Newer incidence rate for ANs

[free2be]

This is a direct quote from an e-mail from Dr. Steven Chang at Stanford. It definitely indicates what was discussed somewhere else previously, that the rate of AN occurrence is much higher than it used to be.

"Acoustic neuromas are more common that 1 in 100,000.  The less common NF2 version of ANs is already 1 in 40,000, and the non genetic versions of ANs that you have are at least 10 times more common than the NF2 version."

If I did the math right, that means that unilateral regular ANs occur in 1 in 4000 people. Is that math right? 

I have some other stats he quoted regarding treatment complications, other serious diseases to put those in perspective, and such if anyone is interested.

Connie
 

[leapyrtwins]

I'm not sure if you did the math right or not, but I'm a little surprised that ANs are more common than 1 in 100,000.

That's the statistic I've been hearing for 3+ years now.

Guess I'm not as "rare" as I thought I was   

Jan

[sgerrard]

I think there is a confusion here between the rate of occurrence, which is around 1 per 100,000 per year, and the number of Americans who have one.

If the average time someone lives after getting their AN is 25 years, and the population is 300 million, you get about 75,000 people who are alive and have had one ( 1/100,000 * 300 million * 25). That works out to 1 out of every 4,000 Americans (75,000 / 300 million).

It is the per year that throws people.

The rate of diagnosis is probably going up, but I don't think there is any huge jump in the rate per year.

Steve

[sunfish]

I've read that the rate of diagnosis is going up because of the increased use of head MRIs for all sorts of reasons.  In other words, they're finding more of these "accidentally."  Who knows how many of these might have remained non-symptomatic if not discovered in this manner?  On the other hand, who knows how many people have been saved more serious disability because their AN was found earlier than it might have been?

[Joef]

I seem to remember the number of new AN's  found during autopsies is higher than one would expect..... so I would think a small AN found by mistake would be a good candidate for W & W !!

[annamaria]

People (professionals) in the field have been quoting rates that vary from 1 per 100,000 per year all the way to 10 per 100,000 per year.

If one assumes a lifespan of 100 years (for simplicity) that says that over a lifespan (100 years, assumed) 100 of the 100,000 get AN, if the rate is 1 in 100,000.

Or, 1,000 of the 100,000 get AN, if the rate is 10 in 100,000.

Taking the first number, that says that 1 person in 1,000 will get an AN over a lifetime.  If you have a circle of friends or acquaintances of 1,000 people (outside the Forum and besides yourself), 1 other person may have an AN.

If you take the second number, that says that 10 people in 1,000 will get an AN over a lifetime.  If you have a circle of friends or acquaintances of 1,000 people (outside the Forum and besides yourself), 10 other person may have an AN.  That is, actually, 1 in 100. If you know 200 people (say 200 people who came to a wedding), then 2 would have an AN -- if the second number were the one to believe...

Annamaria

[ppearl214]

Recent (within the past month) phone conversation with the Exec Director of the ANA is now reporting that occurence is 2 in every 100,000.  More are being reported, potentially due to modern scanning processes, more going to doctors to report issues to be investigated, etc. 

Phyl

People (professionals) in the field have been quoting rates that vary from 1 per 100,000 per year all the way to 10 per 100,000 per year.

If one assumes a lifespan of 100 years (for simplicity) that says that over a lifespan (100 years, assumed) 100 of the 100,000 get AN, if the rate is 1 in 100,000.

Or, 1,000 of the 100,000 get AN, if the rate is 10 in 100,000.

Taking the first number, that says that 1 person in 1,000 will get an AN over a lifetime.  If you have a circle of friends or acquaintances of 1,000 people (outside the Forum and besides yourself), 1 other person may have an AN.

If you take the second number, that says that 10 people in 1,000 will get an AN over a lifetime.  If you have a circle of friends or acquaintances of 1,000 people (outside the Forum and besides yourself), 10 other person may have an AN.  That is, actually, 1 in 100. If you know 200 people (say 200 people who came to a wedding), then 2 would have an AN -- if the second number were the one to believe...

Annamaria

[Jim Scott]

Frankly, all of these numbers and equations give me a headache.  I suspect that the newly increased AN statistics (2 in 100,000) are likely valid and simply reflect, as Phyl stated, the efficiency of modern technology as well as doctor/patient awareness of this benign and sometimes exasperating skull-based tumor.  2 in 100,000 is still in the 'rare' category - so we're still unique.

Jim

[annamaria]

(Annamaria)

Yes, but…

See this web quote:

"Death rate extrapolations for USA for Brain cancer: 12,764 per year, 1,063 per month, 245 per week, 34 per day, 1 per hour, 0 per minute, 0 per second. Note: this automatic extrapolation calculation uses the deaths statistic: 12,765 deaths reported in USA 1999 for cancer of brain, meninges or CNS (NVSR Sep 2001)..."

Also read below the 2010 data from the American Brain Tumor Association…

BUT

My husband is a statistician, so he says numbers cannot be taken in absolute terms, but have to be taken in relative terms.  So he says “Keep in mind that every sweet time we sit in a car and slam the door shut we ACCEPT that in 2009 there were 33,808 deaths, one of which could be us  ... every time we slam the door to go to the soccer game, store, church, movies, see family/friends/vacation/work, etc….”

= = = = =

American Brain Tumor Association

 Facts & Statistics, 2010
……………………………………………………………………………………………
Brain tumors do not discriminate. Primary brain tumors - those that begin in the brain and tend to stay in the brain - occur in people of all ages, but they are statistically more frequent in children and older adults. Metastatic brain tumors – those that begin as a cancer elsewhere in the body and spread to the brain – are more common in adults than in children.

Brain tumors are the:

-   the second leading cause of cancer-related deaths in children under age 20 (leukemia is the first)
-   the second leading cause of cancer-related deaths in males up to age 39
-   the second leading cause of cancer-related deaths in females under age 20.
-   the fifth leading cause of cancer-related deaths in females ages 20–39.6

The facts and statistics here include brain and central nervous system tumors (including spinal cord, pituitary and pineal gland tumors). We continually update these statistics, as they become available, at our web site: www.abta.org. This material was last updated in March 2010. We thank the Central Brain Tumor Registry of the United States (CBTRUS) for their assistance with that update.

These numbers address incidence, trends and patterns in the United States only. For more information, please visit CBTRUS at www.cbtrus.org.

Incidence Statistics

An estimated 62,930 new cases of primary brain tumors are expected to be diagnosed in 2010 and includes both malignant (23,720) and non-malignant (39,210) brain tumors. These estimates are based on an application of age-sex-race-specific incidence rates from the 2010 CBTRUS Statistical Report using 2004-2006 SEER and NPCR data1 to projected
2010 US population estimates for the respective age-sex-race groups (estimation methodology can be found at http://www.idph.state.il.us/cancer/statistics.htm#PR).

Incidence is the number of people newly diagnosed in one year. Rate is the measure of the amount of a disease in a specific population. It is calculated by counting the number of people with the disease and dividing by the total population at risk.

In 2010, approximately 4,030 children younger than age 20 will be diagnosed with primary brain tumors, of which 2,880 will be under age 15.1

Brain tumors are the most common of the solid tumors in children, and the leading cause of death from solid tumors.2 Brain tumors are the second most frequent malignancy of childhood; leukemia is the most common.2

Although statistics for brain metastases are not readily available, it is estimated that more than 150,000 cancer patients per year will have symptoms due to a metastatic brain tumor or a metastatic brain tumor in the spinal cord.3 Metastatic brain tumors begin as a cancer elsewhere in the body and spread, or metastasize, to the brain. Primary brain tumors are tumors that begin in the brain and tend to stay in the brain.

Regarding Incidence Rates

The incidence of all primary brain and central nervous system tumors appears to increase steadily with age. The lowest incidence rate is among children less than 20 years (4.7 per 100,000 person years). The rate increases steadily until age 75—84, when it peaks at 65.5 per 100,000 person years. After age 85, the incidence rate drops to 64.2.1

Prevalence Statistics

It is estimated that during the year 2004 more than 612,000 people in the United States were living with the diagnosis of a primary brain or central nervous system tumor. Specifically, more than 124,000 persons were living with a malignant tumor and more than 488,000 persons were living with a non-malignant tumor.5

For every 100,000 people in the United States, approximately 209 are living following the diagnosis of a brain tumor. This represents a prevalence rate of 209.0 per 100,000 person years.5

The prevalence rate for all pediatric (ages 0-19) primary brain and central nervous system tumors was estimated at 35.4 per 100,000 with more than 28,000 children estimated to be living with this diagnosis in the United States in 2004. 5

Pediatric Statistics

An estimated 4,030 children under age 20 are expected to be diagnosed with a primary benign or malignant brain tumor in 2010. 1 Of these, 2,880 will be less than 15 years of age, and 1,150 between the ages of 15 and 19.

The pediatric incidence rate of 4.71 per 100,000 person years is slightly higher in boys (4.75 per 100,000) than girls (4.66 per 100,000)1.

Brain tumors are the second most frequent malignancy of childhood6 and the most common of the solid tumors in children.2 Brain tumors are the second leading cause of cancer-related deaths in children under the age of 20.6 Leukemia remains the first.2, 6

The majority of childhood tumors (17.2%) are located within the frontal, temporal, parietal, and occipital lobes of the brain. Tumors located in the cerebrum, ventricle, brain stem and cerebellum account for 6%, 6%, 11%, and 16% of all childhood tumors, respectively. Tumors located in overlapping or ‘other’ brain locations account for 14% of all childhood tumors.1
Gliomas account for a significant percentage of childhood tumors:

-   55% of all tumors and 71% of malignant tumors in children age 0—14
-   40% of all tumors and 74% of malignant tumors in children age 15—19.1

Trends in incidence of primary malignant brain tumors for children in the United States using Surveillance, Epidemiology, and End Results (SEER) Program data and a sophisticated statistical technique were evaluated in 1998.7 SEER is a program of the National Cancer Institute. It collects and analyzes information on cancer incidence, mortality, and survival in the U.S. SEER data does not include benign brain tumors. The incidence of brain malignancies did not increase steadily from 1978 to 1994 as previously reported, but rather ‚jumped to a steady, higher rate after 1984-85. The timing of the ‚jump‛ coincided with the wider availability of magnetic resonance imaging (MRI) in the United States.

This finding, combined with the absence of any ‚jump‛ in corresponding mortality for the same period, appears due to improved diagnosis and reporting during the 1980s.

Age-, Gender-, and Race-Specific Statistics

The incidence rate of primary non-malignant and malignant brain and central nervous system tumors is 18.71 cases per 100,000 person-years. For all primary brain and other nervous system tumors, the incidence rate is 17.44 per 100,000 for males and 19.88 per 100,000 for females.1 Rates are age-adjusted to the year 2000 U.S. standard population.
Brain tumors are the:

-   the second leading cause of cancer-related deaths in children under age 20
-   the second leading cause of cancer-related deaths in males up to age 39
-   the second leading cause of cancer-related deaths in females under age 20.
-   the fifth leading cause of cancer-related deaths in females ages 20–39.6


Within the following age groups, the most common primary brain tumors are:

-   In ages 0—4, embryonal/primitive neuroectodermal tumors/medulloblastomas (incidence rate of 0.95 per 100,000 person-years), followed by pilocytic astrocytomas (0.90);
-   in ages 5—9, pilocytic astrocytomas (0.89 per 100,000) followed by malignant gliomas, not otherwise specified (0.74);
-   in ages 10—14, pilocytic astrocytomas (0.83 per 100,000) followed by non-malignant and malignant neuronal/glial (0.41);
-   in ages 15—19, pituitary tumors (1.06 per 100,000) followed by pilocytic astrocytomas (0.60);
-   in ages 20—34, pituitary (2.01 per 100,000) followed by meningioma tumors (1.10);
-   in ages 35—44, meningiomas (3.74 per 100,000) followed by pituitary tumors (2.69);
-   in ages 45—54, meningiomas (7.39 per 100,000) followed by glioblastoma (3.73);
-   in ages 55—64, meningiomas (12.48 per 100,000) followed by glioblastoma (8.16);
-   in ages 65—74, meningiomas (21.27 per 100,000) followed by glioblastoma (13.10);
-   in ages 75—84, meningiomas (30.25 per 100,000) followed by glioblastoma (14.49); and,
-   in ages 85 and older, meningiomas (36.90 per 100,000) followed by neoplasm, unspecified (10.07) 1

The median age of diagnosis for all primary brain tumors is 57 years old. 10
Rates for all primary brain tumors combined are higher among Whites (18.89 per 100,000 persons) than African-Americans (17.14 per 100,000). The difference between these rates is statistically significant1.

The overall incidence rate for primary brain and central nervous system tumors among Hispanics is 17.73 per 100,000, compared to 17.36 per 100,000 for non-Hispanic African-Americans and 19.13 per 100,000 for White non-Hispanics. 1

Tumor-Specific Statistics

-   Meningiomas represent 34% of all primary brain tumors, making them the most common primary brain tumor.1
-   Gliomas, a broad term which includes all tumors arising from the gluey or supportive tissue of the brain, represent 32% of all brain tumors and 80% of all malignant tumors.1
-   Glioblastomas represent 17% of all primary brain tumors, and 54% of all gliomas.1
-   Astrocytomas represent 7% of all primary brain tumors.1
-   Astrocytomas and glioblastomas combined represent 76% of all gliomas. 1
-   Nerve sheath tumors (such as acoustic neuromas) represent about 9% of all primary brain tumors.1
-   Pituitary tumors represent 13% of all primary brain tumors.1
-   Lymphomas represent 2% of all primary brain tumors.1
-   Oligodendrogliomas represent 2% of all primary brain tumors.1
-   Medulloblastomas/embryonal/primitive tumors represent 1% of all primary brain tumors.1
-   The majority of primary tumors (33%) are located within the meninges, followed by those located within the frontal, temporal, parietal and occipital lobes of the brain (23%).1
-   Metastatic brain tumors are the most common brain tumor, with an annual incidence more than four times greater than that of primary brain tumors.
-   The cancers that most commonly metastasize to the brain are lung and breast.

Survival Trends

In 2008, the American Cancer Society reported a significant decrease in the number of brain and central nervous system cancer deaths over the past 13 years. Deaths due to malignant brain tumors decreased 14.36% between 1991 and 2004.6

In an analysis of SEER data from 1973-2001, five year survival rates for those with malignant brain tumors showed improvement over a three decade period: 21% in the 1970’s, 27% in the 1980’s, and 31% in the 1990’s.9

SEER data from 1995-2006 shows a 34% survival rate for males and 37% rate for females.1
Children, age 0 to 19, had the highest five-year survival rate at 72% between 1995 and 2006. That survival rate diminishes as age increases, down to 5% for persons age 75 and older.1

For Whites, the five-year survival rate jumped from 22% between 1974 and 1976, to 34% between 1996 and 2003.6 For African Americans, the five-year survival rates for the same time periods increased from 27 to 37%.6


NOTE – The term ‚five year survival‛ does not mean that group of people lived only five years after the start of the study. It means the study followed them for only five years. Five years is a standard ‚goal‛ in measuring survival for most diseases.
Five year, or even ten year, survival statistics do not tell us how many people lived longer than the five or ten years of the study. Those statistics require longer-term follow-up of people diagnosed with the given disease, which can be challenging to do in our mobile society. It can be very difficult for researchers to stay in contact with patients for more than five or ten years given the frequency of American family moves.

Sources

1 CBTRUS (2010). CBTRUS Statistical Report: Primary Brain and Central Nervous System Tumors Diagnosed in the United States in 2004-2006. Source: Central Brain Tumor Registry of the United States, Hinsdale, IL. website: www.cbtrus.org
2Ries LAG, Melbert D, Krapcho M, Mariotto A, Miller BA, Feuer EJ, Clegg L, Horner MJ, Holader N, Eisner MP, Reichman M, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2004, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2004/, based on November 2006 SEER data submission, posted to the SEER web site, 2007.
3Lenhard Jr. RE, Osteen RT, Gansler T. Clinical Oncology, American Cancer Society, 2001, p. 655.
4Legler JM, Ries LAG, Smith MA, Warren JL, et al. ‚Brain and Other Central Nervous System Cancers: Recent Trends in Incidence and Mortality.‛ Journal of the National Cancer Institute, Vol. 91, No. 16, August 18, 1999, pp. 1382-1390. [COULDN’T FIND THIS REFERENCED IN THE DOCUMENT ANYWHERE]
5Porter KR, McCarthy BJ, Freels S, Kim Y, Davis FG. Prevalence estimates for primary brain tumors in the US by age, gender, behavior, and histology.
Neuro–Oncology, In Press.
6Jemal A, Siegel R, Ward E, et al. Cancer Statistics, 2009. CA: A Cancer Journal for Clinicians. American Cancer Society. Published online May 2009.
7Smith MA, Freidlin B, Ries LAG, Simon R. ‚Trends in reported incidence of primary malignant brain tumors in children in the United States.‛ Journal of the National Cancer Institute, Sept 1998, Vol. 90, No. 17, pp. 1269-1277.
9Sundeep, D, Lynch, C. Trends in brain cancer incidence and survival in the United States: Surveillance, Epidemiology, and End Results Program, 1973 to 2001. Neurosurgical Focus 20 (4):E1, 2006
10CBTRUS (2009). 2009-2010 CBTRUS Statistical Report: Primary Brain and Central Nervous System Tumors Diagnosed in Eighteen States in 2002-2006. Published by the Central Brain Tumor Registry of the United States, Hinsdale, IL. website: www.cbtrus.org.

For Additional Information
In 1990, the American Brain Tumor Association conducted a feasibility study to evaluate the status of brain tumor data collection, and to determine the practicality of starting a registry whose purpose would be the collection of statistics for both benign and malignant brain tumors. The results of that study highlighted both the need and feasibility of such a registry. The American Brain Tumor Association then incorporated the Central Brain Tumor Registry of the United States (CBTRUS), and provided organization and financial support to the new entity.
CBTRUS was incorporated as a not-for-profit organization in 1992 to provide a resource for the gathering and circulating of current information on all primary brain tumors, benign and malignant, for the purposes of:

-   describing incidence and survival patterns
-   evaluating diagnosis and treatment
-   facilitating etiologic (causation) studies
-   establishing awareness of the disease
-   and, ultimately, for the prevention of all brain tumors.

State or regional tumor registries obtain information about brain tumor patients
from hospitals in their area. CBTRUS began by collection information from four registries that were already collecting data on benign and malignant brain tumors. Using their preliminary data, CBTRUS conducted studies to determine diagnostic accuracy and data completeness. With the passage of the Benign Brain Tumor Cancer Registries Amendment Act (Public Law 107-260), government funded surveillance organizations in the US are required to collect data on all primary non-malignant, as well as malignant, brain and CNS tumors beginning in 2004. The data collected is used to define incidence roles of all primary brain tumors, and can be used by researchers to identify geographic clusters of patients.

Please visit the Web site of the Central Brain Tumor Registry at www.cbtrus.org. For more information or additional statistical data on primary brain tumors, contact CBTRUS at 3333 W. 47th St., Chicago, Illinois 60632. Phone: 630-655-4786.
Web: www.cbtrus.org

[nanramone]

TMI for me!  :-)

[ppearl214]

Frankly, all of these numbers and equations give me a headache.  I suspect that the newly increased AN statistics (2 in 100,000) are likely valid and simply reflect, as Phyl stated, the efficiency of modern technology as well as doctor/patient awareness of this benign and sometimes exasperating skull-based tumor.  2 in 100,000 is still in the 'rare' category - so we're still unique.

Jim

Agreed Jim... the stats are too overwhelming for me as well (for many here as well.... not all, but many).  AN's are still deemed "rare", being approx 6% of ALL brain tumors (benign and malignant), with meningiomas being the most prevelent.  Summaries work for me.... I'm having a 'brain wreck" and too many stats  enhance my vertigo.
Phyl

[leapyrtwins]

I'm with Jim, Nan, and Phyl on this one; TMI 

IMO all the stats in the world mean absolutely nothing until they are applied to you and your own case.  Life in general is basically a crap shoot - and so is AN treatment.  Whether 4 out of 10 people have facial nerve damage as the result of surgery (something I just made up) quite frankly means nothing to me unless I'm one of those 4 out of 10.

My doc gave me stats on everything from my chances for a CSF leak (which I didn't have) to my chances of ending up SSD (which I am), but in the end all that mattered to me was what I personally wound up facing post op.

The stats, for the most part, were in my favor.  But if I would have taken all of the stats he gave me and really examined all the possibilities, chances are I would have been "paralyzed" with fear and as a result have been unable to make a treatment decision.

Sometimes you just have to educate yourself, weigh the odds, decide how lucky you feel, roll the dice, and hope for the best.

Of course, when making a treatment decision, highly experienced, highly qualified doctors are something that should never be overlooked.

Jan

[Jim Scott]

Jan ~

Your astute comments summarize and cut to the heart of the matter (AN incidence).  Some folks may enjoy pouring over statistics for educational value and that's fine (and occasionally useful) but for most of us, statistics mean little unless you're one of the people in some statistical group and then, for most, the statistics mean next to nothing because, unlike statistics, the reality of some AN-related problem is tangible and must be dealt with on a practical, flesh-and-blood basis, not in the abstract.  I agree that anyone who tries to make a treatment decision based on statistics, alone, will probably never make a decision because there are too may variables to use statistics as the sole criteria for choosing a treatment.  As you correctly noted; when you get right down to it, life is a risk. 

Jim

[leapyrtwins]

Wow, did Jim Scott just call me "astute" ?     Where's my partner in crime, Lori, to make an amusing comment about that?     

Sorry, couldn't resist. 

In all seriousness, I know that Annamaria's husband is a statistician (statistics are his life) and all this data is totally understandable - and relevant - to him.  And I totally "get" that information like this is what drives him to make decisions - and to counsel those he loves to make decisions. 

But, I'm just a very logical (black & white) person; not a lot of gray areas in my life - which is one of the reasons I knew I couldn't watch & wait after my diagnosis.  I also have a tendency to "fly by the seat of my pants" which means I rely a lot of my gut, my heart, and my instincts.  It's just the way I operate 

All of us look at things a little differently, and everyone obviously needs to make the best decision for them - based on what "kind" of person they are.  There is no right or wrong.

[lori67]

But the real question here is..... if a bus is traveling 45 mph going east on a Sunday in Oshkosh, WI and a motorcycle is going due south in Salt Lake City on a Wednesday afternoon, what color socks is the busdriver wearing?   

Yep, that's about how much sense the above stats make to me.

I have to agree with Jan - I'm not a numbers person (oddly, she is!) It affected me and that's the only stat I can guarantee is correct.

I do know, that statistically speaking, Jan, you were more likely to be called "astute" than I ever will be!   

Lori