SISTERS BLOGGING AGAINST BREAST CANCER: April 2015

LYMPHEDEMA CONCERNS

Although I had a bilateral mastectomy and also had several lymph nodes removed, no one mentioned lymphedema issues. I asked several nurses about my torso swelling, I look about nine months pregnant, none mentioned lymphedema. Again this is what I have discovered on a lymphedema site - http://lymphnet.org. I plan to follow up with diagnosis and treatment at a cancer treatment facility which specializes in lymphedema issues.

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On April 19, 2011, the Avon Foundation for Women, in partnership with the Lymphatic
Research Foundation and the National Lymphedema Network, assembled a group of
leading scientists and clinicians expert in breast cancer-related lymphedema to discuss
the advances being made in the early-detection and early-intervention of upper extremity
lymphedema, how such advances are improving management of the impairment and the
need for clinical standardization of care.

Breast cancer-related lymphedema (BCRL) is a chronic, debilitating disorder that is
frequently misdiagnosed, treated too late or not treated at all.i Lymphedema (LE) is an
abnormal accumulation of protein-rich fluid in the interstitium, which leads to limb
swelling, chronic inflammation and reactive fibrosis of the affected tissues resulting from
damage to lymphatic circulation following surgery, chemotherapy and/or radiation
therapy. Failure of lymph fluid to circulate normally promotes stagnation of extracellular
fluid and subsequent inflammatory response and injury to the surrounding tissues. This
process can occur quite early in the course of breast cancer treatment and has devastating
physical and emotional consequences to breast cancer survivors. Adverse effects
commonly seen include the risk of infection, loss of strength and functional limitation
of movement, as well profound psychosocial consequences including loss of body
image and self-esteem, vocational issues, onset of affective disorders and anxiety.
Recently published evidence and expert clinical opinion favor early detection and
timely intervention of LE as holding the greatest promise of reducing the incidence of
late-stage lymphedema.ii
Primary and Secondary Lymphedema
Although the literature often categorizes LE as being either primary or secondary, the
division may be somewhat artificial. There is an increasing awareness that genetic and
anatomic variances suggest predisposition of certain individuals to the development of
LE, although the exact etiology is unknown. LE risk also appears to increase with obesity
and higher body mass index.iii Consequently, optimal LE treatment has been noted to be
more effective when combined with weight loss strategies.iv

The disorder is common among the 2.3 million U.S. survivors of breast cancerv, affecting
approximately between 19-33% of survivors following axillary lymph node dissection
(ALND) and radiation therapy (RT)vi,vii and between 3.5-22% of survivors following
sentinel node (SLN) biopsy and RT.vi,vii,viii The wide variation in incidence and
prevalence is often due to differences in measurement techniques and definitions
employed in the identification or diagnosis of LE and/or when it is reported after
treatment.i While refinements in surgical and RT interventions have led to reduction in
overall incidence of LE in certain subgroups of patients, even the most conservative
4
strategies have not resulted in a complete elimination of the disorder.ix Essentially anyone
with a BC diagnosis that undergoes surgery, chemotherapy and/or RT is at relative risk
for LE.
Onset

FINANCIAL & HOUSING CONCERNS...

FINANCIAL SUPPORT

Some of the first places to contact are the American Cancer Society, Social Workers, and American Cancer Society Navigators, who can help you move through the different organizations. It helps to know who and want to ask for. This is just a short list, based on my current needs.

Patient Advocacy Foundation - 1800-532-5274 - http://www.patientadvocate.org/. Provides assistance to patients in making and defending insurance claims, and assistance with medical costs.

Cancer Care 1800-813-4673 - http://www.cancercare.org/ - provides financial and other types of support - check out their website. They will also provide a grant of $100, in a twelve month period, to cancer patients. Fill out the application and you can usually get a check within 2-3 weeks.

Life Beyond Cancer Foundation - obtain application from a Social Worker, physician, or other health care professional. The average grant is around $500. The grant can be used to pay car notes, rent or mortgage payments and utilities.

Salvation Army - local office - help with utilities, rent, etc. They also have a homeless prevention program.

HOUSING - in 'today's economy' or anytime, housing can be an issue when you are fighting cancer, work is limited, and resources are few. My house was foreclosed two years ago, and although I have not been on the streets, I have lived with friends and relatives, but I have not had my own home. I have looked at various ways to find a home.

HUD.gov - rent, buy homes - there are many programs and options with this government agency. On this website I have also found some very reasonable houses for purchase in my area. One house was as little as $16.000. HUD also has a program with Lighthouses for sale, some are even free. They come with certain stipulations, but if you like to live near the water in a historic building, it sounds great.

Mercyhousing.org - Affordable housing listings of homes in various price ranges for those in need. Developes and finances housing for families, seniors and those with special needs.

Hope Lodge - These are usually located in large cities. If you are in regular treatment and live more than an hour away, it may be possible to stay at a Hope Lodge. They are very nice, from what I hear, they have suites, kitchens and may provide transportation to and from the treatment site. They require that you come with a care giver, unless the doctor states you can stay on your own. Whereas, you have to be ambulatory, and able to take care of your self, and without any communicable diseases.

Senior housing - there are homes for various situations from affordable, HUD, independant living, assisted care, insurance, etc.

BREAST CANCER TREATMENT

Breast Cancer Treatment

Breast Cancer Treatment
www.thebreastcaresite.com

Find treatment options& resources for early-stage breast cancer
www.breastcancerADVISORS.org

Designed to enhance your touch sensation during a self-breast exam
www.livkit.com

Investigational med provided to women with late stage cancer
www.horizontal.com

This test can help predict the risk that breast cancer will come back
www.GenomicHealth.com

Get survival and side effect info for specific Cancer therapies
www.cancermonthly.com

Chemotherapy information
www.chemocare.com

Resource that covers information on symptoms, who is at risk, screening and treatment of this disease.
www.healthmba.com/breast-cancer-treatment.html

Information about the causes and prevention of cancer
http://cancermba.com/content/Types/breast-cancer.html

Oncolink
www.oncolink.com

Or call: 215.349.5445 Treatment options, clinical trial information, resources

BREAST CANCER NONPROFIT ORGANIZATIONS

Breast Cancer Nonprofit Organizations

Breastcancer.org
Information on the disease, treatment, and pictures
www.breastcancer.org

American Cancer Society
www.cancer.org

CancerCare
www.cancercare.org

Cancer.com
Non-specific information site for patients and others affected by cancer
www.cancer.com

Center for Disease Control
National Breast and Cervical Cancer Early Detection program, cancer screening for
low-income women.
www.cdc.org

National Cancer Institute
Government institute for cancer, student referral for basic information on cancer; offers patient PDQ information on specific types of cancer.
www.nci.hih.gov

WinABC
Women's Information Network Against Breast Cancer
www.winabc.org

911 Cancer.com
Lists numerous cancer service resources
www.911cancer.com

SUPPORT GROUPS

SUPPORT GROUPS -Breast Cancer Support Groups

Sisters... By Choice Breast Cancer Support Group

Breast Cancer Support Groups
www.cancernews.com/bcs.htm

Gillette's Cancer Connection
www.gillettecancerconnect.org

Lymphedema Network
Support for types of lymphedema.
www.lymphnet.org

Mothers Supporting Daughters with Breast Cancer
Support services provided by this organization are designed to help mothers who have daughters battling breast cancer.
www.mothersdaughters.org

National Coalition for Cancer Survivorship
Strengthens survivors in quality of life issues
www.canceradvocacy.org

National Lymphedema Network
General education, referrals, and guidance for lymphedema patients.
www.lymphnet.org

National Association of Breast Cancer Organizations
Breast cancer information, education, advocacy, current research, and referrals, online support listing
www.nabco.org

National Breast Cancer Coalition
Promotes Eradication breast cancer trough action and advocacy.
www.natlbcc.org

Sisters Network, Inc.
First national African American breast cancer survivorship
www.sistersnetworkinc.org

Susan G. Komen Foundation
"Helpline" with trained volunteers, funds research and other cancer related programs (AVON Walk, Race for the Cure).
www.komen.org

Susan Love, MD Organization
Tremendous volume of links to breast cancer resources
www.susanlovemd.org

Y ME
National support organization providing information in Spanish and English
www.y-me.org

Young Survivor Coalition
Young breast cancer survivors
www.youngsurvival.org

THE BEGINNING OF THE JOURNEY

Breast Cancer diagnosis - I didn't know it at the time, but I was being prepared for this. I had become closer to God than I ever dreamed possible. Donnie McClurken sings a song - 'Never knew I'd get to know Him like this'. I had recently worked in Thailand in a Burmese labor camp. I was there for 8 months and was preparing to sign a year's contract to continue to work with early child centers as an Educational Consultant. But I knew something was happening with my body that needed to be checked out. So I was directed home to Atlanta and began the search to find a way that would help. My first step in this process was a visit to the Womens Health Clinic (265 Boulevard, N.E., Atlanta). After a short sign in and eligibility determination, I was directed to a nurse for an initial screening. She immediately scheduled me for a mammogram with the center connected with Atlanta Medical Center. After the mammogran and sonogram, I was diagnosed with breast cancer. The Women's Health Clinic then referred me to a Surgeon and signed me up with Medicaid - for women with breast and/or cerivical cancer. What was so surprising was the existence of this program. One of the reasons that I had not gone to see a doctor or sought a mammogram was because I did not have health insurance or any money. I have heard other women say the same thing. Also, African American women are not ordinarily diagnosed with breast cancer at the rate of other ethnic groups, but their mortality rate is higher. Why? It is thought that one reason is that the type of breast cancer that they have is usually more aggresive. I also believe that it is because they do not go in to be tested in the early stages, for many reasons. Another important source that I learned about is the American Cancer Society. When I signed up for Medicaid for women with breast and/or cervical cancer, I also signed up with ACS. They had a list of services where I could request additional information, and I signed up for everything. I learned about several programs they had which would give me a free wig, also a workshop which showed me how to apply makeup after I started chemo, along with the makeup. I also talked to a dietician who was really helpful in preparing me for chemo. It also helped that I knew a patient Advocate with ACS, Dr. Curtis, who also gave me additional information and resources, not always directly related to my cancer. She is a blessing. For my treatment, I eventually decided on Dr. Phillips at her office in Emory Midtown. (Information on Dr. Phillips is in the sidebar) She had her office schedule me with a Radiology Oncologist, Medical Oncologist, and even a primary physician. She then scheduled me for a PET/CT, MRI, Bone scan, and heart scan. When all of these showed that the cancer had not spread and my heart was strong, she scheduled me to put in the port, which will be used for the chemo. So it begins. Dr. Phillips is remarkable. But what is even more remarkable is that a program exists for the treatment of breast cancer, even for women without insurance. I have included information and contact information on the Fulton Health Department. But this is a federal program, so it should be available in all counties across the country. About Women's Health Services Welcome to the Women's Health Services of the Fulton County Health Department. Our neighborhood clinics provide confidential contraceptive and women's health care services to residents of Fulton County regardless of age, income, race, religion, disability, ethnic background, country of birth, gender preference or marital status. Fees are based on income and family size, but no one will be denied services because of inability to pay. Medicaid and private health insurance are accepted for services. You will be served by a team of professionals: Nurse practitioners, public health nurses and physicians. The Women's Health Clinic provides the following services: Blood Pressure and Weight Evaluation Breast and Pelvic Exam, Pap Smear Screening and Referral (if needed) Breast Self Exam Instruction and Counseling Screening, diagnosis, treatment and/or referral for vaginal infections, sexually transmitted infections, including HIV Routine laboratory testing Mammogram referral through BreasTest & More Pregnancy Testing Referral for Perinatal and other Case Management Services The Center for Health & Rehabilitation 265 Boulevard, N.E., 4th floorAtlanta, Georgia 30315Tel: (404) 730-5835 (404) 730-5835Fax (404) 893-6743

SISTERS BLOGGING AGAINST BREAST CANCER

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