Considerations for Acoustic Neuroma Patients

By: Myles Pensak, MD

Editor’s note: This is a partial transcription of the presentation made at Acoustic Neuroma Association’s 20th National Symposium in Cincinnati

When a patient meets with a physician to discuss treatment options for an acoustic neuroma, there are many things that go through the physician’s mind. It doesn’t matter if you are going to see your family doctor, your internist, radiation oncologist, neurosurgeon, or ear, nose and throat doctor.

I would say that many patients oftentimes show up in the office with expectations that we have all the information, and that we are going to give them an absolute and concrete answer regarding treatment. It is not unusual that after a 30-minute discussion about management strategies for AN, that the patient says to me, “What would you do if this were your tumor?” And it takes various flavors: “What would you do if I was your son or daughter?” “What would you do if I were your mother?” “What would you do if I was your brother?”

Most physicians have neutral responses since we are there to provide information, recommendations and guidance. In a small percentage of patients, what needs to be done is obvious. I think most physicians are striving to tailor a recommendation and a recommended protocol to you rather than tailoring you to a protocol that is pre-established.

I will share this- the first acoustic neuroma that I diagnosed was as a second-year medical student. I picked up the phone and called my mother and said, “Mom, I don’t think you have a muscle problem.” So, the very first acoustic neuroma that I was involved with was my mother’s.

Getting the Best Information

I think when patients are first diagnosed, there is a huge state of confusion. It’s an uncommon tumor. Most of you, unless you were living in a particularly large environment, either never knew anyone who had an acoustic neuroma or never even heard of an acoustic neuroma.

For many, the first thing you do is hit the internet when trying to make a treatment decision. These days we hit Google and we tap in ‘acoustic neuroma’. And there it is. And there are tons of information. This same process occurs for those of us who are charged with the responsibility of taking care of you. We go through a continuous decision-making algorithm.

For physicians like me who are fortunate enough to work in a medical center where there are a number of patients seen, and have access to colleges with vast expertise, the decision is made by consensus of many experts. That is a privilege at both ends. It is a privilege for me, because I am always able to check my thought process either with senior colleagues or younger colleagues. And we collectively will make a decision as to what is best for the patient. And it is a privilege for you, because you get the best thinking from a variety of experts.

Factors in Decision Making

Age

When making a decision, the one major decision-maker is your age. Acoustic neuroma patients can be in their 20’s or in their 70’s and everything in between. A tumor in a 12-year old that is 1cm is a very different tumor than a 1cm tumor in an 85-year old. So, age becomes one of the variables that we throw into our thought process and our calculus.

Nature of Your Symptoms

How your symptoms present is another determining factor in the treatment decision. If you happen to have been hit by a Nerf ball and somebody ordered an MRI, and a 1mm dot in your internal auditory canal is found and you have an acoustic neuroma- this is an incidental finding. This is vastly different compared to somebody who suddenly becomes profoundly hearing impaired. She wakes up one morning and her hearing is gone, and she may have some balance problems. She also may have some pain in her face because the 5th cranial nerve, the trigeminal nerve, is being pressed on by a large tumor.

General Health
Other determining factors about treatment pertain to your general health. A small acoustic neuroma in a 25-year old triathlete is very different than a small acoustic neuroma in a hypertensive diabetic who has had four vessel coronary bypass surgery, smokes two packets of cigarettes a day and weighs 385 pounds. They have the same tumor. But it is a very different algorithm that we use in terms of addressing what we recommend.

Personal Obligations

A semi-retired person, with kids away from home, financially independent with a 1cm tumor is very different compared to a 31-year old single mother of three who is the sole support with minimal health insurance, with a 3cm tumor. These are very different situations requiring different approaches.

Size of the tumor is another important consideration. A 5mm tumor and a 5cm tumor are biologically the same tumor, but there is a huge difference with the treatment recommended.

Lifestyle Matters

A tumor is going to impact lifestyle. So, if one of your major passions is mountain climbing or if one of your major passions is playing poker, the treatment that we may recommend may differ.

Your Other Ear

Another consideration is the hearing status of the other ear. A nightmare decision for a group of physicians is a situation in which the diagnosis of an acoustic neuroma is in the only hearing ear. Possibly the patient was born with poor hearing, or had lost hearing due to an industrial accident, or chronic ear disease, and now he has an acoustic neuroma in what may be his better ear or his only good hearing ear.

Individualized Treatment

Given any one of these scenarios, there are a series of options that vary from individual to individual. Observation is always a possibility with small and medium-size tumors. There is rarely an urgency or an emergency to remove an acoustic neuroma. If you are going to observe, what are the parameters that physicians think about in terms of observation? Well, we may use hearing tests as a cheap and easy way to follow a patient. Your physician may recommend a series of MRI scans, and they can be done at six, nine months or a year. When there is no growth, observation continues.

Sometimes I’ll see a patient and they will ask if we ought to get that MRI every month. That is literally like watching water boil. You have got to give these tumors a little bit of time to grow, if they are going to grow.

Radiation is an option with tumors under 2.5-3.0 cm. Whether or not you have a single dose or fractionated radio-therapy, each is applicable for the right patient, the right tumor size and the right location.

Another option is surgery. Sometimes taking out the whole tumor is the best option. Sometimes taking out only part of the tumor and following it up with radiation or just observing the patient is the best option. Size, location and patient’s health play a key role here.

Making the Treatment Decision

Here is the treatment conundrum. You have great information that you gathered from reputable internet sites and it is time to meet with a treating physician . . .

Before meeting with the physician, go through all the information; come up with the cogent, appropriate, reasonable questions. The guide for most of those is what is it that’s bothering you? What is it that your spouse is concerned about? Your kid who lives 900 miles away who couldn’t come to the officewhat are the one or two questions that they keep saying to you: X, Y, or Z.

I think that when you go to see your physicians, it is good to come in with a degree of knowledge so that there is a commonality of language. When you see a physician, do not allow them to use physician-speak. Make sure that you understand the salient, important points. There is nothing that says it has to be a single office visit, and it’s not like going to K-Mart and if you don’t make a decision by four o’clock something terrible happens.

In terms of answering, where do we start from a physician’s perspective? It’s safety first, safety second and safety third. It is quality of life and it is a thoughtful mapping out of what is best- what is optimal for the patient who is sitting in front of us, rather than the fact that ‘I’m a radiation oncologist and I do radiation’. Or, ‘I’m a neurosurgeon and I do sub-occipital surgery approach’. Or, ‘I’m an internist and I actually have no idea, so I suggest it’s a small tumor, you do nothing’.

The point is that if you are seeing a physician and you have a sense that you are being tailored into a formula, it’s the time to start walking. If you are with a group of physicians who are trying to optimize and tailor an outcome and protocol just for you, then you are in a medical center that has your best interest.

There is absolutely no right and wrong decision. There is absolutely no onesize-fits-all when making a decision about treatment. The worst thing that you can have happen is the “woulda, shoulda, coulda” phenomenon. You’re three months out, you’re six months out. You’re three years out, and you’re going through, if you will, buyer’s remorse. You should have had it out when it was small. You should have left it alone when it was small. You should have radiated it when it was small. Or vice versa.

In conclusion, be informed, be confident and establish a relationship of mutual respect and trust with our treating physicians. In no case does ANA endorse any commercial products, surgeon, medical procedure, medical institution or its staff.

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