Posts tagged ‘patient resources’

2011 Open Enrollment for Medicare

The open enrollment dates for Medicare have changed and are

now from October 15-December 7. This is a switch from the past

enrollment period of November 15-December 15.

It does not seem like this change has been well publicized and the

concern is that Medicare recipients who want to make a switch will be

caught off guard and will miss the new deadline.

Please consider your satisfaction with your current Medicare benefits

and be attentive to the new enrollment deadline. Hopefully a reimder will

be issued soon from the Social Security Administration regarding the

deadline date change.

For more information regarding resources for enrollment for Medicare

contact Phyllis Ruja Tell, MSW at the Ronnie Lippin Cancer Information

and Resource Line at 877-752-2120 or view our self-help resources online.

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October 19, 2011 at 9:21 pm Leave a comment

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.

Beck, Wall Street Journal, Oct. 11, 2011

October 19, 2011 at 7:16 pm Leave a comment

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.

  1. 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
  2. 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
  3. 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.
  4. 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
  5. 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

August 18, 2011 at 6:05 pm Leave a comment

Dream and Wish Fulfillment Resources for Cancer Patients

The following resources fulfill “dreams’ or wishes” of adult cancer patients:

  1. Adult Wish Foundation
  2. The Dream Foundation
  3. First Descents is an adventure/river rafter program in Colorado for people with cancer
  4. The Jack & Jill Late Stage Cancer Foundation is a national resource providing WOW! experiences for children and families who have a Mom or Dad with late stage, limited life expectancy cancer.”

Jack & Jill Foundation eligibility requirements for all referral candidates:

  1. Late stage limited life expectancy cancer
  2. At least one child age between the ages of three and eighteen. Only one child must meet the age requirement
  3. A life expectancy over two months
  4. Referred by an approved referral agency or treating oncologist.
  5. Referrals must NOT have previously participated in an adult dream, wish or any other similar program.

April 19, 2011 at 6:08 pm 1 comment

Decision Making Resources for Transition from Treatment to Hospice

For cancer patients looking for a resource to help with the decision making process to either continue treatment or go on hospice, please see the following list of resource recommendations.

  1. Prepare a list of questions and meet with your physician. If your physician agrees that it is appropriate to consider hospice, make an appointment to meet with a hospice agency. If possible have family present at both meetings. For a list of referrals to hospice agencies contact the social worker at Ronnie Lippin Cancer Information and Resource Line.
  2. Use the booklet, Hard Choices for Loving People by Hank Dunn which helps with discussing this type of decision. This is a decision making tool that is not cancer specific and has been helpful for many patients.
  3. Read the article called, Do It Your Way by Kathy Gurland in “A Women’s Health” magazine. It focuses on the decision making process and breaks it down from a self empowering standpoint. Although it is not specific to the decisions for stopping cancer treatment or starting hospice care, it could be helpful as a general framework for cancer patients because it includes the comprehensive steps to be considered when making any serious decision.

March 7, 2011 at 11:42 pm Leave a comment

Caregiver Support Program

A Caregiver Support Program is going to become available through a special program funded by a private foundation called The Underserved Outreach Project.

For low-income and minority families, supportive and palliative care is an area of great disparity in cancer care. The Lloyd Symington Foundation has partnered with Collinge and Associates to make available 300 copies of the family caregiver multimedia education program “Touch, Caring and Cancer: Simple Instruction for Family and Friends” to address this need. The materials will be given to cancer centers and organizations that serve low-income, minority and underserved populations, to help develop the untapped potential of family members to improve quality of life of their loved ones with cancer.

The target period for distribution of these programs is March 1-June 1, and early applications will receive priority consideration. Click Here for a program description and the application materials. If you are part of an organization that serves these groups, please check out the program announcement. And feel free to forward this information to anyone you think might appreciate the opportunity.

For ideas on how to use the program in caregiver support programs and workshops with your organization, download the Guide for Professionals here.

February 10, 2011 at 10:42 pm Leave a comment

Breast Reconstruction

Under certain circumstances, the treatment of breast cancer may require complete removal of the affected breast (a mastectomy), or rarely, both breasts (bilateral mastectomy). If a patient agrees to a mastectomy, she may choose to have breast reconstruction afterwards. This usually is performed by a specialist, a certified plastic surgeon, and sometimes involves more than one operation.

There are various options for breast reconstruction. One option is the placement of an implant. Implants are not permanent and sometimes only last about 10 years and then need to be replaced. If the decision is to have an implant, it is important to discuss with the plastic surgeon the type of implant most suitable for a patient’s particular anatomy, as well as the potential complications and duration of placement. Besides an implant, other options are available involving more complex types of breast reconstruction designed to produce a more “natural” look for certain patients. Abdominal flaps and similar techniques are usually offered to younger individuals who can handle the much more extensive surgery, and for the most part results in more natural-looking breasts. However, not all types of reconstruction are appropriate for everyone, and certain medical factors need to be taken into consideration with regard to recommending the specific type of procedure. Also, it may be advisable to obtain consultations with more than one plastic surgeon.

One of the most complete photo books showing reconstruction is “Reconstructing Aphrodite”.

Another great resource for helping cancer patients learn about their choices for breast reconstructive surgery is Living Beyond Breast Cancer http://www.lbbc.org, which has offered free scheduled educational teleconferences on the topic Breast Reconstruction: Understanding Your Options.

Additional websites for information on reconstruction are:

http://www.breastreconstruction.org

http://www.youngsurvival.org , for young breast cancer patients wanting reconstruction.

http://bidmc.org/YourHealth/BIDMCInteractive/Blogs/LivingwithBreastCancer.aspx? A daily blog about breast cancer research, resources, psychosocial issues, etc.

http://www.breastcancer.org/pictures/reconstruction/

http://www.stopbreastcancer.org , the National Breast Cancer Coalition website. Look at Position Papers to find information about reconstruction.

http://www.dslrf.org/searchresults.asp ,Dr. Susan Love’s website showing some of the photos and stories from the book “Show Me”. Some of the techniques in that book are outdated but considered to be quite informative.

http://www.networkofstrength.org/information/treatment/reconstruction.php

http://www.diepflap.com/?gclid=CPa53NS5-KICFRAN2godBWK5hg ,a link with newer reconstruction techniques although not available everywhere and not everyone is a candidate.

And http://www.breastfree.org offering the “no reconstruction option”; checking out other options is always a good idea.

For additional referrals to information and resources regarding breast reconstruction please contact the social worker, at 877-RLC-2120, http://www.lacancerinfo.org to get the help you need.

February 4, 2011 at 12:16 am 1 comment

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