Sometimes we just don’t realize how good we have it.
So it was last week at the San Antonio Breast Cancer Symposium. Each day at noon clinicians would snag a boxed lunch and fill Ballroom A. The lines at the microphone were long as these doctors brought their most challenging cases in front of a highly regarded, multidisciplinary panel of experts. Questions ranged from the appropriate use of biomarkers to when to cease treatment. One “case” was a woman who was diagnosed during pregnancy, another about the need for a biopsy for a newly metastatic diagnosis.
Sandwich in my own lap, I sat with my friend AnneMarie. I’ll admit we weren’t just sitting in…our wonderful and very wise friend CJ, President of METAVivor (the only national organization I know of exclusively focused on metastatic breast cancer research) served on the panel. Her focus was the ever-important “quality of life” or QOL issues. We were there to support her, as well as to satisfy our own curiosity.
In the middle of the session I leaned over and mentioned in passing that it reminded me of my own multidisciplinary consult.
“WHAT?” she asked.
I told her about my day at the Revlon/UCLA Breast Center Multidisciplinary Program, and I was handily reprimanded for not having yet blogged about the experience and the center as a model for care. So here we go:
I did quite a bit of work in advance of starting treatment – any number of consults and many questions were answered by the time my anxiety rose to the level of needing to DO SOMETHING. I seemed to have consensus around and confidence in starting a course of neoadjuvant chemo, which is to say starting my chemo before surgery.
There were some remaining questions, however. 87 of them, in fact.
The Revlon/UCLA Breast Cancer is a world-class institution. Founded in the early 90s by Dr. Susan Love (now of the Dr. Susan Love Research Foundation). When you walk in the door you immediately sense the whole-person approach to care that they provide. Warm, inviting and decidedly not “clinical,” the art and architecture convey a sense of calm.
And there I was, the morning Passover began in March 2002. Prior to my arrival I had spent a couple of days running around town collecting, then delivering every relevant anything I could put my hands on: pathology reports, slides, scans, scan reports, bloodwork….
Over the course of the morning I would meet with a medical oncologist, a breast surgeon, a radiation oncologist, a plastic surgeon and someone from psycho-social support. They see 4-5 patients each morning, and the staff rotates through each room. While we go off to lunch, the medical team meets, along with a pathologist, to address each patient’s situation, make recommendations and respond to questions. After lunch one member of the team returns to meet the patient, provides the team’s assessment and wraps up. It’s quite a day!
The staff at the clinic had advised me to bring a guest or two along; there would be a great deal of information and it helps to have someone to ask questions, take notes, and make sure you understand.
Speaking of questions – boy was I ever prepared! In the days before my consult I started writing out the questions I had, from how many cycles of chemo to complete before I scheduled my surgery, to my surgical options, to the post-surgical ramification of radiation on various reconstruction options.
It got a bit unruly, my list of questions. So I divided by specialty ..and in the end, I arrived at the clinic with my husband, my oldest friend ever, Lisa, and six copies of my 5-page, 87-question list. I was leaving nothing to chance.
When we arrived we were warmly greeted. After a brief orientation we were escorted to an “exam” room, which, while I imagine housed all the traditional exam room needs, was warm, comfortable, and even large. Not a hospital gown in sight! But there was a tape recorder (yes, back in the day…) which we were urged to use to record our meetings so that we would have the information any time we needed it. One by one the doctors came in for their consults, and were handed my list of questions for discussion…
I dare say some of the docs were a bit overwhelmed by the whole thing (which is to say they thought I was nuts) and as expected there weren’t answers to some questions (and no, I didn’t ask the obvious and unanswerable…). But I assure you I maximized my use of the day, and it added greatly to the confidence I had moving forward. They team reinforced the decisions I had already made, and gave me direction on the choices to come.
Without exception everyone I encountered was thoughtful, sensitive, supportive and clearly devoted to their work.
So the challenge is this: I have no idea what it costs to bring together a team like this, to run a clinic that can provide a host of answers within a context, with sensitivity to how their recommendations play out across the spectrum of cancer care, and an understanding of how their answers impact other areas of patient care. I do know that it provides enormous patient benefit, in terms of providing knowledge and answers, as well support and confidence. I know everyone should have access to this kind of care!
I live in Los Angeles, in the shadow of at least four world-class cancer centers. I know our resources are vast. I know how lucky I am. But I also wonder, with the advent of “telemedicine,” whether comprehensive, multi-disciplinary team
This is a model that can and should be replicated everywhere! And as always I come back to: what can we, as advocates, do to make it happen?