No one can ever be prepared to hear that they or a loved one has been diagnosed with cancer. Boston Cancer Support has spent years researching and vetting resources to help patients and families during this challenging time. Depending upon the patient’s age and stage in life, many questions may arise, such as:
- What are clinical trials?
- Should I consider fertility preservation?
- What are Palliative care services?
- How can I get help in my home?
- Practical Advice from Caregivers
The American Childhood Cancer Organization, for example, is one of the nation’s largest grassroots organizations at the forefront of the crucial battle against childhood cancer, its long-term impacts, and assistance to families engaged in this life-altering struggle.
Young adult cancer survivors are a unique group with unique sets of needs, such as continuing their education, starting their careers, dating and starting a family. As digital natives, they are often most comfortable beginning their search for emotional support online. Boston Cancer Support has numerous options Check out Instapeer, a free mobile app that will help you instantly connect with a survivor or caregiver. Young Survival Coalition is dedicated to the critical issues unique to young women who are diagnosed with breast cancer.
Accepting help can be difficult for many people as they do not want to be a burden or to appear weak. But getting help is critical when dealing with a long-term illness. There are many free services that can help organize chores such as meal delivery, child care, medication pick up and housecleaning. The Massachusetts PCA referral directory, sponsored by the Personal Care Attendant Quality Home Care Workforce Council, offers a comprehensive, up-to-date list of people in Massachusetts who are ready to provide personal care, FREE OF CHARGE, so PCA users can continue to live independently. The Visiting Nurse Association (VNA) takes great pride in their free care program. The VNA of Boston has joined VNA Care Network Foundation, a non-profit alliance of home health care and hospice providers serving eastern and central Massachusetts.
Don’t see what you’re looking for? Contact Boston Cancer Support and let us know how we can help.
YOUNG ADULT SURVIVORS
Young adult cancer survivors are a unique group, with unique sets of needs. As digital natives, you can find information here to connect both in person and online, including support groups and funding for school.
PEDIATRIC CANCER SUPPORT
No one can ever be prepared to hear that their child has been diagnosed with cancer. After accepting the news, you will have many questions-from clinical trials and support groups, to financial aid information. Below are some resources to help with pediatric cancer support. Please check back frequently as our site is updated weekly.
Clinical trials are essential for moving new methods of preventing, diagnosing, and treating cancer from the laboratory to physicians’ offices and other clinical settings. NCI has a broad array of programs that support clinical research, including programs that facilitate the development of new interventions, from the initial creation of candidate drugs in the lab to final testing in late-stage clinical trials.Read more about NCI’s clinical trials programs and initiatives. In addition, here is a 10-step guide called : How to Find a Cancer Treatment Trial.
The Coalition of Cancer Cooperative Groups is a unique nonprofit organization with one mission, improving patient awareness of cancer clinical trials, facilitating access, and promoting participation. Through innovative programs and services, the Coalition examines and confronts key issues impeding cancer research.
ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world. Learn more about clinical studies and about this site, including relevant history, policies, and laws.
GUMDROP is a nonprofit created to enhance patient outcomes through greater cancer clinical trial awareness. The website is intended to help all in the cancer community to filter through the current clinical trials that apply to bladder, kidneyand prostate cancers. It is hoped that improved clinical trial awareness and utilization will lead to improved survival.
Lab Tests Online has been designed to help patients and family caregivers, to better understand the many clinical laboratory tests that are part of healthcare today as well as the diagnosis and treatment of a broad range of conditions and diseases. At a time when patients have been granted greater access to their personal medical information through electronic health records and lab reports, Lab Tests Online fulfills a vital need for medical laboratory information that is easy to read and understand. The site is a go-to reference for your questions ranging from why a lab test is ordered to what the results might mean.
Stand Up To Cancer has provided this resource for you to register with the Clinical Trials Finder, a free and confidential cancer clinical trial matching and referral service operated by EmergingMed. Clinical Trial Navigators are available to guide you through the search process AND notify you know when new studies open that match a specific profile.
Here you will find evidence-based cancer information, education materials, and news, tailored to minority communities affected by cancer health disparities. Lifelines™ is a series of cancer education articles, videos and audio files from the National Cancer Institute’s Multicultural Media Outreach (MMO) Program. The series addresses cancer prevention, treatment, survivorship, health disparities, clinical trials and other cancer-related topics for African-American, Hispanic, Asian American and Pacific Islander and Native American populations.
Many people are confused about the difference between palliative care and hospice. While the two share some similarities, such as focusing on quality of life, pain management, and addressing psychological, spiritual and social issues, they are actually quite different. Palliative care services falls under an umbrella of any care that alleviates physical and emotional health, even if the diagnosis is not terminal. In fact, palliative care can begin upon the onset of treatment to help patients feel more comfortable by focusing on the relief of symptoms such as pain, shortness of breath, fatigue, anxiety, depression, lack of appetite and nausea.
Get Palliative Carge.org has provided a list of hospitals and rehabilitation centers in the state of Massachusetts that offer palliative care services. The site is provided by the Center to Advance Palliative Care (CAPC). The Palliative Care Provider Directory of Hospitals is a resource to help you or a loved one locate a hospital in your area that provides palliative care. Hospitals marked in green are verified through the National Palliative Care Registry™.
For patients and caregivers who cannot attend in-person support groups, or prefer online communities, see Online Communities and Social Networking
Cancer Hope Network is a national non-profit organization that provides free and confidential one-on-one emotional support to cancer patients, their caregivers, and their family members. Cancer Hope Network matches cancer patients or family members with trained volunteer cancer survivors who themselves, have undergone and recovered from a similar cancer experience.
SPOHNC (Support for People with Oral and Head and Neck Cancer) is dedicated to raising awareness and meeting the needs of oral and head and neck cancer patients through its resources, support groups and publications.Click on MA for local support locations.
The Boston Cured Cancer Club for Laryngectomees (BCCCL) is a group of people who have had laryngectomies, and their loved ones, whose purpose is to promote and support the total rehabilitation of laryngectomees. Members meet regularly at the Massachusetts Eye and Ear Infirmary in Boston.
Paddle for Recovery is a completely free SUP class ( Stand UP Paddleboard) for recovering cancer patients and a friend or family member who supported them through their treatment. The program’s mission is to provide an opportunity to escape on the water and even find a new passion that can assist in recovery. There are no gimmicks – it’s just FREE for anyone who is currently undergoing or who has recently completed cancer treatment. All equipment and instruction will be provided. Please consult your doctor before signing up to paddle.
Cancer treatments, work schedules, and life responsibilities can take a toll on families. The cost of transportation to and from treatments can add additional pressures. Our transportation page can help.
Going through cancer treatments can be overwhelming. Trying to figure out how you’re going to get to and from the hospital should not have to be an additional stressor, but for many, it is. Thanks to a partnership between Boston Cancer Support and Lyft, there is help. Lyft is dedicated to bringing reliable transportation to Boston and surrounding neighborhoods, offering 5 rides for up to $10.00 each for new users.
PERSONAL CARE ATTEDANTS
The Massachusetts PCA referral directory, sponsored by the Personal Care Attendant (PCA) Quality Home Care Workforce Council, offers a comprehensive, up-to-date list of people in Massachusetts who are ready to provide personal care, FREE OF CHARGE, so PCA users can continue to live independently.
The Visiting Nurse Association of Boston & Affiliates (VNA) takes great pride in their free care program. In 2013, clinicians provided this service to 1,322 patients without insurance or resources to pay for care. The VNA of Boston has joined VNA Care Network Foundation, a non-profit alliance of home health care and hospice providers serving eastern and central Massachusetts.
The Leonard P. Zakim Center for Integrative Therapies at Dana-Farber is dedicated to enhancing the quality of life for cancer patients and their families by incorporating complementary therapies into traditional cancer care.
Coping With Cancer: Tools to Help you Live, by CancerCare.org
What do I tell my family? Am I going to be able to continue working? How do I pay for treatment? What happens after my treatment is finished?
The answers to these questions are different for everyone because no two people experience cancer in the same way. A cancer diagnosis may make you feel worried, sad, confused, or angry. Your world is now filled with information and medical terms you never thought you needed to learn. And in addition to the physical difficulties, there are emotional and financial issues that you must learn to manage. Without a doubt, cancer turns your world upside down.
This booklet, provided by CancerCare.org, will help you understand the challenges that are a part of living with cancer and provide you with the tools you need to cope better with this experience. Importantly, you will learn that you are not alone—there are sources of support available to you, and many people have made this journey before you.
Written by experts, CancerCare’s easy-to-read booklets and fact sheets provide
reliable information on cancer-related topics.
A diagnosis of ovarian cancer can be devastating and overwhelming. Learning about your diagnosis is the fist stop-the more you know about ovarian cancer, the better equipped you will be to live your best life, remain hopeful, and found on the journey ahead. This booklet is intended to help you understand more about your body, diagnosis, and available treatment options.
Coping With Cancer is a fact-filled resource from the National Cancer Institute.
Many people who have cancer or who have been treated for cancer develop symptoms or side effects that affect their quality of life. . Care given to help patients cope with these symptoms or side effects is called palliative care, comfort care, supportive care, or symptom management. Palliative Care in Cancer, answers many commonly asked questions on this topic.
The American Lung Association is committed to defeating lung cancer and supporting those affected by this disease. We offer a variety of resources and information about lung cancer. Check out some of our key lung cancer support and education resources featured below. Or scroll down to explore our entire lung cancer section
LLS is the leading source of free, highly specialized blood cancer information, education and support for patients, survivors, families and healthcare professionals. We advocate for blood cancer survivors and their families, helping patients navigate their cancer treatments and ensuring they have access to quality, affordable and coordinated care.
The Coping with Cancer website is a complete online experience that educates and inspires. It is presented in a warm and friendly, easy-to-use format, and provides information by specific cancer type, general knowledge about living with cancer, and wellness and inspirational topics. The Coping media team is constantly adding relevant articles and trustworthy resources. The website is provided as a public service by Coping® with Cancer magazine.
PatientsLikeMe provides patients an effective way to share your real-world health experiences to help yourself, other patients like you, and organizations that focus on your conditions.
People who have survived cancer often face a myriad of short- and long-term challenges as a result of their disease and treatment experiences. In these video interviews, the former director of the adult cancer survivorship program speaks with experts from the fields of oncology, psychology, nutrition and more, about many of the typical issues cancer survivors face- from fear of recurrence, to long-term health concerns, to creating a plan for living well beyond cancer.
Learning that you have cancer can be an overwhelming experience – one that leaves you frightened, vulnerable and alone. The 4th Angel Mentoring Program offers free, one-on-one, confidential outreach and support from someone who has successfully made the same journey you are about to begin – the journey towards recovery.
Wigs for Well-Being is a non-profit organization founded by The Salon at 10 Newbury’s owner, Patricia Wrixon. For over 5 years Patricia has generously donated luxurious, customized or ready made wigs for cancer patients undergoing chemotherapy and as well as other treatments. Recently, the Children’s Hospital in Boston, Massachusetts, has proclaimed Wigs for Well-Being the official wig / hair piece provider for teenagers who are experiencing medical treatments at the hospital. This new partnership has enhanced the number of individuals that are able to benefit form Salon at 10 Newbury’s mission, not only here in Boston but in all of New England.
Look Good Feel Better is a non-medical, brand-neutral public service program that teaches beauty techniques to cancer patients to help them manage the appearance-related side effects of cancer treatment. Look Good Feel Better group programs are open to all women with cancer who are undergoing chemotherapy, radiation, or other forms of treatment. In the United States alone, more than 900,000 women have participated in the program, which now offers 15,400 group workshops nationwide in more than 2,500 locations.
Natural looking wigs in finer quality synthetics and human hair, for women experiencing hair loss due to cancer, alopecia, and other medical conditions or genetic predispositions. Girl on the Go stylists work one on one to help select a wig that is right for you and teach about wig construction and wig care. There is no waiting, no ordering. Everything is taken care of right at your private appointment.
Founded by Sylvia Caruso, who draws on her many years of experience in helping individuals with hair loss, The Hair Studio and Wig Salon helps clients of all ages with the emotional and practical needs of clients experiencing alopecia hair loss, cancer treatments and other hair loss conditions.
The American Cancer Society offers free or low-cost wigs at the following locations.
Online Wig Reviews
Wigs are available from human hair or synthetic hair; with various cap constructions; full or partial; and in every style and color. Choosing your wig carefully, and evaluating wig retailers, will help in making the best fit for your needs
Massachusetts law provides for coverage of hair prosthesis up to $350 per calendar year for anyone undergoing cancer treatment. Massachusetts General Hospital’s Department of Social Services has complied a resource list of nearly 60 salons that collaborate with various insurance companies.