This is the story of Scott
Vickroy, long-term survivor of a grade 3 astrocytoma brain tumor. We offer
this peer support to help others.
Scott's Brain Tumor Success StoryLet us say first, before you read Scott's story, that all brain tumors and brain tumor patients are unique. That's what makes this diagnosis so very difficult, because the treatment options vary widely and as yet, no one can claim to have the cure.
We share Scott's story as our own experience (and not as medical advice) because we know how much it helps to know you're not alone. Here is our advice for you or your loved one faced with a brain tumor:
For more information on researching your particular brain tumor, please check out our favorite websites for brain tumor patients. You'll find links to the national brain tumor organizations, supporting websites, survivor stories, and links that may help you explain to children about the brain tumor.
What follows is a summary of Scott's brain tumor battle. Shelly's site
for cancer caregivers is
Vickroy, at age 33, had only three brief episodes in October 1998 of
feeling disconnected with his right hand, not quite clear in the head,
unable to make the plan to get a glass of water. After the third episode
his wife, Shelly, took him to a neighborhood walk-in clinic where the
doctor quickly ruled out simple causes and, suspecting something more
serious, scheduled him for an MRI the next day.
The MRI was at 1 o'clock and by 4:30 p.m. Scott and his wife, Shelly, were called in to hear the results. Just the call alone was confirmation that something was seriously wrong in Scott's brain. "I haven't seen the MRI myself or the written report, but the technician called me directly to say 'Did you know this gentleman has a large mass in his brain?' I have called a neurosurgeon, who agreed to see you tomorrow morning."
Life was blur for the next two weeks after Scott and Shelly first saw the MRI's showing a tangerine-size tumor with a large, fluid-filled cyst in the left parietal lobe of Scott's brain. With the tumor in an operable location, surgery was scheduled for 10 days later with the goal of draining the cyst and removing as much of the tumor as possible.
|Family and friends were notified, mainly through an e-mail
list which was forwarded around the world and still keeps friends posted
on Scott's status today. A big birthday party was planned for later that
week to celebrate Scott's 33rd birthday.
Telling their almost-5 year old son, Wil, was scary but not as hard as expected. "Daddy has an 'owie' in his head called a brain tumor. He's going to the hospital so the doctor can take it out." We have told Wil everything, all along, showing him the MRI's, letting him visit at the hospital, even talking about death. But we've done it at the level of his understanding and always with the reassurances that he is and will always be loved and taken care of. He's come through his own journey amazingly well.
To this day, we remain awed, humbled, blessed and ever so grateful for all the love and support we gained by sharing our fears and our feelings. Shelly kept everyone informed through the e-mail list, which has grown to well over 100 recipients including friends, family, coworkers, former coworkers, and even total strangers. The prayers and positive thoughts from all of those people have flowed back in our most desperate hours, helping us feel more peaceful and optimistic than would have been possible all alone. These people, our lifesavers, have provided meals after surgery and during treatments, childcare, pet care, driving to appointments, house-cleaning, sidewalk shoveling, weed pulling, fluorescent lightbulbs after Scott's photodynamic therapy, blood and platelets after Scott's stem-cell rescue, and more moral, emotional and spiritual support than we can begin to describe.
|The morning after the MRI, Scott and Shelly met the
neurosurgeon, someone with a stellar reputation among everyone we spoke
with. We've since concluded that all neurosurgeons have the deserved
reputation for being "the best" by virtue of being a
brain surgeon at all. The true difference about which neurosurgeon is best
for YOU may lie in which "latest
and greatest toys" or surgical equipment they are able to use (such
as 3D imaging and "the Wand") as well as their personal
attitudes and experience with brain tumor "resection success."
Of course, in emergency situations, you may not get to choose your surgeon.
Scott's surgery was 10 days later, on November 14, 1998. To our dismay, the neurosurgeon was only able to drain the cyst and biopsy the tumor. It appeared so similar to surrounding brain tissue that he said it was too risky to try removing it, possibly cutting out too much healthy brain tissue in the process. We now know that many facilities have equipment (we recommend that you ask if they do) such as "interoperative MRI" and "stealth guided imagery" where they can see the tumor on MRI during the surgery and use other techniques to enable them to remove as much tumor as possible.
|The pathology report diagnosed the tumor as a gemistocytic
astrocytoma, grade 2 (of 4 possible "grades"). Astrocytomas are
tumors of the "astrocytes," or support cells of the brain, as
opposed to the "thinking" cells. Astrocytomas are also the most
common type of primary brain tumor. A glioblastoma multiforme (GBM) is the
name of the grade 4 astrocytic tumor. The doctors had thought by the size
of Scott's tumor on the original MRI that it was a grade 4 GBM and were
surprised by the pathology that it was a lower grade. We later found out
that different institutions use different grading systems and Scott's
original pathology slides were called grade 3 at MD Anderson.
The prognosis (or shall we say, opinion based on statistics): "More than 2 years, probably 5, maybe 10. This kind of brain tumor is not curable but it can be kept in check, with radiation and chemotherapy, for years at a time. Because it's a grade 2 tumor, it is slow growing - although it could quickly degrade to a much more aggressive, faster growing tumor."
|By the end of February 1999, Scott had completed 6 weeks of
radiation to his head. Scott's radiation dose was 54 grey (5400 rads),
which was administered in a 1 minute dose every day, Monday through Friday,
for 6 weeks. The last day consisted of a "boost" of radiation in a smaller
area at a higher dose. (Remember, this was in 1998-99 ago and a more standard, beneficial treatment now is to combine
radiation with chemotherapy.)
During radiation, Scott also sought help from a neuropsychologist, neurologist, physical therapist, Healing Touch practitioner, and nutritionist. (Contact us if you want to know more about any of these specialties!.
But four weeks after radiation, a follow-up MRI showed that the tumor had doubled in size! How could a slow-growing tumor double in size during a therapy that was supposed to shrink it? Sometimes radiation can actually cause tumor growth. Scott's tumor was now classified as "significantly recurred."
|During the radiation treatments, Scott luckily found
out about the newly formed Brain Tumor Team within the
Neurological Institute (CNI) at Swedish Medical Center in Denver. It was a
fellow brain tumor patient, Allie, whom Scott met at the radiation
oncologist office who recommended the CNI Brain Tumor Team. The unique
aspect of the team is truly its team approach: More than 10 specialists --
ranging from neurosurgeons, neuro-oncologist, radiation oncologist,
neuropsychologist, neurologist, pathologist, social worker and more --
gathered to consult on Scott's case and give us their opinion. We took our
video camera to record the conference so we wouldn't forget the details.
So, from the time Scott discovered his tumor had doubled, his story went like this:
The range of opinions was daunting and surprising, but maybe it shouldn't have been. We've concluded (and heard other doctors agree) that because everyone is trying to find The Cure for brain tumors, everyone has their own opinion about how best to treat their patients. The choices are as vast and varied, as can been seen on Al Musella's wonderful and comprehensive website about clinical trials and noteworthy treatments. Every patient has to follow their own instincts when deciding upon their own treatment plan. At every step, we heavily weighed the pros and cons, wondering how aggressive was aggressive enough vs. the side effects and resulting quality of life.
|We decided to put our trust in the
CNI Brain Tumor
not only because it meant undergoing treatment in our home town, but
because CNI’s aggressive treatment plan included the cutting-edge clinical
trial of photodynamic therapy (PDT). In addition, the surgical team would
include a CNI neuropsychologist we
already knew, who would literally hold Scott's hand and talk to him
through the awake portion of surgery to help ensure his speech, vision,
motor skills and cognitive function would remain intact.
In March 1999, Scott underwent my second surgery – an awake craniotomy
using 3D imaging, the Wand, and photodynamic therapy. Dr. Timothy Fullager
accomplished a 99% tumor resection without any loss of function. We had
been told to expect only 75-80% resection!
|We think a significant adjuvant to Scott's surgery was an
experimental protocol known as photodynamic therapy (PDT), a phase 3
clinical trial in part pioneered by one of the Denver surgeons on the team
and only available in three cities in North America. The day before
surgery Scott was injected with a drug called Photofrin, which tumor cells
and other fast-growing cells (such as his skin) absorb. After the surgeons
removed as much tumor as possible, a laser light was shined into the
cavity. The now-photosensitive tumor cells die when exposed to the red
light of the spectrum. Because the light can penetrate up to 1 cm into the
brain tissue, it "killed" an additional margin of microscopic
brain tumor cells that could not be removed surgically.
The only side effect of PDT is that for 6-8 weeks, Scott could quickly sunburn in direct sunlight and incandescent (regular light bulb) lighting - only fluorescent lights were okay. By the end of his "light quarantine" he looked like he had been to the Bahamas with his glowing tan, which he got from the dim incidental light. It wasn't so bad!
Interestingly, the PDT clinical trial is over at CNI so it's not
available as a brain tumor treatment there anymore. However, if you Google
on "photodynamic therapy for brain tumors" you will find a variety of
information and places where it might still be in use. PDT is approved by
FDA for other cancers, such as early-stage lung cancer, endometrial cancer
and esophogeal cancer (it has to be a cancer that can be accessed by the
laser directly or during surgery).
|Next Scott underwent three months of chemotherapy with an
aggressive cocktail given every four weeks (BCNU, procarbazine,
cisplatinum, and VP16/etoposide). He spent Monday through Friday in the
hospital each month. He had very little nausea thanks to the wonder-drug
Kytril. The next day or two was spent at home with IV saline to continue
flushing the chemo drugs from his system. Luckily, the CNI brain tumor
team is now using a more tolerable regime which can be administered in the
office (BCNU, CPT-11/camptosar and temozolamide). Back in 1999, Temodar
was not yet approved by FDA. (Visit
CNI for their current treatment protocols.)
|Scott’s final treatment step was high-dose chemo and a
stem cell rescue in July 1999. The first step was a dose of
"priming" chemo (VP16/etoposide, cytoxin and procarbozine) in
preparation for the stem-cell harvest, in which Scott's own stem cells (or
bone marrow "seeds") were harvested. Next, an extra high dose of
chemotherapy was given (thiotepa, VP16 and carboplatin) – toxic enough
to kill off all the tumor cells, all of his bone marrow, and the all
fast-growing cells such as skin, hair, and the lining of his sinuses and
GI tract. Then his stem cells were returned to his body to re-grow his
bone marrow (thus his immune system). The chemo took 5 days as an
outpatient and then Scott was admitted to the hospital for about 2 weeks
to receive his stem cells and wait for it to "start growing" his
bone marrow. It was a grueling two weeks, but once the stem cells
"grafted" his recovery was rapid. The all-clear MRI’s ever since
then appear to prove that Scott's treatment was
|From 2000 to 2002, Scott’s only ongoing treatment consisted of
high-dose Tamoxifen (used for breast cancer patients). He
took 10 pills a day (whereas breast cancer survivors take 1-2 pills a
day). His neuro-oncologist prescribed Tamoxifen for a full 3 years from
date of recurrence.
As Scott’s strength and immune system slowly return to normal, he is also trying to return to a normal life. Scott is able to drive again and downhill ski; he has not returned to his career of computer programming since his diagnosis, and he has trouble writing, concentrating and remembering – but not many physical deficits. His humor and intelligence are fully intact!
Scott is officially on disability status, receiving Social Security Disability income, applying for which was a learning experience in itself.
To reach the same physicians who helped us, here are their phone numbers:
|Helpful BT Links||For other helpful links for brain tumor patients, visit our Links page.|
Shelly created a website for cancer caregivers, www.CaregiverHope.com Check it out and read a sample chapter from her upcoming book, Damocles' Wife: the inside story of cancer caregiving and long-term survival in the midst of motherhood, marriage & making life matter.
Last update: April 02, 2012.