The Gerry & Nancy Pencer Brain Tumor Centre

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Introduction
Gerry Pencer: Business Man, Cancer Patient, Philanthropist
Brain Tumors: Basic Facts
The Gerry & Nancy Pencer Brain Tumor Centre
The Team
Upcoming Plans
Introduction
The Gerry & Nancy Pencer Brain Tumor Centre logoGerry Pencer would be very proud of the legacy he created back in 1998 and that his family continues to grow and support.
  The Gerry & Nancy Pencer Brain Tumor Centre is a partnership of The Gerry & Nancy Pencer Brain Trust and the Princess Margaret Hospital.  Since opening in November 1998, the Centre has provided information, treatment and support for brain tumor patients and their families.  Today, it is the largest brain tumor centre in Canada, and one of the largest in the world in terms of patient visits. 

The creation of an all-in-one 'Centre of Excellence' is reflective of Gerry's personal philosophy, which he explained in his personal memoir,


The Ride of My Life

I don't like half measures. My career has been built around being an innovator, never giving up, making things happen, being a catalyst for change, a change maker.  I want to bring that to the foundation.

The Centre has attracted and retained an outstanding team of healthcare professionals in a variety of disciplines, and, in the words of their esteemed Medical Director, Dr. Warren Mason, "Having experts from a wide variety of disciplines working together in one location creates a patient-centred clinic that is unique in Canada, as well as an extremely dynamic research environment."

Gerry Pencer: Business Man, Cancer Patient, Philanthropist
 
Gerry Pencer
Business Man
Gerry Pencer was a legendary Canadian entrepreneur who never had a problem making money.  As a teenager, he set up a gumball empire in Montreal, and, by the age of 25, he had built a catering business that employed almost 300 people.  In the 1980s, he turned a Honda dealership into Financial Trustco Capital Ltd, a $2 billion financial conglomerate.  Then, on Black Monday, 1987, Gerry's empire collapsed. 

After a few months, he returned to work with his brother, and rebuilt his fortune, by re-inventing Cott Beverages and growing it into a huge international success.  Their first private label—PC Cola for Loblaw—was launched in March of 1991.  Six months later in an article in Forbes titled "Why consumers are no longer faithful to their favorite brands", Cott was singled out for its success in taking on the most successful brands on the planet:  "To beat pros like Coke or Pepsi at its own game is an amazing feat for Cott and an object lesson for those who believe that brand loyalty is guaranteed."

In his book, The Ride of My Life, Gerry talks about the art of the deal.  He explains:
You've got to see every person you approach as a new custom-made suit.  People don't want a ready-made suit, they want a custom-made suit.  That's very important.  If a customer doesn't want pants, you don't phone him up and say, "Hey I'm quoting this with pants."  Better you should get the deal, then sell him the pants later.  You do this by taking time with people, by being able to communicate with them, particularly through their eyes.  Very few people can make eye contact.  You're never going to sell the big picture unless you're able to do that.
Gerry loved people, and had a great sense of humour.  One of his many gifts was building and maintaining strong personal relationships, based on his ability to listen well and look after people.

Cancer Patient
In May of 1997, Gerry was given his diagnosis of grade IV glioblastoma—a malignant brain tumor.  As he writes in his book:
I'm in a tough mess.  But if my life has taught me anything, I seem to be at my best in a mess.  I believe the only way you get where you want to be is to never give up.  That's how I've lived my life and that's how I'm going to fight this disease.  Nothing is impossible, including beating a death sentence the way I have.
On May 29, Dr. Mark Bernstein of the Toronto Western Hospital performed awake brain surgery to remove the tumor. This was followed by five weeks of intensive radiation treatment, and later with stereotactic radiation (very high doses of radiation with precision accuracy), chemotherapy and experimental drugs that boosted his immune system.

Gerry had the financial wealth to go to any hospital, see any doctor and pay for any drug. He and his wife Nancy did travel to Memorial-Sloan Kettering in New York where doctors concurred with the diagnosis he had received in Toronto and the treatment plan.
It's frustrating to stay optimistic, hearing everyone say, "Well you do have a terminal illness." ... I had to become my own doctor.  That was the only way I could overcome the failure mentality that surrounded my disease.  I knew I had to go out and search for the best treatment.  I was not about to accept the status quo.  I approached it the way I'd do a business deal.  I'd question everything.  And I'd create inter-dependency with my doctors.  I needed to surround myself with the best team if I was going to have a chance. 
The various treatment courses combined to give Gerry an additional eight months to spend with his family and good friends. He even had an audience with the Pope following a trip to the French and Italian Rivieras.  He lived life to the fullest, and will continue to be an inspiration to those who knew him.

Philanthropist
Gerry and his family had been active supporters of many important causes over the years, including B'nai B'rith Foundation, the Weitzman Institute of Canada, the Clarke Institute Foundation, and the Hebrew University in Jerusalem.  Upon learning his diagnosis, one of his main ambitions was to set up a foundation that would (among other things) build and support a centre specifically for brain tumor patients at The Princess Margaret. 
I want the foundation to break new ground, to help people directly.  I want to get everyone involved—hospitals, universities.  If my life in business has taught me anything, it's that when people are interdependent they'll work very hard toward a solution.  I want to shake things up.  I want to start a war.
He wanted the Centre to be a continuum of research and patient care, just as Princess Margaret Hospital is. He believed that greater integration of the various treatment strategies (surgery, radiation, medical imaging, drug therapy, social work, and psychiatry) would be very beneficial.  He also didn't want his Centre to look like a hospital. 
The system doesn't focus on the living portion.  I'm going to have social workers talking to families, figuring out how these people can fit into their new lives.  …most people still have to worry about making a living.  How are they going to support themselves?  That will be a very big part in helping these people.  Otherwise they just have to pack it in.
Gerry and his family donated $5 million to establish The Gerry & Nancy Pencer Brain Tumor Centre. On May 26, 2010, ten years of annual fundraising will be celebrated with a festive, flirty and fabulously French gala—suitably named TEN. (Ticket information for the gala is available at www.pencerbraintrust.com or 416-923-2999.) All funds raised are used to ensure the Centre remains supported and true to its mission.
Brain Tumors: Basic Facts
 
Brain
Brain tumors, fortunately, are a type of cancer which occurs less frequently.  The Canadian Cancer Society reported that in 2009, there were approximately 2,600 new cases of brain tumors—slightly more men (1,450) than women (1,150).  There were approximately 1,750 deaths in that year due to brain tumors.  

So brain tumors represent 1.6 percent of new cancer cases, but 2.4 percent of cancer-related deaths.  A patient has a 23 percent probability of surviving five years following the diagnosis of a brain tumor.

Metastatic brain cancer is cancer that has originated in another part of the body, but has spread to the brain as a 'secondary' or 'tertiary' site.  Metastatic brain tumors are more common than primary brain tumors. 

Symptoms of a brain tumor may include focal weakness, difficulty walking, confusion, memory loss, personality changes, seizures, and headaches.  Nausea, vomiting, and double vision or loss of vision could also be indicators.  However, some patients with a brain tumor may experience no symptoms. MRI and CT scans along with surgery to obtain a tissue sample are the primary tools used to confirm a brain tumor diagnosis.

There are more than 100 types of brain tumors, with gliomas (tumors that grow from a glial cell, which make up structural support tissue in the brain) representing the large majority of cases. According to data from the Central Brain Tumor Registry of the U.S., gliomas account for 42 percent of all brain tumors and 77 percent of all malignant brain tumors.  Gliomas are classified using a scale of 1 to 4.  The higher the grade, the more aggressive the tumor. 

Treatment for a brain tumor is highly personalized.  Surgery is not always an option for some patients. Factors such as age and overall health of the patient, plus size/location of the tumor influence whether surgery is an option.  Most patients will receive some combination of surgery, radiation and chemotherapy treatment.
 
  • Radiation therapy works by targeting actively dividing cells.  High energy radiation damages DNA in all cells where it concentrates in the brain.  Tumor cells, by definition, are defective in repairing the DNA damage and therefore die with time.  Normal brain tissue cells have the capacity to repair the damage and therefore are spared relative to the tumor tissue.
     
  • External beam radiotherapy is the most common technique for administering radiation to brain tumors. Patients are treated on a machine called a linear accelerator and typically receive between 3 and 6 weeks of daily treatment.
     
  • All brain tumor patients at The Princess Margaret are treated with intensity modulated radiotherapy (IMRT).  The technology has advantages over the older conventional radiation by shaping the radiation better around the target and sparing the normal brain tissue.  This technology is a major advance in radiation oncology.  The drawback is slightly longer treatment times than older style radiation.
     
  • Chemotherapy has played an expanding role in the treatment of brain tumors in recent years.  At present, temozolomide is the most commonly prescribed chemotherapy for brain tumors.  It is a capsule taken orally and works by alkylating DNA.  It has excellent penetration in the central nervous system, has rapid and complete absorption and rapid renal elimination.  Side effects from temozolomide are minimal in most patients.
The patient's wishes are always paramount considerations in planning any brain tumor treatment.  While treatment for a brain tumor uses a variety of powerful therapies, most patients tolerate the treatment well and are able to carry on with their usual daily activities with some minor modifications.  Maintaining a good quality of life is an important aspect of care for those patients living with a brain tumor.

The Gerry & Nancy Pencer Brain Tumor Centre
As was Gerry Pencer's vision, the Centre offers comprehensive and high quality treatment, education and support for brain tumor patients and their families.  Located on the 18th floor of the hospital, the Centre is designed to be warm and aesthetically pleasing to all who visit.  With lovely hardwood floors, soft lighting, stylish furniture, fresh flowers, a resource library and inspiring artwork, the atmosphere is meant to encourage optimism and comfort.

The Centre has nine brain tumor clinics per week.  In a typical week, approximately 125 patients are seen.  10 to 12 of these patients will be newly diagnosed with their brain tumor.

Along with the highest quality medical services, the Pencer Brain Tumor Centre also provides support services that inspire hope by giving people tools and approaches that help them cope more effectively with their illness.  This includes:

  • relaxation therapy led by an occupational therapist
  • nutrition counseling
  • a resource library, and
  • monthly support group meetings that facilitate patients and caregivers connecting with one another to share stories, feelings and coping strategies

Clinical and translational research are priorities for the Centre, and an extensive number of clinical trials are ongoing.  In 2003/04, PMH was instrumental in a ground-breaking study that showed a favourable outcome in the use of temozolomide chemotherapy for newly diagnosed glioblastoma multiforme, the most common type of brain tumor.  Patients received the drug during and following radiation therapy.  At two years, patients who received the chemotherapy and radiation in combination had a 26 percent survival, and those treated with radiotherapy alone had an 8 percent survival.  This improved the odds of being alive two years after diagnosis from 1 in 10 to better than 1 in 4.  This was the first significant advance in brain tumor research and treatment in 3 decades.

Dr. Warren Mason, the Medical Director of the Pencer Brain Tumor Centre, was a leader in this global study which involved 573 patients from 85 centres worldwide. Twenty-six patients from the Pencer Centre participated in the study.

Many of the large pharmaceutical companies active in researching drugs for brain tumors come to the Centre looking to partner in clinical trials. The Pencer Brain Tumor Centre is committed not only to testing the promising drugs that could help our patients, but to stimulating more early drug development in Canada and globally.

In September of 2009, Dr. Mason and Toronto Western Hospital neurosurgeon Dr. Ab Guha organized a two-day symposium for investigators from across the country, with a focus on engaging younger clinicians in the area of drug development for brain tumors.  Pharmaceutical companies were invited to participate with the hope of fostering closer collaboration and building new alliances.  Dr. Mason hopes to use some of his funds from the Kirchmann Family Chair in Neuro-Oncology Research to build these alliances and accelerate this area of research nationally and internationally.
A generous anonymous donation from a Pencer Centre patient combined with additional donor funding has been used to acquire equipment that allows physicians to test patients for a specific tumor characteristic. Knowing a patient's status for this tumor characteristic enables the treatment plan to be more personalized and more effective.

The Team
The team at the Pencer Brain Tumor Centre represents many disciplines, and they collaborate to provide brain tumor patients with a 'single destination' for their care.  Depending on the specifics of their illness, patients may need treatment and follow-up in many departments of the hospital (e.g., surgery, radiation, drug trials, chemotherapy, psychosocial services), and the Pencer team works hard to make those 'many departments' seem like one.
 
Pencer Centre staff smiling
Surgery for patients of the Pencer Centre is provided by one of four neurosurgical centres in Toronto:  Toronto Western Hospital, St. Michael's Hospital, Sunnybrook Health Sciences Centre and Trillium Health Sciences Centre. 

'Tumor Boards' are regular meetings where physicians consult one another about treatment and surgical strategies for specific patients.  These meetings are attended by neurosurgeons, radiation oncologists and neuro-oncologists on a bi-weekly basis.

 
Current staff of the Pencer Centre
 
Dr. Warren Mason Medical Director
Dr. Normand Laperriere Associate Director
Dr. Mary Elliott Psychiatrist
Dr. Barbara Ann Millar Radiation Oncologist
Dr. Cynthia Menard Radiation Oncologist
Dr. Arjun Sahgal Radiation Oncologist
Dr. Mary Elliott Psychiatrist
Dr. Kim Edelstein Neuropsychologist
Dr. Matthew Foote Radiation Oncology Fellow
Maureen Daniels Centre Coordinator
Cheryl Kanter Social Worker
Mariya Bakalets Clinical Trials Nurse
Leslie Williams Clinical Trials Nurse
Natalie Jewitt Psychometrist
Jameela Lencucha Rehabilitation Consultant
Sandy Ayers Administrative Secretary
Linda Weatherston Ambulatory Care Nurse
Mary Jane Worthington Ambulatory Care Nurse
Janet Bobojchov Ambulatory Care Nurse
Wilhemena She Ambulatory Care Nurse
 
Pencer Centre Staff Team Photo Front row (l to r):  Mary Jane Worthington (Ambulatory Care Nurse), Connie Ziembicki (Dietitian), Dr. Caroline Chung (Radiation Oncology Fellow), Judianna Law (Ambulatory Care Nurse), Maureen Daniels (Centre Coordinator), Silvi Kuld (Data Manager).  Second row (l to r): Cheryl Kanter (Social Worker), Linda Weatherston (Ambulatory Care Nurse), Dr. Warren Mason (Medical Director), Dr. Norm Laperriere (Associate Director), Dr. Matthew Foote (Radiation Oncology Fellow), Leslie Williams (Clinical Trials Nurse), Sandy Ayers (Administrative Secretary)

Dr. Warren Mason, MD, FRCPC
Dr. Warren Mason
Dr. Mason is the Medical Director of The Gerry & Nancy Pencer Brain Tumor Centre, and the holder of the Kirchmann Family Chair in Neuro-Oncology Research.  He graduated in medicine from the University of Toronto, and completed residencies in internal medicine and neurology at the University of Toronto and McGill University. He received fellowship training in neuro-oncology at Memorial Sloan-Kettering Cancer Centre in New York. 

Dr. Mason is Assistant Professor in the Faculty of Medicine at the University of Toronto, and a member of many professional organizations including the Canadian Neurological Society, the American Academy of Neurology, the American Board of Psychiatry and Neurology, the American Society of Clinical Oncology, and the Canadian Brain Tumor Consortium.  He is Co-Chair of the NCIC Clinical Trials Group with the mandate to actively develop an investigational new drug program for glioma. He is a recipient of numerous awards and scholarships including the Merit Award, American Association of Clinical Oncology. 

The focus of Dr. Mason's current research is the development of medical therapies for primary brain tumors.

Dr. Normand Laperriere, MD, FRCPC
Dr. Normand Laperriere
Dr. Laperriere is the Associate Director of The Gerry & Nancy Pencer Brain Tumor Centre, and is one of the pre-eminent radiation oncologists in the country.  He has been on staff at Princess Margaret Hospital since 1985, and assumed his position at the Pencer Centre when it opened in 1998.  He is an expert in the treatment of patients living with brain tumors, and there are few physicians in Canada who treat more brain tumor patients each year than Dr. Laperriere.

In addition to providing treatment to his patients at the Centre, he is the Central Nervous System Site Group Leader at PMH, and the director of one of the busiest stereotactic radiation therapy programs in the world. He is Associate Professor, Department of Radiation Oncology at the University of Toronto, and is involved in the teaching and training of medical students, residents and fellows.

The Pencer Centre, like Princess Margaret Hospital, has an important teaching mandate. Medical students and residents rotate through the Centre learning from senior staff about the treatment approaches for the different types of brain tumors.

The Canadian Brain Tumor Consortium (CBTC) is a cooperative national group with the mission of conducting multi-centre trials in brain tumors.  It lobbies industry for greater access to investigational and promising drugs.  Physicians and allied health staff at the Pencer Centre are active members of the CBTC, and are involved in efforts to expand clinical trials and patient and family programs through this organization.
 
Pencer Centre fundraisers
The Centre is fortunate to have the support of their Patient & Family Advisory Committee (PFAC).  This is a dedicated group of volunteers, comprised of patients, family members and staff from the Centre.  It meets monthly to provide input to the Centre with respect to the development of patient programs and services from a patient's perspective.  In addition, this dynamic group organizes the annual Head for a Cure 5K walk in support of the Pencer Centre which to-date has raised over $600,000. These funds are used to support the salary of a rehabilitation consultant along with a variety of other worthwhile and innovative projects identified by PFAC. The Centre is also fortunate to have helpful and friendly volunteers available to assist when needed.
Upcoming Plans
Over the next several years, Dr. Mason plans to use funds from the Kirchmann Family Chair in Neuro-Oncology Research to stimulate closer collaboration between basic scientists and clinicians, launch clinical trials for brain tumor treatment at PMH, and organize a cohesive national network of investigators to ensure that drug development for brain tumors remains an area of active clinical research.  Specifically, the funds will support the following activities:
  • Provide the infrastructure for clinical trials at PMH, and for national trials where PMH is the coordinating centre.  Funds will support protocol development, clinical trials nursing, database management and translational research initiatives.
  • A neuro-oncology fellow at PMH who will participate in clinical trials.
  • Scheduled national meetings to review the state of the art, review progress of ongoing studies and initiatives, and discuss and design new studies.
As a Disease Site Chair of the National Cancer Institute of Canada, Clinical Trials Group, Dr. Mason is committed to ensuring that brain tumors remain on the agenda of this consortium.  There is also an opportunity to work closely with the Drug Development Program at PMH as well as the PMH Consortium to involve more investigators, increase the odds of gaining access to promising new drugs and provide more patients with opportunities to participate in clinical trials.  Future trials include:
  • A worldwide collaboration to define the most appropriate initial treatment of anaplastic gliomas
  • Studying the impact of adding an anti-angiogenic agent (bevacizumab) in the initial management of patients with newly-diagnosed glioblastoma multiforme (GBM).
  • Evaluating a new brain tumor stem cell therapy in patients with recurrent GBM.
  • Examining dosing regimens of a new anti-angiogenic therapy in patients with GBM at first or second relapse.