Bladder Cancer Advocacy Network - BCAN http://www.bcan.org Leading the way to awareness and a cure Sun, 26 Apr 2015 17:21:19 +0000 en-US hourly 1 Ask a Doc with Dr. William Shipley http://www.bcan.org/shipleyinterview/ http://www.bcan.org/shipleyinterview/#comments Mon, 06 Apr 2015 14:40:46 +0000 http://www.bcan.org/?p=15223 William U. Shipley, MD, FACR is a Professor of Radiation Oncology at Harvard Medical School and Massachusetts General Hospital and BCAN Board Member.

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William U. Shipley, MD, FACR

William U. Shipley, MD, FACR is a Professor of Radiation Oncology at Harvard Medical School and Massachusetts General Hospital and BCAN Board Member.

 

The Ask a Doc feature was originally published in BCAN’s Spring 2015 “The Beacon” newsletter.

Question: What is bladder preservation therapy for bladder cancer patients?

Answer: Although the treatment offered by Urologists in the U.S. for patients presenting with muscle invasive bladder cancer is usually bladder removal, for many patients it is possible to treat these patients for cure using high-dose external beam radiation therapy in combination with chemotherapy while preserving normal bladder function.  This treatment allows the patient to keep their bladder and still leaves the possiblity of removing the bladder later if invasive tumors recur.  Based on the results of clinical protocols carried out over the last 2-3 decades sponsored by the National Cancer Institute, optimal curative treatment requires close cooperation between the Urologist, the Radiation Oncologist and the Medical Oncologist who together will carry out this treatment.  First, the Urologist must look into the bladder with a cystoscope and remove as much of the bladder tumor as is safely possible by doing a transurethral resection of the bladder tumor (TURBT).  Then the Radiation and Medical Oncologists will work together to give the patient combined systemic chemotherapy (affects the whole body instead of intravesical chemotherapy that is put in the bladder), and external beam radiation over a 6-8 week period.  This is an outpatient procedure where the patient only needs to come to the office or hospital for treatment.  Chemotherapy and radiation are given together because the chemotherapy drugs make the tumor more sensitive to the radiation.  Outcomes from randomized clinical trials have shown that this combination gives higher cure rates without adding significant side effects when compared to radation therapy alone.

This “bladder sparing” chemo-radiation approach has another important element:  It requires close follow up by the Urologist and the Oncologists.  All patients must have regular cystoscopic evaluations to see if the cancer has returned.  If the cancer recurs, the patient may need bladder removal or may require only intravesical chemotherapy for treatment of a new tumor on the surface of the bladder.

 

Q: What should the patient know about this option?

A: Combined TURBT and concurrent chemo-radiation therapy is an aggressive curative treatment and requires motivation and commitment from the patient and often the family to undergo a 6-8 week treatment as an outpatient.  It is usually well tolerated, even in the elderly, but there may be side effects which are most often temporary bladder or intestinal irritation.  While bladder removal has long been the mainstay of therapy in this country for bladder cancer that invades the muscle the observation that many patients cannot tolerate the extensive surgery led to the development of alternative organ-sparing treatment approaches.  Such  organ sparing treatment with concurrent chemotherapy and radiation treatments are now commonly used for patients with cancers of the breast, the lower  intestinal tract, the head and neck region, as well as other tumors of the extremities that would otherwise require amputation.  There is now a substantial body of evidence with long term follow-up of patients treated with this approach to show that bladder preservation can be a good alternative to immediate bladder removal in well-selected and well-treated patients.  It was recently reported by the National Cancer Institute’s Radiation Trial Group that this approach in elderly patients is also well tolerated and an effective curative approach with few late recurrences of serious bladder tumors.  Additional studies have reported that if this treatment does not eradicate the tumor or if a muscle invading tumor recurs, bladder removal can be carried out without significant increases in surgical complications compared to those seen in cystectomy patients without this treatment initially.  These chemoradiation treatments are available in all major cancer centers, including over 90 centers in the U.S. and Canada, which have opened National Cancer Institute protocols that continue to evaluate this approach particularly focusing on the optimal chemotherapy drugs to enhance the radiation’s ability to eradicate the bladder tumor and to minimize treatment side effects.

 

Q: Who is a good candidate for this treatment?

A: Many reported prospective studies from national clinical trials and from single institution experiences have shown that the patients that do particularly well with this treatment include those:

  1. With tumors that are able to undergo a visibly complete resection of the tumor,
  2. With tumors that are judged to be on clinical grounds invading only the muscle wall of the bladder but not deeper,
  3. With tumor presenting without obstruction of one ureter (called without hydronephrosis), and
  4. With tumors that, following an induction course of chemo-radiation, show a complete response when the tumor is re-biopsied usually after about 4 weeks of treatment.

Also most patients that are judged to be medically poor candidates for total bladder removal can often be well treated with chemoradiation.

Recently chemotherapy drugs, in addition to the initially recognized Cisplatin, that can assist effectively the radiation in eradicating the tumor in the bladder have been shown to include Mitomycin C, 5-FU, and Gemcitabine. These drugs are often better tolerated than Cisplatin, particularly in those patients with poor kidney or hearing function.

 

Q: How can you find out if you are a good candidate for bladder preservation therapy?

A: Because many Urologists lack personal experience in carrying out this approach with a dedicated team of bladder specialists including Radiation and Medical Oncologists, it is best to have a consultation with a Radiation Oncologist in a community or academic cancer center. If patients are having difficulty identifying an appropriate local radiation specialist, contact BCAN. Contraindications to this treatment would be patients who have had prior pelvic radiation therapy or who have medical conditions of the pelvis such as ulcerative colitis that would make radiation therapy potentially harmful.

 

Q: Can you describe the newly reported use in Japan of balloon occluded intra-arterial infusion of chemotherapy and in the management of patients with bladder cancer when combined with radiation?

A: Following the lead of the reports  over 10 years ago from Canada about the use of combining radiation with the direct infusion of chemotherapy drugs  into the arteries that feed the urinary bladder there have been quite encouraging reports from Japan, from the University of Tsukuba, the University of Tokyo, and from the Osaka Medical College.  These all allow for higher doses of chemotherapy given intra-arterially to the bladder and the bladder tumor.  The Japanese technique delivers a high concentration of the anti-cancer drug to the tumor without giving serious chemotherapy side effects because the chemotherapy is removed from the circulation in the veins by a hemodialysis system before this blood is returned to the heart. With post-treatment follow-up periods that are not yet quite mature the Japanese are reporting extremely good responses with this approach.  However, in the United States this has not been tried.  In fact in the United States this use of such intra-arterial chemotherapy for any tumor has not been used to any extent in the last two decades.  Probably the best advice to give patients about the treatments in the Osaka and elsewhere in Japan is that these treatments probably should only be considered now for patients with extremely advanced tumors that are so large as to not likely be cured any of the present combinations of chemotherapy, radiation and surgery for these stage T4b bladder cancers.

 

Q: What do you see as the future for bladder sparing treatment for patients with bladder cancer?

A: A major research effort for patients with invasive bladder cancer, as in many of the aggressive cancers elsewhere in the body, is to identify the genetic or molecular characteristics of specific tumors of an organ to predict whether this specific tumor will or will not respond well to either drug or radiation therapy.  In addition there are new forms of drug treatment that are specifically targeted to certain mutations on the tumor (if they exist) that may be able to eradicate tumors without unacceptable side effects. Fortunately in the instance of radiation and chemo-radiation used in muscle invasive bladder cancer there have been two recent reports from Europe showing that tumors having one particular activated protein, MRE-11, responds particularly well to curative treatment with chemo-radiation but not following bladder removal.  At the present time an ongoing National Cancer Institute study is evaluating the outcomes from patients treated on national protocols to identify whether high staining in the tumor of the protein MRE-11 is a predictor of a good or bad response using chemoradiation. Now prospective NCI clinical trials are being designed to validate the use of tumor biomarkers to help select the appropriate therapeutic approach specifically for each patient.

 

Q: What do you see in the future for bladder cancer treatment in general?

A: Areas of intense investigation in aggressive muscle-invasive bladder cancer include prospective studies in an attempt to identify specific genetic characteristics of the tumor of each bladder cancer patient that will be associated with a better response to conventional chemotherapy or the specific targeted chemotherapy agents.  Thus those patients will be advised to undergo that particular type of drug or chemotherapy and also identify those patients that are not likely to benefit so they can avoid a needless treatment.  Similarly this approach is being pursued for radiation therapy.  In addition radiation therapy technology is improving so as to better focus the radiation exclusively on the bladder tumor thereby allowing a safe increase in a dose to the bladder tumor.  Fortunately since 2008 the National Cancer Institute has developed a special bladder cancer task force which includes select academic physicians and scientists to develop new national protocols that will address important issues for bladder cancer patients.  Judging from the National Cancer Institute’s past experiences with breast cancer, the lymphomas, head and neck cancer, and lung cancer, this emphasis on treating cancer patients on well designed clinical trials should lead to more rapid development of well-tolerated and more curative treatments for bladder cancer patients.

Finally one clinical protocol now open in the NCI clinical trial network is evaluating the efficacy of combining TURBT and chemoradiation in patients with stage T1 high grade non-muscle invading bladder urothelial cancer that have recurred following  conventional  “BCG”  intravesical therapy rather going directly to bladder removal, which is the standard next therapy by urologic guidelines. This protocol is now open in over 70 North American centers and accrual is increasing.

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BCG Update http://www.bcan.org/bcg-update/ http://www.bcan.org/bcg-update/#comments Tue, 24 Mar 2015 17:55:37 +0000 http://www.bcan.org/?p=15209 Since August, many patients have been experiencing a delay in treatment due to the production of TICE BCG. There has been increased worldwide demand for the drug and few manufacturers causing a backorder issue. Generally, there has been a delay in orders between 2 - 8 weeks which impacts patients, physicians and the entire bladder cancer community.

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Since August, many patients have been experiencing a delay in treatment due to the production of TICE BCG.  There has been increased worldwide demand for the drug and few manufacturers causing a backorder issue.  Generally, there has been a delay in orders between 2 – 8 weeks which impacts patients, physicians and the entire bladder cancer community.

We have been working with Merck to resolve this issue.  The company provided an update today on their website.  Click the links below to view the letter as well as the FAQ’s.

FAQ from Merck 3-15
Letter from Merck 3-15

Orders may be tracked at www.merckorders.com by clicking product status report.  The information is available regardless of the distributor your physician uses.

Sanofi will once again produce TheraCys BCG.  According to their customer call center, the product will be available at the end of June.  For a production update, you can contact Sanofi at 1-800-VACCINE.

ASHP Sanofi BCG Production Update

We will continue to monitor this issue and advocate for patients.

 

 

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Advocacy Issue – Blue Light Cystoscopy http://www.bcan.org/advocacy-issue-blue-light-cystoscopy/ http://www.bcan.org/advocacy-issue-blue-light-cystoscopy/#comments Tue, 03 Mar 2015 19:55:31 +0000 http://www.bcan.org/?p=15183 You may have read our posting with an update on the issue regarding reimbursement of blue light cystoscopy. As all of you know, there are very few treatments and innovations for bladder cancer. It is BCAN's position that everyone should have equal access to all treatments, tests and innovations that have been approved by the FDA.

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You may have read our posting with an update on the issue regarding reimbursement of blue light cystoscopy. As all of you know, there are very few treatments and innovations for bladder cancer. It is BCAN’s position that everyone should have equal access to all treatments, tests and innovations that have been approved by the FDA.

When reimbursement is restricted, it limits access for patients to care that may improve their quality of life.  As a patient advocacy organization, this is an important issue to us and the bladder cancer community.

This has been an ongoing issue and we are hopeful that with persistence, legislation will be passed.  We would like to thank Congressman Tom Reed of NY’s 23 District, for introducing HR 1178, which would correct this issue providing necessary payment for the technology and limiting access barriers for patients.  Rep. Reed has been unwavering in his dedication to this issue and the bladder cancer community.

Supporters may get involved by going to http://www.savebladdercancertreatment.com to send a letter to your representative.  The website is operated by Photocure, the manufacturer of Cysview and is not affiliated with BCAN.

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Moving Towards Improved Patient-Centered Research:  Perspective from a John Quale Travel Fellow http://www.bcan.org/moving-towards-improved-patient-centered-research-perspective-john-quale-travel-fellow/ http://www.bcan.org/moving-towards-improved-patient-centered-research-perspective-john-quale-travel-fellow/#comments Tue, 24 Feb 2015 20:28:52 +0000 http://www.bcan.org/?p=15162 As an early investigator trying to have an impact in bladder cancer, I received a John Quale Travel Fellowship to attend the 2011 BCAN Think Tank Meeting. This award has honestly had a profound impact on my personal understanding of bladder cancer and also provided me with the opportunity to advance my career. For me, this impact has been best personified by two concepts: 1. Ask important questions and 2. Work with smart and motivated people.

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Nepple, KenAt the heart of any medical research is the question: “What is your question?”. With respect to medical research, there are clearly lots of questions being asked. One analysis from 2005 from Druss and colleagues reported that yearly there were nearly half a million medical publications per year which resulted in nearly 3 million pages. That data was from 2001, and clearly the growth has been exponential since then as portals to information have increased both in the medical literature and on the internet. In stark contrast to this rapid growth and dissemination of medical research, funding has become more difficult as budget constraints and real-world economics provide challenges for moving forward research.

It is in this vast context that each early investigator begins a journey. Independent of their background, each will try to ask important questions and make a meaningful impact on their field. As an early investigator trying to have an impact in bladder cancer, I received a John Quale Travel Fellowship to attend the 2011 BCAN Think Tank Meeting. This award has honestly had a profound impact on my personal understanding of bladder cancer and also provided me with the opportunity to advance my career. For me, this impact has been best personified by two concepts: 1. Ask important questions and 2. Work with smart and motivated people.

  1. Ask important questions: Within the world of medical outcomes research, there has been a renewed focus on “patient-centered” research. This focus has included emphasis on patient-centered outcomes research with the goal of asking important questions and providing meaningful answers. While this focus on the patient should be extraordinarily obvious, research can at times lose this important focus. The BCAN meeting has the extraordinary experience of including time to learn directly about the lives of those touched by bladder cancer and to involve patient advocates in the iterative process of choosing what research to pursue. This experience shapes my personal experiences, and is the primary reason I have attended every BCAN Think Tank since my initial meeting.
  2. Work with smart and motivated people: While there is lack of general understanding of the negative impact of bladder cancer and a subsequent lack of adequate funding for bladder cancer, there is clearly not a lack of smart and motivated people trying to work towards a solution. The BCAN Think Tank experience is unique in the atmosphere created from bringing together a working group from nearly every aspect of bladder cancer care (patients, family, care providers, researchers) each of whom is motivated toward a common cause. To paraphrase philosopher James Lee Byars, “To arrive at the edge of the world’s knowledge, seek out the most complex and sophisticated minds, put them in a room together, and have them ask each other the questions they are asking themselves.” The networks built from my BCAN experience has clearly helped to fast track subsequent projects and help to build my research and career.

I’m certainly grateful to all the time and effort spent in building the BCAN organization and the Think Tank meeting. I would strongly encourage those who have the opportunity to apply for a John Quale Travel Fellowship. It is certainly one step toward providing an answer to “what is your question?”.

Kenneth G. Nepple, MD, is Assistant Professor in the Department of Urology at the University of Iowa.  He received the John Quale Travel Fellowship in 2011.
For more information click here: http://www.medicine.uiowa.edu/dept_primary_apr.aspx?appointment=Urology&id=nepplek
For more information about the John Quale Travel Fellowship Program and how to apply, please click here: http://www.bcan.org/research/john-quale-travel-fellowships/

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Guest Blog: “Wait, you guys do surgery here? I thought you only did research!” http://www.bcan.org/guest-blog-wait-guys-surgery-thought-research/ http://www.bcan.org/guest-blog-wait-guys-surgery-thought-research/#comments Tue, 10 Feb 2015 14:33:27 +0000 http://www.bcan.org/?p=15130 This is a common reaction I get from patients during consultations for urothelial cancer management and treatment. Many patients are aware that the National Institutes of Health (NIH) is the largest biomedical research institution in the world. However, most of these patients are unaware of the nation’s largest research hospital located within the NIH’s Clinical Center in Building 10 in Bethesda, Maryland.

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Agarwal, Piyush
“Wait, you guys do surgery here?  I thought you only did research!”

This is a common reaction I get from patients during consultations for urothelial cancer management and treatment.  Many patients are aware that the National Institutes of Health (NIH) is the largest biomedical research institution in the world.  However, most of these patients are unaware of the nation’s largest research hospital located within the NIH’s Clinical Center in Building 10 in Bethesda, Maryland. This research hospital is a self-sufficient facility staffed with esteemed and talented specialists in nearly every medical discipline, a state-of-the-art intensive care unit, advanced operating room equipment such as blue light cystoscopy and the da Vinci Xi robot, and diligent and compassionate nurses.  We also have a day hospital that provides outpatient treatments such as BCG intravesical instillations and chemotherapy.

It is true that our primary focus is on research, but not all research involves petri dishes and mice.  A significant proportion of the research performed at the NIH is the type of “translational research” that leads to new therapies for patients.  In fact, our physicians are on the forefront of bringing the latest therapies to patients since we have access to the most cutting edge research in the world.  For example, it is widely known that Bacillus Calmette-Guerin (BCG) intravesical immunotherapy is the leading intravesical medication for bladder cancer and the last FDA-approved drug for bladder cancer.  What is less commonly known is that the seminal studies that established the criteria for BCG to induce an immunologic response were conducted at the NIH.  In the 1970s, Dr. Berton Zbar led these critical studies that paved the way for clinical use of BCG.  In fact, two NIH Urology Fellows would later be the first to apply the use of BCG to the bladder.  Dr. Jean deKernion first described intralesional injection of BCG for melanoma in the bladder in 1974 and Dr. Alvaro Morales first described intravesical instillation of BCG for urothelial cancer in 1976.  Today, BCG is still the first line choice for treatment of high grade urothelial cancer worldwide.

Similarly, we are studying tumor-targeted photodynamic therapy and novel approaches to immunotherapy in urothelial cancer with the hopes of impacting clinical care broadly in the future.  Currently, I have a research protocol for patients whose disease has not responded to BCG.   This protocol studies whether BCG can be enhanced by combining a subsequent course of BCG with a novel vaccine developed at the NIH called PANVAC (clinicaltrials.gov, NCT02015104).  PANVAC is a vaccine that enhances the immune system against cancer tumor antigens that are overexpressed in high grade bladder cancers.  We are also soon initiating a clinical trial to study a class of drugs called PDL-1/PD-1 inhibitors in non-muscle invasive bladder cancer.  My colleagues in radiology oncology (Dr. Deborah Citrin) and medical oncology (Dr. Andrea Apolo and Dr. Lauren Wood) have additional clinical trials offering radiation and chemotherapy treatment options for urothelial cancer patients.  We try to simplify the process for new patients by seeing them together in a multi-disciplinary fashion.

At the NIH, we offer treatments for all stages of urothelial cancer.  Although advancing the progress of medical therapies through research is our primary goal, we also provide standard of care medical and surgical therapies within the context of natural history and observational studies.

For consultation, please contact Megan Anderson, RN at 301-435-6255 or via email at megan.anderson2@nih.gov.

Dr. Piyush Agarwal is a tenure-track investigator and the Head of the Bladder Cancer Section in the Urologic Oncology Branch of the National Cancer Institute. He specializes in multidisciplinary management of urothelial cancer and complex surgical techniques including robotic cystectomy and continent urinary diversions. He is also an expert in other urologic cancers including prostate, testicular, and penile carcinoma. His clinical and laboratory research focus on all aspects of bladder cancer, specifically, Bacillus Calmette-Guerin (BCG)-refractory disease and molecular targeted therapy. He is currently evaluating the addition of a vaccine to BCG in high-grade bladder cancer in a Phase II Clinical Trial.

 

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Good Listeners Needed for the BCAN Connection Volunteer Program http://www.bcan.org/good-listeners-needed-bcan-connection-volunteer-program/ http://www.bcan.org/good-listeners-needed-bcan-connection-volunteer-program/#comments Tue, 20 Jan 2015 19:33:43 +0000 http://www.bcan.org/?p=15064 Are you a good listener? Are you patient and compassionate? Do you have a phone? The Bladder Cancer Advocacy Network (BCAN) needs you for the BCAN Connection Program! BCAN Connection is looking for volunteers to answer calls to the BCAN Connection Line, an information and referral service for newly diagnosed bladder cancer patients, caregivers and survivors.

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Are you a good listener? Are you patient and compassionate? Do you have a phone? The Bladder Cancer Advocacy Network (BCAN) needs you for the BCAN Connection Program! BCAN Connection is looking for volunteers to answer calls to the BCAN Connection Line, an information and referral service for newly diagnosed bladder cancer patients, caregivers and survivors.

As a BCAN Connection volunteer, you may speak to newly diagnosed patients who want to educate themselves about the disease, a spouse who wants to provide support or a patient who needs financial assistance to help them through chemotherapy. This is how it works: Patients and caregivers call the BCAN Connection Call Line and leave a message. Volunteers pick up the messages on their assigned days and respond to the callers’ needs: providing resources and/or taking notes and passing on information to BCAN staff so we can follow up the next day. Hours are flexible and training/support is provided.

For this completely virtual position, we need people who are:

Active listeners – Listening carefully, asking clarifying questions and taking careful notes is the key to this volunteer position. Your careful listening/communication skills will ensure that patients/caregivers who call will get what they need as quickly as possible.

Compassionate, caring and patient – Many callers have just received a diagnosis or they are the spouse/family member of a bladder cancer patient – volunteers may be one of the first people they speak to after they’ve received frightening news – we want to make sure they are heard by patient, sympathetic volunteers.

Conscientious and reliable – Volunteers need to check messages on their assigned day(s), take careful notes and communicate with BCAN staff.

Volunteers DON’T need to:

Give medical advice (if fact they shouldn’t);
Have all the answers; or
Have experienced bladder cancer – directly or through a family member.

Training will begin in February – can you join us? It won’t take a lot of your time, but it will be a great help to people in need. Please contact Jeanne Mahoney (volunteer@bcan.org or 301-215-9099 ext.1206) for more information.

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BCAN Partners with Vanderbilt to Host “Living with Bladder Cancer” Event http://www.bcan.org/bcan-partners-vanderbilt-host-living-bladder-cancer-event/ http://www.bcan.org/bcan-partners-vanderbilt-host-living-bladder-cancer-event/#comments Fri, 16 Jan 2015 14:23:13 +0000 http://www.bcan.org/?p=15040 Recently, Vanderbilt-Ingram Cancer Center partnered with the Bladder Cancer Advocacy Network (BCAN) to host, “Living with Bladder Cancer.” This half-day educational event was an opportunity for patients, caregivers and family members to hear from medical experts as well as to network with others impacted by bladder cancer.

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Written by Allison Schaffer, LCSW

Recently, Vanderbilt-Ingram Cancer Center partnered with the Bladder Cancer Advocacy Network (BCAN) to host, “Living with Bladder Cancer.” This half-day educational event was an opportunity for patients, caregivers and family members to hear from medical experts as well as to network with others impacted by bladder cancer.  With over 150 attendees, most of whom were seated and ready to go at 8:30 am on a Saturday, the crowd was clearly ready to learn and eager to soak up information.  Long-time bladder cancer survivor, Peggy B. shared her experience with bladder cancer and other cancers and stressed the importance of living fully.  Her messages of hope and perseverance were inspiring and truly resonated with the group.

At the end of the event, one attendee shared how much the event meant to her, as a bladder cancer survivor.  When her and her husband decided to attend the program, they expected to show up and possibly be the only ones at the program.   However, when they walked into the room filled with people touched by bladder cancer, she was speechless, moved and finally felt “no longer alone.”  This sentiment was repeated throughout the course of the day, as attendees expressed gratitude to hear from knowledgeable physicians, ask questions and connect with others.  And while, this is the first program of its’ kind in our area, it hopefully won’t be the last.

For people looking to access the bladder cancer community, the Bladder Cancer Advocacy Network is available around the clock offering accurate, up-to-date information and support that is easy to access.  Vanderbilt-Ingram Cancer Center is grateful to BCAN for their partnership and advocacy efforts.

Allison Schaffer, LCSW, is Program Manager at the Patient and Family Resource Center at the Vanderbilt-Ingram Cancer Center.  

Vanderbilt Living with Bladder Cancer crowd 2 close up

Vanderbilt Living with Bladder Cancer crowd 1

 

 

 

 

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We want you! To tell us what to research http://www.bcan.org/want-tell-us-research/ http://www.bcan.org/want-tell-us-research/#comments Thu, 08 Jan 2015 17:25:54 +0000 http://www.bcan.org/?p=14997 This year we’re launching a new project called, “Engaging Patients in Bladder Cancer Research Prioritization” to make sure the patient voice is heard in determining important bladder cancer research topics. Our goal is to engage bladder cancer patients in the research process in a meaningful way. We are aiming to recruit patients and caregivers to join the Patient Survey Network (PSN).

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When you hear about bladder cancer research do you ever wonder how the research topics are chosen and if anyone ever asks actual patients what they think?  Bladder cancer is currently the 6th most commonly diagnosed cancer in the United States. An estimated nearly 75,000 people were diagnosed last year. Researchers are investigating many topics in bladder cancer but there has never been a deliberate effort to ask bladder cancer patients and caregivers – the people directly impacted by this disease – what research questions they think are most critical to address.

This year we’re launching a new project called, “Engaging Patients in Bladder Cancer Research Prioritization” to make sure the patient voice is heard in determining important bladder cancer research topics.  Our goal is to engage bladder cancer patients in the research process in a meaningful way. We are aiming to recruit patients and caregivers to join the Patient Survey Network (PSN). Those that have joined the PSN will be asked to rank research questions and share their own ideas. We will use these responses to help identify and prioritize topics for future research.

This is where you come in. We’re getting the word out now about the Patient Survey Network and soon we’ll start asking you to join. Please think about joining. We want to hear your voice, your thoughts and your ideas. This is your chance to tell us. Your experiences and perspectives can help make sure future research is informed by what is most important to actual bladder cancer patients and caregivers.

I am the project lead on this project, along with my co-lead Dr. John Gore, urologic oncologist at the University of Washington.  We are partnering with BCAN on implementing this project. We received funding for this engagement award through the Patient-Centered Outcomes Research Institute (PCORI), a nonprofit, nongovernmental organization established by the Patient Protection and Affordable Care Act of 2010.

For more information about the Patient Survey Network, click here
For questions about the Patient Survey Network, please email PSN@bcan.org or call 301-215-9099 ext. 203

Angela Smith is a clinician and researcher who specializes in urologic oncology at the University of North Carolina (UNC) at Chapel Hill. Dr. Smith received her medical degree from the UNC School of Medicine, where she also completed her urologic residency.  After residency, Dr. Smith joined the UNC Department of Urology as an Assistant Professor. She is a board-certified urologist at UNC Lineberger Comprehensive Cancer Center where she treats genitourinary malignancies, including bladder, prostate, kidney, and testicular cancer. Dr. Smith has a background in health services research and biostatistics with particular interests in patient-centered outcomes research, mobile health, and quality of care for invasive bladder cancer patients. Dr. Smith is currently funded by an NIH KL2 grant and also serves on the Patient-Centered Outcomes Research Institute’s (PCORI) advisory panel, representing clinicians.

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BCAN Marks 10 Years http://www.bcan.org/bcan-marks-10-years/ http://www.bcan.org/bcan-marks-10-years/#comments Mon, 05 Jan 2015 18:44:42 +0000 http://www.bcan.org/?p=14977 I am always happy to welcome in the new year, and 2015 is of special significance as it marks BCAN’s 10th anniversary. BCAN got started 10 years ago because my late husband John and I had a simple idea: something needed to be done to raise awareness about bladder cancer and improve the lives of the thousands of people impacted by the disease.

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10th Anniversary LogoI am always happy to welcome in the new year, and 2015 is of special significance as it marks BCAN’s 10th anniversary.  BCAN got started 10 years ago because my late husband John and I had a simple idea:  something needed to be done to raise awareness about bladder cancer and improve the lives of the thousands of people impacted by the disease.  We didn’t have a “grand plan” at the time, nor any expectation of what we might be able to accomplish.  But from the beginning, we were able to tap into the energy and commitment of others all around the country who wanted better information, increased support, and improved treatments for bladder cancer patients.  We all started talking about bladder cancer and I am humbled and amazed at what we’ve been able to accomplish together.

We started talking with urologists, medical oncologists and other medical professionals who treat the disease, and who were committed to improving outcomes for their patients.  After our first meeting at a medical conference in May 2005, we had a Scientific Advisory Board of 18 specialists, representing major medical institutions all around the country.  Our partnership with the medical community has been an essential element in BCAN’s ability to provide educational support for patients and their families, and has been invaluable in developing and supporting BCAN’s research program.

We started talking to other survivors and family members through the Bladder Cancer Webcafe, which in 2005 was the only means of connecting with others around the country.  We recruited volunteers to help us design and support our new website, and to help us raise awareness about bladder cancer in their own communities.  Today our volunteer network spans the country, with walks and events raising the profile of bladder cancer, as well as raising much needed funds for BCAN’s programs.

We started talking with friends and family, asking them to provide financial support to get BCAN underway.  Our initial circle of supporters has now grown to over 18,000 people, many of whom have continued to donate to BCAN over many years.

Our partners, volunteers and donors are united by the common goal of improving the lives of those impacted by bladder cancer and creating a community of hope.  The first 10 years has been a remarkable start, but, of course, we still have much work to do.  Together, we are leading the way to awareness and a cure.

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Advocacy for Blue Light Cystoscopy Moves Ahead http://www.bcan.org/advocacy-blue-light-cystoscopy/ http://www.bcan.org/advocacy-blue-light-cystoscopy/#comments Tue, 09 Dec 2014 17:49:50 +0000 http://www.bcan.org/?p=14899 We are pleased to report that United States Senator Robert Menendez of New Jersey yesterday introduced legislation to help address the issue and correct the Medicare & Medicaid Services (CMS) policy for reimbursing hospitals for the drug Cysview.

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You may have read our posting with an update on the issue regarding reimbursement of blue light cystoscopy. As all of you know, there are very few treatments and innovations for bladder cancer. It is BCAN’s position that everyone should have equal access to all treatments, tests and innovations that have been approved by the FDA.

When reimbursement is restricted, it limits access for patients to care that may improve their quality of life.  As a patient advocacy organization, this is an important issue to us and the bladder cancer community.

We are pleased to report that United States Senator Robert Menendez of New Jersey introduced legislation to help address the issue and correct the Medicare & Medicaid Services (CMS) policy for reimbursing hospitals for the drug Cysview. We thank Senator Menendez, as well as Senators Mark Kirk of Illinois and Richard Burr of North Carolina who co-sponsored the legislation, for their leadership on an issue of great concern to us. You can have your voice heard by contacting your Senators to reverse the CMS decision to “package” payment of Cysview into the procedure payment classification, and provide adequate reimbursement.

 

To get involved, go to http://www.savebladdercancertreatment.com to write to your Senators directly. The website, which is supported by Photocure (the manufacturer of Cysview), will allow you to search for your respective Congress member and send a letter to them.

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Blue Light Cystoscopy Issue http://www.bcan.org/blue-light-cystoscopy/ http://www.bcan.org/blue-light-cystoscopy/#comments Fri, 21 Nov 2014 14:50:53 +0000 http://www.bcan.org/?p=14803 As we've previously discussed in our posts, the lack of reimbursement for blue light cystoscopy has been a barrier to care for many bladder cancer patients.

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As we’ve previously discussed in our posts, the lack of reimbursement for blue light cystoscopy has been a barrier to care for many bladder cancer patients. We have been following the issue closely with Photocure, the manufacturer of Cysview.

The United States House of Representatives released a discussion draft this week of a Medicare bill including language which would expand access to blue light cystoscopy. The language is outlined in section 215: http://waysandmeans.house.gov/uploadedfiles/hip_discussion_draft.pdf

The community can help move this legislation forward by sending a message to the Ways and Means Committee. To get involved, email HDDWAMR@mail.house.gov and thank the Ways and Means Committee for including Representative Reed’s bladder cancer legislation in the draft and urge the Committee to move the Reed legislation, H.R. 4857, on the Suspension Calendar as soon as possible.

With so few advances in bladder cancer, it is imperative that patients have access to all FDA approved treatments and technology. Payment issues should not be a barrier to care.

To view our past statements on the issue, use the links below:
Access to Blue Light Cystoscopy
Update – Access to Blue Light Cystoscopy

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Reverse the Odds – New Mobile App Game Advances Science http://www.bcan.org/reverse-odds-new-mobile-app-game-advances-science/ http://www.bcan.org/reverse-odds-new-mobile-app-game-advances-science/#comments Thu, 20 Nov 2014 15:37:42 +0000 http://www.bcan.org/?p=14792 Dr. Anne Kiltie at the University of Oxford has been working on developing an engaging mobile game called “Reverse the Odds” where players can engage in critical thinking by playing a fun minion-switching puzzle, and also by analyzing real cancer slides. This pioneering project falls into a realm of research referred to as “Citizen Science”, where the public is trusted with providing the data for the scientists.

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Cancer research is essential to answering the complex mysteries about different types of cancers and finding a cure. We depend on scientists with years of education, training, and experience to be at the forefront of cancer innovation. But what if cancer research can be supplemented by the assistance of the general public?

Dr. Anne Kiltie, Clinical Group Leader at the CRUK/MRC Oxford Institute for Radiation Oncology within the Department of Oncology at the University of Oxford and an attendee of the 2014 BCAN Bladder Cancer Think Tank, has been working on developing an engaging mobile game called “Reverse the Odds” where players can engage in critical thinking by playing a fun minion-switching puzzle, and also by analyzing real cancer slides. This pioneering project falls into a realm of research referred to as “Citizen Science”, where the public is trusted with providing the data for the scientists.

Citizen science has been around for quite some time. In the US, the National Audubon Society has been running annual bird counts at Christmastime since 1900. Families, students, and scientists leave their homes with bird guides and checklists to collect bird data in the longest-running wildlife census with the objective to assess the health of bird populations and to guide conservation action. With the advances in technology and data sharing, citizen science has taken off. There are other research-based apps where individuals can input data spanning from local precipitation patterns (mPing) to invasive species (What’s Invasive), all by pressing a few buttons on their smartphones.

An example of a bladder cancer slide from "Reverse the Odds"

In the game Reverse the Odds, players are able to score immunohistochemistry images from real patients with bladder cancer. Immunohistochemistry refers to the process of detecting proteins in cells through the binding of antibodies to antigens in biological tissues. It is used to diagnose abnormal cell growth and to understand differences in proteins found in cancerous tumors.

Many patients with muscle invasive bladder cancer have to choose whether to have their bladder removed or to have a radiation based treatment. By looking at the slides, scientists determine whether there are tumor cells in the sample, of the tumor cells how many are stained for a protein, and the intensity of the stains. The goal of the scientists is to determine whether patients that possess specific proteins in their tumors have different outcomes based on the treatment they are prescribed.

Scientists have submitted slides from real bladder cancer patients into the Reverse the Odds app that can be downloaded and played by anyone. The job of the “citizen scientists” is to allow scientists to look at far more samples because they can acquire data from thousands of people. This data helps patients because it allows scientists to identify the proteins present and help them to prescribe the most appropriate treatment for future patients.

In order to progress through the game, the player is asked questions about tissue images that appear on the screen. The images may contain a particular molecule (represented as a color) and how much of the molecule there is (represented by the intensity of the color). The player is also asked to count how many of a particular type of cell they see (percentage of colored cells). One of the key attributes of the project is the inherent ability of humans to recognize patterns. The data must be analyzed by human beings because computers aren’t good enough at recognizing he patterns required. It doesn’t matter if the player is right or wrong either! The goal is to have as many people as possible view the slides and there are checks in place to identify faulty analysis.

Advancing through the "Reverse the Odds" game and improving the world of minion-like "Odds" creatures.

The player progresses through the game and improves the world of the minion-like “Odds” by playing against an automated challenger to score points and reverse a certain number of Odds each round (shown on the right). The player analyzes at least one bladder cancer slide before each Odds-Reversing challenge and also can also analyze more slides to earn special potions and progress to further levels.

The game has the potential to accelerate current research to allow scope for analysis of many more markers, cells, and molecules in existing bladder tumor samples. Reverse the Odds is also an initiative that is an excellent platform for the public to become engaged in scientific research.

The game has been commissioned by Channel4 as part of Stand Up To Cancer, and was produced by Maverick TV’s Multiplatform team and developed by Chunk. Anyone can download this game for free on a smartphone or tablet from the Apple App Store, Google Play and the Amazon AppStore. To learn more information about the game, visit the Reverse the Odds website.

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What’s New in Bladder Cancer http://www.bcan.org/whats-new-bladder-cancer/ http://www.bcan.org/whats-new-bladder-cancer/#comments Tue, 11 Nov 2014 18:21:58 +0000 http://www.bcan.org/?p=14783 Today we release the summary proceedings from the 2014 Bladder Cancer Think Tank. In this summary you can read about the highlights from this incredible meeting that serves as an incubation center to support new ideas and collaboration to accelerate progress on diagnosing, treating, and improving quality of life for people impacted by bladder cancer.

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Today we release the summary proceedings from the 2014 Bladder Cancer Think Tank.  In this summary you can read about the highlights from this incredible meeting that serves as an incubation center to support new ideas and collaboration to accelerate progress on diagnosing, treating, and improving quality of life for people impacted by bladder cancer.

A few of the main areas addressed at the meeting were immunotherapy, aging, smoking cessation and targeting novel pathways in bladder cancer. Immunotherapy has shown recent promise in treating solid tumors like bladder cancer. The goal of immunotherapy in cancer treatment is to create a specific immune cell response that can destroy the primary tumor and its potential metastases. In a recent Phase 1 clinical trial, 43 percent of the patients who received an anti-PD-L1 immunotherapy treatment had a positive response. Another panel focused on the impact of aging on cancer treatment. Aging is a complex process that impacts how patients tolerate cancer treatment and can magnify side effects. Panelists also discussed smoking cessation. Many people aren’t aware that smoking tobacco is estimated to account for half of all bladder cancer cases. Many patients also don’t know that there are numerous benefits to quitting smoking even after being diagnosed with bladder cancer.

Another focus of the meeting was targeting novel pathways in bladder cancer. There are many new research findings in bladder cancer that can be translated into actual treatment. A study of multiple tumor types from The Cancer Genome Atlas found that bladder cancer subtypes can be genetically similar to lung cancer and head and neck cancer. Additionally identifying different subtypes has had a major impact on treatment breast cancer. Researchers discovered that there are four major molecular subtypes: luminal A, luminal B, triple negative/basal-like, and HER2 type. Each subtype responds differently to available treatment options. Researchers are finding that bladder cancer also has subtypes which has major implications for treatment and survival.  One researcher discussed positive response outliers where one bladder cancer patient in a clinical trial responded very well to a drug while the others did not. The National Cancer Institute recently launched the Exceptional Responders Initiative to further investigate these findings. Other researchers and investigators are looking at how to design clinical trials to take advantage of what we know about genetic mutations and pathways in bladder cancer.

Please take a look at the summary for more information about these findings and to see how experts in bladder cancer are collaborating to move the field forward.

Click here to see the summary.

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Advocacy: A Personal Perspective http://www.bcan.org/advocating-bladder-cancer-2014-rally-medical-research-hill-day/ http://www.bcan.org/advocating-bladder-cancer-2014-rally-medical-research-hill-day/#comments Tue, 04 Nov 2014 21:36:28 +0000 http://www.bcan.org/?p=14764 On Thursday, September 18, 2014 hundreds of cancer survivors, family members and researchers met with their elected members of congress during “Rally for Medical Research Day”. The purpose of the rally was to encourage congressional members and staff to increase funding at the National Institutes of Health to support additional research to find a cure for cancer. We were honored to represent our father who is a bladder cancer survivor and the Bladder Cancer Advocacy Network (BCAN) on Capitol Hill for the day.

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Written by: Calvin Hicks and Tanya Minor 

On Thursday, September 18, 2014 hundreds of cancer survivors, family  members and researchers met with their elected members of congress during “Rally for Medical Research Day”. The purpose of the rally was to encourage congressional members and staff to increase funding at the National Institutes of Health to support additional research to find a cure for cancer.  We were honored to represent our father who is a bladder cancer survivor and the Bladder Cancer Advocacy Network (BCAN) on Capitol Hill for the day.

In December 2012 our father was diagnosed with Stage 2 bladder cancer.  Prior to his diagnosis we were unaware of the disease.  After researching the facts we were shocked to learn that although our father had annual physical exams, he did not meet any of the high risk factors, nor did he have any symptoms of bladder cancer until it was at a muscle-invasive stage. We felt compelled to join BCAN at the rally to share his story with elected officials and their staff from his district in Maryland to: (1) let them know that our community exists, (2) stress the need for additional funding for research to lead to an exact cause for bladder cancer, (3) improve the quality of life and surgical outcomes for bladder cancer patients, and (4) possibly find a cure.

By sharing our story, we were able to express that although our father was fortunate to have survived his battle, we recognize that many individuals were not.  More people are diagnosed daily and are currently battling the disease.  Additional funding must be made available in order to save lives and improve the quality of life of survivors. During the rally we were able to meet and listen to the stories of other Americans, young and old, who are impacted by different types of cancers, as well as researchers who are leaving the medical research field due to the lack of employment opportunities as a result of federal funding cuts to cancer research.

Our experience on Capitol Hill was both rewarding and inspiring. Although several groups across the United States came together for a day of advocating for different types of cancer, we shared the same common goal; to let members of Congress know that cancer is threatening the health of Americans all over the United States and making funding available for research and new discoveries to save and improve lives should be a national priority and not subjected to federal budget cuts.

We greatly appreciate the opportunity provided by BCAN to participate in the rally, and we hope our story assists in providing additional awareness and research dedicated to earlier detection, treatment options and most importantly a cure.

Pictured: BCAN advocates, Tanya Minor and Calvin Hicks in front of Sen. Barbara Mikulski's office on Capitol Hil.

Pictured: BCAN advocates, Tanya Minor and Calvin Hicks in front of Sen. Barbara Mikulski’s office on Capitol Hill.

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Great Step Forward: Hopkins Greenberg Bladder Cancer Institute http://www.bcan.org/great-step-forward-hopkins-greenberg-bladder-cancer-institute/ http://www.bcan.org/great-step-forward-hopkins-greenberg-bladder-cancer-institute/#comments Tue, 21 Oct 2014 18:27:48 +0000 http://www.bcan.org/?p=14744 The bladder cancer community took a great leap forward last week with the official launch of the Johns Hopkins Greenberg Bladder Cancer Institute. The mission of the Institute—the first of its kind in the world—is to develop new clinical strategies for combating bladder cancer through intensive, collaborative, and innovative research.

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The bladder cancer community took a great leap forward last week with the official launch of the Johns Hopkins Greenberg Bladder Cancer Institute.  The mission of the Institute—the first of its kind in the world—is to develop new clinical strategies for combating bladder cancer through intensive, collaborative, and innovative research.  The Institute is not limited to the boundaries of Johns Hopkins, but will be attracting the worlds’ best experts to collaboratively advance medical science and clinical capacities in bladder cancer.

All of us in the bladder cancer community—patients, family members, physicians, researchers, nurses, and advocates—owe a debt of gratitude to Stephanie and Erwin Greenberg. Through their great generosity, leadership and vision, the Greenbergs built the strong partnership with Johns Hopkins that made this new Institute a reality.  We are also very grateful to the leadership at Johns Hopkins who are committed to providing the resources and expertise needed to ensure that bladder cancer research and clinical practices get the international attention that is so greatly needed.

BCAN anticipates close collaboration with the Johns Hopkins Greenberg Bladder Cancer Institute, including supporting awareness campaigns and providing educational programs for patients and families.  I am honored to serve as a member of the Institute’s External Advisory Board, along with several members of BCAN’s Scientific Advisory Board:  Dr. Gary Steinberg, Dr. Andrea Apolo, Dr. Donna Hansel, Dr. Seth Lerner, Dr. David McConkey, and Dr. Eila Skinner.  Hopkins’ physicians and BCAN SAB members Noah Hahn and Trinity Bivilaqua, will be major contributors to the Institute’s work.

Please join me in sending Erwin and Stephanie Greenberg, along with the Hopkins leadership team, a heart-felt “THANK YOU!” Together, we are indeed, “leading the way to awareness and a cure.”

Pictured here are Stephanie Greenberg, Diane Quale, Gary Steinberg, and Erwin Greenberg.

Pictured here are Stephanie Greenberg, Diane Quale, Gary Steinberg, and Erwin Greenberg.

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DFW Chapter Hosts Bladder Cancer Education Event http://www.bcan.org/dfw-chapter-event/ http://www.bcan.org/dfw-chapter-event/#comments Tue, 07 Oct 2014 14:11:40 +0000 http://www.bcan.org/?p=14730 The BCAN-DFW hosted a “Bladder Cancer Overview with Survivors Panel Q&A Session" on September 18 at the Cancer Support Community of North Texas (CSCNT) Clubhouse. After a brief welcome by Phyllis Yount, Director of the CSCNT, the event commenced with a presentation from its featured speaker, Dr. Ganesh V. Raj.

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The Bladder Cancer Advocacy Network’s DFW Chapter hosted a “Bladder Cancer Overview with Survivors Panel Q&A Session” on September 18 at the Cancer Support Community of North Texas (CSCNT) Clubhouse. After a brief welcome by Phyllis Yount, Director of the CSCNT, the event commenced with a presentation by featured speaker, Dr. Ganesh V. Raj.

Dr. Ganesh V. Raj, M.D., Ph.D., is an Associate Professor of Urology at UT Southwestern Medical Center and the Director of the urologic oncology fellowship program. After a general overview of bladder cancer treatment, with a focus on radical cystectomy, Dr. Raj showed the audience several statistics demonstrating how improved surgical techniques, particularly a more aggressive approach to lymph node removal, have  created a dramatic improvement in patient outcomes within just the past few years.

A survivor’s panel, consisting of four BCAN-DFW members, followed Dr. Raj’s presentation. John Sheets, Pat Pugsley, Ron Saunders, and Diana Freeman all gave compelling personal testimony regarding the impact that bladder cancer has had upon their lives — their ongoing challenges and recent successes.

A Q&A session with both Dr. Raj and the survivor panelists ensued. Topics of note included detection and diagnosis technologies, the ongoing BCG shortage, and what new bladder cancer treatment technologies are on the horizon.

The event concluded with an overview by Anthony Brewer of DFW Chapter’s ongoing efforts to both provide heightened bladder cancer awareness and peer-to-peer support for survivors, patients, and caregivers.

 

BCAN DFW Survivor Panelists: (LR) John Sheets, Diana Freeman, Pat Pugsley, and Ron Saunders.Dr. Ganesh V. Raj delivers the keynote speech at the DFW Chapter education event.

 

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Remembering Dad – A Daughter’s Tribute http://www.bcan.org/remembering-dad/ http://www.bcan.org/remembering-dad/#comments Wed, 24 Sep 2014 18:17:45 +0000 http://www.bcan.org/?p=14698 About 75,000 people live in Kalamazoo, Michigan. That’s about the same number of folks that will be stricken with bladder cancer this year. 56,000 men will get this disease and more than 11,000 of them will die. My Dad did, after a valiant three-year battle.

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About 75,000 people live in Kalamazoo, Michigan. That’s about the same number of folks that will be stricken with bladder cancer this year. 56,000 men will get this disease and more than 11,000 of them will die. My Dad did, after a valiant three-year battle.

But this isn’t a story about statistics or dying. It’s a story about my Dad and the incredible legacy he left me. My Dad’s cancer didn’t teach me anything I wanted to know about dying, but it taught me absolutely everything about living.

Except that he was a man and in his middle ‘60s there was no reason my Dad should have gotten bladder cancer. He was a healthy, vibrant, active, force to be reckoned with. A gold-medal-winning internationally renowned radiologist, my Dad still found time to golf, run, bike ride and play tennis.

He was a devoted family man and lived each day to the fullest, committed and engaged to his work, his friends and his family. Even after cancer struck, he maintained the same robust spirit of involvement and enthusiasm for all life has to offer.

He created memories, taking photography classes with me and filling his days with music and magic. Despite the painful therapies, blood transfusions, chemo and clinical trials he kept going. When he could no longer run he took long walks with us, and then used his scooter. He made adjustments for his failing energies doing everything his body still allowed him to do every day of his life.

One out of 26 men will develop bladder cancer in their lifetime. But there is hope, with your help. Please fight bladder cancer with me today. Together, let’s raise both awareness and money for research. Remind your loved ones to report any suspicious changes in their urinating habits. If they have any change in frequency, any unusual pain or difficulty or notice any change in color.

Remember my father’s legacy. We don’t know how many days we have left, but we have today. Do something ordinary or even spectacular to create a memory in the hearts of your loved ones.

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Battling Barons Conquering Bladder Cancer- One Day at a Time http://www.bcan.org/battling-barons-conquering-bladder-cancer-one-day-time/ http://www.bcan.org/battling-barons-conquering-bladder-cancer-one-day-time/#comments Mon, 08 Sep 2014 17:28:01 +0000 http://www.bcan.org/?p=14675 On Friday, September 19, 2014 at 6:30 pm, BCAN will host a Bladder Cancer Awareness Night at Bethesda Chevy Chase High School with the family and friends of the late Jeffrey Van Grack.

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Press Release:
Natalie Bennett
(301) 215-9099 ext. 202
nbennett@bcan.org

 

Battling Barons Conquering Bladder Cancer- One Day at a Time

 

BETHESDA, MD – On Friday, September 19, 2014 at 6:30 pm, BCAN will host a Bladder Cancer Awareness Night at Bethesda Chevy Chase High School with the family and friends of the late Jeffrey Van Grack. The event is open to the public, and tickets are $5.00. For more information about the event and ticket information, visit BCAN’s website: www.bcan.org or email Natalie Bennett, nbennett@bcan.org.

 

On August 9, 2014, the Bethesda community lost a great leader, beloved coach and attorney, Jeffrey Van Grack after a long and valiant battle with bladder cancer. Jeff had four main passions in his life: family, work, coaching and the community.    In his personal and professional life, he had a major impact with all of the lives he touched.  He was an assistant coach for the Bethesda-Chevy Chase High School Football Team up until the time of his untimely death from bladder cancer last month.   He previously coached the Northwest High School football team for many years before moving to B-CC.

 

Jeff had the vision to create a partnership between BCAN, Bethesda Chevy Chase High School, and the law firm where Jeff passionately practiced community association law for nearly 20 years, Lerch Early & Brewer, Chartered, as he thought it was important to bring awareness to his community about the 6th most commonly diagnosed cancer in the United States. He knew there was little knowledge known about this disease amongst the public. With his role on the BCAN Leadership Council, he hoped to increase the awareness, educational programs and services provided to the public and research funding to this disease that impacted his life.

 

According to Diane Zipursky Quale, President and Co-Founder of BCAN, “Jeff’s commitment to serve on the BCAN Leadership Council was a true demonstration of his passion and dedication to support bladder cancer awareness. It is our hope that with this BCAN Awareness Night, we will honor Jeff’s vision and courage by spreading awareness within the Bethesda, and surrounding community.”

 

About the Bladder Cancer Advocacy Network

The Bladder Cancer Advocacy Network’s (BCAN) mission is to increase public awareness about bladder cancer, advance bladder cancer research, and provide educational and support services for the bladder cancer community.

 

BCAN serves as the leading voice for bladder cancer in the U.S., providing resources to not only those diagnosed with the disease but their families, caregivers and the medical community united in support of people touched by the disease. The organization is setting the agenda for bladder cancer by promoting and funding collaborative and cutting-edge research programs and providing critical patient support and education services. Each year, it provides thousands of patients, caregivers and the medical community with the educational resources and support services they need to navigate their bladder cancer journey. BCAN works collaboratively with the medical and research professionals who are dedicated to the prevention, diagnosis and treatment of bladder cancer and empowers the patient community by allowing them to share experiences with others, and to participate in building awareness of the need for a cure.

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Unmet Needs of Bladder Cancer Survivors http://www.bcan.org/unmet-needs-bladder-cancer-survivors/ http://www.bcan.org/unmet-needs-bladder-cancer-survivors/#comments Wed, 20 Aug 2014 20:43:30 +0000 http://www.bcan.org/?p=14514 The Icahn School of Medicine at Mount Sinai is launching the “Study on Unmet Needs of Bladder Cancer Survivors.”  The researchers at Mount Sinai are looking for input and feedback from bladder cancer survivors regarding their experience.  It is their hope that the study will identify barriers and challenges to better address the needs of those living with bladder cancer.  This is an opportunity for bladder cancer survivors to have their voice heard by participating in this important research study. This study is strictly confidential and is coordinated through Mount Sinai.  Those who wish to participate or have questions can use...

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The Icahn School of Medicine at Mount Sinai is launching the “Study on Unmet Needs of Bladder Cancer Survivors.”  The researchers at Mount Sinai are looking for input and feedback from bladder cancer survivors regarding their experience.  It is their hope that the study will identify barriers and challenges to better address the needs of those living with bladder cancer.  This is an opportunity for bladder cancer survivors to have their voice heard by participating in this important research study.

This study is strictly confidential and is coordinated through Mount Sinai.  Those who wish to participate or have questions can use the links below.

 

The Icahn School of Medicine at Mount Sinai Study on Unmet Needs of Bladder Cancer Survivors

Download a study Information.  Share this link:

http://www.bcan.org/assets/Study-Flyer-Unmet-Needs-of-Bladder-Cancer-Survivors.pdf

Direct link to the study:

https://www.inchoir.org/bcctm/redcap4/redcap/surveys/?s=MmLvDx2mkJ

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BCAN Inspire Web Community: “Together, We Are Better.” http://www.bcan.org/bcan-inspire-web-community-together-better/ http://www.bcan.org/bcan-inspire-web-community-together-better/#comments Tue, 19 Aug 2014 17:32:00 +0000 http://www.bcan.org/?p=14481 One year after my radical cystectomy, in November 2007, the BCAN Inspire web community was launched. Bladder cancer survivors, partners, caregivers, family, and friends finally had a place to get answers to the questions that I had asked; to ask other questions like them, no matter how personal; to share good news and bad; to offer tips and tricks that make life as a bladder cancer survivor easier and more complete; and to give and get comfort during difficult times.

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Michigan Walk for Bladder Cancer

Rick Bangs is a BCAN Volunteer, Patient Advocate, and Co-Organizer of the Michigan Walk for Bladder Cancer.

I was diagnosed with high grade, muscle invasive bladder cancer in September 2006.  Like most people, I had never heard of bladder cancer, so it is not surprising that I was completely unprepared.  Truth be told, I was scared and confused.  I sought answers to very difficult questions:  What would my life be like without a bladder?  Without a prostate?  With a neobladder or an ileal conduit or an Indiana pouch?  And how would I choose between them?  My medical team tried its best to answer those questions, but could only go so far.  They acknowledged that, like bladder cancer itself, the experience of being a bladder cancer survivor was not well studied and that my questions were best answered by the experts, the survivors themselves.  Though I tortured Google for answers, the silence was deafening.

It was not very long before Google had something to say.  One year after my radical cystectomy, in November 2007, the BCAN Inspire web community was launched.  Bladder cancer survivors, partners, caregivers, family, and friends finally had a place to get answers to the questions that I had asked; to ask other questions like them, no matter how personal; to share good news and bad; to offer tips and tricks that make life as a bladder cancer survivor easier and more complete; and to give and get comfort during difficult times.

I have been an active participant of the BCAN Inspire community for over five years now and have been excited to watch the community grow and mature. As of August 2014, we are over 10k strong!  This dynamic group of very capable and wonderful people want what I want:  to make the lives of those impacted by bladder cancer less scary, less confusing, easier.  I think that we succeed.

The theme line for the BCAN Inspire web community is “Together, we are better.”  After five years as a member of this incredible community, I can tell you that this is more than just words.

 

To join the BCAN Inspire Web Community, go to https://www.inspire.com/groups/bladder-cancer-advocacy-network.

The post BCAN Inspire Web Community: “Together, We Are Better.” appeared first on Bladder Cancer Advocacy Network - BCAN.

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