No Boobs About It, Inc., www.noboobsaboutit.org is a not for profit organization sharing information , resources and support on getting through treatment and on with life.

Survivorship…Permission …New Beginnings

permission

As another cancer anniversary comes around, I find I am taking inventory of what I have given myself permission to do since my first primary cancer and my second primary cancer 10 years later.

First and foremost, I’ve learned that going back to life as it was before breast cancer was not an option. Finding a new beginning was critical to my getting on with my life as a survivor. Permission was and continues to be the key to each new beginning I have chosen since my first cancer, almost 16 years ago.

I owe my survival, not once, but twice, to mammograms that found my breast cancers before they could be felt in comprehensive breast exams, before they required chemo, and before they spread beyond my breasts.

In 1999, my annual mammography showed something suspicious. My path report confirmed a Stage 1, estrogen-positive, early cancer. In addition to the lumpectomy, I had 36 radiation treatments and took Tamoxifen daily for five years to prevent a recurrence.

The hardest part of my first breast cancer was managing my fears and not allowing them to rob me of getting on with my life. I joined a support group. I came to realize that besides the love of friends and family, the only commodity that matters to me is time; not money, not recognition, or how I look, just time and how I use it. I began building on this awareness to identify how I wanted to spend my time both personally and professionally. I began to give my self permission to do the things I had been putting off.

Initially, I gave myself permission to leave my full-time position as director of a nonprofit health care organization. I was terrified to give up the security of full time employment and health insurance and take a chance on myself. I took a part-time position as a grant writer, which gave me the time and the income to try my hand at something I always wanted to do- write for publication. With every rejection notice, I had, once again, to give myself permission to stick with my new beginning. My first published article led to many more.

A few years after my treatment ended, I gave myself permission to have a relationship. It was hard. Getting past my self-consciousness about changes in my body image from surgery, radiation and weight gain from hormonal therapy was very difficult. Eleven years later, we are still together. His support continues to make my new beginnings easier.

When another new beginning was presented to me, I gave myself permission to get out from behind my computer, and the safety of a writing business, to get back into direct service once again. My four years as a navigator for the American Cancer Society put me in direct touch with thousands of persons seeking treatment for cancer  in NYC’s public hospitals. What I learned about the needs of most women and a few men who presented with breast cancer became the basis for what NBAI now offers …a neighborhood approach to breast cancer awareness in NYC.  By bringing awareness about breast cancer risks to senior centers, post-secondary schools, and community organizations NBAI hopes to reduce the numbers of persons waiting to seek care until their cancers are advanced, their treatment needs extensive, and their prognosis poor.

The longer I was breast cancer free, the better I thought my chances were that my breast cancer experience was behind me forever. Then, in September of 2009, ten years after the cancer in my right breast, another routine mammography discovered a lump in my left.

The cancer in my left breast was a Stage 1, early cancer. I didn’t have a recurrence; I had a brand new cancer, unrelated to my first.

I wanted my breasts off. I didn’t want another lumpectomy, radiation and annual mammograms that had to be followed up with needle aspirations and surgical biopsies to check out something suspicious.

So I did it. In 2009 I got a double mastectomy. Breast cancer was easier the second time around.

As a result of second cancer, I started, No Boobs About It, (NBAI) that began as a blog site. Today, it is a nonprofit organization that focuses on raising awareness of breast cancer in the communities of New York City. The weekly blog continues to bring information on research, new treatments and practical suggestions for  getting through treatment and  successfully transitioning from active treatment to survivorship. Theses days the NBAI website averages over 30,000 +visits per month from persons in 37 countries.

It is hard to believe it has been almost 16 years since my first breast cancer and five years since my second. Breast cancer’s lesson was and continues to be about permission to do life my way.

 

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A Screening Program Success Story

screeningWhen navigating in NYC hospitals, I met many women who were uninsured or under-insured and did not meet Medicaid eligibility requirements. They needed breast and cervical screenings, but could not afford the out of pocket costs associated with these screenings.

It was always a relief to be able to refer them to a program that could give them the screenings they needed -The National Breast and Cervical Cancer Early Detection Program. This CDC initiative, which funds state and local providers to provide breast and cervical screenings, has brought these screenings to the neighborhoods and maked them accessible to women in need. I am pleased to share this news release, issued by the CDC, that speaks to the success of this screening program.

 U.S. Centers for Disease Control and Prevention, news release, Aug. 6, 2014: Millions of underserved women in the US have benefited from CDC’s breast and cervical screening program,The National Breast and Cervical Cancer Early Detection Program.

More than 4.3 million women with limited access to health care received breast and cervical cancer screening and diagnostic services in the first 20 years of the CDC’s National Breast and Cervical Cancer Early Detection Program (NBCCEDP).

From 1991 to 2011, 56,662 breast cancer, 3,206 cervical cancers, and 152,470 precancerous cervical lesions were detected. More than 90 percent of these women received appropriate and timely follow-up care, according to the CDC report published online and appears in the Aug. 15, 2014, supplement edition of Cancer.

“Today, millions of women have benefited from the timely screening and diagnostic services offered by CDC’s National Breast and Cervical Cancer Early Detection Program,” said Ursula E. Bauer, Ph.D., M.P.H., director, CDC’s National Center for Chronic Disease Prevention and Health Promotion. “This program has made tremendous contributions in public health through strengthening partnerships, health care collaborations, and quality of care, but also at a personal level by serving women directly.”

The Cancer supplement, titled National Breast and Cervical Cancer Early Detection Program: Two Decades of Service to Underserved Women, contains 13 new papers evaluating multiple aspects of the NBCCEDP and shows consistent value in the program, including beyond its original purpose of detecting cancers in underserved women.

The papers describe the number of actual cancers detected, outreach, education, and health care collaboration activities.  Data quality, evaluation, cost estimates, and suggestions for future programming are also noted. This is the first time detailed information has been published describing the program’s screening activities– and strategies beyond screening– used to reach underserved populations.  Also included are state examples of successful interventions.

Among the findings:

  • Public education and outreach help raise awareness and address barriers to care.
  • One of the uses for data reported to CDC is quality assurance, which monitors the quality of services provided by the NBCCEDP-funded programs. This monitoring can help identify issues with the services, determine the causes of the issues, and check whether these issues were corrected.
  • The estimated cost of providing cancer screening and diagnostic services through the NBCCEDP was $145 per woman. Cost estimates can be useful in future program planning.
  • Performance management and program effectiveness strategized improved service delivery through use of data, strong quality indicators, and investment in the program to ensure women are receiving timely screening, diagnostic follow up, and referral to treatment when needed.
  • Partnerships at national and local levels with national organizations and their members, community-based organizations, government agencies, tribes, healthcare systems, and professional organizations have played a critical role in achieving NBCCEDP goals.
  • The NBCCEDP has made tremendous contributions to breast and cervical cancer screening for Alaska Native/American Indian women and strengthened local tribal screening capacity.

The papers show how the NBCCEDP can support health care systems, especially as access to health care improves for millions of people through the Affordable Care Act. These partnerships can support the use of appropriate and high-quality breast and cervical cancer screening through broader use of organized approaches to screening and increase population-level screening.

The NBCCEDP was established by Congress in 1990 to provide quality breast and cervical cancer screening and diagnostic services to low-income, uninsured women. Over 24 years, the program has established strong capacity with the clinical care system to become the only nationwide cancer screening program serving all 50 states, the District of Columbia, five U.S. territories, and 11 tribes or tribal organizations.

For the online articles, go to http://onlinelibrary.wiley.com/doi/10.1002/cncr.v120.S16/issuetoc. To find out more about the NBCCEDP, visit http://www.cdc.gov/cancer/nbccedp/.

 

 

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Whose Awareness are We Trying to Raise?

awareness

In a little over a month pink things will emerge in stores and shops, in catalogs and on TV shopping networks in the name of breast cancer awareness.

The rationale for the Pinking of October…raise awareness about breast cancer by engaging the public in supporting breast cancer research and services.

Question: How does the  purchasing  and wearing of pink promotional items, for one month, make us aware of our own personal breast cancer risk? When you buy pink items, how much of what you pay for these items actually goes to breast cancer awareness activities, research, or services? It’s a question worth asking.

I am all for events, run by reputable organizations, to raise money for breast cancer research and to raise awareness along the way. Once again, before you sign up for that walk or run or any kind of a fund raising event, find out how much of the money raised goes to breast cancer research or services. Ask, when called, how much of your donation will go to the organization and how much goes to the fundraising company conducting the telephone campaign.

I guess I have one big question…whose awareness are we trying to raise?

If, like me, you have had breast cancer, or are living with metastatic breast cancer you don’t need to be made aware, you already have all the awareness you need. If you are currently going through active treatment for breast cancer, then you are at the height of your awareness.

If you are a friend, family member, spouse, significant other, parent, or child of a survivor, if you have lost someone to this disease or are a person living with breast cancer as a chronic disease, you know, first hand, the toll this disease takes on the person with breast cancer and their loved ones.

Yes, that still leaves a lot of people who need to know about breast cancer.

It leaves people who live in communities where English is a second language and TV and radio and newspapers are in languages other than English. They don’t hear or see awareness messages because they don’t listen to English TV or radio and there are few breast cancer awareness messages in their primary languages. This has to change. Far too many women and men, seen in public hospitals, present with advanced breast cancers because they don’t know the first thing about breast cancer. They are horrified when they hear what treatments lay in store.

Solutions:

  • Funding for breast cancer awareness ads for TV, radio and newspapers for non-English speakers.

  • Develop grassroots campaigns that train volunteers (preferably survivors) who speak the language of  residents, understand the culture and customs of the communities and can educate women and men through church and community organizations .

Another area in need of awareness…what are the needs of women now living with breast cancer as a chronic disease?  How can we support women who have metastatic breast cancer, a cancer that has spread to distant organs, for whom cure is not an operative word, for whom ongoing treatments can and do prolong life, often for years. How can we contribute to their quality of life?

Suggestions:

  • Be Aware that little of the monies raised for breast cancer go to metastatic breast cancer research. While breast cancer research is key to a cure, there are women living with this disease who need support and resources and services in the here and now.
  • Find out from the breast cancer organizations you support with your time and donations what they are doing to to support women with metastatic disease. If they are not providing services for women with metastatic disease, advocate for them doing so.
  • On a more personal level, if you know someone with metastatic disease, don’t shy away, call and suggest getting out together for some fun time, if he or she is up to it, if not, visit.
  • Helping with something that needs doing…babysitting, if there are young children, running errands, being the driver to appointments, being a chemo buddy and providing company in the infusion room.

awareness

This October, I will  give breast cancer awareness seminars in NYC in memory of friends who died from this disease, former classmates and colleagues and two cousins.   I will continue to celebrate life with  friends living with metastatic disease.

When October is over and the pink ribbons and promotions are put away for another year, please don’t put away the need for ongoing breast cancer awareness. Continue to reach out to members of your family and your circle of friends and be that voice encouraging those who keep putting off mammograms to get them. Offer to go to the doctor’s with the friend who puts off checking out that small lump that she is sure will be nothing.

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Lumpectomy Reconstruction…the Reconstruction Less Mentioned

lumpectomy

Fifteen years ago, when I had my first breast cancer, I was not aware I had reconstruction options.

Recent research turned up the following information, which may be helpful to those of you who may not know you can correct defects in your radiated breast that often become more obvious a few years after radiation.

Reconstruction may be performed soon after the lumpectomy if the surgical margins are clear of tumor and the excision is large enough to cause a significant defect after radiation changes are complete. Patients may choose to postpone reconstruction until after they complete all of their treatment.

Radiation changes can and do often occur over the course of three years. So, a lumpectomy defect that is small and initially acceptable is likely to change over time and may create an undesirable deformity. The options for correcting a lumpectomy include utilizing flaps, which are made of local skin and fat, or by using tissue from the abdomen.

Lumpectomy defects are generally treated based on the size and location of the contour defect. Small to moderate-sized defects can be reconstructed using a procedure known as fat grafting. Fat is liposuctioned from one part of the patient’s body, purified and then injected into the breast to fill the contour defect caused by the lumpectomy. This is a particularly good option for small contour defects less than 25% of the overall breast size.

More than one fat grafting procedure may be required for best results. The likelihood of needing multiple fat grafting procedures increases as the size of the defect increases.

 If a significant portion of the breast was removed by the lumpectomy, some women may be better served by a “completion mastectomy” and immediate reconstruction.

 

Sources:

www.breastrestoration.org – Dr. Spiegel

www.prma-enhance.com – Dr. Chrysopoulo

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The Breast Cancer Road Less Traveled

Many of us travel a similar road once diagnosed with breast cancer…surgery, chemo, radiation and all that goes with it. Eventually we reach the end of active treatment.  For some of us the road has a different course… more aggressive  treatment, harder choices to make and active treatment that continues indefinitely.

For women diagnosed with rare and very aggressive cancers, women who test positive for the BRCA1 or BRCA2 genetic mutation, women diagnosed with breast cancer while pregnant and women whose first diagnosis is metastatic breast cancer, the  road is long and sometimes unending.

road of IBCWomen diagnosed with Paget’s Disease of the Nipple, Inflammatory Breast Cancer, and Triple Negative Breast Cancer may share some similar treatments as the rest of us, but the course of treatment may be longer, more aggressive and require closer follow-up after completing active treatment.

When a woman tests positive for for either BRCA 1 or BRCA2 genetic mutation, her treatment road necessitates making choices that include having both breasts removed and her ovaries. If she has children, she has to  decide how and when to tell them about her situation and encourage them to get tested to see if they are caring the gene mutation.

For women diagnosed with breast cancer during pregnancy, the treatment road means choices such as terminating an early pregnancy; beginning  treatment immediately; carrying the child to term before beginning treatment; choosing to have treatment while pregnant if her medical care team feels it is safe to do so.

A pregnant woman with breast cancer lives with the fear of harming  her unborn child if she has treatment while pregnant, or chooses to be induced and give birth earlier than her expected due date.

For women whose first diagnosis is metastatic breast cancer (breast cancer that has traveled beyond the breast to distant organs such as the lungs and bone), their road is breast cancer as a chronic disease with ongoing treatment, not just to prolong life but to provide a quality of life.

All of us who go through breast cancer need support, but women in these  circumstances especially need the help and support of others who are going through exactly what they are going through.

While it may be unrealistic to expect to find support groups locally for each of these “road less traveled” circumstances,  the Internet is a great resource for locating support sites and others living and coping with these situations.

The following sites offer up to date information. Some have message boards, others share stories of hope and practical suggestions for getting through the rough spots.

Paget’s Disease of the Nipple -  www.breastcare.com/common_clinical_pagets.htm

Inflammatory Breast Cancer – The IBC Network Foundation theibcnetwork.org and IBC Foundation www.eraseibc.com/ibc.html

BRCA1 and BRCA2 – ww5.komen.org/BreastCancer/InheritedGeneticMutations.html

Triple Negative Breast Cancer Foundation -  www.tnbcfoundation.org

Her2 Support Group – www.her2support.org

Hope for Two – www.pregnantwithcancer.org

 

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