Louis J Auguste, MD, MPH, FACS, FSSO
Breast cancer remains the most common cancer diagnosed in women in the United States. It is estimated that in 2024, 367,220 women will be diagnosed with invasive or non-invasive breast cancer, representing 1 in 8 women. It is encouraging that over the past few years the overall 5-year survival of women with breast cancer has risen to 90 %. This dramatic improvement over the past 50 years can be attributed to earlier detection, identification and elimination of some known risk factors and more effective forms of therapy.
The keys to this success rests on this delicate balance between stage at diagnosis, tumor biology, the appropriateness of the therapy offered and delivered on one side and on the other side, it depends on the patient’s biology, her genetic make-up, her ability to access care, her compliance and her tolerance of the treatment.
Beyond these generalities however, the journey of a woman newly diagnosed with breast cancer is a singular and personal experience that deserves careful considerations. That journey starts usually when she undergoes her annual screening mammogram, which is now officially recommended by the USPTF to start at age 50, although the American Cancer Society, the American College of Radiology, the American College of Obstetrics and Gynecology, among others still maintain that proper screening should start at age 40.
In addition, these recommendations should be modified for women with first degree relatives who have had premenopausal breast cancer and for African American women as well, who tend to develop cancer at an earlier age. The customary post-mammography period of anxiety is followed by either a negative report or unfortunately, that of a malignant diagnosis.
A successful outcome during this journey does start from that first day. How that news is broken to the patient can trigger panic, denial all the way to refusal of treatment or enhance the patient’s determination to defeat that disease. The revelation of the diagnosis, should be preferably done by a physician familiar with the intricacies of the diagnosis and the options for management. I believe that it requires a face-to-face encounter, with plenty of time to allow grieving, provide comfort, but mostly to reassure the patient that she will not be alone on this journey and that her team of physicians will be by her side, from the beginning to the end.
One theme will be recurring through this short discussion is the insistence on the presence of a support individual, be it a spouse, a close relative or a friend, who can take notes, listen and retain the information that may escape the patient overwhelmed with her new diagnosis. Clear steps should be discussed and informative brochures or on-line information should be provided. Key to this success is that the physician be a good communicator, able to breakdown the medical jargon into easily understandable layman’s terms.
It also behooves the patient to step up and get some insight in her care, ask questions, ask for clarifications and also articulate her fears and wishes. Is the loss of hair a main concern? Is the patient the main bread winner? Has the patient recently experienced the loss of a close friend or family member? Is there food or lodging insecurity?
It is widely believed in public health that socio-economic factors account for 80% of health and medicine only 20%. Here also, the psycho-social profile of the patient deserves scrutiny and may determine the outcome of the disease.
Now armed with the diagnosis, the patient needs to take the next important decision. Where will she be treated and by whom? Should she stay local or go to the mega-specialized center advertised on TV and on the billboards? The care of the breast cancer patient requires an army of specialists, including a primary care physician, a radiologist, a surgeon, a medical oncologist, a radiation oncologist, a geneticist, a gynecologist, an oncology nurse or physician assistant, a therapist (oncopsychiatrist or psychologist) a social worker, a nutritionist, as well as a physical therapist.
All these specialists can be assembled under one roof or be available in the surrounding neighborhood. The attraction of a specialized center may be tempered by access difficulties. How much will it cost me to travel to that center? How much do I have to pay for parking? Will my support team, family or friends, be able to visit me when I am hospitalized? If I have an emergency, will my doctor be available or will I be sent to a hospital that is not familiar with my case? Is similar care available closer to me? Are my physicians all board certified? Are the facilities where care will be rendered, all accredited by the National Cancer Institute?
Not least of all, am I comfortable with my team? Do they understand my language and my culture? Am I treated with respect? The recommendation of a trusted primary care physicians, who have referred previous patients to a given specialist or of a friend who has recently gone through a similar experience can be a good place to start. That first visit is also an assessment, an interview of your prospective care giver.
The engagement of the patient in her care cannot be over emphasized. This has been carefully examined and generally four levels of engagement can be seen.
Level 1 is passivity. I don’t need to know anything. My doctor will take care of me. He knows best.
Level 2 is when the patient at least takes some interest in understanding her situation but asks no question and has some gaps in her knowledge. She follows more or less her doctors’ recommendation.
Level 3 is when the patient feels that she is part of her healthcare team. She understands the goals of her treatment and adheres reliably to the medical recommendations.
Level 4: At that level, the patient is fully activated and engaged. She educates herself and she becomes her own advocate. She reads and researches different options and participate in the decision making. Reconstruction or no reconstruction? What type of reconstruction? Genetic testing or not? Am I getting the right dose of the prescribed medication?
Several studies have shown that a fully engaged patient is less likely to be victim of a medical error or a poor health consequence due to poor communication between her providers. She is also less likely to be readmitted to the hospital within 30 days of discharge.
Never to be lost in this discussion is the importance of the support team. Besides the spouse or other family member, this support may come from a close friend, a clergy, another patient met during follow up visits, an in-person or on-line support group. It also can be in the form of a navigator, who will see that the patient gain access to transportation, timely testing and medications as well as help with the maintenance of health insurance to allow continuation of care. This support may also entail assisting with meal preparation, house cleaning when the patient may be too weak to carry them out.
Finally, the literature supports that the availability of a person in which the patient can confide is also important to prevent depression and enhance the patient the patient’s compliance with the treatment plans.
In this context, we would like to remind all physicians that taking care of the mental state of a patient can be as important as the actual medicines provided and to all women who will be unfortunate to face these difficult choices, that BREAST CANCER IS MERELY A BUMP ON THE ROAD AND NOT THE END OF THE ROAD.
Comments