Know Your Risk: Breast Cancer, Family History and Testing BRCA Negative

Article excerpts: It wasn't until I was diagnosed with breast cancer last fall at 30 years of age that I was tested for the BRCA1 and BRCA2 mutations. The results were more shocking to me than my actual breast cancer diagnosis: I do not carry the BRCA1 or BRCA2 mutations.

The results yielded more questions than answers for me. How could I test negative when there is such a strong family history of the disease? How did I get breast cancer at a younger age than any of the women in my family?

I should have been relieved to know that I didn't carry the gene mutation, but if it wasn't a BRCA mutation, what caused the women in my family to have a higher risk of breast cancer?

Interestingly, mutations in the BRCA1 and BRCA2 genes account for only about one quarter of hereditary breast cancers. Mutations in other genes, including CDH1, STK11 and TP53 have been found to increase the risk in developing breast cancer. These mutated genes differ from BRCA1 and BRCA2 because they cause syndromes that greatly increase the chance of developing cancer over a person's lifetime. Scientists have also found that inherited mutations in the ATM, BARD1, BRIP1, CHEK2, NBN, PALB2, RAD50 and RAD51 genes may also be associated with a higher risk of breast cancer, and they are constantly learning more about how genetics affect predispositions to the disease.

It is very important to know your risk and protect yourself accordingly. However, for the at-risk women with family histories of breast cancer who test BRCA negative, the false sense of relief these negative tests provide is extraordinarily troublesome in light of the fact that 75% of hereditary breast cancers are not related to the BRCA1 and BRCA2 mutations. For me, the most concerning thought was whether I would have been as vigilant in my screening had I received the BRCA negative test results prior to my breast cancer diagnosis.

Women simply cannot rest on the results of one test, particularly if they have a family history of the disease. Knowing the risk or acknowledging a family history of the disease is half the battle. The first thing a young at-risk woman can begin to do is begin self-breast exams in her teens and early twenties. Resources like the American Cancer Society provide step-by-step instructions on how to conduct a self-breast exam. If there are any changes or abnormalities when conducting regular self-breast exams, these differences may be noticeable and can be addressed as soon as detected.

It is also important for women to have a candid discussion with their health care professionals with regard to genetic testing, their screening regimen and what they can do to protect themselves. Knowledge is power. Understanding risks, family history and genetic predispositions to breast cancer, in addition to knowing the options available for early detection and prevention, will help guide the decisions for proper vigilance.

For me, regular screenings beginning at the age of 25 and awareness of my increased risks enabled me to detect my breast cancer at the earliest possible stage. I didn't dodge a bullet because I was BRCA negative. It was knowing my risks and being vigilant that saved me from the spread of breast cancer, saved me from extensive treatments and saved my life.

http://www.huffingtonpost.com/samantha-golkin/know-your-risk-breast-cancer-_b_5565346.html?utm_hp_ref=tw

SUMMER SOUNDINGS

The past few weeks have been filled with traveling, vacation, and getting used to a new job. As a result, I haven't posted in a while. 

My family and I went on vacation in Pigeon Forge, Tennessee. We spent one day going to Clingman's Dome. We drove up the mountain and hiked the remaining 1/2 mile to the observation tower at the very top. The view is definitely worth it.

We also spent an afternoon walking up and down the strip in Gatlinburg. There were many shops and unusual things to look at.  In one shop, I ran across a man that does temporary tattoos. Henna tattoos were advertised and knowing that Heather had recently had one, I asked about them.  He told me that they were no longer allowed to do henna tattoos and the police had been to shops just the day before confiscating henna. Apparently, there is a henna that is very dangerous and causes burning and blistering. Please do lots of research if you are considering this type of tattoo.

On the way home, we stopped in Nashville. I wanted to see Mike Wolffe's shop, Antique Archeology. I was hoping we would have a chance to meet Mike as well. He wasn't there, but we did get a few pics before heading to the next place.

Then onto the outside of the Grand Ole Opry for a few pics.

We are now back home and back into routine. Vacation is nice, but it's also nice to be home.



Kristi

Cruciferous Vegetables and Cancer Prevention

• Cruciferous vegetables contain vitamins, minerals, other nutrients, and chemicals known as glucosinolates.
• Glucosinolates break down into several biologically active compounds that are being studied for possible anticancer effects.
• Some of these compounds have shown anticancer effects in cells and animals, but the results of studies with humans have been less clear.

http://www.cancer.gov/cancertopics/factsheet/diet/cruciferous-vegetables

God Is With You!

Family Notification Service

How to notify your immediate and extended family that you tested positive for a BRCA mutation.

http://www.checkyourgenes.org/index.cfm?fuseaction=cms.page&id=1029

Heirloom Hats

Our family is rich with heritage. Not all of it is grand, but it's there for us to learn from. 

My grandma love her family, she loved children, she loved to crochet and sew, but most of all she loved her Lord. All my life I remember Grandma crocheting, she loved to make things for other people. She taught many of us how to crochet, myself included. 

Grandma had very little in the way of money or worldly goods. But, she did the most with what she had. I didn't know until after her death, that she had contributed to St. Judes Children. She always wanted to help.

Now, years after her death, we know that we also have a heritage a cancer that runs much deeper than we realized. We want to use our gifts and knowledge to help others in similar situations. 

Heirloom Hats is a mission born of love.  As some of our own are going through chemo, trials and tribulation, we want to extend a hand of love. Our mission is to place as many hats and scarves with people as possible. We want to offer a little bit of comfort to others. 

Other people will be joining us in this endeavor and we are excited and grateful. If you would like to join us, or know of someone in need, please let us know.

Kristi M.

Sewing For Cancer

I've been looking for patterns for scarves/hats to make for chemo patients. There are several ideas out there. Here are a few that I have come across.

http://fromtheheartstitchers.org/Patterns/Chemo%20bandana%20for%20sewing%20.pdf

http://www.sewing.org/html/turban.html

http://www.nancysnotions.com/jump.do?itemID=5&itemType=LANDING&page=GailsCKBeret

http://cindyabel.com/running-around-kerchie/

http://www.fmfcorp.com/familyspot/haircover.html

http://www.brimmingwithlove.com/patterns.html

http://www.daydreambelieversdesigns.com/2012/08/updated-chemo-caphead-scarf-tutorial.html

Breast Cancer 1 Early Onset - BRCA1

In addition to female breast cancer, mutations in the BRCA1 gene also increase the risk of several other types of cancer including fallopian tube cancer, male breast cancer, and pancreatic cancer. Many of these mutations change one of the amino acids used to make the BRCA1 protein, resulting in a protein that cannot perform its normal DNA repair function.

http://ghr.nlm.nih.gov/gene/BRCA1

Breast Cancer and Men

Breast Cancer Screening Recommendations for Men at Higher Risk Due to an Inherited Gene Mutation or Strong Family History

Breast cancer in men is rare, but it does happen (about one percent of all breast cancer cases in the U.S.) [49]. Men have much less breast tissue compared to women and are not routinely screened for breast cancer. Breast cancer screening is only recommended for some men at higher risk due to an inherited gene mutation or a strong family history. For these men, screening may increase the chances that breast cancer is found early, when the chances for survival are highest.

If you have concerns about your risk of breast cancer, talk to your health care provider.

Men at higher risk of breast cancer

Some men may have a higher risk of breast cancer, including those with a [20]:

• BRCA2 or BRCA1 gene mutation (or a first-degree relative with a mutation)
• Strong family history of breast cancer, such as mother and/or sister diagnosed at age 40 or younger

http://ww5.komen.org/BreastCancer/ScreeningRecommendationsforMenatHigherRisk.html

How do I (a man) know if I should get tested for BRCA?

Men from families with a history of breast and ovarian cancer should consider testing for a BRCA gene mutation particularly if any of the breast cancers occurred before age 50 (in either female or male relatives). Men with breast cancer themselves are highly likely to have a BRCA mutation and should consider testing. Men who have prostate cancer and a family history of breast cancer should also think about testing.

For more information on BRCA risks and prevention in Men, visit:

Breast Cancer Genes Can Affect Men, Too
by American Cancer Society

http://inthefamily.kartemquin.com/content/men-and-brca

Family History, Inheritance, and Breast Cancer Risk

I have been doing some research and came across this in a study by Cornell University:

What are breast cancer families?

Breast cancer families are families in which breast cancer is inherited and family members are at greater than average risk of breast cancer. Simply finding several cases of breast cancer within one family does not mean a pattern of genetic inheritance. Determination of family inheritance requires a detailed examination of breast cancer in present and earlier generations by someone trained in genetic analysis. Breast cancer is common enough (affecting one in eight or 12% of all American women over their lifetimes) that several cases could occur within a family merely by chance alone. For example, if a woman with breast cancer has ten female relatives who have lived to 80 years old, there is a 50% chance that one of them will also have developed breast cancer.

Breast cancer families are frequently described as families with three or more close relatives with breast cancer. Members of these families are at high risk for developing breast cancer at a young age that may affect both breasts. The existence of breast cancer families has been noted since the mid-1800s.

Several types of family patterns exist. There are families with breast cancer alone, families with both breast and ovarian cancer, and families with several types of cancer including breast cancer. Breast cancer families also differ in the number of family members affected with cancer. Some families have many members with breast cancer and very high risk and other families have fewer family members affected and lower, but still, higher than average breast cancer risk.

http://envirocancer.cornell.edu/factsheet/general/fs48.inheritance.cfm

BRCA in the Family

Check this out! There's a LOT of good information here.

http://inthefamily.kartemquin.com/content/brca-101

DigniCap

The DigniCap, a Swedish device that has been successfully used in Europe since 1999, but is not used in the United States, may become available in 2015. The silicone cap limits the chemo from reaching and killing off hair follicles and is currently being tested by researchers in New York, California and North Carolina.

http://www.nydailynews.com/new-york/device-prevents-hair-loss-cancer-patients-u-s-article-1.1754658

Health Tip

Health tip from the Matcha Focker! Drink green tea! The end! 

"A number of studies show that green tea benefits include protection against certain cancers. “The data are the strongest for ovarian, bladder, and esophageal cancers,” Moore says. Green tea and green tea extracts also have been shown to lower the risk of breast cancer spread and decrease the risk of breast cancer recurrence, but only in certain circumstances. Research shows that green tea doesn’t seem to prevent breast cancer in Asian women, but it might help reduce the risk for breast cancer among Asian-American women. The jury is still out, though, on the likelihood of green tea reducing breast cancer incidence in Western populations."

http://www.everydayhealth.com/diet-and-nutrition-pictures/life-sustaining-reasons-to-drink-green-tea.aspx?xid=tw_everydayhealth_sf#/slide-1

Guardians of the Ribbon Visit Heather

Yesterday, the Guardians of the Ribbon from lower Alabama visited Heather and her family. They arrived with Cindy, their pink truck and the Foley Fire Department.  Cindy is named after one of the Captains wives who lost her battle with breast cancer in 2010.  All of the pink trucks are named for someone who has inspired the chapter or someone who has lost the battle with cancer.

Here are a few pictures of the team spreading love, hope, and lending a helping hand.

Thank you SO much, Guardians of the Ribbon: Lower Alabama Chaper!

Guardians of the Ribbon: Lower Alabama Chapter

About

Cares Enough to Wear Pink" We selflessly put our women first in the battle against cancer, at the very least we wear her color to let her know we CARE! We bring Love & Hope to communities around the country in the form of Pink Fire Trucks.

Mission

As fire fighters and police officers, we wear a blue shirt 365 days a year. Our mission is to lose the blue and don the pink in honor of women for 3 days in October. We have designated these three days each year, October 25th, 26th and 27th, for “The Cares Enough to Wear Pink” campaign. Women represent a large percentage of the population, and what an impact it will have for all women to see the support in pink. We hope that our Fire and Police Chiefs and other leaders of this Country see the color pink, not just as a benefit for breast cancer, but as a way to support all women in their fight against all cancers.
The sale of the Guardians logo shirts and the donations we receive directly will be used by the Guardians of the Ribbons Inc. for gas, maintenance on the fire truck, as well as food and lodging for the tour. Guardians of The Ribbon request that all other fundraising activities and the monies raised be targeted to stay in those specific communities in which the events occur.

These men honor those who can no longer fight, stand with those who can fight and inspire those who watch.

This mission is about Men Supporting Women in the fight against cancer.

Company Overview

Guardians of The Ribbon, dressed in pink fire suits, will drive pink fire trucks across the country every year to spread our awareness campaign supporting all women in their fight against cancer. The Guardians bring the tour to help raise money and awareness for the non-profit entities that help women in their City and State. In addition, this non-profit supports and helps other non-profit programs raise money by bringing the pink fire trucks to various fund raisers to assist in the efforts at no charge to the organization. As Guardians of The Ribbon, are goal is to spread the “Cares Enough to Wear Pink” campaign until all are in pink shirts. Why? Because Pink Heals

How Important is Vitamin D for Breast Cancer Treatment?

"How Much Vitamin D Is Required for Breast Cancer Prevention?

In 2011, Dr. Garland's team found that a vitamin D level of 50 ng/ml is associated with a 50 percent lower risk of breast cancer.7, 8 (Similarly, a 2007 study published in the American Journal of Preventive Medicine9 concluded that a vitamin D level of more than 33 ng/mL was associated with a 50 percent lower risk of colorectal cancer.)

In the featured video above, GrassrootsHealth founder Carole Baggerly interviews Dr. Garland about those 2011 findings.

At that time, they discovered that in order to achieve protective levels, you have to take far more supplemental vitamin D than previously thought. To reach a minimum protective level of 40 ng/ml of vitamin D, study participants had to take anywhere from 1,000 IUs to as much as 8,000 IUs of vitamin D3 per day—a far cry from the recommended daily allowance of 600 IUs of vitamin D for adults.

The supplemental dose ensuring that 97.5 percent of the study population achieved a serum 25(OH)D of at least 40 ng/mL was 9,600 IU/day. This study also concluded that intake of up to 40,000 IUs per day is unlikely to result in vitamin D toxicity.

It's important to note, however, that it's virtually impossible to make a general recommendation on how much vitamin D to take as the amount needed can vary significantly from one individual to another. In essence, you need to regularly monitor your levels, and take whatever amount of vitamin D3 you need to maintain a clinically relevant level."

http://articles.mercola.com/sites/articles/archive/2014/04/13/vitamin-d-breast-cancer-prevention.aspx

Blues Clues Hat Pattern - Free

http://imhooked25.blogspot.mx/2013/01/blues-clues-hat.html

Amazing Grace Hat - Free Pattern

http://beatriceryandesigns.com/2013/09/23/amazing-grace-hat-free-pattern/

BRCA1 and My Family

My maternal grandma married young, at age 13.  By the time she was 20, she had been married twice and had children by both husbands. Over the next several years she added to her family, giving birth to a total of fourteen children, raising thirteen to adulthood.

In 1987 one of her younger daughters, my aunt, was diagnosed with Stage I breast cancer.  She had one breast and thirty-two lymph nodes removed.  Seven of the lymph nodes were positive for cancer.  She had reconstruction followed by chemo and has been cancer free for 25 years.  In 2011, she had prophylactic surgeries including a mastectomy and a bilateral oophorectomy.

In 2000, at the age of 70, Grandma was diagnosed with Stage IIIC ovarian cancer.  The doctors removed an eight pound tumor.  They said it was not a familial cancer because of Grandma's age at diagnosis.  Grandma fought a long, hard battle for almost eight years.  She often said the cancer would not kill her and planned to live until  96.  Unfortunately, Grandma passed away on September 10. 2008 at the age of 78.

Last year, 24 years after her initial diagnosis of Stage I breast cancer, my aunt tested positive for the BRCA1 gene mutation.  That one piece of information sent our family on quite a journey.  Shortly thereafter I found out one of my cousins, who is battling inflammatory breast cancer, also tested positive.  Since her mother passed away from ovarian cancer it was initially unknown as to which side of the family carried the BRCA1 gene mutation.  One would have thought that it was her mother who passed down the mutation, when it was in fact her father.

I tested for the BRCA1 gene in June 2011.  I received my results a few weeks later on my 43rd birthday.  The nurse at my doctor's office said she didn't understand the report, but she would read the results to me.  I knew exactly what it meant.  I had tested positive for the BRCA1 gene mutation.  I told my husband and began to cry.  I called my mom.  While I was on the phone with my mother, call waiting clicked in.  It was the nurse at my doctor's office calling back to tell me she had read the wrong report.  She did not know where my report was.  I waited for what seemed like an eternity.  What a great birthday present!  Just as I was about to call the doctor's office back, the phone rang.  They had found my report and I was negative for the BRCA1 mutation. I don't know how many times I asked, "Are you sure?"  What a roller coaster ride! I was emotionally worn out.

Two weeks later I met with my doctor.  I was still in doubt and wondering if I had been given the correct report.  Even after receiving it in writing, I still wonder if it's really true.  I had decided if I had the BRCA1 mutation I would have the prophylactic bilateral mastectomy and reconstruction.  Now what do I do?  I should be thankful and I am, but I struggle with the guilt that I am negative when so many members of my family are positive.  Why am I negative?  These are questions no one can answer.  It's the difference between a flip of a coin.  Each family member has a 50/50 chance of having the genetic mutation.  I won the coin toss.

To date four of my cousins have tested for the BRCA1 mutation.  Two are negative and two are positive for the mutation.  My mom and five of her sisters have also tested.  All of them are carriers of the BRCA1 gene mutation.  The remaining brothers who are alive have not tested.  Three of my aunts had prophylactic surgeries, two without complications.  Another aunt will be starting her surgery journey in the next few weeks.

We now know that Grandma passed down the gene in our family. It may seem extreme or unfair to some that my family has so many members dealing with this.  Many of us believe that it is a blessing the Lord has given us.  It is an opportunity for my family members to  make a choice to have prophylactic surgeries to greatly reduce their risk of breast and ovarian cancer.  I take comfort in knowing this journey has brought our family closer together.

I know the Lord is with us no matter what.  I know with His help, we can do all things. And we know that all things work together for the good for those who love God, to those who are the called according to His purpose.  Romans 8:28 NKJV

Bad things may befall us, but if we allow and seek His will, the Lord will help us through. Sometimes, we get so caught up wallowing in our pit of misery we forget to look and see what we can learn and what we can use to help others in similar situations.

by: Kristi Ward McMurtry
The Pink Moon Lovlies: Empowering Stories of Survival
published 2013



Since this story was published, much has changed. We now know that eight of Grandma's children are/were positive for the BRCA1 gene mutation.  Of my cousins, nine have tested.  Five are/were positive for the mutation.  One cousin was just recently diagnosed with Triple Negative Stage I breast cancer and had a bilateral mastectomy.  She will start 16 weeks of chemo soon. My cousin that was fighting inflammatory breast cancer lost her fight on April 3, 2014. She was 43 years old.

Genetics and You!

Is there a history of cancer in your family? If so, you may have a genetic marker. Having this knowledge could save or prolong your life. Maybe you don't want to know for yourself, but do you have children? Grandchildren? Don't take a chance, get tested!


http://informeddna.com/

https://www.ambrygen.com/

Fighting the Fight

https://bravelets.com/bravepage/dudley-family-brca1-fighting-the-fight

BRCA1 and BRC2: Cancer Risks and Genetic Testing

http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

Revelation 21:4 (NKJV)

And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away. 

The Story of a Cousin

For the past five years my sister Taresa Vandergrift very bravely faced cancer. January 2009 she was diagnosed with a very rare disease called IBC (inflammatory breast cancer) as well as tested positive for the BRCA1 gene. Since her diagnosis, our paternal side of the family has discovered that they too are carriers of this gene.

Of my grandmother's 13 children, 8 have been tested and are positive for the BRCA1 gene... 5 of her granddaughter's have tested positive. One of our cousin's, Heather, recently was diagnosed positive with triple negative stage 1 breast cancer and will now begin her own brave walk undergoing sixteen weeks of chemo...

Had this information not been shared with family members, this early diagnosis may not have been caught. Women in my family are more diligent about talking with their dr's. My hopes are that you too will have this discussion with your doctor, family member or friend. Early detection can save a life and change futures...

To honor Taresa and her brave walk with cancer, my cousin Kristi Ward McMurtry
has set up a page that will allow you to show your support and memorialize Taresa or someone close to you that is or has a brave walk ahead of them. Please visit, purchase, share and be BRAVE... Blessings, Jania

A portion of your purchase will go toward a memorial fund in Taresa's name.https://bravelets.com/bravepage/taresa-vandergrift-memorial

Pink Party!!

On April 2, 2014, Heather underwent a bilateral mastectomy. She was recently diagnosed with Triple Negative Stage 1 Breast Cancer. A few days before the surgery, a few of the aunts and some other family members got together and had a pink party. They also spent some time relaxing on the beach.

Breast Cancer Awareness

Hey you!! Take a minute and read this! This is my version of a "breast cancer awareness" post. 

When you do your monthly exams...do you know what you are feeling for? Because I didn't. Did you know that an easy way to feel a lump is in the shower with soap? I didn't. Did you know that cancer doesn't discriminate? You can be black, white, young, old, male, female, sick or healthy, it doesn't matter because CANCER IS A BULLY!.
So get educated. Do you have a family history of breast, ovarian, colon, prostate or pancreatic cancer? Then find out if you could be carrying a BRCA1 or BRCA2 gene mutation. I got tested and it probably saved my life. There's more to this than being "aware". You have to take control. Message me if you want more details about the gene or how to get tested.

If you do find a lump, don't freak out, most are cysts. Just get it checked out by a Dr. or you could wait for your next mammogram....and take your chances! I'm glad I didn't!


By: Heather G.