Brain Cancer Patient Advocate, Navigator or Health Advocate
The concept of patient advocacy in its current form was developed in 1950’s as the treatment of cancer patients grew more and more technically complicated, as a means to make the voice of the patient more readily heard. In today’s world of constantly evolving medical techniques, treatments, and services, the average individual cannot be expected to be thoroughly acquainted with any and all this material. So it becomes the function of the brain cancer patient advocate to perform a variety of services to ease the burden of the patient, and their family, as they learn to deal with every aspect of the disease.
The primary concern of the brain cancer advocate is to support the cancer patient in all aspects of life with the disease, whether they be physical, emotional, or financial. An advocate can assist the patient in investigating available treatment options and educating the patient on the efficacy of each of them, be it pharmacological or surgical. By educating the patient, the advocate can be of great assistance in helping them make an informed decision about their course of action, and the possible side effects and outcomes. Support may also involve recommending counseling services for the patient, and their family members, to help them cope from day to day. Brain cancer patient advocates may also be of assistance in helping the patient, and their caregivers, deal with any physical debilitation resulting from the disease, and its treatment.
Another aspect of brain cancer patient advocacy is assistance in navigating the financial aspects of treating the disease. An advocate can act as a liaison between the patient and his or her insurance company, assuring that the patient receives any and all benefits to which they are entitled. When one is dealing with a serious disease, it is quite easy to lose track of other aspects of your life. An advocate can help to seek out sources of assistance which can ease the financial burden of the patient.
Education is also a major function of a cancer advocate. Both the patient, and their caregivers, are often in need of information about how the disease will affect their lives, both during its progression, and in its aftermath. Patients must be informed about how their condition will affect their mobility, the ability to care for themselves, and if they will be left with any permanent impairment to their lifestyle. Caregivers need to be instructed in mechanisms, or techniques they must use to cope with the patient’s daily care, such as injections, proper care of surgical dressings, etc.
The cancer patient, above everything else, needs to know that there is someone in their corner. Someone who will help them find their way through the confusing, and sometimes daunting, world of modern medicine. Someone who will have their best interests in mind as they face challenges presented every day in their struggle to find, secure, and finance the best treatment available.
What is Brain Cancer?
Brain cancer is the growth of malignant tumor cells in the brain. There are two broad types of brain cancer.
1. Primary brain cancer is whereby the cancer originates from the brain tissue itself. Examples of this are meningiomas, pituitary adenomas and gliomas.
2. Secondary brain cancer refers to cancers that originated from elsewhere in the body and metastasized to the brain. This type is the commonest.
They reflect the part of the brain affected but sometimes they can remain symptomless. Pituitary tumors are sometimes only discovered on autopsy. Common symptoms include:
· Loss of balance
· Loss or impairment of certain functions like sight, hearing, speech, limbs coordination and others.
· Projectile vomiting sometimes not accompanied by nausea.
· Negative emotional and/or intellectual changes.
Causes and Risk Factors
What triggers the cells to undergo abnormal changes is not understood. For the secondary brain cancer, the tumor cells are spread to the brain through the blood or lymphatic system. But there are factors that are associated with an increased risk of getting this cancer. Some of these are:
· Therapeutic or accidental radiation to the head.
· Environmental toxins.
· HIV infection.
· Presence of cancer in another part of the body.
Careful and detailed history taking about the illness is an important part of diagnosis. If other diseases are suspected, relevant tests are carried out to confirm or rule them out. Specific tests for brain cancer diagnosis include:
· Computerized tomography (CT) or computerized axial tomography (CAT) scans.
· Magnetic resonance imaging (MRI) is gaining popularity.
· Skull x-rays.
· Tumor biopsy through surgery is done for histology testing.
The type of treatment used depends on the age of the patient, the type of tumor, the location of the tumor and size. Treatment will also involve specialists medical personnel like neuro-surgeons, oncologists and even physical therapists and occupational therapists may be needed under certain circumstances. Specific management includes:
· Surgery. This may be done for diagnostic purpose where the surgeon is looking for a biopsy for testing to determine the type of cancer. Even then he tries to remove as much of the tumor as possible. The other reason is for therapeutic purpose.
· Radiotherapy is the use of high energy irradiation with the aim of killing as many of the cancer cells as possible. It can be used on those who for some reason cannot undergo surgery or after surgery.
· Medications (chemotherapy) are used singularly or as a combination of several types. Common drugs used include Afinitor, Everolimus and Temodar among many others.
· Clinical trials give volunteer brain cancer patients a chance to benefit from promising new ways of treating the cancer.
The U.S. brain Cancer Statistics
According to the American Cancer Society, in the year 2015, tumors affecting the brain and the spinal cord (central nervous system) will be as follows:
· Almost 23000 people (both children and adults) will be newly diagnosed.
· About 15000 will die from these cancers.
· The lifetime risk of getting this cancer is 1:140 for men and 1:180 in women.
· In both the new cases and deaths related to brain cancer, men are more affected.
The survival rate from brain cancer depends on the type, location and the effectiveness of the treatment used.