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.

Fundraiser 85%, Breast Cancer Charity 15%

Rarely do I use this site as a bully pulpit. However, in this post  I am making an exception and writing about a fundraiser.

fundraiserI recently received a telephone call from a woman who identified herself as a professional fundraiser conducting a campaign for a breast cancer charity located in the far west U.S. She launched into a canned speech, speaking about the plight of women diagnosed with breast cancer and asking me if I was willing to help them by making a donation. When she paused, I identified myself a a 2x survivor and shared that all my breast cancer donations went to the charity I founded, No Boobs About It. She responded by saying that I should consider diversifying my funding by making a donation to the charity she was calling about!

I suggested that if she wanted me to donate, she should tell me more about the organization she was fundraising for,  and how donations raised through her efforts would be used to help women with breast cancer. That’s when things got fuzzy. It became obvious she was speaking from a script and had limited knowledge of the organization or its mission.

I then asked her the question I  ask every professional fundraiser who calls me asking for a donation…what percentage of the money you raise for the organization goes to the organization and what do you or your firm keep from this telephone campaign? She responded, “The organization will get 15% of the money I raise.” I responded by saying that our call was over and ended our conversation.  At first, since I did not recognized the organization she claimed to represent, I checked the charity out. It does exist. I then called the charity to check out if my caller might simply using the charity’s name to commit fraud.

The person I spoke to, at the charity, confirmed they had a telephone campaign going on. When I shared what had transpired in my conversation with the fundraiser she responded. “Do you want me to take you off the call list for future campaigns?”I expressed my anger at how the fundraiser had conducted herself, but most importantly I shared how shocked I was to hear what the fundraiser was earning from donors who had no idea how little of their gift would actually benefit women with breast cancer.

When breast cancer organizations retain professional fundraisers to raise money through telephone campaigns and agree to a split that gives the fundraiser 85% of the donation and the breast cancer organization 15% of the donation, I take offense. Putting it in real numbers- for every $1 donation, 85 cents goes to the outside professional fundraiser and 15 cents goes to the the breast cancer charity.

During the 35 years I worked in the nonprofit sector, I helped to raise money for the organizations I worked for as a program director or an executive director. I am  familiar with the need that some organizations have for outside help with their fundraising. However, most organizations pay fundraising firms a flat fee for their service, they do not give them a percentage of what they raise. Percentage compensation is frowned upon by professional fundraising membership associations.

What most offends me is the bait and switch approach to fundraising. Everyone knows someone who has been touched by breast cancer. You answer a phone, a fundraiser pitches you the need to support this very worthwhile breast cancer organization, and many of us might be willing to agree to the $10, or $15, request. However, the fundraiser doesn’t share that when you donate, she, or her firm will get the lion’s share of your donation.

The next time you get a request for a donation ask the person on the other end of the line  if he or she is a staff member, volunteer, or board member of the charity. If  the person identifies themselves as a fundraiser,  ask how much of  the donation you might make will go to the charity. Once you have this information, you can decide whether or not you wish to contribute to the telephone campaign.

Reputable breast cancer organizations need support in meeting the needs of those with the disease. Fundraising campaigns that give the fundraiser significantly more than what they give the charity’s mission do all of us a disservice; they generate bad feelings in donors who were led to believe they would be making a meaningful contribution in support of a breast cancer service.

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Why No Reconstruction?

reconstruction

She entered my hospital room looking like a woman on a mission. Without so much as identifying herself or saying good morning, she asked in a demanding tone, “ Why no reconstruction?”

Her uniform and I.D. identified her as a nurse.

I was still on a morphine drip following my bilateral mastectomy the day before and not at my sharpest. Since she hadn’t bothered with any pleasantries such as “how are you”, I decided to return the compliment and give her a brief response, the only one she was going to get from me. “I didn’t get reconstruction, because I didn’t want reconstruction.”

She stared at me in disbelief, saying, “You mean you were told that you had the right to reconstruction, your insurance would cover it, and you didn’t choose to have reconstruction?”

I stared back and responded, “Reconstruction is a choice not a required part of a breast cancer treatment plan.”

With that she left the room.

After she left, I was of two minds. First, I was glad the staff were concerned that every woman having a breast or breasts removed would have been told beforehand that they had the right to reconstruction;  they would also be informed that Medicare, Medicaid and most private insurance companies covered the cost of reconstruction.

My second thought… were women, facing breast cancer surgery, being given all the information they needed about the pros and cons of reconstruction to handle their expectations about the process realistically, and to make educated, informed choices?

Throughout the day, I was to have several other staff ask me about my choice not to have reconstruction. They were not rude, as was my first visitor. They got me thinking about the thought process I went through in making my decision about reconstruction.

Having spent years as an American Cancer Society Patient Navigator, I had seen reconstruction successes and reconstruction problems in the patients I met with in the hospitals. I was well aware of the benefits of reconstruction. I was also aware that, if I had reconstruction, my new breasts would have no sensation, there would be scars, and there would be more than one surgery involved to complete the process.

During the years between my surgeries, I played out the “what if”: scenario. What if my cancer came back and I needed a mastectomy or bilateral mastectomy? What would I do?

I reviewed my feeling about my breasts, and what they meant to me. I had the advantage of time to rehearse my decision. Most women have to make the choice about reconstruction soon after hearing they have breast cancer. They make this decision while also having to make dozens of decisions that affect their treatment.

Some of the things I considered before making my decision included:

From a physical standpoint: My general health status, previous surgeries, healing time, additional surgeries to complete the process, potential complications, satisfaction with outcomes…general appearance, lack of feeling in breasts.

From an emotional standpoint: What did my breasts mean to me? I never considered my breasts one of my defining features. They were attractive, but not outstanding. They served the purpose they were intended for…nursing, and that was a long time ago.

I didn’t need breasts to feel attractive or feminine. I was in a committed relationship, with or without reconstruction.

From a practical standpoint:I knew I didn’t need my breasts to look good in clothes. I had been wearing a partial prosthesis since my first breast cancer. A lumpectomy and radiation necessitated using a partial prosthesis to balance my breast in clothes. I spent 10 years between cancers getting annual screenings with all the stress that goes with it. There were a few scares, false alarms that required additional tests and in some instances, biopsies. I wanted cancer behind me. I wanted the least amount surgical down time and the fastest healing time so I could get on with my life.

All things considered, I came to the conclusion that I didn’t need or want reconstruction.When faced with the actual situation of a second primary that required a bilateral mastectomy, my choice was clear…no reconstruction.

The point of my sharing this post…in the end, it is all about choices.

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Essential Tips for Helping Children Handle Grief

grief

A New HBO documentary explores this often taboo topic in

ONE LAST HUG: THREE DAYS AT GRIEF CAMP on April 14th

By Lauren Schneider

In the United States, about 4.8 million children under the age of 18 are grieving the death of a parent. Others have faced the death of friends, grandparents, aunts, uncles and cousins. Grieving children experience a range of emotions including sadness, anger, fear, loneliness and guilt. They often feel isolated from their non-bereaved peers and are reluctant to share their grief with surviving family members for fear of upsetting them.

On April 14th at 8pm, HBO is premiering ONE LAST HUG: THREE DAYS AT GRIEF CAMP which highlights the work of professional counselors and volunteers at Camp Erin, a three-day program that encourages grieving children ranging in age from 6 to 17 to share their feelings and memories of loved ones who have died with their peers. ONE LAST HUG addresses struggles children face when someone close dies and breaks down the barriers related to one of the world’s most taboo topics.

Children may experience severe emotional distress which some families are ill-equipped to address. With a dramatically altered family structure, the needs of children are often overlooked. For these children, unresolved grief can result in a chain of negative outcomes, such as difficulty concentrating and academic failure, criminal and anti-social behavior, and mental health problems, including anxiety, sleep deprivation, depression, alcoholism and even suicide. Compounding the problem is the fact that four out of five of these children will receive no mental health services.

At Camp Erin, the isolation that grieving children experience is relieved as they quickly connect with similarly bereaved peers. They recognize, as they share their thoughts and feelings, that others feel the same way. At camp, children also learn that they can have fun without feeling guilty. Outdoor and art activities are designed to build self-esteem and create new memories.

Campers participate in remembrance ceremonies that help them both honor their loved one and maintain the loving connection. Lastly, kids are taught coping strategies to utilize long after camp ends.

A simple fact of life is that grief will touch just about everyone at some point. The subject still remains taboo for many families, but it really doesn’t have to be the big elephant in the room. Whether it’s a child in your family or a friend of your child’s, it is important to know how to support that child in actions, language and emotions.

Here are a few suggested way to support the grieving children in your life:

  1. Be truthful about the cause of death – Children need to be told in age-appropriate increments because they will eventually find out the truth. Respond honestly to any questions they raise.
  2. Use plain direct language – Euphemisms can be confusing to children. Explain that when someone dies their body stops working and we’ll never see them alive again.
  3. Children look to you as a role model – Explain that your tears are because you miss the loved one too, but you are strong enough to support them and it is not their job to support you.    
  4. Help them find ways to honor the person who died and hold onto their precious memories.
  5. Include children in mourning and ongoing rituals to help them maintain the bond they shared before the death.
  6. Teach them coping strategies – while each person will grieve in their own unique way, they can learn to comfort themselves in healthy ways.
  7. Children fear that you or someone else will die – Identify who will love and care for them if you aren’t able.

 

If you are interested in a Camp Erin near your city, please visit www.moyerfoundation.org.

About Lauren Schneider

Lauren Schneider, LCSW, is Clinical Director of Child and Adolescent Programs at OUR HOUSE Grief Support Center. A nationally recognized authority on children’s grief, Lauren has provided trainings for mental health clinicians, educators, clergy, health care providers and graduate students throughout the community since 2000.  Lauren is the author of “Children Grieve Too: A Handbook for Parents of Grieving Children”.  She also created “My Memory Book…for grieving children” as well as grief related curriculum for use at Camp Erin Los Angeles and in OUR HOUSE grief support groups.  Lauren is the Associate Producer of “One Last Hug: Three Days at Grief Camp,” an HBO documentary about children’s grief.  She trains and supervises OUR HOUSE group leaders as well as MSW and MFT clinicians and students.  Lauren maintains a private practice in Los Angeles specializing in grief and loss.

 

THREE DAYS AT GRIEF CAMP debuts MONDAY, APRIL 14 (8:00-8:40 p.m. ET/PT), exclusively on HBO.

It will also be available On Demand and on HBOGo.com.

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Fertility Drugs and Breast Cancer Risk

Press Release April 3, 2014: To interview Louise Brinton, contact the NCI Press Office at ncipressofficers@mail.nih.gov or 301-496-6641301-496-6641. For other inquiries, contact Jeremy Moore at jeremy.moore@aacr.org or 215-446-7109215-446-7109.

breast cancerPHILADELPHIA -Women who took clomiphene citrate (brand name Clomid) orgonadotropins as a part of fertility treatment did not experience an increased risk for breast cancer over 30 years of follow-up, compared with women who were not treated with these medications, according to a study published in Cancer Epidemiology, Biomarkers & Preventio(http://cebp.aacrjournals.org/), a journal of the American Association for Cancer Research.

“We wanted to evaluate the long-term relationship of fertility medications and breast cancer risk after controlling for other factors that have been shown to be correlated with both breast cancer risk and use of those drugs,” said Louise A. Brinton, Ph.D., M.P.H. (http://irp.nih.gov/pi/louise-brinton), chief of the Hormonal and Reproductive Epidemiology Branch at the National Cancer Institute (http://www.cancer.gov/) (NCI) in Bethesda, Md. “Overall, our data show that use of fertility drugs does not increase breast cancer risk in this population of women, which is reassuring.”

An elevated risk for invasive breast cancer was observed for a small number of women who were exposed to 12 or more cycles of clomiphene, who had a little more than 1.5 times the risk of women in the study who never took fertility drugs.Women who were unable to become pregnant after taking gonadotropins and clomiphene citrate had nearly twice the risk of women in the study who never took either medication.

“The observed increase in risk for these small subsets of women may be related to persistent infertility rather than an effect of the medications,” said Brinton. “Nevertheless, these findings stress the importance of continued monitoring of women who are exposed to fertility drugs.”

Under current practices, clomiphene is usually limited to three to six cycles at doses up to 100 mg, which is far lower than in the past, including patients in this study who were prescribed doses up to 250 mg, oftentimes for many years, explained Brinton. “Given the high doses of drugs received by our study participants and the lack of large increases in breast cancer risk many years after exposure, women previously exposed to such drugs should be reassured by these findings,” said Brinton. “However, the women in our study who developed breast cancer were on average only 53 years old, which is still young in terms of when we usually expect breast cancers to develop.”

“This cohort of women should continue to be monitored as they progress into a typical breast cancer age range; in addition, data are needed to assess the long-term effects of fertility drugs given in current practice, such as those used in conjunction with IVF,” added Brinton.

This study was conducted using data from a cohort of more than 12,000 women evaluated for infertility between 1965 and 1988 at five different locations in the United States that retained detailed records of infertility evaluations and treatments. These patients were followed until 2010, and 9,892 were eligible for this study. Among them, 749 women developed breast cancer. The researchers were able to obtain medical documentation for 696 of these, and 536 were validated as having invasive breast cancers.

This study was funded by the NCI. Brinton declares no conflicts of interest.

# # #

Follow the AACR on Twitter: @AACR (http://twitter.com/AACR)

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 About the American Association for Cancer Research

Founded in 1907, the American Association for Cancer Research (AACR) is the world’s oldest and largest professional organization dedicated to advancing cancer research and its mission to prevent and cure cancer. AACR membership includes more than 34,000 laboratory, translational, and clinical researchers; population scientists; other health care professionals; and cancer advocates residing in more than 90 countries. The AACR marshals the full spectrum of expertise of the cancer community to accelerate progress in the prevention, biology, diagnosis, and treatment of cancer by annually convening more than 20 conferences and educational workshops, the largest of which is the AACR Annual Meeting with more than 18,000 attendees.

In addition, the AACR publishes eight peer-reviewed scientific journals and a magazine for cancer survivors, patients, and their caregivers. The AACR funds meritorious research directly as well as in cooperation with numerous cancer organizations. As the Scientific Partner of Stand Up To Cancer, the AACR provides expert peer review, grants administration, and scientific oversight of team science and individual grants in cancer research that have the potential for near-term patient benefit. The AACR actively communicates with legislators and policymakers about the value of cancer research and related biomedical science in saving lives from cancer. For more information about the AACR, visit www.AACR.org.

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The Widening Gap Between Black Women and White Women Survival Rates

Where you receive breast cancer care matters; so does when you seek care for breast cancer. These two factors play an important role in the widening gap between the rates of survival in black women and white women.

I read the following recent study, which supports the premise that access to good, affordable care is a critical factor to survival, as is when a woman seeks care. The study was published online March 4, 2014 in Cancer Epidemiology. 

breast cancerIn US cities, over the past 20 years, breast cancer death rates are down in higher numbers for white women than for black women. The study looked at the possible causes for these disparities in survival. Researchers reported that during 1990-1994, the rate of breast cancer deaths was 17% greater among blacks than among whites. This steadily increased to 30%, then to 35% and finally to 40% in the last time period they looked at.

Previous research demonstrated that racial survival differences could be attributed to other health problems that worsen breast cancer outcomes and are more common among black women. Another contributor to the racial disparities is the fact that black women are more likely than white women to have aggressive breast tumors that don’t respond as well to treatments.

 Bijou Hunt, an epidemiologist at Mount Sinai Hospital in Chicago led the study, which assessed changes in survival trends on a national level. She and her research colleagues looked at mortality rates in the 21largest U.S. cities over a 20 year span. She and her research team pointed out that the growing gap in breast cancer deaths among black women versus white women was caused by a steeper drop in breast cancer deaths among white women than among black women.

The research team stated in their report that increased screening and treatment options among white women, and lack of access to and lower quality of screening and treatment among black women seem to be the main reasons for the disparities in survival.

Comments on Study: What the study does not address is that lack of awareness about breast cancer also impacts on when women seek care.

 My years as a navigator, meeting with women of color with late stage breast cancers, has convinced me of the need for neighborhood-based breast cancer awareness programs. NBAI ‘s local mission, in NYC, is to bring breast cancer awareness programs to senior centers, post secondary schools and  other places where women gather in neighborhoods of color, and link women, in these neighborhoods, to screening programs and treatment providers.

 Medicaid and Medicare make treatment affordable for the poor and those who are 65+ and the Affordable Care Act is supposed to make health care affordable and accessible for the working poor and others who are uninsured. However, without awareness about breast cancer, women, whatever their color, are not going to seek care in the early stages of breast cancer. They will wait until there is pain or other physical symptoms of the disease before they present for care. Their disease will be harder to treat and their survival threatened by late stage disease.

There is no substitute for education!

 

 

SOURCE: Cancer Epidemiology 2014.

 

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