A physician perspective: belonging to that "Special Club".
Breast cancer (Care and treatment)
Breast cancer (Patient outcomes)
Cancer (Care and treatment)
Cancer (Health aspects)
|Author:||Taylor, Paula F.|
|Publication:||Name: West Virginia Medical Journal Publisher: West Virginia State Medical Association Audience: Academic Format: Magazine/Journal Subject: Health Copyright: COPYRIGHT 2009 West Virginia State Medical Association ISSN: 0043-3284|
|Issue:||Date: Oct, 2009 Source Volume: 105 Source Issue: S1|
|Product:||Product Code: 8000432 Cancer Therapy NAICS Code: 621 Ambulatory Health Care Services|
|Geographic:||Geographic Scope: West Virginia Geographic Code: 1U5WV West Virginia|
1) To review actual patient experience with breast cancer. 2) To review modalities of the treatment regimen. 3) To discuss options that may improve perceived patient care.
A special friend who is also my colleague sent me a card recently and added the handwritten remark that "now you belong to a very special club; one that you never wanted to belong to..."
It began with a small tender lump in my left breast last fall. But I was taught in medical school that breast cancer never hurts or has painful lesions, so I thought I was being an over-reactive physician. Just to be sure, I made an appointment with my OB/ GYN. When I pointed to the area and reported that I had noticed this tender lump, I was examined and told, "This is fibrocystic disease, don't worry about it". Not, "I 'm pretty sure this is fibrocystic disease, but why don't we get a mammogram just to be sure." (I later supposed by this response that this was yet another physician who was taught that breast cancer doesn't hurt ...) I subsequently delayed getting my mammogram--who wouldn't, given how uncomfortable they can be--and I had gotten it checked by my physician, right?
The mammogram. A few months had passed and my "fibrocystic lump" was ever present and now ached. I had an opening in my usually full schedule on a Friday and decided to have my cholesterol checked, (yes, I was also overdue on that one) and then got my mammogram. The weekend passed and while driving to work on Monday, I received a phone call from the nurse at the imaging center giving me the radiologist's report that went something like," ...a spiculated mass consistent with malignancy" followed by advice that I meet with a surgeon that afternoon to arrange a biopsy. Gosh, should we really be telling patients their unfortunate findings while they are driving to work? Isn't it bad enough that everyone is already on their cell phones while driving? After explaining that I had to be at work that afternoon, I arranged for the biopsy to be the next day. I then tearfully called my husband followed by my closest friend who is always there.
The biopsy. I had met my surgeon as a resident but did not know him well. He reviewed the mammogram with me and assured me that this was cancer, no doubt. We then proceeded with the biopsy and I was instructed to call the office on Thursday for path results.
The results. I have a friend who is also a pathologist and so I requested my initial report the day after my biopsy. Three days is a very long time when you are hoping that the surgeon misread that certainty of a malignancy ... I guess that was the first time I crossed the barrier from being just the patient to being a physician wanting special treatment, although I didn't really look at it that way; I just wanted my results. If some other person knew, shouldn't I be next? It was obvious later that not everyone felt the same way I did.
The surgery. After choosing an exceptional surgeon based on several "who would you choose if it were your wife?" polls, I had to decide what procedure: lumpectomy, unilateral mastectomy or bilateral mastectomy and what day next week to get it done. My surgeon agreed to delay by a week so I could work my scheduled ER shifts and all was set. I tried not to lose it when I noticed that I had been mistakenly given someone else's orders during the preadmission testing circus. I could get over that part, mistakes happen, right? Just for that extra feeling of security my daughter helped me mark my surgical site with a bright pink marker that night. Large pink letters that read "this one" on the left breast and "NOT" on the right with an added message just for fun of, "Take all of this if you have time", written over my abundant abdomen. Fortunately, I had a relatively uneventful left mastectomy and except for the drains under my left arm that felt like two lobsters attached and hanging there, my follow up care went well.
Chemotherapy. In a word: horrible. I was one of those unfortunate few who had extensive side effects from the periodic infusions, so bad that the regimen had to be changed almost completely before my third cycle. After the first round of chemo I told my oncologist there had been a mistake. As he looked at me in horror I told him that I was supposed to get that regimen that makes you feel bad for a couple of days then you go back to work. (I had been very ill for over a week.) I also suggested that he and all of his fellow oncologists should be required to have one injection of Neulasta before they prescribe it and tell patients they will have "flu-like" symptoms. My experiences with the flu have never involved such excruciating bone pain. Fortunately, he kept me on as his patient and devotedly tried to help me find relief from ongoing as well as new symptoms, proving to me my earlier impression of oncologists in general as being the salt of the earth. This experience also confirmed my impression gained during my training that when patients with advanced cancer are given options for chemotherapy, the likely difference in quality of the potential extension of their time should be included. The end of the list of options should include the one of simply doing nothing. In my experience as a hospice physician I have heard enumerable times, "I wish I had known it would make me/him /her feel so bad before things got worse."
Radiation therapy. The extranodal extension of my metastatic node qualified me for radiation therapy. The final decision to proceed with treatments wasn't difficult. If I have a recurrence in the coming years I would rather say to my family, "I did everything they offered" rather than, "Gee, I should have taken the radiation therapy." I was fortunate to have care from a bright and caring radiation oncologist who I trained with years ago. As my oncologist had done months earlier, this doctor also gave me more information than I could have asked for with supporting evidence for his choice of therapy. I was initially distressed by my treatment schedule offering only 715 am or 530 pm treatment appointments, but soon realized they were very flexible with my work schedule as well as offering other openings as they came available. I have gotten the impression that the technicians who provide my treatments are happy with their work; they are consistently pleasant and cheerful regardless of the time of day I see them. I have not yet encountered the predicted skin breakdown and I am unsure if I will recognize the predicted fatigue as I still have fatigue from my last chemotherapy round.
Physician and patient. The burning question in all of this is what is the real difference for me in having breast cancer from a physician's perspective? Have I been treated differently? In all honesty, I am unsure of some potential differences because I haven't had breast cancer as a nonphysician. I have found it interesting that most of the healthcare workers (i.e. nurses, office staff) I have been involved with have seldom referred to me as "Doctor" even though they know I am one. They casually call me by my first name or refer to me as 'Miss". In my many interactions on only rare occasions has someone respectfully asked me my preference in how I should like to be addressed. During a four day period of hospitalization one nurse introduced herself to me and said," I see that you are a physician. Would you like for me to address you as Dr. Taylor or as Paula?"
As the patient, I have also realized how important the extra things matter. Things like stopping by later in the day to see how your hospitalized patient is coming along; it isn't a billable visit, but its worth is beyond measure. Also, making the occasional weekend or after-hours call to just check on a patient. I know that the calls to me were not the exception because I am a physician or colleague, because I have had reports from other patients who appreciate this extra care from the same oncologist. What a great way to practice! Never let a patient feel abandoned or forgotten.
I think the most difficult relationships in medicine are those that are formed when a physician is caring for a patient who is also a physician. I have been in this position myself, and we struggle with how different or same we treat our colleagues and how we both share information and offer advice and care planning. On many occasions I have asked my physician to be more paternalistic or to tell me what he would choose for his daughter or wife relative to my case. As the patient I want both; I don't want to be treated any differently than anyone else and do want special treatment because part of being a physician is the oath to care for each other within our profession. Ideally, I think all patients should be given special treatment regardless of their background.
One thing that has become very obvious to me as a patient and physician is that those gestures including notes or cards sent to wish someone well really make a difference. A physician colleague called me when she found out about me and offered her support including placing my name on her prayer list at church. It is often easier to think my note won't matter in the greater scheme of things but I have received many uplifting cards on very dark days during my treatment and they have meant so much.
I don't know how my story will end, but I can't help but feel that it has already been a good one. I have been lucky to have lived a happy full life, raised by a loving family, finding my soul mate, that one true love many of us never find, and having three wonderful enriching children who have been my greatest joy in living. As if that weren't enough, I have also been honored to be a physician and have the trust and respect of my colleagues as well as my patients. I have been given the privilege of sharing my patients' deepest concerns, secrets and fears, and I appreciate even more the weight that this carries. My cancer diagnosis does not define me or who I am; it is a storm I was destined to be in and I am weathering it with the unfailing support of my faith, my family and my friends and co-workers. I now belong to that special club and through the support and education I have been offered I hope to be a worthy member.
21. T or F Breast cancer is never painful.
22. T or F Mammogram is an acceptable modality used for screening for breast cancer.
23. T or F Many patients appreciate extra attention, including followup calls or extra visits.
By Paula F. Taylor, RPh, MD
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