“Oh no. You have a brain tumor. Cancer stinks.”
Yes, cancer is a terrible thing, but not all brain tumors are cancerous. Acoustic neuromas, as well as many other types, are almost always benign.
“When is your surgery?”
Treatment is not always surgery. Many patients are put into a “watch and wait” category, which means they are doing their best to continue day to day life with a mass in their brain. If there is not much growth or side effects, the tumor is left alone for years or forever.
Radiation is a second form of treatment. The tumor is radiated and dies, leaving the dead tissue inside. Radiation avoids the challenges of surgery, but can also bring the side effects of hearing loss or facial nerve damage.
There are many tumors that require surgery though, and some cannot be fully removed leaving patients at risk of regrowth. Many times a balance has to be made between retaining facial, balance, and/or hearing function with complete removal. This decision is usually made in the operating room. Doctor’s always strive to remove as much as possible.
Which leads us to the biggest myth:
“Benign is not harmful”
Benign is not malignant and that is a good thing. However, Benign does not mean that radiation or surgery was a simple in and out procedure. It doesn’t mean that you didn’t have damage to your body.
“You’re the same person, right?”
Well, actually, no. Even though an acoustic neuroma is at the cerebellum and brain stem and not in the frontal memory part of your brain, we have been changed. Maybe we have the same personality, but possibly muted. A thoughtful person in the past may now be much more appreciative. Individuals who were pain free in the past and unaware of what a migraine headache is are now learning to live with chronic pain. Perhaps without balance issues prior to treatment, that person is now careful to not turn too quickly – or may need a cane. Sometimes a person is now less tolerant of some things and more forgiving of others.
After AN diagnosis, many of us have an admittedly better lifestyle. We are more aware of our mortality and the importance of eating, sleeping, and exercising well – and consistently. We are more aware of relationships and milestones in life.
Many have shifted from living with a bundle of non-stop energy to now being fatigued by the extra work our brains have to do constantly. We learn that taking naps is a normal part of life and not something to feel guilty about. Our brains demand extra sleep to cope with pain, tinnitus, and balance challenges.
While many AN patients now have a better appreciation for life, they now battle depression – a physical reality as part of recovery. It’s a tricky combination to acknowledge and battle depression even while grateful for life itself.
Many of our friends and family take a while to recognize that the life of the party before is now unable to be in loud settings. An extroverted, life loving person is now perhaps more withdrawn in loud settings.
Not a myth – We are still here.
We are happy to see things that we may have missed given different circumstances. We want to push past our new realities and are a tenacious bunch. Everyone is changed by significant life events, and an acoustic neuroma brain tumor fits nicely into that category of “significant” – even though it’s benign. . .
FYI, here’s the definition of Benign and Malignant:
Benign tumors are typically slow-growing and rarely spread to other areas of the body. They often have well-defined borders, so surgical removal can be an effective treatment. However, the location of a benign brain tumor can have a significant impact on treatment options and be as serious and life-threatening as a malignant tumor. Benign brain tumors can be considered malignant if they are located in areas of the brain that control vital functions like breathing
Unlike benign tumors, the cell structure of a “malignant” brain tumor is significantly different than that of “normal” brain cells. Malignant tumors tend to grow faster and can be more invasive than benign tumors. Malignant tumors are life threatening. Sometimes malignant brain tumors are referred to as “brain cancer,” though they do not share all of the characteristics of cancer. Most notably, cancer is characterized by the ability to spread from one organ to another. It is very rare for a primary brain tumor to spread beyond the brain or spine.