What are the first things to know when diagnosed with a brain tumor?
The shock and disbelief that patients experience upon first being told of a brain tumor diagnosis is nothing short of life-altering. Thoughts like “This can’t be true!” or “Am I going to die?” are not surprisingly some of the first that come to mind.
As a surgical neuro-oncologist with two decades of experience in treating of tumors of the brain, spine, and skull base, I reassure newly diagnosed patients that our multi-disciplinary team of specialists will offer hope and a sound treatment plan for any tumor diagnosis. Treatment involves a personalized approach considering the benefits and risks of surgery, radiation, chemotherapy, and immunotherapy. Promising newly developed therapeutics are also offered through clinical trials.
Ours is a high-volume brain tumor service receiving referrals from physicians within New Jersey and beyond and our outcomes are among the best in the nation. This is why we hope to help patients who have recently learned of their diagnosis with this blog.
Tip #1: For a brain tumor diagnosis, rely on the advice of neurology professionals
With a daunting diagnosis like a brain tumor, a patient understandably feels frightened, anxious, and worried. The patient and the family will likely confer with friends and family to find “the best brain surgeon” or “the best neuro-oncologist.” They may also comb the internet for information about brain tumors, treatment options, and providers. Although I support the desire to self-educate as empowering, consulting “Dr. Google” may be misleading and cause unnecessary anxiety and frustration.
Rather, a good first step to gaining more information is to seek an informed first and if necessary and time permitting second opinion from a team of brain tumor specialists. At our brain tumor clinic, we offer a Second Opinion Service in which one of our highly skilled surgical neuro-oncologists will bring his or her advanced training and extensive experience to review the patient’s initial findings, medical records and images, to provide an thoughtful analysis and plan of care.
Obtaining a second opinion from a professional with a breadth of experience is the perfect time to ask questions and obtain pertinent and accurate information. It also allows the patient and family to assess the skill, reputation, clarity of thought and communication and overall bedside manner of the physician.
Tip #2: Make deliberate and informed decisions before and during treatment
Today, patients are more involved in their medical care than ever before. Their informed decision-making is integral to the plan of care. When it comes to a scary diagnosis, such as a brain tumor or cancer, decision-making shouldn’t be as cut-and-dry as simply electing the route that will most likely prolong life.
A study published in American Psychology about decision-making and cancer recommends that patients “weigh the costs and benefits of treatments with respect to duration of symptom-free survival, time spent with toxicity due to treatment, time to relapse, and impact on quality of life and functional status.”
It is my advice that upon receiving a brain tumor diagnosis and options for treatment, patients take the time (if the situation warrants) to consider the options and discuss them with family, friends, and, if meaningful to the patient, clergy or a therapist. It’s important for patients to have a solid grasp on their values, preferences, and ideas about what quality of life means to them before any treatment decisions are made. And, as stated in tip #1, I suggest seeking out advice from neurology professionals to help balance the emotional side of decision-making with scientific data.
Tip #3: Don’t give up hope. Stay positive!
This may be the most challenging tip, and it’s certainly the most rewarding one. Over the past decades, much research has been conducted that suggests hope and positivity breed physical well-being. Indeed, studies have suggested that “Optimism is a significant predictor of positive results for physical health.”
We’ve seen the positive results that a hopeful, positive attitude has brought to our brain tumor patients. Those who maintain an optimistic disposition seem to experience less depression during treatment, stick to their treatment plans better, and are willing to ask for (and receive) help and support during the toughest moments of treatment.
There are many support tools to assist brain tumor patients in keeping hope blooming. First and foremost, I advise the patient and his or her family to build a reliable support network of people who inspire happiness and hope. There are also brain tumor support groups, locally and online. Other ideas include keeping a gratitude journal, volunteering, seeing a therapist regularly, and enjoying life activities, such as watching funny movies, walking, or spending time with friends when possible.
Another idea to consider is participating in a clinical trial for brain tumors. Nearly all the patients who enroll in one of our clinical trials say they do so to help or eventually prevent anyone else going through the same diagnosis. Clinical trials give an additional purpose to a patient’s treatment journey that inspires hope and help.
To make a new patient or second opinion appointment, call 201-342-2550, Option 3.