Moving from Breast Cancer Patient to Survivor: Smoothing the Transition
The title of a 2005 study from the Institute of Medicine and National Research Council, “From Cancer Patient to Cancer Survivor: Lost in Transition” sums up in a few simple words what many of us have known for years: once we’re done with active cancer treatment, it’s a confusing world out there.
Not that cancer treatment itself can’t be a bit mystifying. The number of potential life-or-death decisions you, the patient, are called upon to make is daunting. The schedule of treatments is intense. And you need to learn a brand new medical vocabulary very quickly.
But through all of that, you feel you have a couple of “go to” providers: your oncologist, and your surgeon. Feeling crummy after chemo? Call the oncology nurse. Wondering about that extra lump in your ribcage after reconstructive surgery? Ask to see your surgeon. During active treatment, there’s a clear chain of command.
It’s after the oncologist and surgeon have done what they can to kill your cancer that the REAL confusion starts. Say you spend a couple of days moving rather gingerly due to aching ribs. Do you call your oncologist (has it spread to my bones?), your surgeon (latent nerve damage?), or your PCP (did I simply pull a muscle?) Or what about that shortness of breath you’ve noticed? Is it allergies… a mild case of asthma… or potential heart damage from the chemo? Many of us are so guilty about possibly over-reacting, and so confused about who treats what, that we simply ignore our discomfort and soldier on. And, in the case of cancer, that’s not good.
Now, thanks to a growing movement from within the medical community, a clearer light may soon illuminate our post-treatment path. The American Society for Clinical Oncology (ASCO), a 25,000-member-strong group of oncologists, oncological radiologists and surgeons, oncology nurses, and other practitioners whose main focus is cancer care, has put its considerable heft behind a very new thrust in cancer treatment: survivor care. ASCO chose “Advocating Survivorship” as part of the theme for its 2006 annual convention and, in addition, chose as its president–for the third year in a row–a cancer survivor/oncologist.
In late September of this year, ASCO posted on its Web site easy-to-understand checklists accessible to cancer survivors. The two sets of checklists developed thus far–one for colorectal cancer survivors, one for breast cancer survivors–are designed to make the survivor’s interaction with every doctor he or she sees–oncologist, PCP, specialist–more effective. One checklist, summarizing the patient’s complete course of treatment, is filled out by the oncologist. For breast cancer survivors, the simple double-page summary includes such info. as stage, type, lymph node involvement, ER- and HER2- results, type of chemo and dates received, length and ending date of radiation received…in other words, everything you ever wanted to know about your cancer treatment but forgot to ask. Or were told, and forgot to write down.
The other checklist, a years-long general schedule of future exams (mammograms, gynecological tests, oncology appointments, etc.) is filled out by the patient, with help from her oncologist. This checklist also includes long-term symptoms to be aware of. The survivor brings both of these checklists to every doctor’s appointment; never again will a busy doctor be confronted with a daunting 12”-tall stack of X-ray and blood test results, treatment summaries and prognoses, and no time to read them.
While ASCO is the largest and most influential group to date to espouse this checklist system, individual oncologists have been developing and using their own aftercare checklists for several years. Dr. Aziza Shad, an oncologist at Georgetown University Hospital, noted in a September 25 Associated Press article, “I personally think it’s the responsibility of every treating oncologist to have this information available. You did the treatment… Your responsibility is also the aftercare.” Till now, it seems most oncologists have considered their job 95% done once the patient is through active treatment. Now, that percentage may shift more towards the center. With more and more of us surviving cancer and living for years with its sometimes considerable after-effects, someone in the medical community has to continue to care for us–not just as “normal” patients, but as cancer survivors. And it looks like our oncologists are stepping up to the plate.
This is Part Two of a four-part series on cancer survivorship.
Coming up next... Cancer Survivorship: A Guided Approach to the Years Ahead