BREAST CANCER SURVIVOR INFORMATION
Long-term issues for breast cancer survivors are often overlooked. Many breast cancer survivors encounter delayed side effects-such as heart problems, nerve damage, osteoporosis, and secondary cancers that can continue or emerge 10-15+ years after treatment ends, according to a survey by Cancer Support Community.
The survey-which was funded by Susan G. Komen for the Cure found that many survivors feel that social and emotional issues are some of the hardest side effects to handle. About 90% of survey respondents said they had at least one delayed physical, psychological or social issue that was moderate to severe. Fatigue, sexual dysfunction, and sleep issues were most frequently cited in the survey. Almost 25% of respondents said they experienced depression, which is about twice the national rate.
Although 96% of respondents said they wanted a survivorship plan, just 10% said they received such plans, which summarize the tests and treatments patients have received, side effects to expect, lifestyle changes to make, and where patients should seek follow-up care.
Many cancer centers have launched “survivorship” centers to address this issue, but about 85% of breast cancer patients are treated in community settings that do not have such resources, the Wall Street Journal reports. Beginning next year, the American College of Surgeons plans to require survivorship plans and distress screenings for facilities to receive accreditation.
Resources for those with throat cancers and laryngectomies
For cancer patients who have had a laryngectomy and are looking for resources to find needed equipment, there are several organizations that can provide assistance.
- Support for People with Oral , Head, and Neck Cancer (SPOHNC) produces a newsletter and has supportive care resources available on its website.
800-377-0928 - International Association of Laryngectomees (IAL) has an extremely helpful FAQs section for general inquiries as well as a section for first timers that addresses questions such as various types of speech, the speech process, and stoma care.
866-425-3678 - WebWhisperers is now the largest support group for individual laryngectomee survivors of larynx and other throat cancers. They provide useful resources for common concerns, stoma care, food and nutrition as well as information for caregivers.
- The Oley Foundation provides tools for people living at home on IVs and tube feedings with a wide range of resources available on their website. 866-454-7351 or oleyequipment@aol.com
- Patient Resource is another useful site that provides information and resources for patients and their families indexed by cancer type.
These organizations may also be contacted for financial assistance as well.
If you have any questions about dealing with a laryngectomy, would like additional resources or need help utilizes the resources above, please contact me, Phyllis Ruja Tell, MSW at the Ronnie Lippin Cancer Information & Resource Line at 877-752-2120. We also provide resources on our website for those affected cancer at www.lacancerinfo.org
Video Legacies for Terminally Ill Patients
Some patients diagnosed with terminal cancer may want to create a video before they pass away to give to their children or family.
Patients may want to create videos specific for when a child reaches a milestone in life, such as a birthday, graduation, marriage, first grandchild, etc. Some patients might want to read a story on a video for their future grandchild.
There are several services available to allow a terminal ill patient to create a video memoir for their family.
- Recordable story books can be found at Hallmark. They can be purchased online or in store.
- Life Chronicles is an organization created to help with making these legacy videos. They are located nationwide however services are not available in every location so it is important to check the details for your area.
- If a patient is on hospice, the pastoral care or social work departments may also have experience with creating videos as memoirs.
- Just So You Know is another organization providing resources for patients to record their oral history on video. Simply contact Just So You Know to find a recording location near you and set up a time to record your oral history
If you would like additional information regarding end-of-life issues and resources, please contact me, Phyllis Ruja Tell, MSW at the Ronnie Lippin Cancer Information and Resource Line. I can be reached by phone at 877-752-2120 or online at www.lacancerinfo.org.
New Social Security Administration Resource: The Disability Planner
The Social Security Administration (SSA) has changed their website content and there is something new: the disability planner. Through a series of links, you can very clearly see how many quarters a person needs at age increments, the amount of money earned that constitutes a quarter, and who is eligible for benefits. I think this will be especially helpful with young adult patients who have dependents and who are not always certain if they have paid enough FICA to receive Social Security Disability Income (SSDI).
Historically, many oncology social workers helped patients sort this out by asking if they get Social Security Administration (SSA) annual benefit statements each year before their birthday. Most patients were able to remember if they got this statement and generally had it filed at their home or office. It was just an estimate, but having that confirmation of their eligibility was enough to help prioritize the SSA application process when a young adult was suddenly diagnosed and worried about income in addition to everything else. SSA is no longer mailing these annual benefit estimates nor printing estimate statements either. You can now find them online with the SSA benefits estimate calculator.
General Assistance for Cancer Patients
Many cancer patients needing general financial assistance can benefit from the organization LOVE INC. (Love in the Name of Christ).
This is an agency that invites local churches to work together to meet the needs of people in their local community. They have over 150 affiliates in 30 states, including 14 locations throughout California. Primary qualification is living in the area served by a local affiliate. They do not have an agenda of religious conversion. They are an organization that has all denominations, and they don’t try to make you connect to any denomination or church attendance. You do not have to attend services or go to one of their churches to get the aid you need. They just serve social needs for the love of Christ. They have volunteer Spanish speakers at local Love Inc locations for patients who do not speak English. They have been very helpful with providing transportation and concrete supportive services to patients in many communities.
To find a location near you, click here
For more information and referrals to available resources for cancer patients, please contact Phyllis Ruja Tell at Ronnie LIppin Cancer Information and Resource Line 877751-2120 or fill out our request form online.
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