Physicians and dentists generally send those patients with suspected or confirmed cancer to oncologists*. Referrers can be primary care doctors, gynecologists, endocrinologists, pulmonologists, gastroenterologists, otolaryngologists, dermatologists and others. Not uncommonly, at the time of the initial visit with a surgeon or one of the other oncologists, the patient is unclear as to whether they have a malignancy. Many of them have been told, but they did not hear what they didn’t want to hear. This reflects something I wrote in an earlier blog – the brain is an effective filtration system for frightening information.
In situations in which there is suspicion but no proof of cancer, the referring doctor may have told the patient, “You have a problem,” or “You have a tumor,” or “You have a growth,” but often the realistic possibility remains unclear or even has been denied in the patient’s mind; and let’s not forget (this should not come as a surprise) that many doctors seek to avoid delivering bad news. While that might seem like an abdication of one’s responsibility, it’s actually correct for them to skirt around the cancer or malignancy words until proof is actually established. In most patients, the use of slightly evasive terms such as “a problem, a tumor, a growth” is enough, unless for some reason, the next step of arranging for an oncologist is inordinately delayed, in which case it is more difficult to be vague. However, even if such is not the case, the patient will sometimes push the referring physician to speculate – this tricky conversation should be avoided! If the patient asks directly, “Could it be malignant?” the physician should be honest with a simple yes—after all, why else would the patient be referred to a cancer specialist? The physician’s mere concern raises the patient’s anxiety level, and it is generally wise for the referring doctors not to speculate on likelihood or other specifics. One is tempted to comfort such a patient, but on many occasions, the attempt introduces unrealistic expectations or conversely, greater anxiety. In certain circumstances, however, it is appropriate for the physician to offer general data that is favorable and that might give a patient cause for hope during this interim period. For example, approximately 80 percent of “incidentally” discovered breast masses in women turn out to be nonmalignant. This is a widely known fact, but a well – timed emphasis on it can be emotionally helpful to a frightened woman. Similar optimism is possible in a patient with a parotid (salivary) gland tumor, in which about 75 percent are benign. Quoting such generic data when sending the patient for a diagnostic procedure or to an oncologist is different from specifically making predictions about that particular patient’s mass. In the case of a potentially ominous tumor—a pancreas mass for instance— no real value is gained by quoting such generic data i.e. the dismal statistics associated with this particular tumor. In many cancers, the probability of cure is directly related to stage (degree of advancement), and in the process of quoting statistics, the bad as well as the good has been included in the calculus – that too should be considered in the attempt to help with generic data. All things considered, better the patient be properly worked up and staged before the prognosis is bantered about. Then, and only then, is it wise to discuss real data and specific outcomes i.e. prognosis.
Never should any of the doctors in the chain of events underestimate the visceral response in these patients; once the cancer word is mentioned, fear takes hold and the patient can become relentless in asking questions that the referring physician is simply unable to answer. On the other hand, many patients won’t ask for speculation or predictions out of fear of hearing dreaded news – others will. In an effort to avoid this trap, the referring physician’s intentional vagueness is understandable and appropriate, and in fact, gives the oncologist the latitude to craft a more positive and factually based discussion. No matter how relentless the barrage of unanswerable questions coming from the patient, the referring doctor must find a way to deflect what might complicate matters overall, while never be dismissive. It must be understood that fear is catalytic, and the most effective response is to make prompt arrangements to see the oncologist. This truly deserves priority status. At the risk of being dogmatic, let me be more specific!
Extraordinary circumstances aside, it is unacceptable for there to be more than a one-week delay in seeing the one person who is able to answer the question on everyone’s mind. The same can be said for delays in obtaining a biopsy and, once done, waiting for the result. This can be a period of emotional torment, and I have been appalled to hear of delays of eight to ten days that some patients are asked to endure without an answer. Happily, this does not occur frequently. For those readers unfamiliar with the technologic capabilities of modern diagnostic laboratories, the turnover time for a cytology** or pathology*** decisions is one to two days, unless special staining or molecular techniques are required. In some other circumstances in which diagnostic uncertainty exists, consultation with other cytologists or pathologists more than justifies delay, some of which can be extensive. Most of the time, however, the period needed for diagnostic completion is short, and it is insensitive to drag this out merely for system convenience or someone’s fixed schedule. Importantly, if there is to be a delay, the circumstances should be explained to the patient.
Frequently, lumps and bumps – breast masses, swollen lymph nodes – skin lesions, some lung lesions, kidney and liver masses, and others—can be analyzed by needle aspiration and cytology, the arrangements for, and results of which, can be quickly concluded. Even when a more extensive biopsy is indicated, the initial fine needle aspiration can often provide a preliminary diagnosis of malignant or benign. When surgical biopsy is required, some delay is to be expected; however, real effort should be made to expedite the process. Obviously, the time parameters I cite are arbitrary, and depending on the situation, both the wait for consultation and the wait for the reports can be less or more. In general, however, whenever possible, the sooner the question is answered the better for the patient. We should always be mindful of the emotional agony of uncertainty during this period in limbo****. The reader should be clear: I am not promoting time acceleration because of concern for tumor growth—rarely is there a hurry to start treatment. Rather, efficiency and the perception of motion are comforting and reassuring to a frightened patient who is anxious to get on with their lives.
Thoughtless and insensitive delays are entirely different from the time lapse that almost always follows definitive cancer diagnosis—that period in which planning and arrangements are being developed by an oncology team. Ideally, by the end of this period, the patient has a plan of action, and things are moving forward. Importantly, during that time, the patient is occupied with a variety of consultations with the other members of the team, such as other oncologists, nurse educators, nutritionists, dentists, psycho-oncologists, social workers, and others. In the cancer management world of today, the sine qua non of excellence is multidisciplinary care, extraordinary arrangements and preparations, treatment decisions and planning in multidisciplinary tumor boards, and an overall seamless interaction between patient, family, and cancer team. The development and implementation of a game plan is paramount.
While it is appropriate for the referring doctor to avoid an unpleasant cancer conversation, such is never the case for the oncologist to whom the patient has been referred. Unfortunately, good communication and the transmission of realistic information are not always accomplished. This situation can reflect a lack of concern of some physicians, or in some cases, a basic lack of a doctor’s communicative skills. Much as when a teacher tries to judge the effectiveness of what has just been explained, the oncologist must be able to recognize a facial countenance that indicates a failure to understand. When dealing with cancer patients, to do otherwise is unacceptable. In future blogs, I will address the all-important topic of interpersonal interaction between patient and oncologist, much of which is tied to the latter’s communicative skills.
What I call the cancer experience – the suspicion, the confirmation, the workup, the treatment, and the follow-up – is a continuum – a journey, if you will, that involves a sustained commitment by a number of individuals. The emphasis of this blog has been that lonely and scary time between suspicion and proof, up to the stage of treatment.
* Oncologist denotes a cancer specialist -surgical, medical (chemotherapist), or radiation (radiation therapist) – that specialize in Oncology, the study of cancer.
** Cytology is the study and identification of cells, usually obtained by needle aspiration or scraping, as in a PAP smear. Cytologists are pathologists who have sub- specialized in this very important technical subspecialty.
*** Pathology is the study of actual tissue biopsies and specimens by a pathologist.
**** The author asks the indulgence of those Roman Catholic readers who are aware that the term Limbo as a place is of historic interest only; that is to say, it was a belief of a bygone era in church history. The word itself, however, is generally accepted in the language as meaning “a period of inaction”, and as such, has found residence in our vocabulary.
Roy B. Sessions, MD, FACS Seabrook Island, SC