Breast Investigators

As an Alopecian, the hardest part of hair loss for me is that I am assumed to be sick, or more specifically, to have cancer.  Not only don’t I have cancer, but beyond my immune system’s assault on my hair follicles, I am absolutely healthy.  Bummer?  Yes, but life goes on and I choose to move on with it.

A couple of years ago, I conducted a two-part survey exploring the emotional impacts of hair loss.  In addition to an Alopecia Survey, I conducted a separate Cancer Hair Loss Survey.  A whopping 461 women have taken the survey and there is much to be learned from them.  I learned that while the cause of our hair loss is different, we largely agree on the most difficult aspect of hair loss - the public perception that we are sick.  Yes, a cancer patient is fighting a disease, but it’s a disease that is otherwise invisible to anyone not peering at us with the aide of an MRI or CT scan.  Cancer patients desperately want to carry on with life as normal.  Hair loss strips women who are undergoing chemotherapy of their anonymity.  It’s like carrying a neon sign that flashes “I have cancer.”

When I look in the mirror, I am reminded that I have alopecia areata, a disease that causes me to lose my hair but does not threaten my life.  When a woman with chemo hair loss looks in the mirror, she’s reminded that she’s fighting for her life!  When others look at her with fear, pity, questions or comments regarding her status as a cancer patient, she’s reminded that she’s fighting for her life!  She doesn’t want reminders.  She wants to stop cancer from defining her, her life, and her family’s life.  Hair loss can get in the way of that, but it doesn’t have to.

Just because we are bald, we don’t have to look sick.  The trick is to redirect the eyes and attention from what we’re lacking to all that we have!!!  Colors, patterns, texture, eye-catching earrings, facial definition with make-up, fun fashion, a fit body, or a vibrant smile all show that we are and always will be more than our hair, more than a disease.

What strategies have you developed for redirecting their eyes from what you’re missing to what you’ve added?

Susan Beausang, 4women.com

I might be in the minority, but I am okay with Facebook’s decision to censor The Scar Project’s photos of topless women exposing the scars they’ve accumulated in their battles with breast cancer.  Here’s why:

1) Just because I have mastectomy scars and reconstructed breasts does not mean I want to see the scars and breasts of other women. I want the choice and can go The Scar Project’s website if I choose to view the photos;

2)  I’m a business owner serving women suffering from drastic appearance changes.  I understand that while my customers have some things in common, they are unique individuals.  I feel the need to be sensitive to ALL of them.  As a business owner, I understand why Facebook would have policies designed to minimize the number of users offended by Facebook content;

3)  I’m asking myself, should Facebook be expected to promote causes?

I am a supporter of The Scar Project.  I applaud David Jay’s work, his ability to capture our pain, and his willingness to use his talents to tell our story through amazing photographs.  I am aware that many, many, many women find healing and acceptance through his photos, but I am not one of them.  They make me uncomfortable and I suspect that there are other women who like me, have surrendered their breasts and gained scars in a determined effort to beat or cheat cancer, and who are not looking for photographic reminders.  We’re all different.  I applaud the project and I agree with Facebook’s policy to censor the photos and give we Facebook user’s the choice to see or not see photos of other women’s breasts, breastless chests, and scars.

Are you familiar with The Scar Project?  How do you feel about Facebook policies to censor The Scar Project’s photos on their Facebook page?

Susan Beausang, 4women.com

More and more studies are telling us that breast cancer screens lead to unnecessary treatment.  I think it all boils down to your focal point, population vs. individual.  Medical recommendations based upon population-level outcomes differ from those based upon individual outcomes.  The numbers tell us that the screening often does more damage than good.  According to the latest study in the news, one death from breast cancer is prevented for every 2,500 women screened, while 6-10 women are over-diagnosed, likely undergoing unnecessary, health-damaging treatments as a result.  With those numbers in mind, should we be pushing breast cancer screening to the degree we do?  Now imagine that one life saved by screening is your’s, your partner’s, your mother’s, or your daughter’s life.  Now how would you answer that question?

So long as our understanding of cancers is so inadequate, so long as breast cancer continues to prematurely end so many lives and maim so many women’s bodies, is over-diagnosis followed by life preferable to a missed diagnosis followed by the threat of death?  Who decides?  Individuals, doctors who treat individuals, researchers who study populations?  Researchers are individuals too,  presumably subject to the same odds of developing breast cancer and the same odds of over-diagnosis.

While I understand the position of those looking at breast cancer from afar, those researchers and statisticians trained to focus in on the numbers, I have a better understanding of the individual behind that number 1 in 2,500.  She is my mother, my sisters, and far too many of my friends.  Until that 1 in 2,500 is just a number, a number that very few of us can attach to an individual loved one, recommendations that we postpone and reduce screening will be hard to swallow.

If you haven’t been following such stories, here’s the latest: http://www.bbc.co.uk/news/health-17585735

What do you think about the many recent studies highlighting the inadequacy of current breast cancer screening methods and their associated recommendations to postpone and reduce the frequency of screening?

Susan Beausang, 4women.com

Not so fast Myriad Genetics.  Back to court with you so the judicial system can reconsider the decision to uphold your patents on OUR BRCA genes.  Good news for we BRCA mutation carriers, bad news for you.  Or is it?

Myriad’s stock rose 56 cents on Monday, following the Supreme Court ruling that their right to patent our genes needs to be reconsidered.  That’s after it had fallen a week ago following the news that the Supreme Court had ruled that Prometheus Laboratories was not eligible for a patent because its blood test merely reflects a law of nature. The ruling on the Prometheus Lab patent was clearly bad news for Myriad, so how is that a Supreme Court order to reconsider the decision to uphold Myriad’s own patents good news for Myriad stockholders?  I wondered the same thing.

Instead of hearing and ruling on the case, the Supreme Court opted to instead send it back to what the New York Times refers to as “the presumably more patent-friendly appellate court.”  There are those distinguishing between Prometheus’s efforts to patent a testing method, while Myriad seeks to maintain its patent on “stuff,” our genes that is.

Stockholders, lawyers, academics, the biotechnology industry, and humanity can place bets, but we’ll have to wait for the actual results before we truly know what, if anything, the Prometheus ruling means for Myriad’s gene patents.  Previously, Myriad also had patents on the process for testing for BRCA mutations that raise the risk of cancer, but the appeals court ruled those claims invalid.

I am grateful that Myriad, along with the University of Utah, a PUBLIC UNIVERSITY - presumably receiving public money, isolated the BRCA 1&2 genes, enabling individuals and families like mine to empower ourselves with specific knowledge regarding our genetic predisposition to breast and/or ovarian cancer.  I am bothered (to say the least) that Myriad Genetics, Inc. seems determined to maintain a monopoly control over my genes.

This news matters for ALL of us.  A common misconception is that only some of us have BRCA genes and an associated inherited predisposition to breast and/or ovarian cancer.  In fact, we ALL have BRCA genes, and when they’re not mutated, they play a protective role by preventing out-of-control cell division (ie. cancer).  For what I found to be further fabulous reading on the implications of gene patents for we lay-people with BRCA genes (mutated or not), go here, or check out: http://scienceblogs.com/geneticfuture/2010/03/jaw-dropping_verdict_against_m.php.

Are you following this story?  What do you think about the fact that profit-making corporations can patent your genes?

Susan Beausang, 4women.com

Cancer stuns us, often to the point it is hard to think straight, hard to turn off the thoughts, and especially hard to organize our thoughts (especially once the chemo fog rolls in).  Suddenly, we are thrust into the life of a cancer patient - facing tests, appointments, treatment, so much that is new to us, and all at once.  Last year, I was at my mother’s side at every step through her diagnosis and treatment for lymphoma, and I’m a lot wiser for the ware.  I learned some really useful organizational strategies that were life-saving (both literally and figuratively).  I learned what we needed and didn’t need to be fully prepared and thought I’d share my working list, in hopes we can help someone else skip the initial steep learning curve.  It’s all in the bag.

•  Tote bag - ideally with several compartments for organizing your supplies
•  Identification and insurance cards
•  Names, addresses, and phone numbers for referral physicians
•  List of herbs, supplements, medications you are currently taking
•  Notebook or tape recorder for recording medical instructions
•  Daily planner or chemotherapy calendar (Don’t forget pens!)
•  Small cooler or thermal snack pack
•  Book and/or magazines
•  Music - CD player, MP3 player, other
•  Ipad or laptop
•  Hand sanitizer
•  Healthy snacks such as nuts, seeds, fruit, energy bars, trail mix, yogurt
•  Water bottles with plenty of water, electrolytes, ginger tea
•  Ice cubes - sucking on them can prevent mouth sores
•  Warm socks or slippers
•  Small pillow and blanket
•  A friend or loved one

The first chemotherapy appointment can be an all-day affair, so be prepared.  It’s recommended that you eat normally on treatment days, avoiding only those foods that are typically hard to digest or less than nourishing (deep fried foods, excessive quantities of meat, junk foods).  It’s important to have a designated driver as some of the medications may make you drowsy, or you just may not be feeling so great.

For some great downloadable and printable resources, check out Guide2Chemo, where you can find  a guide to supportive yoga poses that can help relieve stress and anxiety during chemotherapy, a chemo calendar, a medical paperwork checklist, and more.

Take a deep breath.  It’s not nearly as bad as many people fear.  At age 89, mom sailed through her treatment, and I was honored to be there by her side.

Susan Beausang, President, 4Women.com

Supply and Resource Links:

http://www.4women.com/fabrics/beaubag

http://guide2chemo.com/healthy-tools

The dust has settled ever so slightly on the Komen-Planned Parenthood eruption.  It seems everyone and their cousin has weighed in on the issue.  Meanwhile, I’ve listened.  My overall perception and opinion of Komen hasn’t changed at all, but I think the depth of my understanding of has.

According to Karen Handel, the emails that Komen was getting in response to its announced decision to cut funding to Planned Parenthood were running 3 to 1 in support of the decision, and their online donations shot up 400 percent.  And yet they reversed the decision.  Her explanation symbolizes to me just where Komen is at - that point where either the organization learns to listen and chooses to evolve and change so as to reflect the women they claim to serve, or they go extinct.  Comparing Komen to Planned Parenthood, Handel is quoted as saying, “Komen doesn’t have the strength in the area of social media.”  Maybe it’s [past] time they play some catch-up.

While Komen sleeps, more and more of the women they claim to serve are waking up.  Waking up to the fact that breast cancer rates keep rising, waking up to the fact that detecting cancer is a far cry from curing (or better yet, preventing) cancer, waking up to the fact that breast cancer is big business and that Komen is one of the biggest bankers in the business, at times seeking to profit off the very products that raise breast cancer rates.  And I am just one of many, many, many on social media pointing this out.  But apparently Komen is either deaf, or just doesn’t want to hear.

And then of course there’s one other possibility, that Komen hears just fine and is listening carefully, just not to us, surely not to the low-income women served by Planned Parenthood.  After all, they appointed Karen Handell after she lost her run for Georgia governor on a campaign that touted her plan to eliminate state grants to Planned Parenthood.  Could they possibly not have known?

Susan Beausang, 4Women.com

(The following is a 4women guest blog from Liz Belilovskaya, of I Had Cancer.)

When you or someone you love is diagnosed with cancer, your natural reaction may be to want to find out as much as possible about the disease, from available treatment options, to likely side effects, to the day-to-day challenges of dealing with cancer.  Your search for answers will very likely lead you to the internet, where you will find a dizzying amount of information that instead of empowering you, could leave you feeling overwhelmed and helpless.  So what can you do about this?

You can become an “e-patient.”  The “e” stands for “empowered, engaged, equipped and enabled.”  Those wishing to take back control of their lives are proactive when it comes to cancer treatment.  They make it their priority to be as informed and involved as possible.  Of course, this is easier said than done.  How and where do you get information about cancer without getting overwhelmed by the Internet?

Patient social networks are providing solutions by building communities of people who have either had personal experience dealing with cancer or supporting someone through this disease.  They create an invaluable new source of life-changing information from existing resources and relevant personal experience - information that has the power to save lives.

Mailet Lopez, Survivor and Founder of I Had Cancer has an all too common story.  Diagnosed with breast cancer at age 33, she was preparing for her post-surgery treatment when she serendipitously encountered a stranger who told her of a new treatment option that her own doctors were unaware of.  After researching the information, Mailet decided to try the new treatment and in the end, it saved her life.

This is not uncommon.  Most patients are never informed of all their treatment options because no hospital offers all options.  From the patient perspective, the potential of social networking is unearthed when access to hard-to-come-by information is made available.  The more members sharing their knowledge and experiences, the more power every patient has to participate in and even lead their own cancer care.

Discussion threads on social networks illustrate how connecting people around shared experiences can be incredibly beneficial.  From survivorship identity issues to family relationships in the context of an illness, members can exchange experiences and regain control over their lives by engaging the support community.

One user put it this way:

“I live in a small town with no support group and my family is 800 miles away.   This [social support network] has provided me with a wonderful support group of men like me who have or had cancer and can tell me what to expect.  The unknown is the hardest part of facing any problem and this has helped me so much.”

Every patient can better engage in their own care by becoming an e-patient and tapping the knowledge and experience of others on social networks.

Liz Belilovskaya, I Had Cancer

I Had Cancer (www.ihadcancer.com) is a cancer support community that empowers its members through shared experiences by the most relevant sources, the patients.

Who would’ve thought Barbie could rise to the pinnacle of cancer politics?  And still climbing.  In a country in which approximately 12,400 children are diagnosed with cancer each year (and the number keeps climbing), I can see why the topic of childhood cancer could and would touch on raw emotions.  It’s taken me some reflecting though to grasp how a Bald Barbie doll can come to hold the torch for that emotional eruption, especially when she has yet to even exist.

Apparently someone (a man no less) at the American Cancer Society weighed in and so fueled the eruption that we late-comers cannot even view his contribution.  The ACS has withdrawn the post and the author has replaced it with what amounts to an apology.  The comments are still there, however, and judging by them, I get the sense that this now-banished post had a good deal to do with Bald Barbie’s rapid rise to the pinnacle of cancer politics.

One of those comments gets right to the heart of Bald Barbie’s rise, expressing what I imagine is the crux of the emotional eruption that put Miss Bald Barbie in her new political position:  “He does not know who he messed with,” a commenter named Mindy writes to the ACS blogger.  “An apology on their blog is not enough.  We won’t stop until there is equity in funding for childhood cancer, and this man has a new job!”

Childhood cancers are the leading cause of death by disease among children in the U.S., and yet only 3 percent of the National Cancer Institute’s research budget is allocated to childhood cancers (note the plurality of “cancers”).  I’ve experienced so much pain and loss in my family at the dreaded hands of cancer and yet I cannot for a minute imagine the pain of losing a child to cancer.  I can easily imagine though why the parents out there who have known this pain, known such loss, are looking for any means of waking the rest of us up to their pain and to the fact that there are way too many children getting cancer.  Apparently the NCI and the pharmaceutical companies have other priorities, so if Barbie can help them (help us) to raise the funds to fund the research to develop the means that would stop cancer from taking our children, I say “I’ll take 3!”

And for the other voices out there who say, wait!!!  This is about my child, not a  petroleum-based cancer-contributing plastic mold destined for a landfill, I get that too.  I want to know, WHY is cancer on the rise among our children? Mary Tyler Mom comes through crystal clear to me when she says, “Girls with cancer need a bald doll about as much as women with breast cancer need a pink Kitchen Aid mixer.” She has known the pain of watching her toddler daughter battle cancer, so I just have to honor her feelings too.

Cancer politics aside, and as an Alopecian, my first response to a Bald Barbie was and is, I want one!!!  I’m an advocate for anything and everything that helps women and girls to self-identify as normal, feminine, and beautiful, without hair.  Okay, so she’d lack hair and yet have an unattainable version of a feminine figure (not to mention long, lush eyelashes any Alopecian would die for), but hey, I’ll take a socially evolved Barbie in small steps.

Have you been paying attention to Bald Barbie’s pre-existence rise to fame?  Are you pro-Bald Barbie, or con-Bald Barbie?  Why?

Susan Beausang, 4women.com

Could hair tests someday provide a viable alternative to mammograms?  An Australian research consortium is exploring the possibility after discovering that hair from women with breast cancer had a different cell structure to hair from women without the disease.

The technology being tested is a synchrotron particle accelerator, an x-ray machine that bombards hair strands (rather than our breasts) with x-rays.  The pattern produced by the x-rays is described as a series of arcs, while in people with breast cancer a distinctive ring is superimposed on top of the arcs.

It turns out that the first published study reporting this promising technology was back in 1999, in the journal Nature.  Unfortunately, other researchers were unable to reproduce  the results and so the work continued.  Since then, the original authors have determined that other researchers were unable to reproduce their results either because they were using hair damaged by dyes or other chemicals, or because hairs were either stretched or wrongly aligned under the beam.

An especially interesting finding in that original study was that all the hair samples from women who tested positive for a mutation of the BRCA1 gene, showed the same hair changes as those with breast cancer.

Some might be inclined to dismiss such research as pie-in-the-sky thinking, but my guess is that this is no more pie-in-the-sky than dreaming the breast cancer vaccine. I’ll happily eat my pie in the sky!  Have you ever heard about this promising test?

Susan Beausang, 4Women.com