Info about breast cancer in men

Men with BRCA mutations, especially men with BRCA2 mutations are at significantly increased risk for breast cancer when compared with other men.  Because only one percent of all breast cancers occur in men, it is often thought of as a woman's disease, perhaps even more so because the breast cancer logo is pink.

But men do get breast cancer and the disease can be particularly devastating for men because it is often diagnosed at a later stage.  Early diagnosis requires men to be aware of changes on their chests and can lead to successful treatment for breast cancer.  A number of organizations are seeking to raise awareness of the potential for men to develop breast cancer and to provide information to me about this disease, including His Breast Cancer Awareness.

Another great organization with support and information specifically for men is the John W. Nick Foundation which sponsors the MaleBreastCancer.org website.  As their logo says "men get breast cancer too!"  If your family has a known BRCA mutation, the men you love should be directed to these sites and should speak with a certified genetic counselor or medical geneticist about their risk.

Why go to the FORCE Annual conference?

The Joining FORCEs conference is an annual forum on hereditary breast and ovarian cancer. We welcome anyone concerned about hereditary cancer: cancer survivors, high-risk individuals, those with a BRCA mutation or family history of cancer, and health care providers who treat high-risk patients.

This year the Joining FORCEs 2011 conference will be held June 23-25, 2011 in Orlando, FL at the Hyatt Regency Grand Cypress. Please consider going. It will be the best and most informative three days you could possibly spend.

Silver linings

We often focus on the negative effects of surgical menopause to reduce ovarian cancer risk: the hot flashes,  the sexual side effects, dry skin etc.  But today I thought I would put together a list of the positive side of removing my ovaries.  Here is my list of the things that are great about no longer having ovaries:

1. No more fear of ovarian cancer.
2. No more periods, period.
3. No more anxiety from ovulation cysts that show up on my screening ultrasounds that result in repeated trips to the doctor and sleepless nights.
4. No more cyclical bloating and weight gain.
5. No more PMS.
6. No more yeast infections (so far!).

I was hoping to come up with a list of ten, but so far this is all that comes to mind.  Please add to the list with your own.  We spend so much time focusing on the negative that I think an attitude of gratitude can be found by a little focus on the positive.

Joi

This work is licensed under a Creative Commons Attribution-NonCommercial 3.0 Unported License. Inquiries regarding rights should be directed to the authors.

Happy anniversary Positive Results!

Today is the one year anniversary of the release of Positive Results!

A lot has happened in the the past year and we would like to take this opportunity to give both a quick review of the highlights of the year and to say a heartfelt thank you to all who have supported us, all who have purchased Positive Results, all who have recommended it to their friends and doctors, all who have sent us emails of appreciation, all who have written reviews, and all who have joined us on Facebook and on this blog.

Highlights from the past year include several studies that assess the risk of breast cancer after prophylactic mastectomy in BRCA-positive women, including:

• A March 2010 study in the Annals of Surgery, which concludes that prophylactic mastectomy "is highly effective in preventing invasive breast cancer in BRCA1/2 mutation carriers. Since the remaining risk is less than 0.2%/woman-year, continued surveillance of the asymptomatic carriers is not warranted."
• In contrast to this finding was a Danish study published in January 2011 the journal Clinical Genetics, which finds that post mastectomy breast cancer risk in BRCA carriers might be higher than previously thought and further surveillance of carriers after mastectomy might be needed.  We blogged about this study here.
• However, the largest study to date, published in September in the Journal of the American Medical Association found that prophylactic mastectomy was highly effective at reducing future breast cancer risk and in fact none of the women in this study who had prophylactic mastectomies went on to develop breast cancer.  We blogged about this study here and here and in fact our September 1, 2010 blog about this study remains our most popular blog post ever.

Other highlights from this past year include:

• April 2010: 
• Library Journal published a glowing review of Positive Results concluding: "VERDICT Morris's story and that of other women and men highlight the difficult choices involved. Full of practical advice, this book will be a boon to those at risk for breast cancer as well as their caregivers."
• San Francisco Book Review published a review that concluded: "Women with breast or ovarian cancer, their doctors and caregivers, and each and every single one of their family and friends — should all read this book."
  
• April 2010: A study about risk reducing bilateral salpino oophorectomy was published in the journal Gynecologic Oncology, which found this procedure may frequently leave behind small amounts of fallopian tube tissue, although what that means for future fallopian tube/ovarian cancer risk is unclear.  We blogged about this study here.
  
• June 2010: Dr. Gordon spoke at a session at the 5th Annual Joining FORCEs Conference.
  
• August 2010: Joi had surgery to remove her ovaries and her post Adios Ovaries remains one of our most popular posts.  She has done seven posts about her surgery, recovery and surgical menopause to share her story with others.
  
• September 2010: The creation of National Hereditary Breast and Ovarian Cancer Week and National Previvor Day.
  
• October 2010: 
• Dr. Gordon appeared on CNN in conjunction with Breast Cancer Awareness month.
• Dr. Gordon spoke about genetic discrimination at the 10th Annual Women's Health Conference in Pasadena, California.
• February 2011: Ms. Magazine published an article by Joi about genetic testing on their Ms. Magazine Blog.

In addition, a number of studies have been published about hormone replacement therapy and breast cancer risk.  None of these studies, however, have been in BRCA-positive women and therefore have done little to advance the knowledge base for managing surgical menopause and breast cancer risk for these women.

We look forward to sharing another eventful year with you.

Joi & Ora

Metastatic hereditary breast cancer research

For those of you who have been to a FORCE LA Outreach meeting you have heard me talk about the importance of participating in research studies so that we will have better answers in the future for those facing hereditary breast and ovarian cancer.  I feel strongly that our daughters and granddaughters will only have the information we need if we participate in research studies.

Metastatic breast cancer is a devastating disease and has taken the lives of too many women I know in the past few years.  40,000 women a year die of metastatic breast cancer each year.

For me, one of the names included in the mind-numbing statistic is Julie Ann Carpenter, a beautiful and vibrant woman my age to whom Positive Results is dedicated because she believed that information is power and because she desperately wished she had known about BRCA before breast cancer came knocking at her door. I remember the day she sat on the sofa in my living room and said "I have mets." I was shocked. We had just finished a workout and Julie looked to be the picture of health. She certainly did everything in her power to beat the disease, trying a succession of treatments, including experimental treatments as part of clinical trials. Some of these treatments bought her many months apparently disease free and looking as healthy as she did the day she told me her cancer was metastatic. In some cases she had more than a year of good health and time with her family and friends. Nonetheless, this relentless disease eventually took her life.

Researchers believe that BRCA and other hereditary metastatic breast cancers may respond differently to treatment than other breast cancers. The first step in determining the course of future research is to survey women with hereditary metastatic breast cancer about their treatment and response to treatment.  FORCE is participating in this research and so should you.  If you or someone you know has metastatic hereditary breast cancer please ask them to complete the survey at the following link.  It will only take a few minutes.  

https://www.surveymonkey.com/s/BTZQSJV