GRACE :: Coping with Cancer / Social Work

Dr West


Dr. West attended Princeton University before heading to the University of Cambridge on a Fulbright Scholarship. He then returned to the US to attend Harvard Medical School, where he was honored as a Howard Hughes Medical Institute Research Fellow. He did his internship and residency training at Brigham & Women’s Hospital in Boston before moving to Seattle for his specialty training at the Fred Hutchinson Cancer Research Center/University of Washington, where he served on faculty after completing his fellowship in medical oncology. Since that time, he has fused his commitment to patient care at Swedish Cancer Institute in Seattle, focusing on thoracic and genitourinary oncology with a commitment to clinical research as well as entrepreneurial ventures. While overseeing a cancer clinic that draws patients from all over the world, he offers a wide array of clinical trials and leads several, including serving as Principal Investigator of several phase II national trials with the Southwest Oncology Group. He has emerged as a very rare oncologist based in a private practice setting yet remains a nationally to internationally recognized expert, thought leader, speaker and writer. Dr. West has also pioneered many new ventures that exercise his interests in social media, new educational platforms, and even marketing. He founded Go West Health Care Consulting in 2004, which has flourished into a very successful company that enabled him to pursue roles in developing of a wide range of oncology products, lead dozens of pharmaceutical advisory boards, speak and write for professional and patient oriented audiences, help in developing educational and marketing materials, serve as a medical director for a CME company, and even work as the dedicated oncology consultant to a large marketing agency. He is widely recognized as an oncologist who understands the complex market forces from scientific background to commercial development strategies to current and future practical market forces within the oncology space – the only oncologist who has delivered a TEDx presentation and attends not only ASCO but TEDMED, South by SouthWest interactive, and the American Telemedicine Association’s annual conference. Finally, recognizing that patients and caregivers are a remarkably underutilized resource and critical voice in medical decision-making, Dr. West developed OncTalk.com in 2006 as a mechanism to provide very timely, specialized free information about cancer directly to a global patient community. This effort transitioned to become the nonprofit Global Resource for Advancing Cancer Education (GRACE) (www.cancerGRACE.org) in 2007, which has continued to grow rapidly, now integrating participation from many expert physicians and other health care specialists and reaching tens of thousands of people in over 130 countries each month. His efforts have provided expert content in a wide range of formats, including blog posts, audio and video podcasts, and an interactive discussion forum that have led to his being recognized as an international leader in the growing role of the educated patient as a means of shaping medical care and ultimately improving patient outcomes. “You are truly a Godsend -- I am thankful for the support and compassion you offer people throughout the world. I appreciate it more than words can convey.” —GRACE Member Linda P.

Upcoming #LCSM chat: What do patients want and need from online networks and their doctors?

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GRACE recently held a very successful patient forum on the lung cancer associated ALK rearrangement and treatments for it, and it began with our focusing on how patients and caregivers sought information and work with their doctors.  Though it may have been reflective of the specific audience there, who came from a specific online community, I was struck by how much support and information patients gained from each other. I knew that patients could be remarkably sophisticated and share detailed knowledge at a level that rivals and may well exceed the level of conversation among cancer specialists, but it was remarkable how many of the patients and caregivers there expressed that there is a particular expertise and credibility that comes from gaining insight from someone who has traveled down the same road as you. In this sense, patients with a deep knowledge can convey an understanding and provide a hope that even the best doctor can’t offer: living proof that you can know this and do as well. 

In preparation for this program, some of us planning this event also debated whether to convey survival data in the usual tables and figures that are shared among oncologists.  Specifically, does a detailed discussion of statistics confuse people, scare them, or inform them?

Also, some patients expressed a strong desire for self-determination of their treatments, while others conveyed that above all else, what they’re looking for from a trusted oncologist is a clear recommendation of a best way to proceed based on their knowledge.

Understanding that different people probably fall all along a spectrum, our upcoming #LCSM tweetchat on Thursday, February 27th at 8 PM Eastern, 5 PM Pacific will focus on the following open questions:

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A Day in the Life of an Oncologist: The Sequel (i.e., Afternoon Clinic)

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Following a busy morning, I grabbed a quick lunch and, as usual, ate quickly at my desk while completing transcriptions and catching up on e-mail before diving into the afternoon. My first patient of the afternoon was a 75 year-old gentleman with prostate cancer who has done very well on combined androgen blockade for many years. Though his PSA has been rising very slowly, he continues to feel well, and his PSA remains low enough to defer on making any changes. I explain to him that even though we may need to switch to a different treatment approach in a few years, the slow rate of rise after so many years on his current therapy makes it very likely that he’ll do very well on subsequent therapies, whenever we pursue them. There’s an excellent chance that his cancer won’t limit his survival. It’s important to remind ourselves that we have a risk of over-treating as well as under-treating cancer, and this concern permeates management of prostate cancer, which can often follow a very indolent course even as a systemic disease.

In the next room is a very vital 83 year-old woman who underwent surgery for a stage I adeno/bronchioloalveolar carcinoma in October of 2009. Another physician had done testing for serum tumor markers in her just after surgery, showing an elevated CA-125 level, which is of unclear significance, but the other physician told her at that time that she probably had residual viable cancer. I explained that I didn’t think this was necessarily the case; moreover, I felt that her risk of recurrence was low enough that I recommended against adjuvant chemotherapy. Sure enough, her CA-125 (which I don’t typically check in the post-operative setting) drifted back down to the normal range with nothing but time, and on today’s visit she returns for a surveillance CT that shows no changes and nothing that suggests recurrence. This scan is a cause for celebration, though she remains anxious about recurrence. Her CA-125 level remains reassuringly low, though I send this test only because of the precedent that was established: her case only illustrates the perils of sending studies that we can’t interpret.

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A Day in the Life of an Oncologist: “How Do You What You Do?”

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On the rare occasion I’m in a social situation with people who aren’t in medicine (yes, I’m sure you know I don’t get out much, so this is largely from remote memory), the most common question that follows my answer to what I do for a living is, “How can you do what you do?”. People imagine the obvious low points of telling people about a new cancer, about delivering bad news and discussing people’s difficult cancer-related symptoms and potential to decline despite our best efforts. It’s fair to wonder what keeps us going. So I thought I’d provide a brief sketch of a day in my clinic, which offers several ups along with the downs everyone might envision as dominating life in the oncology clinic.

Work starts at about 7AM. At least the drive in avoids the big traffic. I review my schedule, briefly reviewing the recent records of the people coming in that day, including a more detailed review of the records of new patients, including reviewing their scans that are usually delivered in anticipation of their arrival in my clinic. Check e-mail, sign head shots in response to fan mail*, etc. (*in truth, it is perhaps technically more accurate to say that I sign dozens of orders for prescription refills and lab orders).

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Cancer Treatment: How and When Do We Reach a Point Where More Treatment is Too Much?

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This topic is very central to treating cancer, but that doesn’t make it easy. It’s not one that I think is taught in medical school, but rather one that is learned over the course of directly caring for patients over time. It’s incredibly complex because doctors have remarkably different styles in their approach, and even the same doctor may work very differently with different patients. For something that is so integral to the practice of oncology, the topic of how and when do we get to a point that further anti-cancer treatment isn’t advised is a murky mess.

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Leah de Roulet, Social Worker, Discussing Challenges with Coping with Progressing Cancer

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This is the second part of an interview I did with Leah de Roulet, Oncology Social Worker, in which she discusses some of the leading practical as well as emotional challenges facing patients and caregivers as a person progresses with cancer. Whether we’re talking about helping a patient recognize that they can no longer live independently or coming to terms with an anticipated death, I learned that these problems are difficult for everyone and that there are few situations for which there are clear answers.

Although there is a video version that will stream to people who have subscribed to the feed for the social work vertical, this interview doesn’t have any associated figures other than a title slide, so I’m only providing the podcast link here to the audio version (subscribe to the audio version feed here). Click to listen now.

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