Serve as a Voice of Advocacy for Testicular Cancer Patients, Their Families and the Healthcare Professionals Who Treat Them.
Beginning immediately, we intend to develop communications programs targeted at several key groups:
- Families to increase their understanding of the condition, its typical symptoms and likely progression and possible sources of medical assistance including knowledgeable physicians, qualified labs and updated research information.In most cases, a patient becomes the de facto “experts” on their treatment. Physicians and the medical community in general are largely ignorant regarding this condition and the presence and severity of its symptoms can vary widely from individual to individual. CACTI intends to act as an information clearing house, offering guidance to those on sources of information and knowledgeable assistance as well as creating an accessible link to other patients and families who can share their experiences and offer much needed support.
- Primary Care Physicians and Specialists such as Urologist, Oncologists, Internal Medicine Physicians, and other practitioners (Nurses, Nurse Practitioners, Physician Assistants, etc.) who may well be presented with a patient with the symptoms of testis cancer.Typically, a patient presents to a primary care physician or practitioner and is referred to an Urologist. Testis cancer is the most common malignancy in boys and men ages 15-35. Testis cancer often presents with a testicular mass or pain, but may present with an unusual combination of symptoms, not all of which may be immediately apparent.Testis cancer can grow and spread rapidly, quickly proving to be life threatening if not recognized and treated early. Increasing the familiarity of urologists and the most frequently consulted specialists (including urgent care personnel and emergency room physicians) with the epidemiology and pathology of testis cancer will invariably speed accurate diagnosis, minimize the severity of treatment, reduce long-term side effects and ultimately save lives.Even a passing familiarity with such a rare condition, combined with an easily accessible source of information regarding the condition, its treatment and the names of physicians and facilities with expertise in its treatment will prove invaluable to the patient and families struggling to deal with the highly curable yet potentially life threatening effects of testis cancer.
- Medical Researchers who may be engaged in, or encouraged to initiate, research programs focused on testis cancer are clearly a focus for CACTI’s support.While limited research has been conducted to date, researchers are becoming increasingly interested in its cause, treatment options and long-term impact of testis cancer. By focusing communications programs on appropriate individuals, institutions and corporations, we hope to increase interest in research into testis cancer.
- The General Public.As testis cancer is a rare disease, many affected individuals remain unaware of their treatment options. Finding ways to increase public awareness of the condition will provide the dual benefit of increasing early identification and effective treatment of affected patients and families and increasing support for the non-profit’s activities as well. CACTI intends to undertake a variety of public awareness efforts through the general and mass media, through publications targeted at males 18-35, and through publications targeted at the medical community. In addition, we hope to initiate direct mail campaigns targeted at selected members of the medical community to increase their awareness of the condition and the most up-to-date treatment options. Finally, all of our fund raising efforts will have the dual purpose of raising awareness among families, friends, the local community and other interested parties.
- International Communities.The founders of CACTI learned quickly that testis cancer is not confined to the US, or any geo-political boundaries. Through the Internet, we have already developed a network of patients, families, healthcare practitioners and academia. Our advocacy group expects to draw its support from and offer support to the testis community around the world. We hope to do so by partnering with affiliated organizations in several countries such as the Netherlands, Canada, Australia, India, the United Kingdom, Hong Kong and Singapore.
Our initial communication programs will consist of the publication of newsletters, pamphlets, compilations and updates of research articles developed and distributed by CACTI. Our website, (www.cacti.org), will serve as an increasingly effective means of communication and an inexpensive conduit for information from the Foundation to our constituency.
Publication of magazine articles, attendance and displays at appropriate medical conventions (eg American Urological Association (AUA), European Association of Urology (EAU), The Urological Society of Australia and New Zealand (USANZ), Urological Society of India (USI), Urological Association of Asia (UAA), American Society of Clinical Oncology (ASCO), European Society for Medical Oncology (ESMO), Clinical Oncological Society of Australia (COSA), New Zealand Society for Oncology (NZSO), Indian Society of Oncology (ISO), Asian Clinical Oncology Society (ACOS), American Society of Andrology (ASA), and fund raising events will all play a part in our effort to increase general awareness and understanding of testes cancer.
Assist the Families Whose Loved-Ones Are Suffering from Testes Cancer
In addition to the benefits provided through the communication programs described above, the Foundation will sponsor bi-annual conventions of patients, families, physicians, scientists, and support groups.
The first such conventions will take place in late 2015 and we anticipate will be attended solely by physicians and scientists interested in testis cancer in hopes of forming a medical advisory board. CACTI is planning the next convention for mid-2016 based on the overwhelming interest of all parties (including patients and families) in periodically gathering to share the latest information, offer mutual support and provide access to the world’s leading physicians and scientists focused on testes cancer.
Additional programs will be developed as specific needs develop.
Support Research into the Causes, Diagnosis, Treatment and Cure of Testes Cancer
The cure rate for all men diagnosed with testis cancer is approximately 95%. However, these men are subjected to surgery, chemotherapy and/or radiation with long-term side effects including secondary cancers, cardiovascular disease, hypogonadism and infertility. These issues are especially pertinent given the young average age (33 in the US) of men with testis cancer. Current research is focused on optimizing current treatment protocols and avoiding the long-term side effects associated with the disease and its treatments.
This research, and much more, will be required to effectively address the cause(s), diagnosis, treatment and cure of testes cancer. While the CACTI cannot hope to singlehandedly fund all the required research, it is the foundation’s hope that over the longer-term, our limited resources can be used: to generate attention, interest and independent funding of needed research; to help focus research efforts on the most promising areas; and in limited cases to provide “seed” funding for promising, but unproven areas of scientific inquiry. Clearly, these efforts will be dependent on the CACTI’s longer-term success in fund raising.
It is our hopes to build a global database of information describing the affected individuals, case and treatment histories, symptoms and physicians. This database (operated within strict privacy guidelines agreed to by patients and/or families submitting information) will serve as a source of information for researchers and physicians.
Support Other Organizations whose Activities are in Support of the Foundation’s Objectives.
We have and will continue to identify and build close informational and mutually supportive affiliations with charitable organizations, which address some aspect of testes cancer. To date these have included Testicular Cancer Awareness Foundation (TCAF). Mr Ballsy, Testicular Cancer Society, Love Your Nuts, Testicular Cancer Commons and Movember. Website linkages will be developed to encourage awareness of our website (and vice versa). These affiliations will help us accomplish our awareness and education goals, as well as providing much needed guidance to us as a new and developing organization.
CACTI also anticipates building linkages to medical research institutions with an interest in testes cancer such as the Johns Hopkins Institute, University of Southern California, MD Anderson, Baylor College of Medicine and Massachusetts General Hospital
As our experience, affiliations and funding grow, we will formalize our efforts to identify the most critical research and/or family support needs and seek to provide grants to qualified organizations and institutions in support of the Foundation’s mission and objectives.