©

On the strength of my research
Dennis' story

I have a couple of masters, and am the head of a mental health R&D team that also does clinical consultation. I live in Ventura, CA, about an hour N of LA on the coast.  After finding out about my 3.2 cm AN, I got to work - researching "the best" is in my blood!  

I just found out that my HMO decided to approve FSR!!  It was the strength of my research that tipped the scales, I was told. I am supplying it in case it might be useful to others.  Included is the following:

The first letter I gave the HMO

• Risks and costs of surgery and radiosurgery
• Attachment: Documentation of responses to perceived Radiosurgical risks

Additional documentation I gave the HMO

• Overview of outcomes:  surgery vs. GK vs. FSR
• Summation of literature:  GK vs. FSR

I believe that the future is in the proton beam that is shaped to the dimensions of the tumor (IMRT, I think). But it seems that there are VERY few places to get this, and the regimin they use is the 25-30 treatments of 1.8-2 grays. So far, the only published material I've seen have the tumor shrinkage rates at 25%, which can't touch the 75-80% rates of the best FSR practitioners. The shrinkage rates are the #1 thing you want to see once you get past the short term issues.

Dennis <bitofwit AT aol.com>
September 1998

Editor's note:  this documentation is meant to help those who need to convince their insurance company to pay for FSR; it may be incomplete or biased.

The first letter I gave the HMO:

Dear Dr. Ashby,

I have been diagnosed with a 3.2 cm Acoustic Neuroma, that has some brain stem compression, and I have sought more information on this life-threatening condition. I have consulted several top specialists in medical research institutions and have discovered that there is a Medicare - approved treatment available that has close to a one hundred percent success rate with a nearly zero percent complication rate. I know that you are committed to providing the highest quality of care to VCHCP members as has been demonstrated by your willingness to seek out of state care (for example, Texas for cancer radiation therapy) in cases where specific treatments will afford the patient the highest quality of life. Part of what I do in my position at Ventura County is research, and I strive to be as accurate as possible. Here is what I have discovered about the two treatment options:

Surgery

Risks: There are multiple, severe short - and long - term adverse complications associated with surgery, and these risks correlate highly with tumor size. This is especially true with larger tumors such as mine due to brain stem compression, and an inability to excise the tumor without adversely impacting the fifth and seventh cranial nerves. Facial paralysis, significant balance problems, eye functioning problems, chronic fatigue and short term memory are very real possibilities. The surgical approach Dr. Maceri said he would use is the trans-lab - which guarantees a total loss of hearing in my right ear. There is voluminous material written about surgical risks. Based on my tumor size and current symptoms, my chances of having some facial disfigurenment is roughly 50-50. Attached is a detailed list of the surgical risks.

Costs: I contacted USC to estimate the costs of my surgery. I was told that the costs of the two neurosurgeons alone was $20,000. Not included are the costs of other medical personnel such as the anesthesiologist, radiologist, pathologist, and possibly others. I spoke with Myra Boyce in the billing office, who gave me a rough estimate of $35,000 - $60,000 for all the other charges (room, ancillary, etc.). I was told that VCHCP pays a discounted rate of 65% of this, which would be $22,000 - $39,000. I do not know if VCHCP gets a discounted rate from the physicians, but if they get a similar discount, I would guess that the total package would cost between $40,000 - $55,000, not including aftercare. It is also clear that the costs within this range correlate highly with tumor size, and mine is fairly large.

The post-surgical costs associated with AN surgery upon larger tumors are frequently as great as the initial surgery itself. This is because of the need for subsequent surgeries and physical therapy to try to help compensate for the damage done in the initial surgery. In addition to these costs, there are often additional costs associated with AN surgery such as loss of work and disability that many patients experience.

Radiosurgery

There are two radiosurgical approaches used to treat ANs. The first - the Gamma Knife, is a single treatment modality that has been used on upwards of 20,000 patients worldwide over 30 years. Dr. Maceri told me that the Gamma knife is only used on ANs up to 3.0 cm at USC. Even if my tumor was smaller, facial nerve damage occurs between 10 and 25% of the patients currently treated with the Gamma Knife. The second - Fractionated Stereotactic Radiosurgery (FSR), involves very low doses of radiation over a course of five to six treatments, typically done daily. There is no size limitation for FSR.

FSR has been used for decades for other types of tumors, and has been used to treat ANs on the East Coast for the past five years. The outcomes of FSR demonstrate that this is the most effective form of radiosurgery for ANs. The fractionated doses result in essentially no functional damage to surrounding healthy tissue and consequently nearly zero adverse side effects. Tumor growth is stopped, and usually shrinkage occurs. Compared to the trans-lab surgical approach, a sizable percentage of patients who receive FSR actually have their hearing improve. The latest research conducted on a series of FSR patients in Staten Island also demonstrated that 75% of the patients also had improvement in their vestibular function.

Risks: The best outcomes have occurred at Staten Island University Hospital which reports less than one percent incidence of adverse effects to the facial nerve (one 85 year old patient who sustained some facial nerve damage). The following risks have been raised by surgeons:

1. Concern about radiation-induced malignant neoplasms in the years following treatment: Three of the top radiosurgeons in the country (Dr. Williams - Johns Hopkins; Dr. Suh - Cleveland Clinic; Dr. Lederman - Staten Island) have said there are no published accounts of an adult getting a secondary neoplasm from radiosurgery (see attachment). The bottom line is that there is more of a chance of my dying as a result of surgery than getting a radiation-induced brain tumor down the line.

2. Concern about subsequent tumor growth: None of the patients treated with FSR at Johns Hopkins have ever demonstrated an increase in size. Only one patient at Staten Island had some post - FSR growth before the growth ceased. With respect to FSR on larger tumors, the latest series of radiosurgeries conducted at Staten Island demonstrated that more than three-quarters of patients had showed a decrease in tumor size after radiation.

3. Concern that FSR is too new, too little is known: This is a Medicare reimbursable procedure. The number one-rated hospital in the country, Johns Hopkins is fully behind this approach, as is a number of other hospitals. FSR has been used to treat hundreds of patients for five years now with amazing success.

Costs: The cost of FSR has been quoted in the $30,000-40,000 range. I am not sure if this figure can be negotiated. Compared with the potential doubling of surgical costs due to complications, the aftercare costs of FSR are minimal. Patients can return to work immediately. The overall costs of FSR have been shown to to be half the total costs of the surgical approach.

Thank you for your consideration in these difficult times. I know that you are aware of much of the data I have provided and I appreciate your indulgence regarding my collecting of information. The truth is, Dr. Ashby, is that this thing scares me to death - particularly the grotesque surgical side effects.  I am 46 years old and a father to three adolescent children. Time is of the essence, as I have had an acceleration of symptoms involving my hearing in the past few months, and been having some beginning symptoms of right - sided facial nerve damage in the past week or two. I fear that my facial nerve is now stretched to the point where there would be severe consequences if surgery was performed.  I respectfully request that you allow me to obtain the FSR treatment for my condition, considering both the success of the procedure and the minimal side effects. Please consider Dr. Maceri’s consult regarding this being a patient - preference issue, since so much is on the line. I feel safe with this choice and the quality of life I can live afterwards.

Sincerely,

Dennis O’Connell

Attachment

Documentation of responses to perceived Radiosurgical risks

1. Concerns about a secondary neoplasm from Radiosurgery. This is based on the research regarding children who were irradiated a few decades ago. A small percentage of these children later developed neoplasms.

Bruce Pollock, M.D., et al. in their comparison study between microsurgery and radiosurgery (Neurosurgery, Vol.36, No. 1, January 1995, page 221), states - "The concerns that stereotactic radiosurgery may lead to the development of delayed radiation- induced neoplasms remain unsubstantiated; an increased incidence of new neoplasm development has not been reported despite more than 26 years of experience and the treatment of more than 20,000 patients worldwide."

Dr. Lederman at Staten Island University Hospital, one of the leading practitioners of Fractionated Stereotactic Radiation for ANs, also is not aware of a neoplasm caused by radiosurgical treatment of ANs.

2. Concern about subsequent tumor growth: This information comes directly from Dr. Williams, and from the published outcomes of Staten Island. In fact, according to these sources, I have a greater risk of tumor growth from surgery than of FSR. This is because it is not unusual for an incomplete resection due to the difficulty of surgically removing the tumor.  Related concerns have been expressed about the increased difficulty of surgically removing an irradiated tumor later on down the line. This is a minimal risk since FSR treated tumors are just not continuing to grow.

Overview of Outcomes:
SURGERY VS. GAMMA KNIFE VS. FRACTIONATED STEREOTACTIC RADIOSURGERY

The following is a compilation of the research I have been able to access so far regarding outcomes of these two radiosurgical procedures for Acoustic Neuroma. My strong desire for FSR is my conclusion, based on their outcomes, that FSR will do me no harm. This is not the case for either surgery or the Gamma Knife. The literature is filled with references that the Gamma Knife is used for ANs up to 3.0 cm. Many institutions do not use the Gamma Knife for ANs over 3.0 cm. Such is the case with the first referral I received - from USC. These institutions believe that there is a higher risk when using the Gamma Knife on larger tumors. This increases the pre-existing risk associated with use of the Gamma Knife. The following is the median statistic compiled from multiple sources regarding treatment outcomes. Attached is a more detailed summary. The surgery outcomes are based on Dr. Maceri’s report and known consequences of the trans-lab approach.

TREATMENT:                                 FSR / GAMMA KNIFE / SURGERY

OUTCOME MEASURE

Facial nerve damage                  0% 17% 50%
Trigeminal nerve damage          0% 25% 50%
Tumor growth                            0% 4% *
Hearing loss                              10% 41% 100%

Hearing improvement                 19% 0% 0%
Balance improvment                  77% 50% 0%
Tumor shrinkage                         80% 35% 100%

* A small percentage of surgical operations result in tumor regrowth or incomplete resection.

Summation of Literature

GAMMA KNIFE VS. FRACTIONATED STEREOTACTIC RADIOSURGERY OUTCOMES

The following are a summation of various abstracts and articles I have been able to access so far. These are by no means complete, and I am continuing to obtain more information.

* 4-5 treatment regime

Editor's note:  These are not the latest statistics.  Our summary of the latest GK/FSR comparisons can be found here.

©

Last Edited: Wednesday, October 30, 2002