Breast Cancer & HIV: Knowledge = Survival
by Susan Rodriguez
For months, this has been a piece that I wanted to have done.
This has been the most difficult issue for me to start because as a breast
cancer survivor (three years) also living with HIV, it is an emotional
and all-too-fresh trip down memory lane. However, upon my cancer diagnosis,
breast cancer immediately became a concern of mine as an advocate for
women living with HIV.
My breast cancer diagnosis at age 39 came at a time when talk about metabolic
changes and fat redistribution, in particular, breast enlargement in women,
were just being noticed and investigated in HIV+ women. I then became
worried that breast cancer was something that women with HIV/AIDS were
more at risk of developing. I immediately began seeking out and questioning
HIV doctors, oncologists (cancer doctors), researchers and healthcare
professionals who I had known personally, recommended by friends and associates,
or through SMART University presentations.
Over the years, I have also approached doctors and researchers that I
would meet at workshops, conferences and forums about this subject. So
far, the general consensus among these practitioners and healthcare professionals
is that there is no link between breast cancer and HIV.
However, I might add, there has also been very little data to-date that
has been cross-referenced between the two diseases, meaning that a sharing
of information between researchers for breast cancer and researchers for
HIV/AIDS has not been adequately established. While all women are at risk
for breast cancer (and men can develop it, too), maybe we need to look
at what subgroups of women living with HIV/AIDS may be at higher risk
for breast cancer.
1. According to the American Cancer Society, breast cancer is the second
leading cause of cancer death in North American women, second only to
lung cancer. It is the leading cause of cancer death in women between
the ages of 35-40. Over 75% of women diagnosed with breast cancer are
aged 50 and over. Simply being a woman and getting older puts you at risk
for breast cancer. As women are living longer with HIV/AIDS either through
HIV medications and/or complementary therapies as well as lifestyle changes,
we are experiencing diseases that are on a rise with women on a whole.
Who is the growing group of women living with HIV/AIDS? Women over 50!
2. Statistics from Healthy People 2010, a document put together by the
U.S. Department of Health and Human Services (www.healthypeople.gov/),
show that death rates for breast cancer in 1998 were highest among African-American
women. While it is not believed that African-American women are more susceptible
to breast cancer than other racial groups (Latina women are showing an
increased rate), this increased death rate occurs in African-American
and Latina, low-income communities. According to the University of Alabama
at Birmingham, “Lack of breast cancer screening and limited access
to care are two of the main causes for this disparity.” According
to the CDC, heterosexual transmission has now become the greatest risk
factor for HIV infection in women. In a study conducted in 25 states,
African-American women accounted for 50% of all new heterosexual HIV diagnoses
from 1998 to 2000 and while African-American and Latina women represent
just 25% of all U.S. women, they now account for 80% of AIDS cases reported
in women. The disparity in the growing rate of African-American and Latina
women getting HIV/AIDS, as with breast cancer, may be attributed to the
lack of healthcare, screenings and prevention information, especially
in low-income communities.
Well, what does this all mean? As a woman, you need to make sure you take
the time to take care of your health! I know, easier said than done --
women tend to put their health and needs last – most often we are
caregivers to our children and/or other adults and lead busy lives --
too busy to take care of our health. STOP DOING THAT! Make yourself #1!
What will happen to your family if you get sick? This was my wake-up call:
Everyone and everything came before taking care of myself. I had missed
a mammogram screening in February because I was too busy. By the time
I felt a lump in June through a self-exam and was screened in July, the
lump had grown to 2.8 centimeters. After going through two surgeries (one
lumpectomy removing all lymph nodes and then a subsequent surgery to take
out more surrounding tissue after it came back that all the cancer had
not been removed), I was given a Stage IIA cancer diagnosis since two
lymph nodes were also positive for cancer. Stage IIA is treatable and
highly curable, but definitely not as good as if it were found at an earlier
stage. Would a mammogram had caught this earlier? Probably. Do I beat
myself up about this? Yeah, I do sometimes. Would I have had to go through
the surgeries, six months of chemotherapy and seven weeks of radiation
and now ongoing breast reconstruction if it had been detected in a mammogram
a few months earlier? I will never know the answer to that question and
don’t let it be a question you will have to ask yourself.
Whatever your reason or reasons may be for not going for a mammogram,
they are not good enough. Women would tell me how uncomfortable a mammogram
was for them and how they hated to go. The discomfort of a mammogram lasts
a few minutes (see below “What is a Mammogram?”). A mammogram
that shows nothing will give you peace of mind; early detection of a tumor
is treatable and curable.
Being poor or without health insurance has been a reason why women have
not had this potentially life-saving screening since it is expensive.
As a result, there are many programs around the country to provide free
mammograms to combat the high death rates in low-income communities. To
find a place locally, contact Center for Disease Control, 1-888-842-6355
(select option 7), http://www.CDC.gov/cancer/nbccedp/. The CDC has information
on the
National Breast and Cervical Cancer Early Detection Program (NBCCEDP)
as well as information about breast cancer, resource materials, fact sheets
and other useful information. (Also, see page 8 on how you can fund free
mammograms at no cost to you!)
The problem, however, may be in receiving treatment if you are diagnosed
with breast cancer if you have no health insurance or have financial difficulties
and it may be necessary to contact organizations and agencies that can
help you through this process (see List 1 “Resource Organizations”).
In addition to being an advocate for your healthcare as a woman living
with HIV/AIDS, you may also have to be an advocate for yourself in getting
proper healthcare as a woman, especially those who get healthcare in low-income
communities. A friend of mine who recently turned 40 was sent for a mammogram
at a city hospital in a low-income community. The other women who were
there were elderly and spoke little or no English. After sitting there
for an hour and seeing that no one was being taken care of, she asked
the other women how long they had been there (it was now around 2:00PM).
Some had been there since early in the morning. She inquired at the desk
why there was such a delay and it was only then that someone said the
equipment was not working and had not been all day. Clearly, if this were
in a more upscale setting, this probably would not have happened or at
least an attempt would have been made to explain the problem to the waiting
patients.
There is an Act-Up saying: HEALTHCARE IS A RIGHT. While this current administration
is making adequate healthcare a luxury for us, with budget cuts of health
and social services in low-income communities and with ADAP (AIDS Drug
Assistance Program) in severe financial difficulty in most states, we
must actively make sure that our voices are heard and make sure we are
provided decent and adequate healthcare. (See List 2 “Advocacy Organizations”
for places you can contact to become an advocate and a voice for better
care.)
Taking care of yourself is not being selfish – it is being SMART!
Maybe I realized this too late, but better late than never. If you are
living with HIV/AIDS, it is even more critical that your healthcare provider
makes sure that you go for routine screenings (like a mammogram and pap
smear) so that if something is found in its early stages, you can be treated
and, more than likely, cured.
Know your risk. The risk for developing breast cancer is individual. It
depends on a combination of lifestyle and personal traits known as “risk
factors.” The following risk factors are strongly related to the
disease and can alert you and your physician to the need for careful follow-up:
* A family history of breast cancer; especially in your mother, sister(s)
or daughter(s)
* Age – in general, the older you are, the greater your risk
* Never having borne a child
* Having your first child after age 30
* First menstrual period at an early age
* A history of benign breast disease that required biopsies
* Other breast conditions: lobular carcinoma in situ (LCIS) or atypical
hyperplasia
Keep in mind that while being HIV positive may not put you at a higher
risk for breast cancer, an immune compromised system will not function
as well as a healthy one in fighting off cell abnormalities that could
lead to the making of cancer cells. In other words, if you are not eating
well, smoking, using street drugs, getting stressed out and not exercising
(all the things that HIV LOVES and helps HIV increase your body), your
immune system may deteriorate which may increase the risk of infection
or cancer cell development, and for women, in particular, possibly breast
and cervical cancer.
Screenings: Breast self-examinations, clinical breast examinations and
mammography
Breast Self-Examination
Monthly breast self-exams start at age 20.
Ask your health care provider (maybe your GYN nurse practitioner/doctor
who also does a pap smear) to teach you the proper way to do a thorough
breast exam. Maybe even bring your partner in so he or she can learn,
too, and assist you in your monthly breast exam. It can bring closeness
and fun into that monthly task with a second opinion! If you find any
lumps, thickenings or changes, tell your doctor right away! Most breast
lumps are not cancer, but you don’t know if you don’t ask.
NOTE: Studies so far have not shown that breast self-examination alone
reduces the number of deaths from breast cancer, therefore, it must not
take the place of a clinical breast examination and mammogram.
Clinical Breast Examination
Between ages 20 and 39, have a clinical breast exam by your health care
provider at least every three years. Ideally, when you have an annual
pap smear*, have your health care provider do a
clinical breast examination.
After age 40, have a clinical breast exam by your health care provider
every year. Again, you should be having an annual pap smear* and it can
be done at that time.
*Pap smears that check for problems in the vagina, such as cervical cancer,
should be done routinely every 6 months in HIV+ women; every 3 months
if it is abnormal.
Mammography
Annual mammograms are the best way to find breast cancer early.
Have a mammogram every year if you are age 40 or older.
If you have a history of breast cancer in your family, discuss a personal
mammography screening schedule with your health care provider.
What is a mammogram? A mammogram is an X-ray of the breast, taken with
special equipment, which pictures the fat, the fibrous tissues, the lobes,
the ducts, the blood vessels, and the other tissues of the breast. While
it may be mildly uncomfortable to go through for a minute or so because
your breast needs to be compressed (flattened) to get a good picture,
it should not be a torture session! If you find that it is, let the technician
know at once to stop and ask to see the radiologist or if the radiologist
is doing it, let her know and ask her to be more gentle.
Why is it that routine mammograms start at age 40 and not earlier? Mammograms
may be done in younger women if they fall into a high-risk group such
as a strong family history of breast cancer to get a baseline mammogram
between the ages of 30 and 35. Women, whatever their age, may be told
to have an annual mammogram if they have had any type of cancer. The problem
with having a mammogram earlier than age 40 has to do with the composition
of the breast: Younger women, under age 40, have more hard or dense tissue
(the lobes, the ducts and other breast tissue) which shows up white on
the x-ray. Tumors, because they are also dense, will show up white on
the x-ray so it will be harder to spot – white against white. As
women get older, the breast becomes primarily composed of fat and becomes
less dense. Soft tissue, such as fat, reads as gray on an x-ray and if
there is a tumor, which will show up as white, will be easier to see –
white against gray.
Dense breasts: Use of Ultrasound Test with Mammogra
According to a recent study by Dr. Thomas Kolb, a radiologist from Columbia-Presbyterian
Medical Center in New York, use of an ultrasound test for women with dense
breasts proved to be a valuable diagnostic tool when used in addition
to a clinical breast exam and mammogram. The study looked at 13,547 women
with dense breasts whose clinical breast exams and mammograms showed a
normal reading. After the ultrasound test, 246 cancers were found in 221
of the women. (In an ultrasound test, cancers show as dark spots and can
be more easily read.) However, ultrasound testing is not an accepted screening
technique so you will have to make sure your insurance covers it —
the cost is about $100. Ultrasound is also used in cases where a woman
is undergoing breast reconstruction and use of a mammogram is not feasible.
Going for a mammogram for the first time can be a scary experience. Take
a friend with you if you can, especially someone who is supportive and
relaxed. Even if it’s not your first time, it can be a nerve-wracking
experience, not knowing if they’ll find something. The good news
is that there is so much research being done on breast cancer, with more
still needed to be done without a doubt, and early detection can result
in treatment, cure and SURVIVAL!
Susan Rodriguez is Founder and Executive Director of SMART, Inc.
Special thanks to John Falkenberg and Victor Hernandez for gathering material
and information.
Resources for article
U.S. Department of Health and Human Services
Healthy People 2010: Understanding and Improving Health, 2nd edition
U.S. Government Printing Office, Washington, DC, November 2000
www.healthypeople.gov
U.S. Department of Health and Human Services
Centers for Disease Control and Prevention
National Center for HIV, STD and TB Prevention
Divisions of HIV/AIDS Prevention
HIV/AIDS Among US Women: Minority and Young Women at Continuing Risk
www.cdc.gov/hiv/pubs/facts/women.htm
The American Cancer Society
(1) The American Cancer Society Guidelines for Early Detection of Breast
Cancer
(2) ABCs of Breast Health: A Personal Plan of Action
(3) Cancer Facts for Women
Phone: 1 (800) ACS-2345
www.cancer.org
National Cancer Institute
(1) Cancer Information Service - Phone: 1 (800) 422-6237
(2) STAR (Study of Tamoxifen And Raloxifene) 1 (212) 263-3198
www.cancer.gov/cancer_information/
Avon Breast Care Fund
(1) Avon Breast Care Fund Newsletter, Winter 2001
www.avoncrusade.com
email: projectcoordinator@avonbreastcare.org
“Breast Cancer: The Complete Guide,” Yashar Hirshaut, M.D.,
F.A.C.P. and Peter I. Pressman, M.D., F.A.C.S.
Resource Organizations
Cancer Care
275 Seventh Avenue
New York, NY 10001
(212) 712-8080
(800) 813-HOPE (800) 813-4673
(212) 712-8400 Administration
(212) 712-8495 Fax
www.cancercare.org
Cancer Care is a national non-profit organization whose mission is to
provide free professional help to people with all cancers through counseling,
education, information and referral and direct financial assistance. Spanish
language service is available.
National Breast Cancer Foundation
http://www.nationalbreastcancer.org
Breast cancer news links, education, help for the underserved.
American Cancer Society (ACS)
(800) ACS-2345
http://www.cancer.org
Look Good…Feel Better program and Reach to Recovery peer support
program.
National Coalition for Cancer Survivorship (NCCS)
(877) 622-7937
http://www.cansearch.org
Survivorship issues and sources of assistance for patients and their families.
Y-ME National Breast Cancer Organization
Y-ME’s Wig and Prosthesis Bank
212 West Van Buren, 5th Floor
Chicago, IL 60607-3907
(800) 221-2141 (English)
(800) 986-9505 (Spanish)
http://www.y-me.org
Clinical Trials:
Participation in a clinical trial is another way of obtaining new forms
of therapy. People of all economic backgrounds join clinical trials. Some
clinical trials will cover healthcare and treatment costs, and offer payment.
Some do not. Health insurance does not always cover all patient costs
in a trial. Some public hospitals or research institutions may be willing
to pay for the treatment, regardless of your income or legal status. You
can find all of this out before joining the trial. Ask your doctor or
cancer specialist about clinical trials.
National Cancer Institute
Cancer Information Service (CIS)
31 Center Drive, MSC 2580
Bethesda, MD 20892-2580
(800) 4-CANCER (800) 422-6237
http://www.nci.nih.gov http://www.cancertrials.nci.nih.gov
CIS offers information on cancer in both Spanish and English. Receive
information on how to prevent cancer, where to get screened and how to
find a clinical trial. Spanish language service is available.
National Alliance of Breast Cancer Organizations (NABCO)
(888) 80-NABCO http://www.nabco.org
Information about risk assessment and counseling programs, as well as
current detection, treatment options and new research. NABCO also offers
fact sheets and regular publications and maintains a comprehensive website.
HopeLink Corporation
http://www.hopelink.com
The HopeLink Clinical Trial Service is free and confidential. Find trials
that support your cancer treatment, determine preliminary eligibility
online, and submit your information to those conducting the trials.
CenterWatch Clinical Trials Listing Service
http://www.centerwatch.com
All kinds of trials including breast cancer and HIV/AIDS.
NYU Cancer Institute’s Clinical Trials Office
550 First Avenue, PRR 812
New York, 10016
(212) 263-6485 http://www.nyuci.org
NYU Cancer Institute is conducting trials on many forms of cancer. There
are about 130 clinical trials available to patients at any one time.
Advocacy Organizations
National Breast Cancer Coalition (NBCC)
1707 L Street, NW, Suite 1060
Washington, DC 20036
(800) 622-2838
(202) 296-7477
(202) 265-6854 Fax
http://www.stopbreastcancer.org
Contact NBCC to join both national or local efforts to support legislation,
regulation and funding that benefits breast cancer patients, survivors
and women at risk.
AIDS Treatment Activists Coalition (ATAC)
ATAC’s “Save ADAP” Committee
http://www.atac.usa.org
Email: info@atac-usa.org
ATAC is open to anyone interested in HIV/AIDS treatment activism. Training
and educational sessions are scheduled several times a year. Activists
are also needed for ATAC’s “SAVE ADAP” Committee, an
adhoc group addressing the current crisis in many state AIDS Drug Assistance
Programs.
Additional Source:
Susan Love MD Breast Cancer Foundation
427 Carrillo Street
Santa Barbara, CA 93101
http://www.susanlovemd.com
Offers important treatment, resource and support information related to
breast cancer and other women’s health issues.
