Breast Investigators

This month I have the honor and privilege of being featured in West Coast Woman newspaper. West Coast Woman is a wonderful monthly publication in the Sarasota, FL area that offers great articles and event updates with the women of the west coast in mind. They did a lovely job of sharing my story and my work through www.BreastInvestigators.com. I hope it offers inspiration to those who are going through a cancer diagnosis or any other difficult challenge in life to hang in there and find the rainbow after the storm.

http://www.westcoastwoman.com/?Page=Profile

“A difficult time can be more readily endured if we retain the conviction that our existence holds a purpose - a cause to pursue, a person to love, a goal to achieve.”

~John Maxwell

West Coast Woman and Doctors Hospital of Sarasota are offering an evening of pampering and women's health. Take advantage of free screenings,  education, and a spalicous time!

Women in Sarasota & Bradenton -- You’re invited to a SPALICIOUS Evening of Pampering on
Thursday, October 20, 5-7 p.m. at Doctors Hospital of Sarasota.

Get Healthy, Get Pampered and Have Fun!

RSVP by Oct 18: westcoastwoman@comcast.net or 954-3300. 

FREE ADMISSION • FREE LIGHT BITES • FREE HEALTH SCREENINGS

Click here for more info

 “I am incredibly thankful and blessed with amazing Angels here on Earth, whom God placed perfectly and timely in my life! Taking my worries, replacing them with nothing less than witnessing miracles happening before my eyes, feeling an all encompassing LOVE surrounding me, providing me with peace, comfort, amazement and gratitude! I love each and every Earthly Angel placed in my life, I am eternally grateful to each of you.” 
~Shari Ann Olsen, breast cancer warrior

“God doesn't give us more than we can handle” is a familiar quotation we hear when circumstances seem overwhelming. If that is true, He surely put my survivor sister Norma Pitzer-Kelly to the test in 2010. Not only was Norma diagnosed with stage IV breast cancer that year, but her heartache reaches far beyond that devastating diagnosis.
 
Norma had great expectations for the year since she would marry her fiancé on January 1st. But after that glorious day things would take a turn in her life that even her worst nightmares could not predict.
 
In the months to follow Norma would lose both of her parents, her job, her home, her health, and, if that wasn't enough, her husband when he suddenly died in October.   As a result she lost custody of the two boys she and her husband had been raising and planning to adopt.
 
I met Norma at a breast cancer support group in December, and as she shared her story I was speechless. How could one person endure so much in a lifetime let alone a time span of less than one year? It’s unfathomable to most of us. One thing I can say is that Norma has relied on her faith and the support of the angels around her to help get her through.
 
She has a loving sister, Sunie, to help with medical care and day to day matters and the support of her in-laws who now have custody of her children. Norma's weekly schedule includes time with friends, church bible study groups and regular visits to the Cancer Support Community where she participates in several classes and support groups. 
 
During one of these support group meetings, Norma shared that her health had improved enough that she was able to move into her own place again. She was very optimistic about her new start; however, another unforeseen financial setback would keep her from retrieving her belongings from a local storage facility. Upon hearing of her plight, a fellow support group member, Marcia Fishman-Petersen, offered to help. Over the next few days a small flock of angels was assembled, and at the front was a man named Doug Peters whose wife is a breast cancer survivor. He swiftly arranged for a large truck generously loaned by the Lakewood Ranch Band Boosters. Marcia and her daughter arranged for a few more helper angels, and the plan was set to get things moving.
 
The day of the move we met another angel, Dick Gregory, the manager of the facility where Norma’s belongings were placed into storage several months earlier. As the father of a breast cancer survivor, his heart went out to Norma and he found a way to help. He arranged for the storage center to provide the space to her at no charge.  For someone with a limited income and mounting medical bills this was a great gift.
 
By the end of the day, Norma’s belongings were moved into her new apartment.  In the following weeks, her friends helped empty boxes and put her belongings into their new place in her new home. Norma shares that although 2010 was a hard and heartbreaking year to get through, she is so grateful for all the love, support, and kindness she has also experienced both in 2010 and continuing until today. "I've never felt in such a cocoon of love and protection as I have since my diagnosis. If it hadn't been for that I don't know what I would've done."

The National Genome Research Institute describes genetic testing as a clinical tool that “can be performed to confirm a suspected diagnosis, to predict the possibility of future illness, to detect the presence of a carrier state in unaffected individuals (whose children may be at risk), and to predict response to therapy.”

As science advances and we enter into the era of personalized medicine with preventive care and treatment predominantly based on each person’s genetic makeup, it is important to know about the process of genetic testing and those interpreting that information. Through obtaining and understanding a personal genetic profile, individuals could potentially have the insight to their own predisposition to disease thus giving them an opportunity to prevent it. The presence or absence of genetic markers for some diseases can help people make informed decisions about prevention or treatment.

Our May Girl Talk on Health featured guest speaker Cristi Radford, certified genetic counselor at Sarasota Memorial Hospital, and addressed genetics and its link to breast cancer. Among the points discussed was the difference between genetic counseling and genetic testing. Here is a link to a blog written for Breast Investigators in which Radford explains the difference between the two.
http://www.breastinvestigators.com/magazine/read/genetic-testing-and-genetic-counseling-what-is-the-difference_72.html

www.girltalkonhealth.com

When a person is faced with death, they say “their life flashes before their eyes.” When I was told I had breast cancer, my children’s lives passed before mine. They were only two and five years old at the time, and I had a lot of mothering still to do. I was the one who should be there to send them off to school and be waiting at the bus stop when they arrived back with tales to tell about the day. I still had years of birthday parties to plan and cute little outfits to dress them in. I had homework to help with and after school activities to get them to. I had soccer games and ballet recitals to attend and lots of motherly advice to offer in their teen years.

But how would my cancer diagnosis impact my plans for raising my children? During the next couple of weeks, as I went through scans to see if my cancer had spread, I prayed. I prayed to God to get me to their graduation day. By then I felt the important part of my job would be done. For me, graduation day signifies the moment when a child is no longer a child, but an adult entering into an adult life.

A couple of my survivor sisters recently celebrated this victorious day with their children, and it truly tugged at my heartstrings. One of those sisters is Angie Suttles, who at the age of 44 is battling her second Stage IV cancer. But despite her continuing battle that first started in 1998, Angie celebrated this momentous day with her son Caleb. She had the opportunity to sit in the audience to see her son dressed in cap and gown walk up on that grand stage as his name was announced to receive a certificate that symbolizes a transition into his adult years. It is a moment that is filled with pride as well as a sense of sadness as a mother sees her child leaving the nest. But for a mother battling cancer, there is also a feeling of immense gratitude to have come to that day.

Angie wrote it best in her Facebook post, "Graduation Day! The beginning of a new season! Thankful for the promises of God that sustained me to bring me to this day & I have the honor of watching my son walk this 'rite of passage.' I believe & expect God to see my family through to His 'great' plans for our lives & we will live to proclaim His goodness. Thank you, God...my son did not grow up without a mother. It's a day of victory & celebration."

I am seven years past my diagnosis. My children are now 10 and 13, and I am thankful for every moment that I have been allowed to be part of their lives. I still pray to see their graduation day, but over the years I’ve added a few more milestones to the list. My list now includes their college graduation, wedding day, visiting their first home, holding their children in my arms, weekend babysitting, and so on. As a daughter, one thing I have learned through the years is that mothering never ends, and I hope to always be there for my kids like my mother has always been there for me.

Last October, I was asked to speak about breast cancer awareness to a small group of women.  My audience was well-educated and ranged in age from early thirties to early seventies. One thing that troubled me when I gave this talk was that very few of these women knew about a form of breast cancer that I hoped was now common knowledge, Inflammatory Breast Cancer.

Inflammatory breast cancer (IBC) is the most aggressive form of breast cancer. Survival statistics and recurrence rates are much bleaker for IBC than for other types of breast cancer. It often goes undetected by mammograms and ultrasounds because it usually grows in nests or sheets, unlike the well publicized lump commonly recognized as a warning sign of breast cancer.

At every opportunity I like to review the signs and symptoms of breast cancer because, prior to my own diagnosis, I thought the only sign to look for was a lump. My personal experience taught me that a lump is not the only sign of breast cancer and that different types of breast cancer may have different warning signs.

The Inflammatory Breast Cancer Research Foundation states that signs of inflammatory breast cancer may include:

• Swelling, usually sudden, sometimes a cup size in a few days
• Itching
• Pink, red, or dark colored area (called erythema) sometimes with texture similar to the skin of an orange (called peau d’orange)
• Ridges and thickened areas of the skin
• Nipple retraction
• Nipple discharge, may or may not be bloody
• Breast is warm to the touch
• Breast pain (from a constant ache to stabbing pains)
• Change in color and texture of the areola
• Lymph node swelling under the arm or above the collarbone

Note of Warning:

·         If you suddenly develop a lump or mass, have it checked immediately.

·         Increased breast density compared to prior mammograms should be considered suspicious.

·         Remember: You don’t have to have a lump to have breast cancer.

A few weeks after giving the above mentioned talk, I learned that a dear friend and fellow advocate had been diagnosed with IBC. I was horrified to discover that she had been experiencing symptoms for some time, but did not recognize them as possible signs of breast cancer. According to IBC research, most women diagnosed with IBC had never heard of this form of breast cancer prior to their diagnosis. 

This solidified in my mind the need to help raise public and medical awareness of IBC.  Listed below are resources to help you better understand inflammatory breast cancer.  Please use these resources to help you spread awareness to your friends and others in your community.

Inflammatory Breast Cancer Video

Pictures of Inflammatory Breast Cancer

Books about Inflammatory Breast Cancer


IBC Resources:
Inflammatory Breast Cancer Research Foundation

When a young woman is diagnosed with cancer, she copes with different issues than a woman who is older and post-menopausal. Often times a diagnosis at a young age means dealing with more aggressive cancers, fertility and relationship issues, treatment-induced early menopause, and living many decades with this serious diagnosis. Most medical and psychological resources are designed for women over age 50, leaving young women uncertain where to turn for help and support.

The C4YW (Conference for Young Women) was created by Living Beyond Breast Cancer and the Young Survival Coalition for young women affected by breast cancer and those who support them.  The conference includes updates from leading professionals on scientific research and clinical care developments along with information and resources to assist in treatment choices and other issues relevant to young women. In addition, the conference offers a unique opportunity for these women to network with peers who relate to their experience.

Last year, while doing research for Breast Investigators website, I learned about the Young Survival Coalition (YSC), Living Beyond Breast Cancer (LBBC), and the Conference for Young Women (C4YW). Though I was thrilled with these discoveries, I could only wish I had known about them 6 years earlier.

When I was diagnosed with breast cancer at the age of 35, I felt very much alone. Although I was fortunate to have the love and support of my family and friends to help me through most of the difficult times, there were other times when I just needed to talk to someone who had “been there.”  I was making decisions about treatments and surgeries, and coping with side effects and emotional struggles that my immediate support system couldn’t really help me with.  It wasn’t until I had the opportunity to talk with another young survivor that I was able to put my situation into perspective and make decisions with a clearer understanding of what these choices meant for me and for my young family.

As my treatment was ending, I had the opportunity to connect with a young woman whose treatment was just beginning.  It was my intention to help her through her journey so she would not feel alone.  But much to my surprise, I believe I benefited the most from our friendship and I began to heal in ways I never imagined.  The reality is that when treatment is over and the doctor visits end and you are pronounced “cured”, you are left alone with your scars.  And it turns out that the most difficult scars to heal are the ones on the inside.  I was no longer a healthy young woman.  I was now a young breast cancer survivor and I would always wear that badge.  Being able to talk about these emotions with someone who truly understood was instrumental on my road to recovery.  Now, as time passes and more young breast cancer survivors join my circle of friends, it might appear as though I am helping them along on their journey.  But, in fact, they are helping me.

The YSC, LBBC, and the C4YW offer opportunities for young survivors to connect and gain access to information and resources pertinent to their unique situation.  If you know of a young breast cancer survivor, please let them know about these organizations and this annual conference. And if you are a young breast cancer survivor yourself, I encourage you to attend C4YW on the weekend of February 25-27^th, 2011 in Orlando, FL.

http://www.c4yw.org

     Pantene Beautiful Lengths is a program that allows even a child to make a difference in the life of someone who is enduring cancer treatments. This program encourages volunteer donors to grow, cut, and donate their hair to make real-hair wigs for women who have lost their hair due to chemotherapy.

     One of these donors was a 7 year old girl named Olivia. When asked why she wanted to cut and donate her hair to Pantene Beautiful Lengths, Olivia answered, “My aunt had just died. I thought it would be a way to remember her. I thought it would help a lot of people that had cancer because my hair could make wigs for people who had breast cancer.”     

     Olivia’s mom, Chris, shared that when Olivia's aunt died, it was very hard for Olivia. She said, ”We felt by getting her hair cut it would give her some control over the situation.  It was doing something positive after something negative happened.”  When asked what Olivia thought about her new shorter style after the cut, Chris said “She was excited and thought it looked great!” And this was not the first time Olivia donated her lovely locks. She cut and donated her hair for a similar organization at the age of 5.
    
      Since its inception in July 2006, Pantene Beautiful Lengths has received overwhelming support from women, children, and even men wishing to express their feelings of hope and gratitude, of love and loss by donating their ponytails. Thanks to the generosity of these donors, Beautiful Lengths has collected over 208,000 ponytails, creating 6,300 wigs to donate to women who have chemotherapy induced hair loss.  A real-hair wig can help a woman regain a sense of normalcy while going through cancer treatment.

     Creating a real-hair wig takes approximately three to four months, and each wig requires at least six ponytails to make. After Pantene Beautiful Lengths wigs are created, they are distributed for free through select American Cancer Society wig banks across the country. Women facing cancer can find out about the availability of a Pantene Beautiful Lengths wig by calling the American Cancer Society at 1-877-227-1596.

The general hair requirements for donated hair are:

• Donated hair must be a minimum of 8 inches long (measure hair from just above the elastic band of the ponytail to the ends).
• Hair may be colored with vegetable dyes, rinses and semi-permanent dyes. It cannot be bleached, permanently colored or chemically treated.
• Hair may not be more than 5% gray.

If you would like to learn more about Pantene Beautiful Lengths Program click here to go to their website.

http://www.pantene.com/en-US/beautiful-lengths-cause/Pages/default.aspx

            You never know what is going to make a difference in your life or in the life of another person. When I was in my twenties I used to watch the Rosie O’Donnell Show every day. I loved her humor and it was something I really looked forward to. I even bought a Rosie O’Donnell doll. Remember those?

One thing that made an impression on me while that show was on the air was Rosie’s commitment to breast cancer awareness. Her mother died of breast cancer at a young age, leaving Rosie and her four siblings motherless when Rosie was just ten years old. Rosie has said that she turned to television to deal with her grief. It became her companion and friend.  Rosie’s interest in television turned into a thriving career in entertainment that eventually landed her a syndicated daytime variety show, The Rosie O’Donnell Show. Rosie took the opportunity to use her show to get the message out about early detection by encouraging women to perform breast self-examination and to get mammograms.

Because of her show and her message I started performing breast self-exams. As a result, I became aware of a change that occurred in my own breast. After following up this finding with a clinical exam, mammogram and then biopsy it was determined that I had discovered my own breast cancer.

I know she has had some controversial years since that show was on the air, but I’d like to thank Rosie O’Donnell for her early commitment to breast cancer awareness and for taking part in saving my life! And for all the times she made me laugh, too.

Perhaps you would like to take a moment to possibly make a difference in someone else’s life by inviting your friends and family to join Breast Investigators.  They will receive our monthly breast self-awareness reminders and newsletters and will have access to valuable information that will help put them in control of their breast health.  Those simple clicks could make a difference in the life of another person and maybe one day they will be thanking you.

Several recent studies have shown that vitamin D may assist in the prevention of breast cancer.  But did you know low levels of vitamin D could also be putting you at risk for the disease?

A study published in the Journal of Clinical Oncology found that 74 percent of pre-menopausal women who were diagnosed with early stage breast cancer are deficient in vitamin D. In addition, women with early stage breast cancer that have lower vitamin D blood levels have worse outcomes than those with adequate levels of vitamin D.

In another breast cancer study that pooled dose-response data from the Harvard Nurses Health Study and the St. George’s Hospital Study found that the data was very clear in showing that individuals in the group with the lowest blood levels of vitamin D had the highest rates of breast cancer and that breast cancer rates dropped as vitamin D blood levels increased.

How can you find your Vitamin D levels?
Vitamin D levels can be determined through a 25-hydroxyvitamin D, or 25(OH)D blood test.

What are sufficient levels of Vitamin D?
In the studies mentioned, vitamin D levels were determined to be sufficient at 30ng/mL or greater; insufficient at a level of 20-29 ng/mL; and deficient at levels below 20 ng/mL. Levels consistently greater than 200ng/mL are considered to be potentially toxic.

How can you get more Vitamin D?
The best ways to increase Vitamin D levels are first through diet, then through exposure to sunlight, followed by supplements of vitamin D3. Foods containing high levels of vitamin D include cod liver oil, sockeye salmon, and mackerel.
Sun exposure should be 10-15 minutes daily and should be discontinued before the skin begins to change color (tan or burn).  More information on vitamin D sources

How much Vitamin D do you need?
The daily Recommended Dietary Allowance (RDA) of 400 international units (IU) of vitamin D does not appear to be effective in correcting a deficiency. The serum levels associated with a 50 percent risk reduction could be maintained by a daily intake of 2,000 IUs of vitamin D3.

Vitamin D Co-Factors
In order to utilize vitamin D properly the body also needs magnesium, zinc, vitamin K2, boron, genestein, and small amounts of vitamin A.

What are some other benefits from Vitamin D?
Adequate vitamin D levels also improve bone mineral density, quality of life, and mood.

National Institutes of Health Office of Dietary supplements
http://dietary-supplements.info.nih.gov/factsheets/vitamind.asp

Vitamin D Council
www.vitamindcouncil.org

University of California, San Diego News Center http://ucsdnews.ucsd.edu/newsrel/health/vitamind07.asp