GRACE :: Coping with Cancer / Social Work



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


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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Caregivers: The Most Important Care Providers for Cancer Patients



Behind every patient with cancer, there are caregivers. In the medical literature, this caregiving is referred to as “informal caregiving,” which simply means that it is not paid caregiving from a home care agency or care provided in a skilled nursing facility. Informal caregiving provides the majority of care to patients in this country; if informal caregivers were paid, their value would exceed that of all home care agencies and skilled nursing facilities combined.

What do caregivers do?

The better question is, what are they not doing? In a 2010 study from the University of Minnesota and NCI, caregivers of lung and colon cancer patients were surveyed regarding their activities and stress and resources; these were caregivers who provided 50% or more of their loved one’s care. What they found was that caregivers, without formal training, were having to monitor for treatment side effects, manage troublesome symptoms like pain and nausea, administer medication, and decide on when to call a doctor or give medication. This is evident here at GRACE with the very thoughtful questions and discussions that caregivers have on behalf of their loved ones. Half of the time, these caregivers were also working their own jobs; 1 in 5 had health problems. In studies of caregivers not specific to cancer, caregiver stress leads to more healthcare, both for themselves and for the loved ones for whom they care. In comparing caregivers to people who don’t do caregiving, caregivers of patients with cancer have a higher incidence of mood disorders, i.e. depression and anxiety, as well as stress-related health problems. Compared to caregivers of patients with Alzheimer’s, a disease known to carry significant caregiver burden, caregivers of cancer patients experience the same amount of psychological stress. Continue reading

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


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?”


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?


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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