Angelina's Gift

What a week it has been in the world of breast cancer. Hollywood star and activist, Angelina Jolie, announced she had taken action and undergone a preventative/prophylactic double mastectomy because she had tested positive for the BRCA1 gene mutation. There is so much to consider in that one announcement.

First, thank you, Angelina. Thank you, for bringing the hereditary side of breast cancer to the forefront. While much of the media attention may be focusing on Angelina's decision to be proactive, I feel that there has not been enough attention given to the fact that her condition is 1 in 10, the 10%. In fact, many medical experts have focused on the fact that Angelina's condition is "rare." Seriously, are you trying to make us feel better? Let's talk about rare. Each year in the US, 300,000 women are diagnosed breast cancer and 22,000 will be diagnosed with ovarian cancer (and more than 14,000 will die of ovarian cancer because by the time a woman feels symptoms, it is usually to late to treat her cancer). So I am thinking 10%, one in 10, of these women diagnosed each year would probably like the chance to know well ahead of time that they have the potential, the GENE mutation, for breast and ovarian cancer. Then they may have the chance to head off cancer at the pass. Just a hunch.

So here is the gift that Angelina gave us. She raised awareness. Yes, she raised awareness of breast cancer, hereditary breast cancer, BRCA, etc. But I am talking about something bigger...she raised awareness that one company, Myriad Genetics, owns the patent to the BRCA1 and BRCA2 genes. Myriad's BRACAnalysis is the only test available to women to determine their risk of hereditary breast or ovarian cancer. The test looks for defects in the BRCA1 or BRCA2 genes. Testing for the two genes costs approximately $3,340. Definitely not a price point for the common (wo)man. The good news is that there is a case underway in the Supreme Court to determine if companies can patent the process of taking a gene out of the human body for research. Arguments started in April and a decision is expected later this year. My opinion, and this is Amy's opinion and no one else's, is that this patenting of human genes has not only created a monopolistic situation but is stunting the growth and innovation in this area of testing. Who's to say that another company with access to this testing method could not improve it - make it better, faster, cheaper? Additionally, competition would bring the price down making this testing available to more women which would in turn save more lives. Not to mention the money saved in treatment that will have to occur down the road for these women that could have been tested and taken preventative action.

All because Angelina took action and was not afraid to share...

Until next time,

Amy

Happy Mother's Day

Mother's Day is a special day where we honor our mothers and celebrate all that they are and do for us. The joys of motherhood are many but imagine being a mom with cancer and feeling the pressure of possibly having your Mother's Days numbered. Or the guilt of not being able to do everything you once could for your family. Or maybe just not feeling well because of treatment. These additional emotions and stresses do not make for a Happy Mother's Day.

This Mother's Day focus on the time you do have with your family and make memories that you all will cherish. Try to relax and smile. Know that your children love you to the moon and back, no matter what. Here are some fun, easy on you, activities that you can do together and will create lasting memories.

Handprint and footprints are beautiful especially when you put yours and your child's together.

1. Hand-in-Hand: Outline your hand on a piece of paper in your favorite color. Then outline your child's hand in their favorite color. On each of your hand outline fingers, write things your child loves about you. On each finger of your child's hand outline, write something you love about your child. Be sure to put the date and even include a photo of the two of you. Frame it and you have a keepsake.
2. At any craft store, you can usually find a Garden Stone kit. Put your hand/footprint alongside your child's and decorate. Put your favorite word(s) and the date. 
3. If you have a favorite animal, search for hand or footprint art that you can make together. Click here for some great ideas.

These are just a few ideas...what other ideas do you have?

Happy Mother's Day! Enjoy the moments.

Amy

The Doc Says my Breasts are Dense, Now What?

Dense breasts.  40-50% of all women have dense breasts and the denser the breast, the more difficult it is to find the abnormalities in a mammogram. Breast density is not something you can feel...like when you have fibrocystic breasts (I once had a doctor explain this as feeling like grapes in a ziploc bag). This is not the same. Breast density is a condition you can only see on the mammogram.

So what's the issue? Dense breast tissue shows up white on a mammogram. Guess what else shows up white? Calcifications. Cancer. Even benign tumors. Needless to say, the mammogram is difficult to decipher and less accurate when there is dense breast tissue.

As of April 1, 2013, Senate Bill 1538 went into effect and now the law requires doctors to inform women who have dense breasts that the mammogram may not be sufficient. The law is simply ensuring that women are made aware of their breast density.

How does the medical community measure breast density? There is no standard.

L-R: Wayne Watson, Dr. James Maxwell, Dr. Amy Bremner,
Carole Conrad

So you have dense breasts...now what? Well, screening mammograms miss 20-30% of cancer and the majority of those missed are women with dense breasts. Mammograms are still considered the best screening test even if you have dense breasts. However, now that you will be made aware of your breast density, you can work with your doctor to determine if additional screenings are needed. MRI (Magnetic Resonance Imaging) is the next step. Why not an ultrasound? Ultrasounds are best for investigative work once a problematic area is discovered by a screening tool, like a mammogram or a MRI.

Self Breast Exams are still one of the best tools and you know your body better than anyone. Check your breasts monthly. Get your annual screenings. Most of all, get educated and be your own health advocate.

Michelle's Place Breast Cancer Resource Center would like to thank Dr. Amy Bremner and Dr. James Maxwell for their informative, candid presentation on Breast Density.

Farewell October

Happy Halloween! Even though it is October 31st, please do not let this be the last day of Breast Cancer Awareness Month...breast cancer awareness is a year round activity! Take what you have learned and continue to share with those around you.

What can you do? Well, we received support from young and old this month. Soccer players sold pink socks, football players sold pink items, elementary school children collected coins. Children can participate all year too...my kids have a charity bank at home and put part of their allowance in there each week.

It doesn't end there. Have you considered the children who's moms are going through treatment and their families are struggling financially? We have and our Pink Ribbon Assistance program provides financial support and at holiday time, we provide a Christmas party complete with the man in red and presents for kids. In August, we have a Party in the Park and provide the kids with backpacks full of school supplies to take that burden off of the parents.

We cannot thank our community enough for their involvement. Something as simple but as profound as our Go Pink! program really makes a statement as you drive through town. Local business sell our pink ribbons for $1 and display them. All proceeds go to us, Michelle's Place Breast Cancer Resource Center, and the displays are beautiful and such a vision of support!

So much more went on this month and appreciate each and every action that everyone took to promote awareness this month because out of it came education. We were able to provide more than 80 free screening mammograms and we provided support to over 100 women diagnosed with breast cancer this month. That is what we are all about. Helping women get what they need and educating the community.

And I will close with a message from our Executive Director, Kim Goodnough:

October is leaving me speechless

I am very rarely at a loss for words. Just ask my husband, my father, my dear in-laws, my children, my friends. I want you all to know that I have not been neglecting this blog. I literally have not found words profound enough to express what I have been feeling over the last couple of months.  We start preparing for October months in advance so I have been in the zone for a while.

October is an especially busy (understatement of the year) for Michelle's Place and we do remind everyone that every month is Breast Cancer Awareness Month for us. Due to marketing and the pink revolution, we will never win the battle to even out the activities across the months so our staff, board and volunteers dive in head first and do not come up for air until the beginning of the fourth week of October. I am so proud to be associated with these people...their passion, support and dedication is beyond measure.

Today our Executive Director, Kim Goodnough, published her weekly message in the Michelle's Place weekly e-newsletter and I finally became inspired. Not inspired enough to write my own words, but inspired to share hers. Without further ado, here is a message from our Executive Director:


It is so important that we are reminded of the work MP does and how much it means to so many.  I am so proud to be part of this team.  When I was walking in the event yesterday (Susan G. Komen Race for the Cure) I felt emotionally overwhelmed a little as I looked around.  I think everyone feels that way when they participate in that event.  But, for me it was a little different this year.  It was a very introspective day. This is my 11th year.  It's so cool to see so many "Team Michelle's Place" shirts everywhere.  We started the walk with Paul who lost his wife this year and he comes to MP to feel part of her and share with us their love story, and as we crossed the starting line the announcer yelled out "GO team Michelle's Place, we love Michelle's Place", my heart swelled with pride.  And as I read all the names of those lost, loved and remembered on the backs of participants, I thought, we lost 4 women this week at MP.  And then, as we neared the finish line (we cheated) part of the Hawks soccer team ran past us in their pink socks that they sold to raise funds for Michelle's Place.  So MANY people are part of this amazing journey.  All of us, each one of us, makes an impact.  We are a support system for those who have lost loved ones, direction for those recently diagnosed, we provide hope and inspiration for young people and we carry on a legacy that I think Michelle would be proud of.  Thank you all for what you do.  It is awe-inspiring and so heart-warming.  I am blessed to be part of it.

Thank you, Kim. Michelle is not only proud, she is smiling and cheering you, and all of us, on.

Your Wife Has Breast Cancer and Your Powers have been Rendered Useless

I am going to apologize up front for offending anyone with the generalizations I apply in this post. I do so with the best of intentions. Obviously, there are always exceptions.

Men are from Mars. Women are from Venus.
This concept is crucial when you consider how a man feels when his significant other has been diagnosed with breast cancer. Often we focus on the woman and how she is feeling but the husband deserves some attention too. The journey can be long and men are typically not the primary focus when their partner is faced with a breast cancer diagnosis.  However, understanding their coping mechanisms and getting them the type of support they need is critical.

At Michelle's Place Breast Cancer Resource Center, we have never had success in establishing an ongoing husbands/partners support group. This is not surprising because most men do not want to sit and discuss their problems, especially with people that they do not know well. Many men say it makes them feel worse to discuss their problems and prefer to focus on actions to improve the situation or cope by participating in activities that will distract them such as exercising or spending time with friends.

It seems to be the feeling of powerlessness that is the hardest for men. Many men cope by taking control of a challenging situation and focusing on a plan of action. It is truly a struggle to stand by and watch as their wife endures painful treatments and then have to deal with unknowns. All the while, their lives are turned upside down with changes in daily work life and household responsibilities. Add to this worries about children and changes in their relationships with their wives. Since most men like to fix problems, it is not surprising they rate their spouses cancer diagnosis as the worst thing that can ever happen to them - worse even than being diagnosed with cancer themselves.

If you know a man that is in this situation, I want to introduce you to a man that I admire and I only know him through his book. Mike Stalter has written a book called Still Have Faith. He wrote this book about about his experience with his wife's 17½-year battle with breast cancer. I admire Mike because he took the time to write this book with honesty. He does not romanticize the situation and turn it into a "made for tv" movie. He is candid...he readily admits he feels he could have done more. I am not going to spoil it for you though. I do recommend this book and I am donating 2 copies to our Michelle's Place library in hopes that it will help spouses/partners of our clients.

You can purchase the book on Mike's website at www.stillhavefaith.com or you can purchase the Kindle edition on Amazon. You can find him on Facebook too.

 

Announcing our Metastatic Breast Cancer Self Help Group

At Michelle's Place Breast Cancer Resource Center, it is a large part of our mission to provide emotional support to those with breast cancer.  Even if you are blessed with a personal support network (family, friends, church, coworkers, etc.), a breast cancer patient can still feel the need to connect with others going through similar experiences.
We offer support groups for women, Spanish-speaking women and their families and for children. This month we are adding a new group.

Metastatic breast disease is breast cancer that has not just come back, but has made its way through the bloodstream and spread to other organs of the body, such as the bones, liver, or brain. Cancer spread may be present at first diagnosis or after recurrence. Many women can live for years with metastatic cancer that is under control. For these women, living with a diagnosis of metastatic breast cancer is like living with a chronic disease. However, their needs are much different than those of a woman recently diagnosed or her cancer is isolated to the breast.

Michelle’s Place is thrilled to announce the addition of a new support group specifically for these women.  Rachel Mason,  M.S., M.A., Director of Community Relations at Delta Hospice of Inland Valley has graciously agreed to facilitate this new group.  Rachel is a certified mental health professional, she has worked in the Hospice industry for the last 15 years and currently serves on the Michelle’s Place Advisory Board.  The Michelle’s Place Metastatic Breast Cancer Self Help Group will meet the 4th Wednesday of each month at 5:30pm at Michelle’s Place.  For more information visit www.michellesplace.org, email info@michellesplace.org or call 951-699-5455.

See our complete support group schedule.
Learn more about our Spanish-support group or Kids Konnected.

At Michelle's Place, we believe no woman should face breast cancer alone.