Links to Selected Internet Resources
This page does not provide all of the resources cited in the two Things I Wish I'd Known books, nor does it list every appropriate internet resource you might investigate for a particular topic. It does offer responsible short-cuts if you are facing an urgent information requirement. The items for which there is a descriptive paragraph are not (yet) addressed in the book and are provided for your additional information.
Informational resource links below precede links for activities to help your healing both before and after caregiving ends. Scroll down to see key groupings of links that array resources (in this sequence) for:
♦ General Information / Support and Information about Particular Cancers
♦ Directories of Comprehensive Cancer Center Programs
♦ Verifying Physician Credentials
♦ Second Opinion or Clinical Trials Resources
♦ Access to Investigational Drugs
♦ Financial and/or Legal Help
♦ Patient or Caregiver Support
♦ Pain Management and Palliative Care
♦ Young Adults
♦ Communications and Coordination Tools
♦ Career Issues
♦ Planning for Final Wishes
♦ Caregiver and Survivor Healing
Scroll down to find the links that are of immediate relevance to you. After you address your immediate need through use of one or more of these links, we hope you'll purchase the book for more comprehensive support and encouragement from caregivers who have "been there and done that." They share both their practical suggestions and their emotional reactions in a rich tapestry of experiences. relevant to the topic in the title.)
For General Information / Support and Information about Particular Cancers: (Please note that some of these sites also address the more specific topics listed below; some are cited more than once because the link takes you to the specific segment of the site.
The American Cancer Society provides an all-purpose information site about cancer in general and its various variants. Key information to seek out here is information about free services (transportation, support, housing, and so on) that may be available to patients and families across the country. ACS is most easily accessed on line for cancer information and through their help line (1-800-ACS-2345) which is staffed 24/7 by multi-lingual oncology nurses.
ASCO is an association of over 35,000 medical professionals that promotes lifelong learning for oncology professionals, both in both medical and research arenas. It provides a global network of oncology expertise and works to educate and inform cancer patients. Because of its commitment to research, education, prevention, and delivery of high quality patient care, it may be a particularly useful resource for information about recent research and treatment breakthroughs.
This site provides useful medical information, as well as particularly useful information for veterans and a listing of financial and scholarship resources available to people affected by any type of cancer (patients, survivors, siblings, and so on).
This site offers very useful medical information (including treatment options and a tool for finding specialized medical resources) as well as financial, legal, and insurance guidance.
This site is particularly rich with information about the disease and offers a way to access local resources for help and support. Especially useful may be the availability of a live chat (Nurses Corner) with specialized mesothelioma nurses.
This site focuses on the legal/financial and medical aspects of Mesothelioma. Particularly useful is information and consultation regarding compensation to which victims of Mesothelioma and particularly veterans may be entitled. As could be suspected from their name, they also provide listings of attorneys who specialize in helping mesothelioma patients and famililes, with particular focus on cases caused by asbestos. Their listing here does not in any way endorse their lawyer-finding service, but is intended to simply make affected people aware that such information may be available here and on other such sites online.
Particularly useful is PDQ (Physician Data Query), the NCI's comprehensive cancer database. These provide explanations for patients and for physicians, describing the variant of cancer and explaining the standards for care. This site also provides a glossary of terms and a link for finding clinical trials.
The National Cancer Institute has been working since 2007 to create a network of NCI certified community cancer centers. The program’s website says that this growing network of 21 community hospitals in 16 states (as of 2013) intends to bring current scientific developments, evidence-based medicine, and highly coordinated care to the 85 percent of cancer patients who are treated in their local communities, including underserved rural, suburban and inner-city locations. Sharing of best practices will include collaboration with NCI programs and related organizations such as the NCI Cancer Centers Program, The Cancer Genome Atlas, the NCI Community Networks Program, the American Society of Clinical Oncology, and the American College of Surgeons’ Commission on Cancer. Originally launched as a three-year pilot program in 2007, funding has been extended through at least 2012. Some programs that received initial certification were not renewedm, which is an indication of the NCI's commitment to ensuring high standards in granting accreditation.
Rare cancers pose a particular diagnostic and caregiver challenge. Among the resources available is "A Patient's Guide to Rare Cancer," which was published in 2009 by Cure (www.curetoday.com). This publication defines rare cancers and offers guidance on finding specialty care, finding support, treating rare cancers, insurance issues, and other related topics. They also publish a number of other publications available for download in pdf form at their website.
For Directories of Comprehensive Cancer Center Programs:
For Verifying Physician Credentials:
For Second Opinion or Clinical Trial Resources:
Healthline (a broad health information website) has done a study about cancer clinical trials and why they reach so few patients. Before pursuing the resources below, you might find this overview article useful. Then click on the resources below for help in actually finding one that can be appropriate for your needs.
The Center for Information and Study on Clinical Research Participation (CISCRP) is a first-of-its-kind nonprofit organization dedicated to educating and informing the public, patients, medical/research communities, the media, and policy makers about clinical research and the role each party plays in the process. This organization provides information and answers to frequently-asked questions, as well as a search function for accessing clinical trials by cancer site and by state. The organization also writes summaries of the results of clinical trials, many of which can be accessed on its website.
Center Watch is an especially accessible and useful source of clinical trials information. Such information is often challenging to access quickly from the NCI website. Center Watch provides patients and their advocates information on clinical trials, specific drugs, and other essential health and educational resources. Its Patient Notification Service, available at no charge, automatically e-mails you as soon as a clinical trial is posted that matches the medical condition and geographic area you specify when you register on the site.
www.breastcancertrials.org is a website dedicated to helping breast cancer patients to understand the pro's and con's of participating in a clinical trial and to find an appropriate trial. This website offers a Trial Alert Service to notify registered visitors of new trials as they open. Many of the trials (like I-SPY2) are trials in which standard treatments are enhanced by an added new drug.
National Cancer Institute: How to Find a Cancer Treatment Trial. The National Cancer Institute, which is part of NIH, provides a 10-step guide (easily printable) for understanding and finding clinical trials. Particularly helpful is step 6, which offers questions to ask about any trial as a basis for determining whether to apply.
For Access to Investigational Drugs: For some patients, after traditional therapies stop working or for rare cancers where therapies are limited, there are two resources that may be able to help. These are generally accessible through a physician's inquiry:
The US Food and Drug Administration has an expanded access program that may provide access to an investigational drug outside of a clinical trial to treat patients who have serious or immediately life-threatening diseases or conditions with no comparable or satisfactory alternative treatment options.
Idis Pharmaceuticals has a managed access program that is intended to help patients who have run out of treatment options in their own countries. Through this program, patients can access treatments that are still in development and may or not ever be approved but may have medicinal value for a vary small population. They also address access to drugs that have been approved in one country but not another, are an alternative to a discontinued drug, are used off-label in some countries, or are experiencing serious shortages.
For Financial and/or Legal Help: Before you know whether you need financial help, you'll want to go to the website for the American Society of Clinical Oncology, which provides a valuable list of questions to ask in order to learn about the various cost factors associated with a particular diagnosis and treatment. Once you've done that, resources for gaining financial or legal help are available on the ASCO site but specific links include:
Individual pharmaceutical company Patient Assistance Programs.
Ask your oncologist for information that will allow you to apply for financial aid, or at least find out the name of the maker of the preferred drug for your treatment.
. . . offers an online aplication for patients, providers, certified counselors, and laboratories to get financial help paying a portion of the costs for genetic testing to help determine whether a cancer diagnosis is hereditary. Applications must have a referral and must be submitted prior to sending blood samples to the lab. More information is available at 508-630-2242, 9 am - 5 pm EST, Monday through Friday.
The Cancer Support Community is an organization whose motto is that no one should have to face cancer alone. It has affiliated organizations in local communities nationwide that specialize in providing psycho-social support in the form of various support groups and activities that provide participants and caregivers with interaction with both professional counselors and people who are experiencing similar cancer experiences. They publish a booklet entitled "Frankly Speaking About Cancer: A Guide to Coping wiht the Cost of Care (Third Edition)." This can be downloaded in pdf form. There are also downloadable materials for assistance with prescription and insurance costs, as well as resources on the topics of financial assistance, unemployment, and disability programs.
. . . provides financial assistance to eligible individuals to cover coinsurance, copayments, health care premiums and deductibles for certain medications and therapies. If you've been prescribed a medication and your insurance company covers it, but you still cannot afford the coinsurance or copayment required, the Foundation may be able to help you by paying for part of your costs associated with the medication. Also, if you are eligible for health insurance, but cannot afford the insurance premium, they may be able to help with your insurance premium. When you click on the link and go to their home page, click on the Patient link to learn how to proceed in getting help. Please note that not all cancers are covered; the list of those that are included is available on the General Information page, on the Diseases and Medications under the heading "Open Funds."
LiveStrong provides useful information about a number of financial topics, including health and disability insurance, appealing insurance claim denials, Federal and state benefit programs, assistance for the uninsured, converting life insurance into income, converting personal assets and real property into income, and use of credit.
This site conducts an essay contest with winners eligible for scholarships of $1,500 each. Not huge, but when you're facing cancer, every dollar may help.
10 one-time scholarships are offered, with the largest at $5,000. The scholarships are awarded based on a competitive essay contest that focuses on research and writing about topics associated with the disease. More information, possible topics, and application forms are available at the link provided.
NeedyMeds (provides medication discounts)
. . . is a non-profit foundation serving families with children diagnosed with life-threatening cancer. Often families have no choice but to cut back on work in order to care for their child. Bills can become another stressor when families are already overwhelmed by fears for their child's health. TSWGO assists families with financial gifts that can be used for medical expenses, items needed by the child with cancer, trael, mortgage, rent, or personal expenses important to the family.
. . . is a Boston-based non-profit created by Patricia Wrixon, founder of Salon at 10 Newbury. The foundation provides 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, proclaimed Wigs for Well-Being the official wig / hair piece provider for teenagers who are experiencing medical treatments at the hospital.
Crowd Funding for Financial Support
If you're interested in helping someone set up a "crowd-funding" site to help raise money to cover medical and other expenses triggered by cancer treatments, you might want to check out Healthline's Online Medical Fundraising site.
The SAMFund awards scholarships and financial grants to young adult cancer survivors who have completed treatment. This link takes you to the information page regarding criteria for applying for such an award.
For Patient or Caregiver Support:
Boston Cancer Support. This nonprofit site provides a variety of support and community outreach resources for the greater Boston area. Particularly useful is the differentiation of resources for patients from those for caregivers. Available links deal with both treatment issues and issues associated with finanicial assistance, personal care attendants, and housing during treatment. This organization collaborates with a variety of other nonprofits, including the Leukemia & Lymphoma Association and the American Cancer Society.
The NCCS is a fairly broad support organization focused on living with cancer. Many of their publications are free and focus on such topics as emotional issues in cancer, understanding your insurance, financial issues, taking charge of your care, life after cancer, end-of-life issues, and caring for the caregiver. If you go to the tab for publications, you'll find TEAMWORK: The Cancer Patient's Guide to Talking with Your Doctor. This free booklet (which may be available in your cancer center's resource room or library) provides detailed questions to ask at each stage of treatment, as well as a good glossary of terms that you'll hear in "doctor-speak" and want to translate into patient-friendly terms.This booklet also provides useful guidance in how to describe symptoms, such as pain and fatigue, to your medical team in language that they'll understand and describes medications and techniques that your doctor may recommend to counter each.
Described above, the Cancer Support Community provides free psycho-social support services through a network of local affiliates nationwide. Research has shown that people who receive support from professional psychologists and peers experiencing similar challenges are not only better able to cope with the changes in their lives, but are also more likely to comply with medical advice. No one has to face cancer alone, and this organization ensures that the opportunity for mutual support enhances the quality of life for participants and their caregivers at any stage of the cancer experience.
The Cancer Knowledge Network (CKN) describes itself as "Canada’s most widely read cancer education portal, providing valuable, practical resources for people living with cancer, the doctors who treat them, and the loved ones who care for them." The site offers a wide range of freely accessible information, research findings, practical information, first-person accounts, and other useful materials, all carefully selected by experts. Caregiver stories are particularly compelling.
Pain Management and Palliative Care
Palliative care is treatment for the patient and not the cancer. In other words, it is intended to relieve pain, nausea, and anxiety that often accompany cancer treatment at any stage of the disease, even while curative treatments are underway. Resources for learning more include:
Palliative care is a distinct medical specialty. Most oncologists haven't been trained in pain management techniques, which palliative care physicians and nurses provide in addition to helping to improve patients' quality of life by treating other side effects (like nausea and anxiety) that often accompany a serious cancer diagnosis. This site was constructed by the American Academy of Hospice and Palliative Care and provides useful information and patient resources.
A good publication by the National Cancer Institute is available on the internet. It not only informs caregivers about cancer pain and medical treatments in general terms, but it suggests other techniques for relieving pain (acupuncture, biofeedback, distraction, heat and cold, hypnosis, oncology massage, meditation, rhythmic breathing and imagery, yoga, and so on). Research has shown many of these to be helpful in pain management if delivered by practitioners who are trained in their application for cancer patients.
ASCO provides a simple overview of palliative care, along with reference to a lung cancer study that showed that terminal patients lived longer when palliative care was combined with traditional cancer control therapies.
For Children (and their Caregivers):
Facing Frequent "Needles" Together
One of the real challenges for parents is helping children between the ages of 3 and 7, or so, to cope with the fact that they'll be getting needles several times a day. Sometimes the anxiety is stronger than the actual physical discomfort, but their parents are torn with wondering what to do to help. If so, try getting the child:
Also ask your medical team about Buzzy Cream, numbing cream with lidocaine in it, or Pain Ease as a precursor to shots. Each hospital may have its preferences, or maybe you can actually teach them something.
Other resources for learning about childhood cancers include:
Cancer is the number one disease killer of children, and even for those who survive, treatments are aggressive and cause enormous suffering. The ACCO provides information and support for children and adolescents with cancer and their families, to provide grassroots leadership through advocacy and awareness and to support research leading to a cure for all children diagnosed with this life-threatening disease.
Camp Kesem is a network of 41 camps founded with the support of the LiveStrong Foundation. These camps are created by students from universities who fund and run the camp program for children ages 6 to 18 who have a parent battling cancer, in remission, or who has died of cancer. The students raise all of the funds necessary to provide the camp experience at no cost to the campers. They are unpaid but do this to provide respite and support to children who have had to grow up too soon as a result of parental cancer.
For the summary of a Boston Globe article about a Camp Kesem in New Hampshire that is run by MIT students and alumni, go to Camp Kesem Bella English Article (August 27, 2013).
Camp Sunshine on Sebago Lake in Maine provides respite, support, and joy and hope to children with life-threatening illnesses and their immediate families. It is a free year-found program that includes 24-hour onsite medical and psychosocial support. Bereavement programs are also offered.
The Cancer Knowledge Network publishes a website that provides information and support, drawing on medical, support, and caregiver perspectives. Its newsletters and resource pool is impressive.
Fred Rogers' name to fame derived from Mr. Rogers' Neighborhood, a public television mainstay for over 40 years. The company he founded focuses on communication with children and offers useful insights for understanding how children of different ages process information. Its resources are particularly helpful in planning how to handle age-appropriate conversations about potentially life-threatening situations like a cancer diagnosis.
Kids Konnected is an organization based in California that specializes in supporting children whose lives are affected by cancer. They have a good resource list that suggests reading matter for kids, teens, and parents on communicating about cancer in the family.
The Magical Moon Foundation, located on a farm in Marshfield Hills, Massachusetts, is an organization that focuses on creating positive and empowering experiences for children fighting cancer. Children who visit here are knighted into a fellowship of brave young knights who collaborate in a mission to build a "healthy Earth Kingdom where children won't get cancer." Through their shared activities at the farm and their individual projects, the knights provide mutual support and encourgement as they work through the difficult experience of cancer treatment.
For Young Adults
The issues for young adults facing cancer and their caregivers are particularly challenging for two reasons. First, there are rest-of-your-life issues like fertility that face survivors and their loved ones. Second, it's often particularly challenging for young adults to get a timely and accurate diagnosis because symptoms may be subtle or unusual to see in patients in this age range. As a result, some sites are particularly relevant for this population.
This site is particularly helpful for teens and young adults. It provides a variety of resources and sources of information and support. In its own words:
Stupidcancer.org empowers young adults affected by cancer through innovative and award-winning programs and services. We are the nation's largest support community for this underserved population and serve as a bullhorn for the young adult cancer movement. Our charter is to ensure that no one goes unaware of the age-appropriate support resources they are entitled to so they can get busy living.
Young adults, a largely unknown group in the war on cancer, account for 72,000 new diagnosis each year. That's one every eight minutes. It's also seven times more than all pediatric cancers combined. This is not OK!
Cancer in adolescents and young adults (ages 15-29) is often underrecognized and diagnosed at fairly advanced stages. It usually requires aggressive advocacy with the medical system and persistence in pressing for explanations for physical conditions (that may present as constant colds, "permanent flu," or unexplained pain or discomfort) that aren't responding to initial treatments. This site provides information and resources to help in understanding the medical, psychological, and emotional challenges facing this age group.
Team Shan is a nonprofit organization based in Ontario, Canada, which was created in the wake of Shannon Larsen's death of inflammatory breast cancer at age 24. Her mother Lorna discovered that medical professionals didn't recognize Shan's symptoms soon enough to catch the disease while it was still treatable. In response, she created Team Shan with the mission of educating the public, health care professionals, and young women about early detection, risk reduction and prevention of breast cancer. The website includes a helpful literature review and information about public education campaigns conducted across Canada.
This organization serves anyone between the ages of 18-39 who has heard the words, "You have cancer." They offer free outdoor adventure programs (including whitewater kayaking, rock climbing, mountaineering, and surfing) in eleven states, Canada, and South America. Some young survivor "graduates" call it the best week of their lives.
This organization aims to help young survivors "reflect, refocus, rebuild, and live." To quote from their website, "Many young adults feel they have missed out on some of the best years of their lives and feel intense pressure to 'get on with it' once they have finished treatments. They often jump right back on the path they were following pre-diagnosis, just to realize that so much has changed and what they thought was important to them is not so important any more.
The travel, adventure, and in-depth reflection and exploration of the cancer episode is designed to allow survivors to give themselves permission to reflect on the past while refocusing on their current lives and moving forward with deeper insights about themselves.
For Communications and Coordination Tools:
The ability to communicate with multiple friends and family members and to mobilize helping resources, especially for providing family meals during treatment, is a vital support tool. Three strong and often-praised resources for doing this are:
For Information about Career Issues
. . . is a unique resource to help survivors and caregivers to deal with the employment issues caused by cancer. It's goal is to empower and educate people with cancer and their caregivers in the workplace by elminating fear and uncertainty through information, tools, free publications, career coaching, and a series of support groups and educational seminars.
While the site is positioned for survivors, it has significant potential to help caregivers whose careers were interrupted by their tenure as caregivers. Particularly useful is the list of free publications, including a Shoestring Survival Guide.
Nutrition and Dietary Support
The American Cancer Society says that poor diet and lack of exercise may increase a person's risk of cancer. There are numerous resources available on line and in print that may be helpful for those who want to enhance prevention or treatment through dietary changes:
Managing Nutrition during Cancer Treatment
American Cancer Society guidelines for handling nutrition during treatment address the appetite, digestive, taste and smell, and other nutrition issues that a cancer patient may confront during treatment. These are available on line in downloadable pdf form. In addition, ACS sells a book that provides more detail about how nutritional choices may enhance quality of life both during and after treatment.
Dana-Farber Cancer Institute's website provides a listing of books about nutrition and cookbooks for nutritional support during and after treatment.
Evidence-Based Nutritional Guidance (beyond treatment)
There are also websites like www.savoryliving.com that provide all natural and healthy nutrition guidance, as well as online cooking and behavioral change guidance. This organization was founded by Sue R. Levy, a health coach and natural foods chef, who lives with LAM Lung Disease (lymphangioleiomyomatosis), a serious and rare, progressive, and not fully treatable estrogen-receptive cancer. Savory Living offers an online 10-week healthy eating program designed to inspire participants to align their eating with evidence-based "healthy eating best practices" from leading institutions (e.g., Harvard School of Public Health, the American Diabetes Assoc., and so on) to support their overall health and manage disease. While this organization doesn't claim that its program will cure LAM or cancer, its website does carry strong testimonials from both individual and corporate clients.
Planning for Final Wishes
Healthcare and legal experts advise everyone to think through the complex issues that face anyone in the event of a life-threatening illness or any situation (serious surgery, advancing age, and so on) where a patient may not be able to speak or otherwise express his or her own wishes to care providers. One good resource for doing this, regardless of age, is the website agingwithdignity.org.
This website offers perspectives for families and individuals, businesses, clergy, and healthcare providers. Perhaps most useful is the document called "Five Wishes," which can be ordered in printed form or completed online. Originally introduced and distributed with a grant from The Robert Wood Johnson Foundation, the largest American philanthropic organization dedicated exclusively to health and health care.
"Five Wishes" is a form of living will that conveys the patient's desires about conditions in which you would choose not to be intubated, kept alive by artificial means, or other major decisions affecting your end-of-life care. It meets the legal requirements of an Advanced Directive in 42 states and can be attached to state-required forms in the other eight. It is available in 26 languages and can be customized.
The five wishes deal with:
♦ Wish 1: The Person I Want to Make Health Care Decisions for Me When I Can't
♦ Wish 2: The Kind of Medical Treatment I Want or Don’t Want
♦ Wish 3: How Comfortable I Want to Be
♦ Wish 4: How I Want People to Treat Me
♦ Wish 5: What I Want My Loved Ones to Know
There is a separate document called "Voicing My Choices" that is designed for adolescents and a document called "My Choices" for pediatric cancer patients who are facing a terminal diagnosis. These booklets are not free, but are available for a nominal price.
For Caregiver and Survivor Healing
Many caregivers and their loved ones benefit from engaging in activities that take their minds off of what they're dealing with in the moment and offer more spiritual endeavors in which they can rediscover themselves. In addition, they find that these kinds of action programs allow them to overcome negative feelings about what the cancer experience may have taken from them and to focus on dealing with their feelings about that experience in a constructive and even nourishing manner. At the end of this section is a discussion bulletin-board resource for young widows, whose needs are fairly unique.
These resources include:
Equine Facilitated Learning Programs
The Center for America’s First Horse, in Johnson, Vermont, together with EQuinimity, offer Equine Facilitated Learning Programs for individuals and groups. In a safe, non-riding, and supportive environment, horses help participants access the wisdom of the human body, tap into their deepest emotions, and learn to communicate in new authentic and effective ways. The experience empowers a person at the deepest levels, feeling renewed in how they move forward in life with new strengths and beliefs.
The Center's website says, "Horses have qualities for which we humans inherently strive. They are truthful & communicate to their herd mates with clarity and precision. Horses are also non-judgmental. They live purely in the moment. Our unique herd of Spanish Mustangs are inspirational and teach us to be better in our relationships with friends, family and co-workers.”
The Center also offers natural horsemanship skills, riding lessons, and training. Prior horse experience, or even a desire to ride, is not required.
Fly fishing retreats create life experiences for cancer survivors and caregivers with the focus on renewal, healing, and hope through new friendships, new adventures, and the beauty of nature. The retreats generally take place on weekends and focus on bonding experiences that allow participants to recognize that they have traveled similar paths and are standing in the current of the river together, facing the future. They are inspirational and memorable.
. . . is a network of dragon boat paddling teams for cancer survivors and caregivers. Program benefits include activity to overcome lymphedema, which can result from breast cancer surgery or treatment, as well as improed stamina, and deelopment of new supportive relationships. There are now cancer survivor teams on every continent that engage in competition against each other.
This bulletin board and message exchange tool offers a resource for those who find themselves widowed at a younger time of life than is typically expected.