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.

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scott.vickroy @ gmail.com
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Scott's Story:

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Scott's Brain Tumor Success Story

Let 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:

  1. Never give up hope!
  2. Keep asking questions until you are satisfied with the answer.
  3. If you don't like the answers of one doctor, seek more opinions!
  4. Don't let the statistics be your own prognosis. Each person is unique.
  5. Take charge of your treatment; follow your guts, your God and your heart in choosing what's right for you.
  6. Take the same big spiral notebook to every appointment to list your questions, the answers, the phone calls, everything. Keep your records organized!
  7. Ask for help and include others on your journey. The love and support you receive will make all the difference.
  8. Remember: You are not alone!!!
  9. Never give up hope!
  10. And . . . Never give up hope!!!

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 www.CaregiverHope.com
Here's a recent photo of Scott, far right, next to our son Wil (16) and his friend Susan on their trip to Japan.

Symptoms and Diagnosis

 Scott 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. 

 

Love and Support

 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. 

 

Surgery 1:
A biopsy only

 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.

 

Pathology Report

 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."

 

Radiation & Recurrence

 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."

 

Seeking
2nd Opinions

 During the radiation treatments, Scott luckily found out about the newly formed Brain Tumor Team within the Colorado 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:

  1. Seek opinions the CNI Brain Tumor Team in Denver: 
    Opinion - an "awake craniotomy" so that Scott could be tested during surgery to determine how much tumor was safe to remove. The team also stressed the importance of aggressive follow-up chemotherapy. Dr. Ed Arenson, neuro-oncologist told us his belief that low-grade astrocytomas can indeed be cured if treated early and aggressively, and for us, this spelled H-O-P-E.
     
  2. Seek opinion of the original neurosurgeon. 
    Opinion- do not undergo a second surgery because the risk of deficits is too great. Not enough tumor could be removed to be curative. Fight back with chemotherapy instead.
       
  3. Seek opinion of a local oncologist. 
    Opinion - get expert opinions from a cancer center specializing in brain tumors. This opinion impressed us as much as the others because it was came with an honest admission that he only treated 1-2 brain tumor patients a year and didn't have the experience or expertise to offer more than the standard (and proven ineffective) chemotherapy of BCNU.
        
  4. Seek opinions from nationally renowned brain tumor experts at M. D. Anderson Cancer Center in Houston, Texas: 
    Opinion - another surgery plus chemo. As with the Denver team, the Houston doctors recommended an "awake craniotomy" so that Scott could be tested during surgery to determine how much tumor was safe to remove without causing severe, irreparable deficits such as paralysis, blindness, and cognitive loss. M. D. Anderson also recommended follow-up chemotherapy and the option of clinical trials. Due to research quotas and schedules, however, they could not guarantee that he'd receive anything more than standard treatment protocol.. It would also mean travel to Houston every few weeks or months.
       
  5. Seek research and treatment information at a conference for brain tumor patients in Houston, organized by M  D. Anderson and the National Brain Tumor Foundation (these conferences are held around the country throughout the year and are invaluable!). (Also check with other national BT organizations for workshops, seminars and teleconferences.)
    Realization    : Research is years away from a "magic bullet" cure and until then, patients have to follow their gut instincts and their doctor's advice to find a treatment that may extend life by a few more months, or years. So many clinical trials test such a variety of treatments that there really is no "best" option. Choosing a treatment depends on a patient's proximity and access to expert medical care, insurance coverage, tumor type and location, age, severity of symptoms and side effects, not to mention personal attitudes towards battling the tumor.

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.

 

Surgery 2

 We decided to put our trust in the CNI Brain Tumor program, 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!  
 

Photodynamic Therapy

 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).
 

Chemotherapy

 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.)
 

Stem Cell Rescue

 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 successful. 

 

How is Scott now?

 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.

 

Helping Others

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.

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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.