“My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman.

Only a fraction of breast cancers result from an inherited gene mutation. Those with a defect in BRCA1 have a 65 percent risk of getting it, on average.

Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could. I made a decision to have a preventive double mastectomy. I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex.”  NYTIMES 5/14/13

In an article entitled My Medical Choice, Ms Jolie explained that her mother fought cancer for nearly a decade and died at the age of 56.

Family history of breast cancer

She said she had sought to reassure her children that the same illness would not take her away from them, “but the truth is I carry a ‘faulty’ gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer”.

She said that once she “knew that this was my reality”, she had taken the decision to undergo the nine weeks of complex surgery required to have a double mastectomy, followed by reconstruction of the breasts with implants.

“There have been many advances in this procedure in the last few years, and the results can be beautiful,” she wrote.

Her chances of developing breast cancer have now dropped from 87% to under 5%, she said.

She praised her partner, Brad Pitt, for his love and support throughout the procedure, and said she was reassured that her children had found nothing in the results “that makes them uncomfortable”.

“I feel empowered that I made a strong choice that in no way diminishes my femininity,” she said.

“For any woman reading this, I hope it helps you to know you have options,” Ms Jolie went on to say.

“I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices.”

Emma Parlons: “If somebody said your flight was 86% likely to come down, you wouldn’t get on that plane”

The award-winning actress and director is also a long-time supporter of humanitarian causes. She is currently a special envoy for the UN Refugee Agency.

During the period she was undergoing the double mastectomy procedure, Ms Jolie visited the Democratic Republic of Congo with UK Foreign Secretary William Hague and attended the G8 summit of foreign ministers in London to raise awareness over sexual violence in conflict.

She also helped launch a charity to fund girls’ education set up by the Pakistani schoolgirl activist Malala Yousafzai, who survived being shot by the Taliban last October.

Ms Jolie has three biological children and three adopted children.

•     About one in five women diagnosed with breast cancer will have a significant family history of the disease
•     Having close family members – first-degree relatives like a sister, mother, aunt or uncle – with breast cancer raises a woman’s own risk of the disease
•     Certain genes such as BRCA1 and BRCA2 are strongly linked with breast cancer and can be detected with genetic tests
•     Women carrying the BRCA1 mutation have up to a 65% chance of developing breast cancer by the time they are 70
•     Fewer than 1% of women are at high risk of developing breast cancer
•     Another 2% of women deemed to be at moderate risk might also benefit from taking preventive breast cancer drugs for five years, say experts

“On May 12, 2009, the ACLU and the Public Patent Foundation (PUBPAT) filed a lawsuit charging that patents on two human genes associated with breast and ovarian cancer, BRCA1 and BRCA2, are unconstitutional and invalid. On November 30, 2012, the Supreme Court agreed to hear argument on the patentability of human genes. The Court will hear these arguments on April 15, 2013.”

Link to ACLU Whether human genes can be patented.  Association for Molecular Pathology v. Myriad Genetics

The lawsuit, Association for Molecular Pathology, et al. v. U.S. Patent and Trademark Office, et al., was filed on behalf of researchers, genetic counselors, women patients, cancer survivors, breast cancer and women’s health groups, and scientific associations representing 150,000 geneticists, pathologists, and laboratory professionals. The lawsuit was filed against the U.S. Patent and Trademark Office, as well as Myriad Genetics and the University of Utah Research Foundation, which hold the patents on the genes, BRCA1 and BRCA2. The lawsuit charges that patents on human genes violate the First Amendment and patent law because genes are “products of nature” and therefore can’t be patented.

Most women with ovarian cancer receive inadequate care and miss out on treatments that could add a year or more to their lives, a new study has found.

Ann Johansson for The New York Times

Dr. Robert E. Bristow is the lead author of a new study.

The results highlight what many experts say is a neglected problem: widespread, persistent flaws in the care of women with this disease, which kills 15,000 a year in the United States. About 22,000 new cases are diagnosed annually, most of them discovered at an advanced stage and needing aggressive treatment. Worldwide, there are about 200,000 new cases a year.

Cancer specialists around the country say the main reason for the poor care is that most women are treated by doctors and hospitals that see few cases of the disease and lack expertise in the complex surgery and chemotherapy that can prolong life.

“If we could just make sure that women get to the people who are trained to take care of them, the impact would be much greater than that of any new chemotherapy drug or biological agent,” said Dr. Robert E. Bristow, the director of gynecologic oncology at the University of California, Irvine, and lead author of the new study presented on Monday at a meeting of the Society of Gynecologic Oncology in Los Angeles.

The study found that only a little more than a third of patients received the best possible care, confirming a troubling pattern that other studies have also documented.

Karen Mason, 61, from Pitman, N.J., had been a nurse for 28 years when she was found to have ovarian cancer in 2001. She scheduled surgery with her gynecologist, who was not a cancer surgeon.

But her sisters would not allow it. They had gone on the Internet, and became convinced — rightly, according to experts — that she should go to a major cancer center.

“They took the reins out of my hands,” Ms. Mason said.

She wound up having a long, complicated and successful operation performed by a gynecologic oncologist, which she does not believe her gynecologist could have done.

Dr. Barbara A. Goff, a professor of gynecologic oncology at the University of Washington, in Seattle, who was not part of Dr. Bristow’s study, said the problem with ovarian cancer care was clear: “We’re not making the most use of things that we know work well.”

What works best is meticulous, extensive surgery and aggressive chemotherapy. Ovarian cancer spreads inside the abdomen, and studies have shown that survival improves if women have surgery called debulking, to remove all visible traces of the disease. Taking out as much cancer as possible gives the drugs a better chance of killing whatever is left. The surgery may involve removing the spleen, parts of the intestine, stomach and other organs, as well as the reproductive system.

The operations should be done by gynecologic oncologists, said Dr. Deborah Armstrong of Johns Hopkins University, who is not a surgeon. But many women, she said, are operated on by general surgeons and gynecologists.

Some women prefer the obstetricians who delivered their children. Many are desperate to start treatment and think there is no time to find a specialist. Some do not know that gynecologic oncologists exist. Some inexperienced doctors may find the cancer unexpectedly during surgery and try to remove it, but not do a thorough job.

“If this was breast cancer, and two-thirds of women were not getting guideline care that improves survival, you know what kind of hue and cry there would be,” said Dr. Armstrong, who was not involved in the study. But in ovarian cancer, she said: “There’s not as big an advocacy community. The women are a little older, sicker and less prone to be activists.”

One patient advocacy group, the Ovarian Cancer National Alliance, ranks the availability of a gynecologic oncologist as one of its criteria in comparing the quality of care among states.

Surgeons who lack expertise in ovarian cancer should refer women to specialists if the women are suspected to have the disease, but often do not, Dr. Goff said.

Dr. Bristow’s research, which has been submitted to a medical journal but not yet published, was based on the medical records of 13,321 women with ovarian cancer diagnosed from 1999 to 2006 in California. They had the most common type, called epithelial. Only 37 percent received treatment that adhered to guidelines set by the National Comprehensive Cancer Network, an alliance of 21 major cancer centers with expert panels that analyze research and recommend treatments. The guidelines for ovarian cancer specify surgical procedures and chemotherapy, depending on the stage of the disease.

Surgeons who operated on 10 or more women a year for ovarian cancer, and hospitals that treated 20 or more a year, were more likely to stick to the guidelines, the study found. And their patients lived longer. Among women with advanced disease — the stage at which ovarian cancer is usually first found — 35 percent survived at least five years if their care met the guidelines, compared with 25 percent of those whose care fell short.

But most of the women in the study, more than 80 percent, were treated by what the researchers called “low-volume” providers — surgeons with 10 or fewer cases a year, and hospitals with 20 or fewer.

Dr. Bristow said women should ask surgeons how often they operate on women with ovarian cancer and how often they achieve complete debulking. But he also acknowledged that many patients hesitate to ask for fear of offending the doctor who may operate on them.

Ovarian cancer has unusual traits that make it more treatable than some other cancers. It is less likely to spread through the bloodstream and lymph system to distant organs like the lungs and brain. The tumors do spread, but usually within the abdomen and pelvis, where they tend to coat other organs but not eat into them and destroy them, said Dr. Matthew A. Powell, a gynecologic oncologist and associate professor at Washington University School of Medicine in St. Louis.

And most ovarian cancers are extremely sensitive to chemotherapy, experts said.

In 2006, a study was published that many doctors thought would change the field forever. It compared standard intravenous chemotherapy with a regimen that pumped the drugs directly into the abdomen. The test regimen was highly toxic, and not all patients could tolerate it. But median survival on it was 65.6 months, compared with 49.7 months on the standard treatment — a survival difference of 15.9 months.

The gain was huge, almost unheard of. New cancer drugs are often approved if they buy patients just a few months. The test treatment — called intraperitoneal, or IP therapy — did not even use new drugs. It just gave the old ones in a different way. Several previous studies had had similar findings for IP therapy, but the 2006 study, led by Dr. Armstrong, had the most definitive results.

The National Cancer Institute took a rare step, one it reserves for major advances. It issued a “clinical announcement” to encourage doctors to use the IP treatment, and to urge patients to ask about it. Cancer specialists predicted that the announcement would lead to widespread changes in treatment. Expert guidelines said it should be offered to every patient considered strong enough to endure it.

Seven years later, Dr. Armstrong and other physicians said, IP therapy still has not caught on.

Part of the reason may involve money, Dr. Armstrong said. With IP chemotherapy, patients also need a lot of intravenous fluids, which means unusually long treatment sessions. Oncologists are paid for treatments, not for time, so for those in private practice, long sessions can eat away at income.

“You don’t make a lot of money with somebody in the chair getting IV fluids,” Dr. Armstrong said. “Chair time is money. I’m being a cynic here, but I think that is part of the issue.”

Dr. Goff said: “Where I live, in the Pacific Northwest, IP chemotherapy is pretty much only being done in the major medical centers, and by very few private-practice oncologists. Many say it’s too difficult, and they don’t even offer it to patients, which I think is unethical.”

Ms. Mason had six hours of surgery at the Fox Chase Cancer Center in Philadelphia, with a gynecologic oncologist. The cancer had spread to lymph nodes, and was Stage 3. The surgeon removed her ovaries, fallopian tubes, various lymph nodes, uterus, cervix and omentum (part of the tissue that lines the inside of the abdomen).

“Ovarian cancer looks like Rice Krispies all over the place,” Ms. Mason said. “She spent most of the time picking out each little visible Rice Krispy, and left nothing behind that she could see with her naked eye.”

Then, Ms. Mason had chemotherapy (not IP, because it was not being done at the time). The disease has not recurred. Had she stuck with the first doctor, she believes, “I would be gone.”

“I feel so strongly about letting women know that you need to get to a center of excellence,” Ms. Mason said. “It’s shocking to think it’s still not happening.”

Attribution New York Times Published: March 11, 2013 Denise Grady Link to full article at the top of this post.

Note:  Cancer Fairy Godmother does not usually post entire articles, but under the circumstances, the information on this is so critical, we felt it important to offer the entire piece as a way of spreading this.  We feel that this is fair use, as this site derives no profit, but is published as a vital information recourse.  If in any way this violates the NY Times TOS, please contact the site admin at info@cancerfairygodmother.com, thank you.

I was six years old when my mom was diagnosed with breast cancer. But my mom is one of the lucky ones, and she survived after undergoing a mastectomy — a procedure that removes one or both breasts — when she was just 36 years old.

Even though she’s been cancer free for over 21 years, my mom still struggles to find bras for women missing a breast that are not only comfortable and attractive, but affordable. I’ve been a Victoria’s Secret customer for years, and I know they’re outspoken supporters of women with breast cancer.

Now I’m asking them to act on their word by making a “Survivor Bra” for women who have lost one or both of their breasts due to cancer. I started a petition on Change.org asking Victoria’s Secret to be a leader for survivors of breast cancer by making a bra that is comfortable for women who have had mastectomies.Click here to sign my petition.

My mom is amazing. Even when she was going through exhausting chemotherapy — all while raising me — she never complained. Now, after years of being cancer free, my mom still has to drive to an expensive specialty store just to find bras and swimsuits that fit.

Cancer survivors, especially women who have had a mastectomy, often struggle with their image and self-confidence. With thousands of stores located across the country and online, Victoria’s Secret could provide breast cancer survivors everywhere with access to better bras.

Victoria’s Secret’s parent company has publicly said that “breast cancer is an issue close to many of us.” I believe that with your signature, they will do the right thing and become a leader in helping women with breast cancer feel beautiful again after a mastectomy. They’ve responded to public pressure like this before, and now you can help get them to respond again.

Click here now to sign my petition asking Victoria’s Secret to make a “Survivor Bra” for survivors of breast cancer.

Thank you for your support!

Allana Maiden
Richmond, Virginia

The Supreme Court has spoken, and I want to tell you what it means to me as a cancer survivor.

I’m not afraid to admit that I was opposed to the Affordable Care Act, what some people refer to as Obamacare, when it passed.

But there was something that concerned me more, and that was having no insurance at all. Because in the minds of the health insurance companies, I’m not a cancer survivor — I’m someone who had the audacity to survive cancer. And the consequence of survival was that they refused to insure me. I own a small business and work hard, so I need to buy my own health care.

However, I did qualify for a new program included in the health care law — the Pre-Existing Condition Insurance Program (PCIP). It was designed for people like me and maybe for someone like you or someone you care about who are cancer survivors and aren’t able to get insurance coverage due to a pre-existing condition like cancer.

When I went to the hospital in March with a life-threatening bacterial infection, I was admitted to the intensive care unit, where I spent five days recovering. Without PCIP, I would not have been placed in intensive care and, quite simply, I would have died.

And that brings me to today’s decision by the U.S. Supreme Court.

I almost cried when I heard the Supreme Court had upheld the law. These were not tears of sadness, but tears of relief. I won’t be losing my insurance coverage. I know that if I get sick again, it won’t mean possibly losing everything I have, including my life. And I know there are millions of cancer survivors like me who feel the same way.

Yes, the law was controversial. And it’s a shame it became so partisan. But there is one thing I know for sure — we can never go back to how it was before the Affordable Care Act was passed.

Cancer survivors cannot again be left to just hoping we won’t get sick. Bankruptcy and a greater likelihood of death shouldn’t be accepted as the outcome of a serious illness.

Despite my early concerns and reservations, I believe in the importance of this law. I believe in its crucial protections for cancer patients and cancer survivors. It protected me. And for those like me, it saved our lives.

Thank you ACS CAN for fighting for the parts of the law that saved my life.

Sincerely,

Kathy Watson
Cancer Survivor – Lake City, FL

American Cancer Society Cancer Action Network http://bit.ly/MYowHY

I have just changed the header for the site to reflect a new attitude of joy and hope.  I have been in the weeds with an eye opening new project that has consumed my time over the last few months, partnering with a brilliant social media marketing guy Brent Campbell of A Hundred Miles and Hour .

He and I have been working on a project that at the start I found unsettling, but as I did deep research and intel on the subject matter, became very eye opening and has changed my attitude towards the legal profession and lawyers in general.  Brent and I (under the ‘A Hundred Miles and Hour’ brand) has been busy creating some really cool informational, educational websites about finding ways to help people with cancer and other life threatening conditions.  I will start to post some screen shots and links in a few days, but for now i am jumping into the Cancer Fairy Godmother Site to change the banner to something fresh and lite for spring.

It has been a long winter up here in what I call Ice Planet Hoth, which is what the Ski Country of Southern Vermont has been like this winter.

Namsaste

~ K

Image ©ShutterStock

The insanity of the GOP Republican Party + Evangelical Right Agenda against Women continues.

Shame on you Susan G. Komen Foundation ~ Planned Parenthood is a critical safety net for women across America and with so many of the middle class falling between the cracks into poverty, the role of Planned Parenthood in more important than ever.

…but apparently those women no longer matter as Komen’s support has now been withdrawn. Last month, the national office of the Komen Foundation, which maintains tight control over its state affiliates, sent a memo barring those affiliates from using money they had raised at the local level to partner with Planned Parenthood clinics in improving access to breast exams.

Why? Not science, not evidence, not concern for women.

Politics and personal ambition, pure and simple.

It’s no secret that anti-choice legislators at the state and national level have made Planned Parenthood the central focus of their anti-woman agenda, spending well over half of entire legislative sessions in some states focused on cutting funding and limiting access to reproductive health services.  At the national level, the ongoing witch hunt aimed at PPFA has taken many forms, one of which includes a “Congressional inquiry” launched by House Energy and Commerce Oversight and Investigations Chairman Cliff Stearns (R-Fla.).  Stearns sent a letter to PPFA in late September 2011 asking for an avalanche of documents to “investigate” whether PPFA has used federal funds to provide abortion services.

The Cancerous Politics and Ideology of the Susan G. Komen Foundation ~ Jodi Jacobson

75% critical of Susan Komen for the Cure, Only 25% support decision to sever ties with Planned Parenthood.

Updated Links:

Critiques of Pink Culture and Industry; A Survivors Point of View

By defunding Planned Parenthood, the Susan G Komen Foundation betrays women ~ Lizz Winstead

Older Links (earlier today 2/2/12)

Komen Split With Planned Parenthood Draws Fire Online

Top Susan G. Komen Official Resigned Over Planned Parenthood Cave-In

Who Is Behind Susan G. Komen’s Split From Planned Parenthood?

This isn’t about fiscal responsibility. This is about harassment and intimidation of America’s leading provider and advocate of women’s health. Stand with Planned Parenthood now: fill out the form to send Rep. Stearns a letter telling him to stop this politically motivated investigation.

Three Important PR Lessons From This Week’s Komen, Sierra Club Scandals

1-800-422-6237 The National Cancer Institute Help Line

The cancer line fields a wide variety of queries, including what to expect after different diagnoses; what to ask doctors; where to get help with financial, legal, and transportation problems that might interfere with treatment; the benefits and side effects of different treatment options; and what clinical trials are available for different diagnoses.

Callers are encouraged to share as many details as possible about the exact type and stage of their cancer, so that the staff can tailor the information they provide. “But if they don’t know this, we can help them formulate questions they can take to their doctor,” says Mary Anne Bright, a former oncology nurse who directs the program. “We will spend as much time with somebody as they need.”

Unlike many other toll-free help lines, “we’re not a pharmaceutical company, and we’re not collecting donations,” Bright adds. “We’re all about reporting the most accurate and up-to-date information about cancer and the results of research in a way that people can understand.”

If you or a loved one has recently been diagnosed with cancer, consider calling the National Cancer Institute’s Cancer Information Service at 1-800-422-6237. You’ll find The operators can tell you about their personal cancer stories, answer your questions, help you find financial help for medical bills, put you in touch with medical specialists and local support groups, direct you toward clinical trials, and more. It’s a valuable, but underutilized service that everyone should be aware of. (Side note: Yes, this is actually useful medical information that appeared on the Huffington Post. Written by an actual medical scientist. It’s a Festivus miracle!)

Found Via BoingBoing  Maggie Koerth-Baker

Via Huffington Post Erin N. Marcus, M.D.

Via New America Media 

“After reviewing the available studies,” she continued, “it is clear that women who take Avastin for metastatic breast cancer risk potentially life-threatening side effects without proof that the use of Avastin will provide a benefit, in terms of delay in tumor growth, that would justify those risks. Nor is there evidence that use of Avastin will help them live longer or improve their quality of life.”

Medicare, which covers many women with breast cancer, has already said it would continue to cover the cost no matter what the F.D.A. decided. Medicare is obligated to pay for off-label use of cancer drugs that are listed in references known as compendia, such as the one published by the National Comprehensive Cancer Network, an organization of major cancer hospitals.

An initial clinical trial showed that Avastin, when combined with the drug paclitaxel, which is also known by the brand name Taxol, delayed the progression of disease by about five and a half months, compared to use of paclitaxel alone. However, the women who received Avastin in the study did not live significantly longer and they suffered more side effects.

Based on that data, the F.D.A.’s cancer drug advisory committee voted 5 to 4 against approval in December 2007. But two months later, the agency granted provisional approval.

In subsequent studies, in which Avastin was combined with different chemotherapy drugs, tumor growth was delayed by only one to three months. And Avastin did not prolong lives at all, nor did it improve quality of life.

In July 2010, the F.D.A.’s cancer drug advisory committee recommended 12 to 1 that the approval be revoked. The F.D.A. itself moved to do that in December of that year.

F.D.A. Revokes Approval of Avastin as Breast Cancer Drug

By ANDREW POLLACK

Published: November 18, 2011

With National Breast Cancer Month (October) upon us (http://www.nbcam.org/), we want to throw our support behind some great organizations that are helping those patients, survivors, families and others that have been affected by this disease.

This Shoot Out photo contest is intended, mirroring the goal of NBCAM, to increase awareness of the disease and to raise funds for research into its cause, prevention, diagnosis, treatment and cure.

Enter your images that promote breast cancer awareness and/or celebrate the beauty, strength, spirit and nurture threatened by the disease. Enter your images that tell a story of inspiration, of strength, of survival. Enter your images that are touching, humorous, sensual, perceptive… real.

We want to really make a splash. We’ve got lofty goals for this contest and would love to see the total raised getOVER $100,000. To do this, WE NEED YOUR HELP! We need everyone to get the word out… share this onFacebook, Twitter, via email. Tell your friends, your neighbors, your clients, your kids’ friends… everyone.

The ‘starting pot’ will be $100 in total, but we want to see a truly inspiring number here. So help us get these numbers growing! Help us demonstrate the power of images to help raise awareness and money to make a difference!

We’ll be updating the prizing as the entries come in, so check back… and enter as often as you can! You’re supporting a great cause!

JPG Magazine Contest 10-11-11