One of the most difficult things to hear at your doctor’s visit is that you or someone you love has a brain tumor and/or brain cancer. It is normal to feel a whole range of emotions – disbelief, denial, shock, depression, sadness, resignation, anger and more.
Working with your doctors and staying on track with the proper treatments are a necessary part of beating the disease. Staying focused on living the best quality of life, dealing with the challenges and making sure not to become the disease, takes support.
“One of the greatest discoveries a man can make, one of his greatest surprises, is to find he can do what he was afraid he couldn’t do.”
WHERE TO START
Many patients feel scared and lost and don’t know where to start. Often times a patient may not have had the time to research their options and feel pressured to act right away once the diagnosis is made. In some cases that may be true, but in many cases finding the most experienced medical team will save you time and could possibly make the difference between receiving the proper treatment or not.
As a Cushing’s Disease survivor and patient advocate for people with brain tumors, I’d like to share a few things I’ve learned over the past 15 years. I hope you will find this helpful.
BUILDING YOUR MEDICAL TEAM
Get a second opinion
Make sure you are confident with your medical team. In some cases you may want to seek a second opinion to find a group that has the necessary experience and expertise. Just because an insurance company deems a neurosurgeon and/or neuro-oncology team approved doesn’t mean that they are the most knowledgeable and experienced. Insurance companies have to allow you to get a second opinion. Do your research and call your insurance company to find out exactly what you need to do to get another medical opinion.
If you feel overwhelmed, ask your insurance company if they have a patient advocate who can help you find an experienced and highly rated medical team. If not, call your local hospital and ask if they have a patient advocate or social worker that can help you. The goal is to make sure to find the most experienced team you can. Many insurance companies will give approval for a second opinion even if it is out of network. If you are dealing with an HMO-type of insurance, do research within the network for the most experienced doctors. Many times, even an HMO insurance plan will approve a specialist outside the network, as long as you prove the surgeon/oncology team has more experience treating the type of tumor or cancer you’ve been diagnosed with. I often hear patients say, “My surgeon is nice and I’m afraid I will hurt his/her feelings if I ask for a second opinion.” Keep your best health in mind and move forward. A good doctor will encourage you. Research the doctor you intend to go to. For example, find out where they attended medical school, ask if they have any publications you can look at about the type of tumor you have been diagnosed with. Find out how many surgeries they do each year and ask if you could speak with some of their other patients who have gone through surgery. It’s your health and you need that to be the primary focus.
The team of highly experienced expert neurosurgeons at the Pacific Brain Tumor Center can provide second opinions and recommendations.
“Men are not prisoners of fate, but only prisoners of their own minds.”
~Franklin D. Roosevelt
BUILDING YOUR HOME TEAM
Not everyone needs to be on your team and not all family is cutout to be on the support team. Family and friends will play a role but deciding what is best for the person going through treatment needs to be planned out. This video presented on ReImagine’s website is a great example for getting support, it’s about 7 minutes and well worth taking the time to watch – it’s very accurate. Grab a pen and paper before starting the video.
There are several wonderful organizations that offer different types of information. I’ve worked through the years with many of these organizations and they all are slightly different but all have one common goal – to empower patients with current and accurate information.
American Brain Tumor Association (ABTA)
National Brain Tumor Society (NBTS)
Voices Against Brain Cancer
Bike For Brains
Through the years one thing that has always stood out to me is the perceived stigma behind asking for personal or emotional help. I notice it is especially difficult for many of our male population. Facing the challenges of a serious health condition can be challenging for the entire family. A spouse or child may start to feel responsible for the patient’s happiness. It’s not easy when someone you love is sick and you feel helpless, and often the ones closest begin to take on the responsibility of caregiver, therapist or councilor. This is not the most effective way to help the patient deal with their emotional ups and downs. Even if a family member is a mental health professional, defer to an outside professional to help with the emotional challenges that come with a devastating diagnosis. If a professional therapist is not an option, free or low cost counseling may be offered through religious centers. For those who struggle with expressing emotions or asking for help, I urge you to seek guidance, as your state of mind is a key component in dealing with a diagnosis. Everyone deserves to have a safe place where they can go to sort out the personal challenges that come with an illness.
“Nothing is good or bad, but thinking makes it so.”
Read the second article of this two part series which has recommendations for actions to incorporate into every day life. Support and knowledge will help navigate the challenges of disease and maintain the best quality of life for the patient and their family.
Sharmyn McGraw is a patient advocate, charismatic professional speaker and published author. She has first-hand experience as a Cushing’s disease survivor and often collaborates with nationally-recognized neuroendocrine experts, sharing the speaker’s platform while educating patients and doctors about neuroendocrine hormonal disorders and their impact on our health as a nation. As a volunteer, Sharmyn facilitates the largest pituitary patient support group in the country for the Pacific Brain Tumor Center at John Wayne Cancer Institute.