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Readers respond to questions posed by CURE.
My family doctor called me on a Friday (which fell before a holiday weekend) at 5:30 p.m. He told me I had cancer, and I blanked out much of what followed in the conversation. I asked him at the end of the call, "What do I do next?" He said, "Call our office on Tuesday, but don't call in the morning. You're not our only patient." I'm sure the callousness of this doctor had nothing to do with whether he told me in person or over the phone. More than anything, it was the timing of it. I spent the next three days pouring through the Internet and scaring myself silly. Finally, on Tuesday I talked to another doctor and got the information I needed to start on my journey. There are some real jerks out there in the medical community.
My personal care physician first informed me that a spot showed up on my kidney incidentally on an ultrasound when they were looking for gall bladder problems. He did this with care and concern and in person, also adding that further testing would likely rule it benign. Of course, the subsequent CT scan confirmed a solid renal mass. This time the physician asked me to meet him in his office at the end of his workday. That pretty much steeled me for his pronouncement. Again, I felt as if he were telling a member of his own family the bad news. While shocked out of my mind, his handling of this talk and outlining of options was a tremendous help. I’ll be forever grateful to him for his kindness. I’m 15 years out from a seemingly successful radical nephrectomy, with no recurrence to date.
Having family history, I almost expected a breast cancer diagnosis one day. Also, working in a pathology lab myself, I understood a delayed report can mean additional testing, so I was somewhat prepared for the news. So when I called my doctor's office and was told to "wait for the doctor," I knew. My doctor, knowing that I am pragmatic and that I also understand medical terminology, was able to deliver the message to me calmly on the phone while I was working, plus the "good news" that my breast cancer was ductal carcinoma in situ (best case scenario). If you have been going to a doctor for a long time, he or she should understand how you need to hear the news.
The doctor showed me and my husband all the films and explained the changes from previous films to the current ones. She said she would call me the next afternoon with the results. She was very apologetic about having to give me the results over the phone, but explained that it would save us from making an additional trip. True to her word, she called and confirmed the cancer diagnosis. It wasn't the best way to get the news, but she certainly prepared me for the worst. I was able to listen attentively to her explanation of the test results. What sticks out in my memory is that she told me to make my appointment with the surgeon that day.
I was alone at home when my phone rang. It was my urologist, who told me recent tests had come back positive for prostate cancer and that I should come to his office with my wife to make plans to have the prostate "yanked out." The next morning my wife and I sat facing the elderly physician in his office. He told me he knew I had prostate cancer when I visited him for the first time six months earlier, but decided not to tell me. He told me to go across the hall and make an appointment with a couple of surgeon friends who were "good old boys, and they would do me a good job." I felt as though I was a farm animal at the hands of a calloused veterinarian. That was my last visit to the "vet." I also left my primary care physician who recommended him. Now, after being in almost constant treatment for 19 years, my cancer has metastasized to my lungs, spine, and possibly other places. I will be in treatment for the rest of my life due to the actions of a man who should not have become a doctor. Fortunately, he has retired, while I am surviving and being thankful for my many newfound talents.
L. H. D.
I had taken my 87-year-old mother to have breakfast with her 10 elderly longtime friends. As we ate and talked, my cell phone rang. I walked away from the table so I could hear and the receptionist at the ob/gyn office said, "Do you have a surgeon?" I said, "No, do I need one?" She replied, "Yes, you do, and we recommend Dr. B. I'll give you his phone number." I was in shock, denial, and distress; yet, I had to finish breakfast, smile, talk, hug, and then take my mother back across town to the Alzheimer's unit before I could drive home and begin to think about the telephone call. I talked with my husband and called the surgeon for an appointment. I never heard from the gynecologist or her staff and I picked out another ob/gyn after my stereotactic biopsy, surgical biopsy, lumpectomy, and nine weeks of radiation.
My internist sent me for an unrelated test. When it was over, the lab techs told me they had contacted my doctor and he wanted me to go straight home and wait for his call. A few minutes after I got home, the phone rang and he told me he had a bed waiting for me at the hospital. He said a mass had shown up on the ultrasound and he would be in to see me that evening to explain everything. When he arrived, he was with my hematologist/oncologist, whom I had seen previously for blood clots, and together they explained what they felt the mass was—non-Hodgkin lymphoma in the retroperitoneum—and what the best course of treatment would be. Thus began my now eight-year relationship with cancer.
My health care provider informed me I had invasive breast cancer over the telephone in my office on a rainy, cold Friday afternoon. I had not been given the results of my biopsy from two weeks prior and had assumed that no communication meant “all clear.” However, my intuition was telling me to be certain, so I contacted my surgeon’s office and was promptly placed on hold. Because I was calling from my "busy" office, I placed the call on speaker so I could continue to work, provide leadership to my staff, respond to e-mails needing answers, etc. while waiting on hold. Some time had passed when a nurse came on the line and gave me the bad news! I was speechless and don’t remember much after that. I simply broke down and cried—in my glass office with an audience of staff and customers wondering.
My experience with being given my CLL diagnosis was definitely not a positive one! I had gone to my GP with a lump low in my axilla. After being sent to a surgeon, I was sent to a hematologist but had no forewarning of what was suspected. The physician walked into the room reviewing my chart, introduced himself and stated, “So, I see you are here to investigate your leukemia a bit further.” Needless to say, I remembered very little of what was told to me after that. My main concern was to end the session as quickly as possible before I vomited! I then faced the prospect of driving myself home while frantically trying to contact my husband or sister. The sobbing wreck behind the wheel was not the safest person on the freeway in Phoenix. The second hematologic oncologist I saw walked into the room, introduced himself, and said, “Could you tell me why you are here?” After soliciting what I knew, he proceeded to inform my husband and me of any further information we required at that time. Guess which physician I chose?
I’ve had cancer for more than six years—breast cancer that metastasized to the bone three years later. My doctor said, “Wow, you’ve got fourth stage bone metastases. This is going to be nasty.” As I tried to absorb that remark, she says, “You seem to be taking it well.” My response was: “Taking what well?” After the tests, I went to her for the results. She was not prepared; she had not read the reports. As she sat in the chair flipping through the reports, she told me I had “years and years.” I left and went to another doctor. She may be a good doctor, but she was not prepared—this is a business and I have many more choices of doctors and hospitals.
I remember as if it was yesterday, even though it occurred almost nine years ago. I had undergone major abdominal surgery for a large tumor the previous day. The next afternoon my internist came into the room. She sat down on the side of the bed and took my hand. Her words were that it was not good. She said it was high-grade retroperitoneal leiomyosarcoma and that I only had four to five years at the most. I remember sitting there almost wailing. She put her arms around me and held me until I quit crying. She asked me who I would like her to call to come up. She called my family members and my two best friends. When they arrived, she talked to the entire group. It helped tremendously to have her do the talking.
I had no idea I had cancer. After multiple X-rays, and finally a CT scan, a doctor I had never seen before came into my room along with her entourage. She was not a cancer specialist, nor had a biopsy been performed. She came up to my bed and told me I had cancer. I was in shock and started to cry. She and the entourage left. I, to this day, believe she is a sadist. The nurses moved me to a private room while I sobbed.
I was told to go home and get my house in order because I only had months to live. No "I'm sorry," no hand on my shoulder, nothing. My surgeon told my husband and me that if there was somewhere we wanted to go, to do it now. I just had a third of my lung removed and was in too much pain to think about going anywhere. I went to an oncologist who said he knew cancer and asked me to let him help me. He walked across the room for a handshake, I presumed, but he gave me a big hug instead—the first one I had received from any health care worker! It meant so much to me. He was telling me that he cared about me. That was seven years ago and I still see him on a regular basis.
With my first of three cancer diagnoses (fibrosarcoma), I was told over the telephone. I was home with my three small children, ages 1, 4, and 6, and admit to being very shaken. However, if I had driven to the doctor's office and been told there, it is possible that my ability to drive home safely could have been affected. I don’t know if there is a better way. I wonder if it would be a good idea to ask a patient on his or her information sheet how he or she would like to receive a diagnosis.
I'm a two-time Hodgkin lymphoma survivor. Both times, I had all tests scheduled. First, I was informed while I was hospitalized. I was alone at the time and only 26. Fortunately, the doctor was young and stayed with me for quite some time. I was hoping to have family nearby. The second time, I had all tests scheduled prior to leaving, including a follow-up visit within five days of the last test. The span was no more than a week. The time obviously went by quickly due to testing. My family was there with me to either help me deal with bad news or help me celebrate the good news. I think having everything scheduled prior helps. I was anxious and worried. It alleviated some of that and just set the ball rolling. Having the face-to-face is important during a difficult diagnosis- it makes you feel like a person, not a number.
I had come out of surgery thinking it wasn't cancer due to a smaller incision, but my family and friends knew otherwise. Because I was so out of it, they opted not to tell me. Believing it wasn't cancer was the only thing that carried me through an impossible night. I think of their agony—going back and forth, discussing whether or not to tell me, but I'm glad they didn't. The day after surgery, my gynecological oncologist sat beside my bed at eye level and simply said, "It's ovarian cancer. When I put my hand in your belly, my heart sank and so did yours, you just didn't know it." Her second sentence stuck with me—this saddened her too. I wanted to cry, but couldn't because of excruciating abdominal pain. My surgeon respected my initial decision to decline chemo, giving me only as much information as I was ready to hear. I appreciate how straightforward she was, yet compassionate—clinical superiority and compassion can co-exist and she exemplified this. I ultimately opted for chemo, which put me into remission. I celebrate my five-year anniversary from a very aggressive form of ovarian cancer this July!
I was informed by phone. It was personal and I didn't have to drive home after hearing the word “cancer.” The nurse I talked to was very sympathetic. She made an appointment for me to go in and talk to her about my options and treatment plans. Immediately after talking to her, my primary care doctor called and offered me her support. I felt I was dealing with someone who truly cared.
I hope that most were informed of their diagnosis in a more gentle and compassionate manner than mine: I was sitting across the desk from my surgeon who was scheduled to perform a minor outpatient surgery of my bladder the next day. He pulled up the computer screen to read the necessary pre-op lab test results, which he had requested from my family practitioner. He stopped abruptly, turned his head to me, and asked why I had a CT scan, which he had not ordered. My response was that my doctor said it was necessary. He was reading out loud as he scanned the results of the CT scan, then stopped mid-sentence after he uttered the words “highly suspicious for primary lung carcinoma." This cancer vocabulary was strange to me. I didn't know why a CT scan was performed. I asked him what that meant. He replied bluntly, "It’s cancer." This all-business, traditionally abrupt surgeon suddenly crossed the room, hugged me quickly, and said, "I am so sorry to have to tell you this news in this way." He offered to postpone or cancel the next day's scheduled surgery and asked what I preferred to do. I was stunned—I felt as if I had been pushed off a high dive into an empty pool. I numbly stumbled out to my car. Before driving home, I stopped at the home of an ill friend. I told her of my news and I would not be able to continue my caregiving for her, but that she must find a replacement. She sobbed at my news, and then I sobbed too.
On my initial visit, I was seen by a physician’s assistant who performed a biopsy and suggested I “knock back a couple of beers when you get home.” A week later when I returned for the results, the receptionist (who a week earlier kept me waiting while she planned a party) called me by name as soon as I walked in the door and ushered me directly into an examining room. The receptionist's behavior told me that my test was positive. A different physician’s assistant came in and told me in an off-hand way, “Your biopsy was positive. I’m here to describe the surgery to you,” which he did in shocking detail. At the end, he announced with a flourish that, when I came for my third appointment, I could meet the doctor. In the end, that doctor did not perform my surgery.
In December 2002 I had a core needle biopsy and two days later on a Friday afternoon, my telephone rang. It was my surgeon. He told me the results were not what he wanted, but I had many good options. He also said he would like for me and my husband to come to his office that day if possible. I remember asking him what time his latest appointment was and he answered, "Whenever you two can get here. I will wait." I was shocked at his willingness to wait for my husband to get off work and to meet with us on a Friday afternoon. We got there at 4:00 and left about 6:15. He was the kindest, most compassionate doctor I had ever met. I also remember sitting in his office and saying, "I normally have time to check out my doctors. How do I know you are any good?" I was afraid that I might have offended him, but he quickly said that if a doctor is offended by that question, the patient should run! I had my first surgery the following Monday. Thank God for good, caring, sensitive doctors who genuinely love their profession and their patients.
I was told, in person, by my provider as he handed me a prescription for tranquilizers and said I had about three months to live because it was stage 4 ovarian cancer. When I returned home, the phone was ringing. It was hospice wanting to know when they could come over. This was 10 years ago.
When the needle biopsy confirmed I had prostate cancer, my physician, in a face-to-face meeting with my wife and me, said: “Well, it’s cancer. But I promise you, it won’t shorten your life by one day.” In an earlier appointment, he had added that if it is cancer “it won’t affect the quality of life one bit.” I challenged that comment, telling him he could not make that promise. As it turned out, surgery did not cure my cancer as he had promised, nor did radiation, nor a clinical trial. Nine and half years later, I’m living with prostate cancer—so far under control with hormone blockade. The quality of my life has certainly been affected. Whether my life is shortened remains to be seen. I’m sure my physician meant to be reassuring, but I found the comments to be arrogant and cavalier–and later told him so. He apologized.
My breast surgeon's office called and asked me to meet the surgeon in his office at 7:00 p.m., after his last surgical case of the day. I knew that could only mean bad news. I brought a friend with me and the doctor broke the news very gently. We spoke for a long time and he gave me the feeling he had all the time in the world to talk about what came next.
I knew that Friday was the day my biopsy results would be received. It was a college graduation day—a day filled with activity and celebration for our students. There was a nagging feeling in the back of my mind all day. At the end of the day, I visited a graduate’s family celebration, and still no call. I began to feel a bit more hopeful. No news was always good news. At 10:30 p.m., the call arrived. It was actually a message left earlier that evening, but I had not picked it up on that particular phone. I returned the call in the late evening and the dear doctor said, “Oh Polly, thank you so much for calling (like I was doing her a favor). I want to talk with you about your biopsy.” She explained there was a very tiny tumor and that DCIS would not kill me but it could be bad and I should have it taken out. Would Tuesday be a good day? (Like we were making a date for coffee). She could not have been kinder. She was at the office working very late and getting ready to leave for a weekend at their lake retreat. She was also adamant that I contact her during the weekend and at any other time. I felt relieved and ready to fight. That office continued to be a source of strength throughout the treatment and they are still among my most treasured friends on this planet.
We had scheduled an appointment for a few days after the biopsy. When I was shown in to the examination room, the nurse told me to put on a gown and she would be back in a few minutes. When she returned, she sat at the desk with her back to me, opened a file, and said, "You have invasive ductal carcinoma and Dr. X will be in to discuss it with you in a little while." She left the room and I sat there alone for about 20 minutes before the doctor arrived- that was the most painful 20 minutes of my life. Once my doctor arrived, she spent at least an hour with me going over options and explaining the next steps. She was wonderful, but it could not erase the pain of those first 20 minutes alone with my fears.
My doctor was thorough, honest, and compassionate. Two weeks before my diagnosis, he told me I had double pneumonia. A week later, he told me I was not responding to medication and he wanted a CT scan the day of my next appointment. After the scan, he asked me to sit down in his office and wanted to know if my husband was with me. He told me that there was a large mass in my upper right lung. He asked if I wanted treatment in the small town we lived in or if I would like to go to the nearest cancer center. I appreciated him giving me two correct choices. His decisiveness and direction attributed much to my being alive seven years later, which is rare for stage 4, inoperable, non-small cell lung cancer.
I was in my hospital room recovering from a hysterectomy for a large fibroid, when my doctor walked in. I thought it was strange she was there in the middle of the day, but she sat on my bed and said, "I'm sorry to have to tell you this, but you have cancer. The pathologist said the fibroid was actually a large tumor.” I said, "Well, what do we have to do now to get rid of it?" She took my hand and told me she was referring me to the only gynecological/oncologist in our town and she would assist in any further treatment if needed. She did assist at a second surgery and continually checked up on me until I left the hospital. The same day, the oncologist came to see me and cancelled her day off to do a lymphadenectomy and pelvic washing as soon as it could be scheduled. The oncologist was very matter of fact with us and she gave us the worst case and best case prognosis for high grade, undifferentiated uterine sarcoma. She was always available to me through surgery, after surgery, by phone, and even to this day celebrates my seven year survival with hugs and joy every time she sees me. I could not have received more supportive, caring treatment throughout a difficult journey.
After a year of chronic fatigue and no diagnosis that fit the symptoms, my primary care doctor sent me to a hematology-oncology specialist. I didn’t know what kind of doctor this was. On our second visit, the doctor had the nurse give me a lab order, at the bottom of which was a request for a leukemia profile- that was the first time anyone communicated anything to us about the possibility of leukemia. It ruined our day. Later, the specialist did a bone marrow biopsy and confirmed to us in person that I had CML (chronic myeloid leukemia), but the initial shock was very difficult since we knew nothing about leukemia. The doctor’s unwillingness to answer questions at follow-up appointments caused us to switch to a different oncologist within a few months.