Wednesday, May 13, 2015

Sandra Lee Smart Self Advocacy

Television chef, Sandra Lee, has discovered she has breast cancer. It is apparently quite aggressive because her doctors have informed her she is a "ticking time bomb" and she will be undergoing a bilateral mastectomy this week. Ms. Lee is in her forties. She insisted on getting screened for breast cancer which is smart. She does not have a family history, but that didn't stop her. Perhaps she knew that eighty percent of breast cancers are found in people without a family history.

By finding her tumor early, she has the best chance of fighting it. She will have the cancerous tissue removed, receive the therapy necessary to eradicate the remaining cells, and if all goes well, she has an over ninety percent chance of beating the disease if it has not spread to her other organs.

This is all common sense. If we can find a disease early and treat it why would we ever take that for granted? It is a question for the United States Task Force, a government sanctioned group that insists that women should not have their first mammogram until after the age of 50. Where would that leave Ms. Lee? If she is a ticking time bomb now, what would become of her in a few years when she is "allowed" to obtain screening?

In today's NY Times, Ms. Lee is said,

“Without early detection on my side, I could be telling a very different story,” she said. “Or not be here to tell it at all.”

The Times went on to report on the task force's two sided view:

Regular mammograms for women in their 40s can be controversial. In April, the United States Preventive Services Task Force, a government panel, suggested that while mammograms are most beneficial for women over 50, mammograms for women in the 40s can “reduce their risk of dying from breast cancer.”

 And yet, they continue the most dangerous message of all:
Still the task force’s draft regulations also stated that women “undergoing regular screening mammography are at risk for the diagnosis and treatment of noninvasive and invasive breast cancer that would otherwise not have become a threat.”

 This is one of the most misinformed statements of the century. There is no such thing as a breast cancer that would "not become a threat." How do they know which cancer cells choose to divide and duplicate and take over a woman's body and kill her? Who are they to make this decision for women?

I was first diagnosed in my thirties. My original tumor was partially DCIS, meaning it was in situ, or "non-invasive" as the Task Force likes to call it. However, the tumor broke through the duct and became invasive, very invasive with a triple negative pathology. Where would I be now if I had waited 12 more years before my first mammogram? I would not have been here. My second breast cancer was in the lobes and rapidly spread to my lymph nodes. This was only five and half years after my first cancer. Two aggressive cancers, both under the age of the Task Force's permitted age for screening.

At the No Surrender Breast Cancer Foundation, we go a step further. We believe in baseline screening before the age of forty. Screening that saved my life in my thirties should be available to everyone. And women in high risk groups, particularly women of African American descent, need to be screened as early as possible because they are at the greatest risk of the finding the most aggressive forms of breast cancer while still in their thirties.

Ms. Lee's long time companion is New York Governor, Andrew Cuomo. In the same NY Times article, he said,

“She had always been diligent about her exams, and thank God she had been diligent about her exams,” the governor said, adding, “If she waited until she was 50, this would be a very different situation.”

Mr. Cuomo, as a fellow Long Islander and breast cancer survivor, after you are done helping the lovely Ms. Lee through her ordeal, please help the women of your state and then, hopefully, the nation. Eliminate the US Task Force's guidelines any way you can. Please, look into our Before Forty Initiative to help us spread the word of the risk young women face for aggressive breast cancers. The No Surrender Breast Cancer Foundation has been fighting hard for a long time. We could use your help.

Ms. Lee, we are here for you. We can help you through each step of your journey. And, personally, as someone who has been there, I am here to tell you that you can get through this and you will get your life back.

For more information about our foundation: No Surrender Breast Cancer Foundation:

Breast Cancer 101:

The Before Forty Initiative:

Monday, February 9, 2015

Special Programming Note

WNYC and NPR present

To Air Nationally on
NPR’s Morning Edition and
 All Things Considered
During the Weeks of 
February 9 and March 23

Nationally, one in two men and one in three women will be diagnosed with the disease, and almost every American family is touched by the disease in some way. In the past, a cancer diagnosis was often kept a family secret with a grim prognosis. Now, thanks to advances in treatment, many people are "living cancer" - whether we're being treated ourselves, or helping a family member or friend.
During the weeks of February 9 and March 23, WNYC, the premiere public radio producer and broadcaster, and NPR will present “LIVING CANCER, a 10-story series that will examine the shifting science and economics of cancer treatment and the impact on individuals and families. New drug protocols offer hope for many, while remaining just out of reach for others. Research scientists are working to discover the root causes of cancer, but the disease process is often too complicated for simple explanations. And as more people survive for years after a cancer diagnosis, what originally was a medical crisis can often be managed as part of an everyday routine.  The radio series will explore these complex realities of cancer today.
“LIVING CANCER” will air on the NPR programs Morning Edition and All Things Considered, heard on public radio stations across the country. All stories from the series will be available at and following their broadcast premiere. A preview video may be viewed here:  In addition, WNYC’s nationally-distributed program On the Media will devote an entire episode to the history of cancer and the media, premiering on Friday, March 27.
The schedule of “LIVING CANCER” stories is as follows:
Week of February 9 

Advances in Immune Therapy of Cancer
Morning Edition; Monday, February 9
One of the hottest areas of cancer research is in “immunotherapy,” which involves harnessing the immune system to attack tumors. After decades of frustration, researchers think they’ve finally figured out how to do this. A new generation of drugs essentially disables the ability of cancer cells to hide from the immune system. NPR health correspondent and editor Rob Stein reports that the treatments are showing promise for a wide range of cancers, including skin cancer, kidney cancer and lung cancer.

Fighting For The Latest Treatment
All Things Considered; Monday, February 9
Kathy Liu is desperately trying to find a cure for her 10-year-old son Joey, who was diagnosed last year with late-stage kidney cancer. She’s petitioning the FDA and three major drug companies to gain access to new immunotherapy drugs, treatment she believes is their only hope. The drug was approved in September, but that hasn’t meant she can get it yet. Amanda Aronczyk of WNYC reports that Kathy Liu needs to decide how far she’ll go with current treatments — that barely work and are very toxic — to keep Joey alive until the “miracle” drug becomes available for kids.

What’s The Prognosis?
Morning Edition; February 10
“Doctor, how long do I have to live?” That question, and the answer — an estimated amount of time that a patient might have left — can define what a patient will and won’t do with their remaining time. But how accurate is the prognosis, and where does the data come from? And how can doctors and patients make that important question, and answer, less fraught? WNYC’s Amanda Aronczyk reports.

Pregnant With Cancer
All Things Considered; Tuesday, February 10
Last year, when WNYC health editor Mary Harris was 35, she was diagnosed with breast cancer. In the process of preparing for treatment, she also found out that she was pregnant. This story traces her journey through pregnancy, chemo, birth and the early infancy of her daughter, Stella. We follow her through the wrenching decisions she and her husband had to make from deciding whether or not to terminate the pregnancy, to the risks of undergoing chemo in the third trimester. Pregnancy in cancer is rare — estimated at 1 in 3,000 cancer cases. But it is also estimated to be growing, because more and more women are getting cancer screenings that mean a diagnosis comes early; and more and more women are putting off childbearing to their 30s or later.

Environmental Exposures and Cancer
Morning Edition; Wednesday, February 11
From 1959 to 1967, 20,000 pregnant women in California enrolled in the Child Health and Development Study and agreed to provide blood samples throughout their pregnancy and beyond. Now, some of those children are getting cancers. Researcher Barbara Cohn is looking back at the samples from pregnancy to see if she can find evidence of chemical exposures in the womb. She is also sending her data on to the first NIH funded exposome research center at Emory University, where they will test those samples for evidence of thousands of chemicals — a process made possible only with new technology. WNYC’s Paige Cowett reports.

Week of March 23 (specific airdates and times forthcoming)

Where are we with the War on Cancer?
Medical researchers have made only modest progress treating the most common cancers since the war on cancer was declared in 1971. A fundamental reason is that scientists are still struggling to make sense of the underlying biology. One noted scientist says understanding has seemingly come full circle... from mind-boggling complexity, to seeming simplicity, and back again to complexity. NPR’s science correspondent Richard Harris explores whether cancer research is in fact lost in an intellectual thicket.

Chronic Cancer
As many people live longer with cancer, the disease has become a chronic condition that’s manageable, but filled with regular treatments and a persistent underlying uncertainty. Dixie Josephson was diagnosed with stage 4 metastatic ovarian cancer 14 years ago. WNYC’s Paige Cowett follows Dixie and her family through her latest round of treatments.

Exceptional Responders
In a clinical trial for the immunotherapy drug, Sunitinib, most patients with aggressive kidney cancer failed to respond. But a handful of patients responded remarkably well. The New York Genome Center is collaborating with Memorial Sloan Kettering to do comprehensive gene sequencing, with the hopes of figuring out what these “exceptional responders” have in common, and what we can learn from them about treating cancer. WNYC’s Amanda Aronczyk reports.

Paying for Cancer
Melinda Townsend-Breslin knows more than anyone would want to about paying for cancer. When her mother was diagnosed with pancreatic cancer in 2013, her parents thought they’d be fine; they had what they considered “Cadillac” care. But the costs still added up, leaving her father with a stunning $500,000 bill when her mother died just eight months later. Melinda knows better than anyone that this shouldn’t happen: she’s a patient advocate in Louisville, Kentucky. She was able to negotiate their bills down to $125,000. But the experience left her with so many questions: why did her parents invest in “cancer insurance” so many years back, when it barely helped at all? How could her mother survive for just eight months and still have so many bills? WNYC’s Amanda Aroncyzk reports.

Early Trials
Today, children diagnosed with ALL, a common form of leukemia, have an 80%-90% chance of surviving if detected early. It is one of the most dramatic reversals in the history of cancer treatment: only a few decades ago, the survival rate was closer to 4%. In the 1960s, Pat Patchell and James Eversull were kids diagnosed with leukemia and both were part of the first cohort of patients to be taken off treatment, because they were responding so well.  They are now middle-aged men, 62 and 52 years of age respectively, and WNYC’s Amanda Aroncyzk checks in to see how life turned out for them, and examines how those early trials sent the precedent for cancer treatment as we know it today.

For more information, visit

Saturday, January 10, 2015


Thirteen and half years ago I was told I would not see beyond two years because I had the most aggressive form of breast cancer and after surgery, chemotherapy and radiation, there was nothing I could do about protecting myself for the future.

I read up on what the latest research was. There was not much. Back then, it was called estrogen and progesterone negative breast cancer. Now it has a fancy name, Triple Negative Breast Cancer, which means the same thing: It does not have receptors that are fueled by estrogen or progesterone and it is does not carry the protein Her2Nue. All that means is that there are not drugs to block the estrogen and it does not benefit from the breakthrough drug Herceptin.

I found that exercise, a low fat diet, flax seeds and vitamin D were my only allies. I also found many other women who were diagnosed with the disease. Many of whom are no longer alive. The Before Forty Initiative was started to help young women, especially in certain populations, to get early screening as the only defense against the disease.

The following report is the most promising thing I have yet to find. Researchers at Cambridge University have identified the TNBC gene. This is huge. This has the potential to make an often unmanageable disease into one that can actually be prevented.

This is what HOPE looks like. We are moving forward, at long last.

Breast cancer breakthrough as Cambridge University finds gene behind killer disease
Cambridge University and the Wellcome Trust’s Sanger Institute have discovered the gene responsible for triple negative breast cancer 

The gene BCL11A is likely to be behind triple negative breast cancer

By Sarah Knapton, Science Editor

Scientists have identified the gene behind one of most aggressive forms of breast cancer in a breakthrough which could bring life-saving new treatments.

Triple-negative breast cancer is one of the most deadly forms of the disease and nearly one quarter of patients diagnosed will not survive for more than five years.

Now researchers at Cambridge University and the Wellcome Trust’s Sanger Institute have found that the BCL11A gene is overactive in eight out of ten patients.


The study opens the door for therapies which suppress the gene and for screening that would pick up the risk early when women still had time to opt for life-saving mastectomies.

“Our gene studies in human cells clearly marked BCL11A as a driver for triple-negative breast cancers,” says Dr Walid Khaled of the University of Cambridge.

“We also showed that adding an active human BCL11A gene to human or mouse breast cells in the lab drove them to behave as cancer cells.

“As important, when we reduced the activity of BCL11A in three samples of human triple- negative breast cancer cells, they lost some characteristics of cancer cells and became less tumorigenic when tested in mice.

“So by increasing BCL11A activity we increase cancer-like behaviour; by reducing it, we reduce cancer-like behaviour.”

Around 10,000 people a year are diagnosed with triple-negative breast cancer. The disease does not respond to traditional breast cancer drugs like Herceptin and is one of the most aggressive types.
Just 77 per cent of people with triple-negative breast cancer will survive for five years, compared with 93 per cent for other types of the disease.

For the new study, researchers looked that the genetic profile of tumours from 3,000 patients, specifically searching for genes which affect how stem cells and tissues develop.
Higher activity of the BCL11A gene was found in approximately eight out of ten patients and was associated with a more advanced grade of tumour.

To test the theory that the gene was promoting tumour growth, scientists genetically engineered mice to have inactive copies. None of the animals went on to develop tumours in the mammary gland, whereas all untreated animals developed tumours.

“This exciting result identifies a novel breast cancer gene in some of the more difficult-to-treat cases,” said Professor Carlos Caldas, Director of the Cambridge Breast Cancer Research Unit at the University of Cambridge.

“It builds on our work to develop a comprehensive molecular understanding of breast cancer that will inform clinical decisions and treatment choices.

“Finding a novel gene that is active in cancer should also help in the search for new treatments.”
The breakthrough was welcomed by charities who said it could lead to new targeted treatments.
Dr Emma Smith, senior science information officer at Cancer Research UK, said: “Figuring out the genes that play a role in triple negative breast cancer could lead to new ways to tackle the disease so this study is a promising step forward.

“The next steps will be finding out if the gene plays the same role in causing breast cancer in women, and whether drugs can be developed to target the faulty molecules.
“Triple negative breast cancer can be challenging to treat, so research into the biology of the disease is vital to help scientists come up with new treatments.”

Dr Christopher Runchel, Research Officer at Breakthrough Breast Cancer added: “Whilst this investigation and the discovery of a new gene driver for triple negative breast cancer was mostly confined to cell lines and mice, this work could prove promising in the search for new ways to treat this form of the disease in the future

“Triple negative breast cancer is particularly aggressive and does not respond to hormonal therapies such as tamoxifen, or targeted drugs like Herceptin. That’s why the hunt for effective treatments is so important and Breakthrough Breast Cancer have long supported research like this.”
The research was published in the journal Nature Communications.

© Copyright of Telegraph Media Group Limited 2015

Saturday, August 30, 2014

Disease for Sale

Attention Cause Marketers: Unique Opportunity Available.
Are you looking for a disease to use to generate sales? 
Hit the ground running with a new social media campaign...
October is now available. 
And if you act now, we will give you pink- for free!

October can now be yours. For all the marketing, media and promotional campaigns who are seeking a disease to sell products, October is now open for a new, fresh approach. Pick a disease, any disease and support that instead. ALS is hot, hot, hot right now. Imagine an ice bucket challenge in chilly October? There are thousands of diseases to choose from.

Everyone is aware of breast cancer. Everyone. These "awareness" campaigns actually take away from true research (and other diseases) because all the money is being spent being "publicly aware." Slap a pink ribbon on and you have done your part. Declare you are all for Saving the Tatas and with a wink and a smile you are not only aware, but you are a little naughty.

It has finally culminated in the basest form of cause marketing. This very well could be the straw that broke the pink camel's back.

The Facebook challenge cashing in on breast cancer is asking women to go bra-less on October 13 to "Support Breast Cancer." 

Healthy women of all ages displaying their bra-less images on their Facebook profiles will  "help" women afflicted with breast cancer? That is why they will be doing it?

Or is it yet another calculated target at the narcissistic mania of featuring yourself on your Facebook page doing something "noble-looking" that all your friends can "like" and comment on? "You look gorgeous!" and "Great tits!" will fill  the comment section. The adoration will be lapped up and more and more images will appear. Ice buckets will be poured over bra-less women to turn it into a wet T-shirt contest. Wait for it, you will see it. Just how will that translate to ending breast cancer? It won't. If you want to show off your wet t-shirt selves, do it because you want to show off, don't pretend you are saving lives.

And, for those of you object to this new campaign, be prepared for some rather nasty blow back. The KJR 95.7 Facebook page, one of many promoting it, had some women speaking out on the insensitivity and stupidity of this campaign, now in its second year.

Sara K. objected to a bra-less day post by saying the following:

"This is disgusting. An illness that takes the lives of so many women shouldn't have to be noticed just because it was fit to please the male gaze. There is more to breast cancer than saving breasts, it's saving a HUMAN."

Here are a few of the thousands of replies, exactly as they appeared: 

From Denise R. 
 "Whatever, my grandmother has breast cancer, which means I am a slightly higher risk for cancer. I support this type of marketing because it gets us money. It gets the research done. Don't get your panties in a bunch. Stop feeling bad for people with cancer -- so because you have cancer, you shouldn't be around sex, or sex related material? My brother had brain cancer -- he loves to make jokes about it. STFU. Why are people so fucking serious??? So because you had cancer you stop being human? If you're so depressed to think about this as offensive, then get treatment. For depression. Fast."

From Anthony W.
"There is always one person like yourself that can always ruin fun for everyone else."

From Joseph D.
"Just zip it b!tch &; show me your tits!...your going 2 show them 2 somebody ! "why not " me?"

From Brandie N. 
 "Bras are a MAJOR factor causing breast cancer you daft bimbo. No woman should ever wear a bra!"

From Eben L.
"Lol here comes the term referred to as calm down by saying "calm your tits" ... Because in a sense it does raze awareness but obviously ppl like you have tunnel vision and only see the bad in everything. I feel sorry for morbid people like you though..."

From Alex W. 
"Feminist idiot!"

From Morgan B.

"I'm certain you've heard/read this any times in your life. Count me as one more...SHUT UP!"

Brave Dionna D. stepped in and said,

"Can't see why flaunting your healthy breast would help support any woman who has lost hers to cancer! Dumb idea!"

From Steve B.
"That's because you are a jealous idiot...."

From Nathan B.
"i support breast cancer...keeps down the population."

Yes. You read that correctly. You have heard from the public. These campaigns do nothing for breast cancer except bring out the worst in people. So if any other disease would like the spotlight this October, take it. It's yours. Let's see what they can come up with for other things that kill people.

And to add insult to injury, October 13th is also Metastatic Breast Cancer Awareness day. I am sure "Nathan B." celebrates that as well.

Tuesday, August 12, 2014

Act 3, Scene 1

(Disclaimer. This blog and the NSBCF is dedicated to fighting for our lives. We have an illness: cancer. This post is about another illness, an illness as real as cancer: depression. If you or someone you love is battling this disease, please reach out to someone or contact the suicide prevention hotline at: 1(800) 273-8255)


To be, or not to be--that is the question:
Whether 'tis nobler in the mind to suffer
The slings and arrows of outrageous fortune
Or to take arms against a sea of troubles
And by opposing end them. To die, to sleep--
No more--and by a sleep to say we end
The heartache, and the thousand natural shocks
That flesh is heir to. 'Tis a consummation
Devoutly to be wished. To die, to sleep--
To sleep--perchance to dream: ay, there's the rub,
For in that sleep of death what dreams may come
When we have shuffled off this mortal coil,
Must give us pause. There's the respect
That makes calamity of so long life.
For who would bear the whips and scorns of time,
Th' oppressor's wrong, the proud man's contumely
The pangs of despised love, the law's delay,
The insolence of office, and the spurns
That patient merit of th' unworthy takes,
When he himself might his quietus make
With a bare bodkin? Who would fardels bear,
To grunt and sweat under a weary life,
But that the dread of something after death,
The undiscovered country, from whose bourn
No traveller returns, puzzles the will,
And makes us rather bear those ills we have
Than fly to others that we know not of?
Thus conscience does make cowards of us all,
And thus the native hue of resolution
Is sicklied o'er with the pale cast of thought,
And enterprise of great pitch and moment
With this regard their currents turn awry
And lose the name of action.

Please take a moment and read Hamlet’s words as he contemplates ending his life. Shakespeare captured the tortuous moments a deeply depressed person goes through when there seems to be no end in sight.

Depression is a disease. It has some shame to it because it is “mental” and people in deep depression are often confronted with criticisms such as, “Why doesn’t he/she snap out of it?” or “He/she has everything! What do they have to be depressed about?”  Depression strikes no matter what you have going on in your life.  Over 600,000 people attempt suicide every year in the United States.

Brilliant, creative, imaginative people seem to be the most vulnerable to depression. There is something about the creative, sensitive psyche that makes you feel things more exquisitely. The same ability to have your heart race when you see an osprey overhead carrying a fish back to the nest, or to see a sunset that can move you to tears, makes you feel other things as well. Sadness. Loneliness. Despair.  You can have all the friends in the world and you can have a loving, wonderful family, but they cannot heal your spirit. Only you can do that. And it takes a lot of work.

Before you can heal, you must travel to a very, very dark place. It was perfectly described in “Ordinary People,” written by Judith Guest, and acted, with perfection, by Timothy Hutton. When young Conrad was asked what his depression was like that led to his suicide attempt, he opened up for the first time:

Conrad: “I don't know. It was like... falling into a hole. It keeps getting bigger and bigger and you can't escape. All of a sudden, it's inside... and you're the hole. You're trapped. And it's all over. Something like that. It's not really scary... except when you think back on it. 'Cause you know what you were feeling.”

His wise psychiatrist tells him later, “ Let me tell you something about feelings, Kiddo. They don’t always tickle.”

And so this leads me to Robin Williams. I keep hearing people saying, “He was so funny! How could this happen?” The person who opens their heart and makes everyone else feel good, doesn’t necessarily make himself feel better. In fact, it is a temporary tonic for them for the moment. And then they return to their lives and they are not laughing. Real life is not a stage. Real life does not include adoring fans. Real life for someone in a deep depression, who is trying to stay sober, who is facing money troubles, who has to maintain a happy face to the public, can be overwhelming. Sometimes it is just too much to be the strong, happy, brilliant, funny guy. And perhaps that is how Mr. Williams felt.

He did the only thing he felt he could do to stop the pain. It is tragic and sad. I personally loved Robin Williams. He was a genius in my mind. And geniuses fight the hardest battles.

When Christopher Reeve had his riding accident and had to get intensive therapy, Robin Williams, his roommate at Julliard, paid the expenses. He was a generous soul. He gave and gave of himself until there was nothing left to give in his mind.

In the spirit of his generous heart, if you know someone who may be suffering, reach out. It can be something as simple as, “If you ever want to have a cup of coffee or maybe just watch tv together, I would love to hang out with you.” And then, when you are together, just let them be. Don’t ask more of them than they can be. Don’t make them entertain you. Just be their friend. If you see warning signs: Lack of sleep, loss of appetite, overuse of alcohol or drugs, sleeping too much, or not caring about their appearance, seek help for them.

Suicide has been happening long before Shakespeare wrote about it so eloquently. Depression is now recognized as a legitimate disease. And people can recover from it. It takes work. And sometimes you have to feel worse before you feel better. But you can get better. So with that knowledge, if you need to hear it for yourself, believe it. Or if you need to know for a friend or someone else you love, let them know and help them find help.