Angelina Jolie had a preventive double mastectomy

Monday, May 27, 2013

In this morning's NY Times,May 14th , Angelina Jolie writes about her decision to have a preventive double mastectomy to hopefully ward off cancer.
My mother fought cancer for almost a decade and died at 56. She held out long enough to meet the first of her grandchildren and to hold them in her arms. But my other children will never have the chance to know her and experience how loving and gracious she was.
We often speak of "Mommy's mommy," and I find myself trying to explain the illness that took her away from us. They have asked if the same could happen to me. I have always told them not to worry, but the truth is I carry a "faulty" gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer.
It happens that just last night I read about the BRCA-1 gene in Siddhartha Mukhergee's excellent biography of cancer, The Emperor of All Maladies. This part is right near the end of the book:
Like cancer prevention, cancer screening will also be reinvigorated by the molecular understanding of cancer. Indeed, it has already been. The discovery of the BRCA genes for breast cancer epitomizes the integration of cancer screening and cancer genetics. In the mid-1990s, building on the prior decade's advances, researchers isolated two related genes, BRCA-1 and BRCA-2, that vastly increase the risk of developing breast cancer. A woman with an inherited mutation in BRCA-1 has a 50 to 80 percent chance of developing breast cancer in her lifetime (the gene also increases the risk for ovarian cancer), about three to five times the normal risk. Today, testing for this gene mutation has been integrated into prevention efforts. Women found positive for a mutation in the two genes are screened more intensively using more sensitive imaging techniques such as breast MRI. Women with BRCA mutations might choose to take the drug tamoxifen to prevent breast cancer, a strategy shown effective in clinical trials. Or, perhaps most radically, women with BRCA mutations might choose a prophylactic mastectomy of both breasts and ovaries before cancer develops, another strategy that dramatically decreases the chances of developing breast cancer.
Radical is an understatement...what a tough and brave decision to make. Again from the book, I liked this woman's take on it:
An Israeli woman with a BRCA-1 mutation who chose this strategy after developing cancer in one breast told me that at least part of her choice was symbolic. "I am rejecting cancer from my body," she said. "My breasts had become no more to me than a site for my cancer. They were of no more use to me. They harmed my body, my survival. I went to the surgeon and asked him to remove them."
The genetic testing company 23andme screens for three common types of mutation in the BRCA1 or BRCA2 genes:
Five to 10 percent of breast cancers occur in women with a genetic predisposition for the disease, usually due to mutations in either the BRCA1 or BRCA2 genes. These mutations greatly increase not only the risk for breast cancer in women, but also the risk for ovarian cancer in women as well as prostate and breast cancer among men. Hundreds of cancer-associated BRCA1 and BRCA2 mutations have been documented, but three specific BRCA mutations are worthy of note because they are responsible for a substantial fraction of hereditary breast cancers and ovarian cancers among women with Ashkenazi Jewish ancestry. The three mutations have also been found in individuals not known to have Ashkenazi Jewish ancestry, but such cases are rare.

Update: Two things. First, and I hope this isn't actually necessary because you are all intelligent people who can read things and make up your own minds, but let me just state for the official record that you should never never never never NEVER take medical advice, inferred or otherwise, from celebrities or bloggers. Come on, seriously. If you're concerned, go see a doctor.
Two: I have no idea what the $99 23andme test covers with regard to BRCA1 and BRCA2 gene mutations beyond what the company states. The most comprehensive test for BRCA1 and BRCA2 mutations was developed by a company called Myriad Genetics and costs about $3000. Myriad has patented the genes, a decision that has been sharply criticized and is currently being decided by the Supreme Court.
But many doctors, patients and scientists aren't happy with the situation.
Some are offended by the very notion that a private company can own a patent based on a gene that was invented not by researchers in a lab but by Mother Nature. Every single cell in every single person has copies of the BRCA1 and BRCA2 genes.
Myriad officials say they deserves the patent because they invested a great deal of money to figure out the sequence and develop "synthetic molecules" based on that sequence that can be used to test the variants in a patient.
"We think it is right for a company to be able to own its discoveries, earn back its investment, and make a reasonable profit," the company wrote on its blog.
I do know the 23andme test covers something related to the BRCA1 and BRCA2 mutations...a friend of a friend did the 23andme test, tested positive for the BRCA1 mutation, and decided to have a preventive double mastectomy after consulting her doctor and further tests. (thx, mark, allison, and ★spavis)

Medicinal Herbal Teas for Breast Cancer Recovery

Wednesday, May 15, 2013

Herbal Teas For Breast Cancer
Research has shown that herbal teas help to balance the whole person physically, mentally, and emotionally while conventional medicine does its work.
In this video:
Peppermint tea - Soothe the stomach
Chamomile tea - Sleep aid
Echinacea tea - Helps the Immune system

Geriatric Symposium for Healthcare Professional - May 22nd

Please find attached a flyer for an upcoming Geriatric Symposium we are having at The Village.  We have partnered with North Florida Regional Medical Center for the 4th Annual Geriatric Symposium for Healthcare Professionals. 

Cost is only $25.00 for 6 CEU’s for Nursing, PT, OT, Pharmacy, LCSW, Respiratory Therapy, NHA and Dieticians.  (CEU’s for PT still pending).   Breakfast and lunch provided.

Space is still available – see flyer for info on how to RSVP!  

Feel free to pass on to others that may be interested.

Free Webinar: Living Beyond Breast Cancer

There will be a free webinar hosted by Living Beyond Breast Cancer on Wednesday May 15th from noon to 1 p.m., called Anxiety and Depression After Breast Cancer, with Dr. Ruth Steinman, Dept. of Psychiatry, U. of Pennsylvania. 

To register, call (610) 645-4567 or sign up at

CEU credits are available for licensed social workers. Webinars are audio accessible by phone or computer.

Cancer Connections May 22nd at Hope Lodge

Plan to join us on Wednesday May 22nd for a presentation by
Dr. John Wingard:    Blood Cancers: What's new in Bone Marrow Transplant.

Dr. Wingard is Deputy Director for Research and the Director of the Bone Marrow Transplant Program at the University of Florida Shands Cancer Center.

We meet at noon in the Hope Lodge conference room. 

Please RSVP no later than Monday May 20th if you would like to be included in the lunch count.  The requested donation is $3;  a spread of healthful
salads and soup is served.   You are also welcome to bring a healthful dish to share, or your own lunch. 

Feel free to share this invitation with anyone having a "cancer connection" who might like to attend.

Barb Thomas

Is It Better To Look Good Than To Feel Good?

Sunday, May 12, 2013

Victoria Moore is a writer and CSC member.

Style is optimistic. It is optimism made visible. Style presumes that you are a person of interest, that the world is a place of interest, that life is worth making the effort for.
Hara Estroff Marano from "How to Have Style"

Do you know what most people say when they meet me, even when they know I've had Stage II A Breast Cancer? "You look so good!!

Whenever they say that, it never fails to amaze me because it's so difficult for me to even look presentable. To get to the point where I can say, "Showtime Folks!" like Joe Gideon (Bob Fosse) did in "All That Jazz", I'm forced to confront a tired face, and a scarred body.  I have to find the energy to transform with makeup and clothes that reflect my own personal style.

On May 1, the facilitator for the Cancer Support Community-Benjamin Center's Writing Group gave us a topic which made me want to explore the subject of appearance. Below is the essay I wrote in response to the topic: Research indicates that holding onto unexpressed feelings or keeping a secret can take a great deal of energy in light of this I need to let you know that . . .

The effort I make to keep the secret that I'm not always "okay" by disguising it with my appearance has led me to a better place where I can deal with problems I wouldn't be able to handle if I didn't "front".  I'm not saying that it's always smart to pretend to be "okay" even when I'm not.  I'm saying that, lately, it's an alternative survival tactic that I need to use to confront issues that overwhelm me. Lately I've wondered how healthy this attitude is because it prevents me from asking for help when I need to and pretending to be strong when I'm not.

At times I'm glad I can reveal my process in my journal and my blogs, my articles and Writing Group and let go without worrying about others seeing who I really am when I'm totally vulnerable. One of the best ways I "hide in plain sight" is through my appearance, which I try to maintain whenever I'm out and about regardless of how I feel.  Realistically it's extremely difficult to keep up with fashion and popular trends when my mind is dually occupied with health issues, but I've found when I force myself to do it by either reading a fashion magazine or shopping at a store and buying something new, I'm diverted from the physical confines of my body and transported to the fun and glamorous world of appearance.

I don't feel separate any longer and instead of focusing and obsessing about all of my flaws caused by my illness and its side effects, I'm inspired by the transformation that new clothes bring, whether imagined or real. I feel like my old self again, even though deep down I've changed and I now see what used to be mere frivolity and happenstance in a new way. Now style's my armor and safety net, when I want it to be, which helps me deal.  And after reflecting during my down times when I'm my sometimes real raggedy self, it's a viable way to cope.

The Downside of Positivity; Giving Yourself Permission to be Real

Tuesday, May 7, 2013

Sara Zuboff is a certified Yoga instructor, massage therapist and thyroid cancer survivor.  Along with Sharon Holly, she teaches a monthly, 2-hour, yoga-based workshop at the Cancer Support Community-Benjamin Center entitled 'Revive & Thrive' in which cancer survivors create mind/body shifts to overcome overwhelm, stress and struggle.   For information on this and other free-of-charge CSC programs, please call 310-314-2555 or visit CSC's website at

At a workshop I taught last week, one of my participants had difficulty completing one of the exercises that included writing a letter of encouragement to herself.  She explained that she felt mired in feelings of sadness, anger and loss and she felt guilty over having these feelings.  Sometimes, I think when we’re going through something difficult there is a pressure to find the positive, to be positive, even when we’re not feeling up to it.

 When I received my own cancer diagnosis I had two family members who were diagnosed with different types of cancer around the same time.  Shortly after I finished treatment, they both died of their disease.  I was so wracked with guilt over my own survival, and whenever I spoke about these feelings, well-meaning friends or family encouraged me to be positive, to remember the joy of my six month old son and the beautiful family I had started with my loving husband.  And while I did feel those things, the truth is I also felt an incredible heaviness from this guilt.  Unexpressed, it cast a dark shadow over my days, making me short-tempered and on edge.  Which leads to an incredibly inconvenient truth about emotions; left unprocessed they will come out sideways, disrupting your life in unexpected ways until you turn around and face them.  However, I promise you that once acknowledged and processed you may find that your journey to positivity is much more ease-filled.

So, I write this in hopes that you’ll give yourself permission to feel all your feelings, even the scary ones.  I do have some tips that have helped me deal with mine and I hope they’ll help you deal with yours.

1.       Journal--Consider using your journal daily or whenever the mood strikes.  Write in a stream of consciousness style with the intention of leaving it all on the page.

2.       Move--Walk, run, dance, box…let your body move!  Not only will this release” feel-good” endorphins it will help release trapped, negative emotions.

3.      Speak Your Truth--Whether it’s your family, friends, therapist, or you have to go out and find a tribe of folks who have or are going through something similar, find a safe place to verbally express how you’re really feeling.  Words have power and by giving yourself space to really express ‘what’s up’ goes a long way towards empowering yourself when it comes to taking care of yourself and those powerful feelings.

4.     Feed Yourself Really Well--Whether it’s fresh whole foods (and I know that sometimes during treatment, eating is the last thing you want to do but do the best you can) or books, movies and social media;  seek out that which nourishes and uplifts rather than that which further shuts you down.

5.     Remember That This Will Pass--It may feel like forever, but these feelings, given proper care will pass and new ones will take their place. 

One of the gifts I got from going through cancer shortly after the birth of my first son is realizing it is possible to feel more than one feeling at a time.  I had periods of intense joy followed by astounding fear in a short span of time.  The trick is being present to both and allowing them to cycle through; because no feeling, when given space, is forever.  That’s the beauty of being human.