WHY Didn't I Have a Mastectomy?

I carry the BRCA2 gene mutation, I have had several bouts with breast cancer and I have NOT had a mastectomy- WHY?

When I was approaching 35 years of age, I had my first baseline mammogram since I have a maternal aunt (now 97!) who had breast cancer along with a mastectomy while in her 70’s.  When I was 36, my mother (now 88) was diagnosed with breast cancer also in her 70’s and I was reminded it was time for my annual mammogram. One month following my mother, I too was diagnosed with breast cancer. Over a span of eleven years I had 4 positive breast cancer diagnosis, 7 surgeries including lumpectomies on one breast, the Sentinel lymph node tested and was treated with six weeks of radiation and Tamoxifen for five years.

When my husband and I met with my breast surgeon after my second recurrence (18 months after my original diagnosis) we asked, “what can “we” do”? The answer at that time was, “we will keep a close watch and have a mammogram every 6 months”.  We decided that was not enough and after a great deal of research, realized there are things that we can do to help ourselves.  My husband and I sold our chain of drugstores and went into the business of a health food store. Our lifestyle changed to organic foods, a better exercise regimen, ways to reduce our stress and a full regimen of nutritional supplements.

After my last diagnosis, I decided to go for genetic testing and was diagnosed with the BRCA2 mutation. I then had a full hysterectomy (oophorectomy) due to the higher risk of developing ovarian cancer as well and the difficulty in an early diagnosis.  Sharing this information with my husband, sons and brothers, at that moment it was obvious that all of our lives would change from that point forward.

Having the BRCA2 mutation puts family members that also carry the gene at a higher risk of Prostate, Pancreatic, Stomach, Melanoma and other cancers. A few years later my brother was diagnosed with Male Breast Cancer and then Prostate cancer and after testing we know he is also a BRCA2 carrier. This means our sons (between us we have 5) now have an increased risk of also carrying the mutation and higher percentage of these cancers.

So, you ask why did I not have a mastectomy? For me, I have always felt like I do everything I can for prevention and/or an early diagnosis with a mammogram at 6 months and a breast MRI at the next 6 months. Every person’s body makes cancer cells, however having the BRCA mutation; our body is unable to destroy them. Since it appears my cancer cells go to my breast (4 times…) I feel having them helps me to find and remove the cancer. If I take away my breast, where will the cancer go? And how will I find it? Keeping my breast actually puts my mind more at ease! Having had the hysterectomy, I removed the area that is harder to diagnose. 

What I do believe is everyone is different and how we each deal with a situation is an individual decision. I appreciate what Angelina Jolie has done for her and her family. Her children (male and female) will grow up to make their own decisions about what works for them, if they too are carriers. My 3 sons have not been tested yet, however they live their life with the awareness they may be at a higher risk for a cancer diagnosis. If one or all of them are carriers, then it will be their decision as to whether they have a prophylactic mastectomy for Male Breast Cancer or take a more cautious road and keep a close watch as for all cancers. Either way, they are educated, informed and aware and that is the first step in the right direction.

My brother and I created the non-profit organization, HisBreast Cancer Awareness to help educate others about Male Breast Cancer and the BRCA genetic mutation. It’s important men know they too have breast, are aware if they have a family history of these cancers they may also be a BRCA carrier and they know what their options are if they choose to be tested. Men and women need to be educated for themselves and for their children, both daughters and sons.

Modah Ani- I Am Thankful

Editor; Vicki Singer Wolf, Co-founder

Should Men Have a Mastectomy?

You’re a guy, with a family history of breast cancer, you become educated and decide to have genetic testing done and you test positive- do you have a prophylactic double mastectomy?

In today’s news it’s everywhere- Angelina Jolie tested positive for the BRCA gene, her mother died from breast cancer and she has chosen at 37 years of age to have both Breast removed as a preventive measure. What if you’re a guy? What about Angelina’s son?  What if you’re Grandmother, mother, aunt, sister had breast cancer or were tested positive for the BRCA mutation?  Well guess what- this is not just a woman’s disease and men need to be educated just as much!

Let’s talk about the specifics on testing for the genetic mutation, BRCA. Diagnosing if you have the BRCA mutation is accomplished by a blood test. Testing may or may not be covered by insurance depending on individual coverage as well as your family history risk factors. In addition, being a male, will add its additional challenges.   It is recommended you obtain all of the detailed information and receive genetic counseling prior to testing regarding the risks in case you receive a positive diagnosis so you are emotionally prepared for the changes in your life that will need to occur.

There are two types of mutation; BRCA1 and BRCA2, each with their own higher risk factors. The names BRCA1 and BRCA2 stand for breast cancer susceptibility gene 1 and breast cancer susceptibility gene 2. When there is a mutation of the gene, there is difficulty with prevention of uncontrolled cell growth and they can grow cancer. In women, there is a higher risk of developing breast and ovarian cancer and depending on whether it’s BRCA1 or 2 other cancers are at an increased risk as well. When a male is diagnosed with the BRCA1 mutation, there are increased risk of Breast, Pancreatic, Testicular and Prostate cancers. A BRCA2 mutation has an increased risk of Male Breast Cancer, Pancreatic and Prostate Cancers. Additional cancers such as colon, stomach, gallbladder and melanoma are also at a higher risk however there are more statistics for women (pre and post menopausal) than for men. 

So you’re a guy, with a family history of cancers; maybe a mom withbreast or ovarian, an uncle with prostate or pancreatic. You didn’t really think that the two were related but now you’re thinking twice about it (hopefully!).  You thought, my mom had breast cancer and maybe her sister (your aunt) did too, but that’s not important to me, only maybe a sister if you have one. Now you know more! You can be at risk for breast or other cancers too! What should you do?

First, get educated. Information can be a great tool. I had several bouts with breast cancer and that’s why I had BRCA testing done. Although I have 3 sons (no daughters) and two brothers, I had an aunt and my mother who both had breast cancer as well as uncles who died at a young age from other forms of cancer. I wanted my family to be educated.  Now after having my brother Harvey diagnosed with breast cancer as well as prostate cancer, we know that he and other members of our family also carry the BRCA gene mutation. Our sons are at a higher risk of carrying the gene and developing cancer. None of us to date have elected to have a prophylactic mastectomy however we do believe strongly in surveillance and have made many life style changes to help in prevention and fight our odds.  My sons and nephews have not been tested yet, however there will be a day when they will need more information and most likely will be.  If so, they may choose a preventive method such as mastectomy; each person needs to do what works for them, what puts their minds at some ease.  Until then, we choose to eat healthy, exercise, take nutritional supplementation and have a positive mental attitude but most importantly, we watch and listen to our bodies. Men can perform a self breast examination and learn their breast so they know if there is a change-just like a woman.  For men, an inversion at the nipple as well as any lump or discharge is a warning, so don’t wait, get it checked because men do get Breast Cancer.  Know your family history; think about having genetic testing and you may choose the “Jolie” way for prevention. Also, men can have cosmetic surgeryfollowing a mastectomy, just like a woman.

There’s so much more information available than I can fit into this so please view the links below to learn more about BRCA Genetic testing and Male Breast Cancer; then you can make an educated decision, learn your risks and take the right preventive measures for you whether that includes a ProphylacticMastectomy is up to you.

HIS Breast Cancer Awareness

http://hisbreastcancer.org/

FORCE- Facing Our Risk of Cancer Empowered

http://www.facingourrisk.org/index.php

Cancer.gov

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

Or

http://www.cancer.gov/cancertopics/pdq/treatment/malebreast/Patient

Moffitt Cancer Center

http://www.moffitt.org/research--clinical-trials/partnerships--studies/icare/overview

Best of Health,

Modah Ani- I Am Thankful

Editor; Vicki Singer Wolf, Co-Founder