I was diagnosed with metastatic breast cancer in September 2009. Prior to that time, I didn’t give much thought to choosing a doctor or the role a primary care physician would play in directing my care.
I was 43 and had enjoyed good health. Doctors were for sick people and I was not sick. At least I didn’t think I was.
I chose my primary care physician for his proximity to my home. I felt a little foolish making an appointment with no specific complaint, but all signs pointed toward my employment (and attendant insurance benefits) winding down, so I scheduled a check up. The nurse practitioner felt a hard spot on my breast and gave me a prescription for a diagnostic mammogram. It didn’t seem urgent…I finally made an appointment a few weeks later.
I didn’t know it at the time, but after I went to that appointment, I crossed the border between good and bad health. Although I have continued to feel well, I am a cancer patient for life. I haven’t kept an exact tally, but I think I must be close to my 100th oncologist appointment. Many are not so lucky–I look forward to many more appointments!
In 2009, in the course of delivering the bad news, the radiologist told me I had to see a breast surgeon. I asked my PCP for a referral–he sent me to a surgeon at my community hospital.
At this time, it was thought I probably had Stage 3 breast cancer. The surgeon said I would need a mastectomy (big tumor in a small breast ruled out a lumpectomy) and probably chemotherapy and radiation afterwards.
Prior to scheduling surgery, the doctor sent me for a complete battery of imaging tests: MRI, CT, PET and bone scan. The bone scan revealed a small volume of mets to my spine. Surgery was canceled. My surgeon arranged a bone biopsy and referred me to a community oncologist in her hospital’s system.
I told the surgeon that for the sake of completeness I would be seeking a second opinion at an academic cancer center. She wasn’t very supportive of this. She made a case for staying within her hospital system. She said I would have difficulty scheduling appointments with specialists at the academic center–she, by contrast, could simply pick up the phone and easily slot me in to whomever I needed to see. She also said my records would all be at the same place, easily accessible. She assured me that “you can get everything here that they have at [the academic cancer center].”
Although I was still trying to wrap my head around my diagnosis, a faint alarm bell sounded when the surgeon tried to dissuade me from going for a second opinion. First, as a practical matter, I was a new patient: My patient record consisted of a diagnostic mammogram, an ultrasound, three imaging tests and her notes.
It was hardly a massive archive that would be difficult to collect and transfer into another institution’s electronic medical system. Second, as I waited in the MRI holding room–a windowless broom closet opposite the room housing the machine–it was clear to me that the small hospital did not, in fact, have the same things as the academic cancer center. Interestingly, last year, the surgeon’s medical group opened a state-of-art center dedicated to cancer treatment–so clearly there was room to grow and improve.
I went to see the oncologist my surgeon recommended. The oncologist and her colleagues worked out of a suite on the third floor of a building in an office park. Although I had a port, it could not be used to draw blood because there was no RN on duty. The patient exam room had mismatching chairs and there was no privacy curtain–after the oncologist spoke with me, she handed me a paper gown and turned her back while I put it on. Even though the doctor would soon be examining me, it felt very odd.
As the oncologist started her exam, she yanked the gown off of me, as though she were a magician demonstrating her ability to snatch a cloth off a table without disturbing the silverware, plates or glasses atop it. I was left clutching the paper table runner.
During our conversation, the doctor said she would need the results of the bone biopsy but for the moment, based on the pathology of my fine-needle biopsy, it looked as though I was ER/PR positive and HER2 negative. She said I would probably start on Avastin and Taxol and she proceeded to describe its side effects, with hair loss topping the list. I asked to see the chemo suite. No patients were getting chemo–I saw a small room with four treatment chairs.
When I went for my second opinion, I was very surprised the academic center oncologist said she would recommend I start on Tamoxifin and ovarian suppression. Later, at home, I found an article on the consensus on the treatment of metastatic breast cancer. It confirmed what the second opinion doctor said: You start with the least toxic option first.
I was furious. Why had the first oncologist recommended such a radical approach? Why had she told me to expect to lose my hair? Since I had a low-volume of bone mets it could be argued she felt an aggressive approach was warranted. It also could be argued the Avastin and Taxol to be given in her office was far more lucrative than a bottle of Tamoxifin procured from the local pharmacy for $25 per month.
When I saw the community oncologist again, it was as if she had never proposed Avastin and Taxol. She said nothing about either drug. She said she would recommend tamoxifen. I showed her my notes from our prior visit and asked her why she had made no mention of tamoxifen.
“Are you uncomfortable with the medical advice you’re getting?” she asked in a patronizing tone. As if she was saying “there, there, don’t upset yourself over this trivial detail.” She then gave me some papers for a clinical trial and asked me to consider participating. I knew this was not the doctor for me.
Early on, I relied on my brother, John, who is a physician, to help me navigate my care options. It was he who suggested the academic cancer center. I also asked him to explain the various tests and their results and cancer in general. He was very patient and helpful. I remember asking him to come to my second opinion appointment–I felt like I was going into a duel and he would act as my second.
As a newly diagnosed cancer patient, I was extremely vulnerable. I was emotionally fragile and entirely ignorant of the disease and my treatment options. I relied on my PCP to help me navigate an unfamiliar and frightening reality.
My now former PCP is a kind man and truly cares about his patients and serving our community. But over the past seven years, I have learned he is not especially knowledgeable about the broader world of cancer. Last year, I had to see him about some minor ailment. I was telling him the latest developments with my MBC.
ME: I needed to change treatment, so I a few months ago I went to Dana Farber for a second opinion.
FORMER PCP: Dana Farber? Is he any relation to Bill Farber?
ME: I don’t believe so…
In hindsight, I had a skewed opinion of doctors. My father inevitably referred to all doctors as quacks (although not to their faces). My mom, who died from inflammatory metastatic breast cancer in 1983, saw many doctors over the course of her two years of treatment. My impression was there was a language barrier with one of her doctors–she had great respect for all of them, but I don’t think she liked any of them.
Prior to becoming a cancer patient, I though you had to have clout to see the “best” doctors. I have found this is not the case. It may be true that some oncologists are heavily booked and that some clinicians don’t accept new patients, but you don’t have to be rich or important to see an outstanding doctor. I am fortunate–I have not had any insurance issues–I have been able to see the doctors I wanted to see.
Since I grew up in a small town, I though I would prefer a small-town doctor. I feared a big institution would be impersonal and potentially overwhelming.
Some years ago, I went for another second opinion at a different academic center. It definitely was not my cup of tea..stepping into the waiting area was like going to the United terminal at O’Hare after a 12-hour weather delay.
There were people everywhere–and even though it was a spacious room, it was jam packed. Rather than call patient names, each patient was assigned a number from an ATM-like contraption. When it was their to check in, patients were summoned by their numbers, using an automated intercom similar to the one TJ Maxx shoppers find at the checkout line: “Registrar Number Three! Registrar Number Three is now open! Number 674, please go to Registrar Number Three!”
But I have also been to two additional academic cancer centers with facilities that more closely resembled an upscale hotel lobby. I would never judge a practitioner solely based on his or her office space, but when you know you are going to be a regular customer, it is nice to go somewhere that doesn’t make you feel tense or claustrophobic.
Interestingly, I haven’t found any articles geared to patients explaining the difference between a community oncologist (either in private practice or part of a hospital network) and an academic center oncologist. I did find some written for the clinicians:
Choosing a care team is a decision that hinges on geography, insurance, disease complexities and personal preference. One size does not fit all. I really like Dr. Larry Norton’s Seven Tips for Getting What You Need. (“If you don’t like your doctor, your doctor probably doesn’t like you. Don’t stay with a physician with whom you’re not comfortable…”)
Most cancer patients are fiercely loyal to their medical teams–we don’t see some of our own family members as often as we see some of our doctors–it is devastating when an oncologist someone has seen for years on a regular basis retires or moves away. And of course, we always want to reinforce the validity of our own decisions.
We need to believe our individual doctors are the best because we need them to be the best.
I wanted to help my family and friends understand what my appointment and treatment are like so I made this video.