Editor's Note  Neil Love, MD Perspective from another world

Every person who has unexpectedly stepped off the edge of this planet into the bottomless pit of life-threatening illness knows that the view from down there is very different and that no amount of bargaining with whatever or whomever one believes in changes the reality that to survive, it is essential to be able to reach inside to find faith and courage.

Juliann Smith had already faced this frightful challenge as a college student when she was diagnosed with Hodgkin’s disease. Fortunately, she was successfully treated with mantle irradiation, and her positive experience with a knowledgeable, kind and trustworthy medical oncologist led to a career shift from veterinary to human medicine. Two decades later, just like the physician who impacted her life when she was younger, Dr Smith was a very busy and well-respected medical oncologist in Southern California.

Dr Smith loved her practice and found it impossible to turn away patients. Her day started early and ended late, and she lived and breathed cancer medicine 24-7-52-365. Memories of the scary days of her youth when she was forced to peer anxiously into a linear accelerator had faded, but in 2000, at the age of 44, she once again plummeted into that dark hole, this time upon palpating an abnormality in her breast.

Some days later, Dr Smith — lying prone on a mammotomy procedure table — observed the face of her radiologist transform into a black cloud after inserting a needle into what was a gritty, highly suspicious mass. Within days, Juliann was confronting a node-positive, ER-positive, HER2- positive adenocarcinoma.

On the enclosed audio program, Dr Smith shares her story, her perspectives on decision-making in medical oncology and how this experience as a patient altered her approach as a physician. One might argue that in 2000, when she underwent therapy, the adjuvant systemic treatment path she chose (AC followed by TCH and an aromatase inhibitor) was not fully evidence-based.

The ATAC data had not yet been reported, and years later, there would still be questions about optimal endocrine therapy for patients in Dr Smith’s situation (ER-positive, HER2-positive, node-positive disease in a premenopausal woman who ceases menstruation with chemotherapy). In terms of additional therapy to attack the other molecular target (HER2), in 2000, of course, the spectacular results of the adjuvant trastuzumab trials were but a glimmer in our eyes. In the conversation below, Dr Smith explains why these decisions made sense to her then and now.

I don’t quite know what to make of Dr Smith’s perspective, but one must respect her viewpoint and understand that many other rational, balanced people feel the same way. Oncology research commentators are now spending a great deal of time pondering the clinical relevance of a number of new trial data sets. The issue of healthcare costs for these therapies is a topic of increasing interest. But for the moment, it is enough to just listen to a colleague tell her fascinating, gut-wrenching and all too familiar tale.

— Neil Love, MD
NLove@ResearchToPractice.net

DR LOVE: What was your reaction when you were diagnosed with breast cancer?

DR SMITH: My entire world stopped. It was as if there was nothing else around me — as if everything just fell apart, and I knew that I had to do whatever I could to get rid of this cancer — whatever it took.

When I was having the breast biopsy and the radiologist did the first pass, she said, “This is definitely cancer.” At that point, as I was lying on the table, the faces of women with breast cancer whom I had taken care of started going through my mind. And I started thinking of a series of women who had died at very young ages — in their thirties and forties — women I
had basically taken through the disease.

I am still a believer in evidence-based medicine, and I try to have an evidence-based practice, but when it came to my own care, somehow that changed. While I wanted to do what was evidence based, I also was willing to go beyond that. I wanted to give myself whatever advantages I could, whatever made sense within the oncology literature.

I was very concerned about the HER2 positivity and wanted to address that, and trastuzumab really was the only way to truly get at that specific component of the malignant clone of cells. So I elected to go with trastuzumab and aggressive endocrine treatment and chemotherapy.

I ended up in the hospital three times. I was septic and actually had congestive heart failure at one point. But somehow, that was all okay, because I knew I was doing the maximum that I could, so that hopefully, I wouldn’t have to face breast cancer again. I didn’t care how sick I got, as long as I did everything that I could possibly do.

DR LOVE: I see you’re receiving oxygen. What’s that for?

DR SMITH: About two years after the chemotherapy, I developed very severe aortic and mitral valve disease and ended up having to have both valves replaced. And probably because of the mantle irradiation, I also developed premature artherosclerosis and had a 90 percent left main disease. So I got all that taken care of at one time. Surgery was complicated by sort of an unmasking of what has turned out to be very severe restrictive lung disease, which, presumably, is due to the mantle irradiation 20 years ago.

DR LOVE: Do you think the congestive heart failure during adjuvant therapy was related to the trastuzumab?

DR SMITH: I’m not sure that the doxorubicin was really out of my system when I received trastuzumab. I think that in my situation, it was a domino effect that included the doxorubicin, trastuzumab, bad valves, coronary disease and very severe restrictive lung disease.

DR LOVE: How has this experience changed your perspective on practicing oncology?

DR SMITH: It’s changed it dramatically. It’s now very difficult for me to give toxic chemotherapy to a patient, because I know what they’re going to feel like. I have a great deal of empathy when I have to treat someone with, for example, TAC chemotherapy. I know the day-in and day-out sensation of being so incredibly fatigued that you can’t get out of bed. I know what the anemia feels like, the nausea, the malaise. And it’s very hard to know that I’m putting a woman through this, but I have to focus on the fact that we’re hopefully getting rid of their breast cancer.

DR LOVE: How do you feel about the treatment decision you made for your breast cancer?

DR SMITH: I think it was the right decision. I’m very comfortable with it.

DR LOVE: What’s your perspective on the way decisions are currently made in oncology in general?

DR SMITH: Most oncologists seem to be trying to practice evidence-based medicine, but it’s such a complicated field that they are really all over the map in terms of treatment choices. I don’t see much consistency from one oncologist to the next.

DR LOVE: How did you feel when you found out about the new data that’s just come out on the use of adjuvant trastuzumab, showing that it works?

DR SMITH: I was very glad to see that. I feel that my beliefs were confirmed.

DR LOVE: How has this experience affected the way you communicate with patients?

DR SMITH: The most important thing is to give them a chance to talk about their concerns and fears. In the past, my style was basically to give patients a lot of information and say, “This is what we’re going to do,” and just kind of go through it all. Now I stand back and say, “This is what I would suggest, but what do you think?”

DR LOVE: Your case really brings up the whole issue of how much evidence you need in order to make a decision to embark upon a therapy. People talk about women with breast cancer wanting to receive chemotherapy for a one percent improvement in survival, but it’s so hard to grasp. And you wonder whether or not the fear of recurrence is actually causing people to make illogical decisions.

DR SMITH: It may seem illogical to someone who doesn’t have to live with cancer. But one percent is important to a breast cancer survivor. I think most cancer survivors would be willing to go through a significant amount of toxicity for a one percent benefit, especially younger patients. I don’t know that this would necessarily apply to 75- and 80-year-old patients, but certainly people in their forties and fifties would definitely be willing to subject themselves to a lot of toxicity.

DR LOVE: Medical oncology practice has evolved to be very focused on the risk-benefit numbers, the Ravdin Adjuvant! Online model, et cetera. Many oncologists pulled back from the concept of “let’s be as aggressive as possible even without trial data” because of the high-dose chemotherapy/stem cell debacle.

DR SMITH: My experience was that when you’re diagnosed with cancer, the numbers don’t matter and everything becomes 100 percent. It’s you against the cancer. I’d be interested to take a survey of the women who went through high-dose chemotherapy with stem cell transplant and see if they have regrets. I suspect they probably don’t.

I think that, as oncologists, we do have a responsibility to lead our patients through the quagmire of all the statistics and evidence-based medicine and try to be their guides. But when you’re looking at it from the patient’s perspective, you don’t hear a lot of that. And I think all that really goes through their mind is, “Tell me what will cure me.”

I would like to add another comment and that is how incredibly important my oncologist was to me, and how I really felt that my life was in his hands. I had complete and total faith in what he advised me to do. It’s a remarkable gift our patients give us.

DR LOVE: What do you mean by that?

DR SMITH: Patients turn their lives over to us and put their faith in us and follow what we tell them to do. They almost elevate us to the level of God, because that’s one of the ways of dealing with the intense fear that cancer brings. You have to believe that somebody is going to be able to walk this path with you and has the right answer and is certainly going to lead you to find the best answer that can be found.

I actually decided to go into oncology when I had Hodgkin’s disease when I was 21. I was under the care of a wonderful oncologist, who actually is still practicing. He inspired me — he was just such a confident, intelligent person, and when he talked to me and we made eye contact, I just knew I was going to be okay. I could just tell from his manner.