If you or a loved one is diagnosed with cancer, you need the support of people who have walked in the same shoes understand what you are going through. Online cancer support communities provide opportunities for patients, survivors and caregivers to help and support each other:
IHadCancer.com. Cancer survivors, patients and caregivers share stories, successes and treatment experiences. Site users can filter searches by gender, age, year of diagnosis, type of diagnosis and their role as patient, survivor or caregiver.
CancerCare.org. Led by professional oncology social workers, Cancer Care groups are available for the most prevalent cancers. Also offered are support groups for post-treatment survivors, caregivers, loved ones, and bereavement/grief. Telephone and face-to-face support groups are also offered.
American Cancer Society. A clearinghouse for all things related to cancer, this multi-language site provides educational information on cancer topics, current cancer research, clinical trials, staying healthy, and other treatment tools and resources. Online support communities are hosted for patients, survivors, family and caregivers. Phone, email and local support are also available.
CancerSupportCommunity.org. Online support groups, distress screening and emotional support services for patients, family and caregivers are among the educational and support services provided. A special online support group for teens is also available. Site users can create their own webpage to keep friends and family updated on their cancer journey. Helpful information is provided on parenting through cancer and other issues families face when a loved one has cancer.
Thousands of people are touched by cancer every day; yet in the early days of diagnosis the feeling that you are alone in your struggle is nearly universal. A cancer diagnosis is an isolating event.
Patients and their families talk of feeling like the walls of their world are closing in on them. In the shock of dealing with their cancer diagnosis and coping with the overwhelming task of scheduling doctors’ visits and lab work, evaluating the potential effectiveness of traditional and alternative cancer treatments, making arrangements to start treatment, and managing all the changes cancer inflicts on their personal, family and work life, many cancer patients and their families tend to draw back from their normal support systems, increasing their feelings of isolation.
Many times newly-diagnosed cancer patients hesitate to share their diagnosis with extended family, friends or co-workers until they have a clearer picture of what they’re facing and how cancer might affect their ability to continue their normal activities. Often, cancer patients and their immediate families are so overwhelmed by their own fears and emotions that they are simply unable to also deal with the fears and emotions of others. While friends mean well, cancer patients can find their raw expressions of concern and sympathy uncomfortable and even embarrassing.
Despite all these difficulties, cancer patients and their families desperately need support. Cancer is a difficult battle that is impossibly hard to fight alone. Many cancer patients find the support they need in online communities where cancer patients and their families share their stories of hope and help lift each other up when despair strikes.
Next time: A review of online cancer support groups
For any medical ailment, the more information you can give your healthcare provider, the easier it may be for your physician to diagnose and treat what ails you. Patients are frequently encouraged to keep a daily diary of their symptoms before visiting the doctor to aid in diagnosis or to make a record of their physical and emotional reactions after beginning a new drug therapy to determine its effectiveness.
In such records, doctors frequently find useful and sometimes vital clues that allow them to provide the best possible health care for their patients. Keeping a personal record of your cancer history can provide vital information to your Issels treatment team that may not be included in your medical records. In all medical treatments, including cancer treatments, symptoms and patient reactions are open to interpretation guided by the doctor’s experience, training and medical bias.
Medical bias may be a product of a physician’s personal experience, local medical culture, federal regulation or even national sensibilities. For example, many drugs and treatment therapies that are highly respected and even commonplace in Europe are not accepted in the U.S. because they have not yet been approved by the FDA. Acupuncture is an excellent example of changing medical attitudes.
Part of Chinese medical culture for centuries, many Western physicians looked upon acupuncture as snake oil medicine; but today the National Institutes of Health endorses acupuncture as a valid alternative medicine and 43 states license, register or certify acupuncturists. Many aspects of cancer remain a mystery. The same data reviewed by a different cancer expert can point the way to new and possibly beneficial cancer treatments.