else. He even walks me into the chemo room for treatments. I have his home phone number and he has called me at home. I get all the time I need to talk to him before a treatment and every ten days during treatment. I have all my needles changed in my port every Friday by his nurse. I have all my chemo treatments in his office. I always have the same nurse do all my needle changes, blood work and chemo treatments. Since 1991 they have been like a part of my family. I trust them and feel I could tell them anything and I have a pact with my oncologist that he will be honest with me and let me know exactly where I stand. He has looked at my file, which is huge, before I come into the room and he knows the results of my blood work which I have had a week before my seeing him. We feel like a team trying to get me well.
Sensitivity is a door that swings both ways. Patients like Lucie Bergmann-Shuster are quite aware of the stresses their doctors are under, and will often strive to make their tasks easier.
I am very grateful to the oncologists who stick to their profession. It is tough for them to see patients diminish as the disease progresses and takes over. I try to cheer my oncologist up with my still vivacious being, even when I report problems.
In this spirit, Lucie transformed having a Port-a-cath implanted--a subcutaneous port used to administer her chemotherapy and draw blood without further damaging her veins--by engaging her sense of curiosity and comedy. By focusing on this procedure as a mere "chore," as she decided to see this minor surgery, she was able to release some of her anxiety.
Everything went smoothly. I had my head covered so couldn't see anything but I could hear the chatter. At one point, my surgeon asked to do an extra fastening suture and then jestingly she said to me, "That will be five bucks extra," and then asked me to shift my left arm under my body and tilt the chest up some more. In no time at all, it was done. In fact, it was done 15 minutes early, so I asked for a rebate on the five bucks extra charge on the stitches. I was awake and cheerful as I watched the resident's bloodied hands apply the last of the dressing to hold the catheter in place. Everybody was in a good mood at a job well done and expeditiously. The orderly came and wheeled me out and without much further ado, my husband joined me beside the gurney, grinning from ear to ear.
Kim Banks also worries about expecting godlike powers from doctors, fearing that this will encourage even more unreality in an already distorted relationship.
After we got settled in the oncology ward, my husband explained his happy face. Dr. Kate had come out to the family waiting area in her scrubs and sternly shook Cy's hands saying, "she is gonna live." At first his jaw dropped and then he nearly roared, but given the other folks in the room he suppressed his laughter to a mere chuckle. Dr. Kate winked at him with that leprechaun charm of hers and then left. Both hubby and I are of the opinion that, whenever possible, one should have fun doing whatever job or chore we do. Knowing that Dr. Kate was of like disposition made us feel more than comforted and rather special to be included and privy to such personal jest. A woman after my own heart I would say, doing the best she can with joy and spunk.
We all want to be treated by caring, competent doctors. I'm a perfect example--I did not return to an oncologist who was considered an expert on breast cancer, simply because I felt like I was being treated like a number. I believe our confidence in our doctors can affect how well we tolerate and respond to treatment. The mind is a powerful thing--and I wanted that power reinforcing my treatment in my fight against this disease.
As we've seen throughout this article, the problems of knowledge and responsibility weigh heavily on the shoulders of all who must deal with a life-threatening illness: patients, families and physicians. From some years of experience in acting as an advocate on behalf of sick relatives and dealing with the medical profession, Scott Kitterman speaks with a certain authority when he says:
I think we have to remember that doctors are people, too, and are under an inordinate amount of stress. They are taught in medical school that they must appear knowledgeable and confident at all times. Maybe your doctor cries when he sees a patient crying, and feels that allowing a patient to observe that would lower their confidence in him. I can't imagine what it would be like to be the person that has to break the news to a person that they have cancer. It must also be incredibly difficult to practice in a field where the tools against the disease cause so much pain and often are not effective. I could imagine having many bad days if I were in my oncologist's shoes.
The proper role of a doctor is to inform you, educate you and guide you to make reasonable decisions. He is not there to sit on high and inform you about what is going to happen to you next. This imposes a difficult burden on both patients and doctors. As patients, and their loved ones, it is incumbent on us to learn enough to understand what is going on and participate intelligently in the decision-making process. Doctors must be willing to be open with us and, in addition to fully informing us about the details of our situation, help us with that education process.
Glenn Clabo found himself waiting with his wife, Barb, for the results of yet another MRI. Symptoms of dizziness and left-sided weakness had marred her recovery barely two months after completing her high-dose chemo with stem cell transplant. Yet, for all the fear his knowledge brought, Glenn never wished that he'd known less about the disease, or about Barb's prognosis.
The bottom line? Tell me everything there is to know
the good, the bad, the scary
everything. Don't let me live in denial and allow me to take for granted that those things I cherish most will be there in my mind's future. Make me realize that now is when that thought of love and appreciation should be expressed. That touch, smile, look that I used to put off needs to happen now. Don't take that away by giving me a false sense of hope that it's okay to put it off until tomorrow.
The hope will always be for a tomorrow
but we all need to be made aware that tomorrow may never come. Please don't hold back information to make it easier on me now. It's more important that I know all the possibilities, so I'll not regret what I didn't do when I had the chance. We all have too many regrets to live with as it is. Don't we?
Hirshaut, Yashar, and Pressman, Peter. Breast Cancer: The Complete Guide, Revised Edition (New York: Bantam Books, 1996), p. 223.
- Frank, Arthur. At the Will of the Body: Reflections on Illness
(New York: Houghton Mifflin, 1991), p. 13.