By Heather Millar
I have an appointment with my primary care doc in about a week. Luckily for me, I won’t have to recite chapter and verse about my cancer treatment. I was treated for breast cancer at a huge academic medical center, University of California – San Francisco, and have made a conscious decision to get all my medical care there: gynecology, dermatology, vision, the works.
One of the reasons I get all my care at UCSF is that I want the left hand to know what the right hand is doing. A cancer diagnosis ratcheted my medical issues from plain vanilla to complicated rocky road. I don’t want one doc to be unaware of what the other docs are doing. I want all of them to be up to speed on my cancer history and prognosis.
Another reason I’ve made UCSF my one-stop-shop is that the medical center is gradually switching to electronic records. So now most of my docs can just pull up my whole medical history—type of chemo, number of infusions; type of radiation, number of treatments; pathology, lists of all my meds past and present—in a couple seconds on any computer at the university.
Not every cancer patient or survivor has this luxury of coordinated care. First of all, not everyone lives in a big city with a comprehensive, academic medical center. Second of all, life happens: people move, change jobs, switch insurance plans.
If this describes you, then you need to take matters into your own hands. Whether you’re living with cancer or hoping never to deal with cancer again, you should ask your doctors to help you build a “Survivorship Care Plan.”
Cancer patients have specific and long-term issues: For instance, my past chemo treatment heightens my lifetime risk of leukemia. The radiation to my left breast has created skin rashes of various kinds. I still struggle with fatigue (feeling a bit sleepy as I write this post, actually). The estrogen-suppressing drugs I take come with a whole grab bag of side effects. Since breast cancer likes to leap to the brain and the bones, I need to be on the lookout for bone pain and for neurological symptoms like blurred vision and headaches. That’s not all, and that’s just me.
A typical Survivorship Care Plan includes clear, defined steps to guide post-active treatment care. It should include a treatment summary, guidelines for post-treatment screenings, a list of symptoms to look for, and a list of support resources. It should identify any late effects (side effects that may present years after treatment) or long-term effects (side effects that become chronic after treatment). You can view a short Institute of Medicine film about Survivorship Care Plans on YouTube.
If all this sounds a bit overwhelming, fear not: Survivorship Care Plan Builder software is now available for free thanks to a collaboration of the National Coalition for Cancer Survivorship, the UCLA-LIVESTRONG™ Cancer Survivorship Center of Excellence, health benefits company Wellpoint, Inc., the Oncology Nursing Society, and Genentech, one of the world’s leading biotech companies, and the manufacturer of the monoclonal antibody I took for a year.
You or your doctor can download the software here. Or, you can download and print a hard copy of plan forms for breast and colon cancer. You can also browse the library of documents specific to surviving specific types of cancer.
The tropical, “path into the horizon” motif of this “Journey Forward” effort is a little annoying. Cancer survivorship is not a Hawaiian vacation! But the tools offered here are extensive and excellent: utilities such as a regimen library, body mass index calculators, and checklists to reduce the labor of data entry. Your medical history can then be printed out, emailed, or burned onto a CD if you have to move or change doctors for some other reason.
Doctors can download the software and customize the survivorship plans with their practice logo. Since the plans produced with this software will reside on your doctor’s computer, they remain completely private.
Cancer patients can’t afford to be passive. Ask your oncology team to check it out and do a plan for you.