Online Support Communities

Did you just find out you have a high risk of hereditary breast and ovarian cancer?  Feeling overwhelmed?  Feeling bombarded by all the information out there?  Trust me, I’ve been there!  A big internet hug to you.  If you don’t know where to start, here is my simple holy-sh*t-I’m-high-risk 3 step plan of what to do next.  

Step 1: Find your community.   

I can’t recommend this enough.  Find a community that’s the right fit for you…  I waited for five whole years to do this!!  And finding support from a community of women my age turned out to be the best and most important step in my journey.  Please, please do this.  There are many online groups for women who want to get their questions answered.  Feel free to join one of our groups and start asking questions immediately.  Not sure where to start??  Well, you’re in luck!  Here are several amazing private online groups.  Just click their icons below to join!

 

Sisterhood

BRCA Sisterhood is one of the first and most established groups for women with BRCA.  Founded by Teri Smieja and Karen Malkin-Lazarovitz, this group has something for everyone with over 4000+ women an growing!  I co-moderate the group and am proud to be a part of it.  Rules include:  Women only, you must be part of the HBOC community.  Request to join here.

 

BRCA Commons Logo

BRCA Commons is a group for people who are passionate about finding smarter options to screen for, treat, and prevent hereditary cancer.  Do you like geeking out about personalized medicine, policy issues, data sharing, and research?  This is the group for you!!  We welcome advocates, members of the HBOC community, and researchers.  Request to join here.

 

MyDestiny

 

Prophylactic Mastectomy, moderated by the My Destiny Foundation, is a group for women facing high risk of Breast and Ovarian cancer.  This group is full of humor, support, love and for women of all ages.  This is a fun loving group that has been known to send their  new members tiaras.  Request to join here.

 

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Beyond the Pink Moon.  Beyond the Pink Moon, founded in July 2010 by BRCA2 breast cancer survivor and author Nicki Boscia Durlestor and co-moderated by BRCA1 previvor, Melissa Johnson Voight, is a closed Facebook group for survivors, previvors, healthcare professionals and anyone whose life has been touched by breast and ovarian cancer and the BRCA gene mutations. It is an active forum for discussion with a focus on breaking news within the breast and ovarian cancer and BRCA communities. Members, who call themselves the Pink Moon Lovelies, are encouraged to share their stories. Fifty of those stories were published in a collection entitled The Pink Moon Lovelies: Empowering Stories of Survival with a Foreword written by renowned breast surgeon, Dr. Kristi Funk. The number one goal of Beyond the Pink Moon is saving lives.  Request to join here.

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FORCE Local Groups:  If you prefer to meet in person, the national nonprofit Facing Our Risk of Cancer Empowered has many local meetups where women have a chance to talk and share their experiences in person.

 

 

 

 

Step 2: Find a good doctor and make sure they connect you with a genetic counselor.  

Here is a quick-and-easy guide to finding a good doctor.  Some doctors know more about BRCA than others….try to find an oncology center that has experience with BRCA, and other high-risk mutation.  Many treatment programs have a genetic counselor on staff.  If not, there is a service called Informed DNA that can connect you with a genetic counselor from anywhere!!

Also understand that some mutations – or ‘variants’ –  in your genes are completely harmless.  There could be changes in your DNA that show up on a genetic test that actually don’t increase your risk of cancer.  This is why genetic counseling is so important!!  There are also variants where we don’t yet have enough data to know whether the change in your DNA is harmful or benign.  Before making any big decisions about risk reducing surgeries, make sure you talk to a certified genetic counselor who has training to interpret your results.  Unfortunately primary care doctors, oncologists, breast surgeons, and plastic surgeons do not have the right training to know whether or not your variant is harmful.  You don’t want to make a big mistake by moving forward with surgery without consulting with the right experts!!

 

Step 3:  Make informed decisions.

 It’s homework time!!  I recommend FORCE to find out the latest information about the options above.

This is the tough part.  And for each and every woman the plan is a very personal decision.  You must be at peace with your own choices on your own timeline.  This is also the point at which I recommend arming yourself with information about BRCA.  Here are the options I was given when I first tested positive:

  1. Close Surveillance.  Breast surveillance typically includes regular mammograms and MRI’s, every 6 months.  Ovarian surveillance typically includes sonograms and a CA-125 blood test every 6 months.  (PS – I went the surveillance route for 6 years before I decided to move forward with a prophylactic bilateral mastectomy).
  2. Prophylactic Surgery.  Many women choose this option to reduce their risk.  Prophylactic Mastectomy and Oophorectomy procedures come with a whole range of options.
  3. Chemoprevention.  This option includes taking Tamoxofin and other drugs, which are also used in the treatment of breast cancer.
  4. Lifestyle Changes.  Eat your vegetables.  Do some yoga.  Manage stress.  These things are easier said than done, right?  Right!  This option should be combined with any and all of the above.

These days ‘high risk’ includes so much more than a BRCA positive diagnosis.  There are many genes associated with cancer risk, and mutations we haven’t discovered yet.  But you may face an uphill battle to get the right information.  Not all doctors are well trained in how to deal with BRCA patients.  YOU are responsible for educating yourself, and being your own advocate.

Give yourself some time to think, and take time to step away from it all.  Take care of yourself, and know that you are going to be just fine.  You are not defined by your genes.  You are still the same person, you just know something more that yourself didn’t know before, and this gives you the power to make medically informed decisions about your health.

DISCLAIMER:  I’m not a doctor – just hoping to point you in the right direction if you are feeling lost!!

3 Comments

  1. Thanks so much for taking the time to put this great resource together. You are the bomb-diggity bloggiest blogger!

  2. This is an excellent post. Could you add FORCE to your list of communities though?

    –Robin

  3. Robin – Done and done! Thx for the input!

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