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Okay, you're BRCA positive, now what? Seven things to do

Updated on August 26, 2011

1. Talk to a genetic counselor:

This is an important first step. A genetic counselor will discuss the ins and outs of the BRCA(Breast Cancer) mutation, from statistics to family history to screening. Talk to your gynecologist about finding one in your area. Check a local cancer hospital. I was lucky enough to be living in NY at the time, so I visited a counselor at Memorial Sloan-Kettering Cancer Center. Talking to a counselor will help guide you on what your next steps should be. Also, check the FORCE (Facing our Risk Cancer Empowered) message boards for counselors in your area.

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2. See doctors:


Seeing specialists that specifically see patients with the BRCA mutation can help you feel more at ease. They know all about the mutation and see BRCA patients daily. Again, check local cancer hospitals, ask your gynecologist or if you can’t find BRCA specialists in your area and can’t travel to see them, try to find good, qualified doctors in your area. What type of doctors? For your breasts, a gynecologist is recommended, but there are breast specialists in some areas. The doctor will advise you to have both a MRI and mammogram of your breasts every year. I chose to alternate between a mammogram and a MRI every 6 months. You will also have 6 month checkups with this doctor. As for your ovaries, a gynecologist is recommended. A check up every 6 months with an ovarian ultrasound is what is recommended. You can also check the FORCE message boards for doctors in your area.

3. Surveillance:


I can’t recommend enough to get your 6 month checkups and your 6 month surveillance testing. Get your MRIs, mammograms and ovarian ultrasounds and see your doctors. Detecting a tumor in its early stages can save your life.

4. Research:


You can learn a lot on your own. Google BRCA and you will find many journal articles. Read books, see films about BRCA. I will recommend some in my next blog, BRCA: A previvor’s story, from discovery to empowerment. Remember knowledge is power.

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5. Talk to others and get support:


A great way to learn about the mutation and find others who understand what you are going through is on the FORCE website. The message boards cover just about every topic you can think of. If you can’t find what you are looking for, post a question and I guarantee you will get many helpful responses. If you have a local FORCE chapter, they typically have regular meetings, every month or every few months. There you will meet other women just like yourself. FORCE has a great program called SOS, which stands for Support our Sisters. They will match you up with someone in your area to talk to. I just had lunch with a woman who used the same doctors as I will for my upcoming procedure. It was great to talk to someone who understood my concerns and fears and who could answer all my questions. Plus, I made a new friend and really felt empowered after talking to her.

6. Attend a FORCE conference or local chapter meetings:


You can get so much out of the national FORCE conference. This normally takes place in Orlando, Florida every summer. I will discuss all about what to expect at a FORCE conference in my blogs titled, Let the FORCE be with you Parts I and II. Local chapter meetings are great for one on one time with other women. Both the conference and the meetings can be invaluable tools in your journey.

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7. Talk to a therapist:


Talking to a psychologist or social worker can help you sort through your feelings, worries, fears and concerns. I was lucky enough to be living in NY and saw a psychologist who specializes in seeing patients who are BRCA positive. I saw her soon after I got my results. This really helped in addressing all of the feelings that I was having.

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    • profile image

      siobhan 5 years ago

      3 days post op after hysterectomy/oopherectomy and feeling empowered already! I found out I was BRCA1 positive in February and decided I was not going to let it control my life!

    • profile image

      bicoastalwoman 6 years ago

      Excellent information and great advice. This writer has faced a life threatening situation and alarmed herself with facts. It is wonderful to have testing available to identify family members who are at risk for being BRCA positive. I admire her courage and her willingness to pass on this information to others to help save lives.

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      pat "pig" 6 years ago

      Good job well written with so much helpful information. looking forward to the next article.

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      drew "smilely" horn 6 years ago

      a great and well written article!!............who ever wrote this has deep sensitivity and a wealth of wisdom!!.it is refreshing & challenging 2 see the courage demonstrated by this writer 2 face their fear with knowledge and insight instead of letting the illness win by sitting in the corner powerless doing nothing....bravo

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      Susan 6 years ago

      Thank you for giving voice to your information, your choices and your experience.

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      Bklyn 6 years ago

      Having many family members who have dealt with breast cancer, I wish there was a blog like this to help them with the emotional issues they were feeling, at the time. I have passed your blog along to other friends now who can certainly benefit from your honest and forthright feelings. Best of luck on your journey. You are one brave lady. You will be helping so many others by writing about your experience. Strength in numbers!

    • justsayom profile image
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      justsayom 6 years ago from United States

      Lynnie23

      Thanks babe! And right back at you. It is great to know you.

    • justsayom profile image
      Author

      justsayom 6 years ago from United States

      Gayle20

      I will continue my blog, as I hope to help others through their own journey.

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      PJH 6 years ago

      nice blog! good information! Concise and informative, which is rare these days...

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      HLK 6 years ago

      right on ladies.................

    • profile image

      Lynnie23 6 years ago

      How kind of you to start this blog! When faced with something that is not only a physical issue, but a very emotional issue having as much information as possible can be so reassuring. Such great info! I am proud to be your friend. :)

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      gayle20 6 years ago

      My mother-in-law had surgery after finding two masses. I hope you continue your blog about your experience. I imagine this will help a lot of people.

    • justsayom profile image
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      justsayom 6 years ago from United States

      Great advice and thank you for your kind words.

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      gtmbale4 6 years ago

      Beautifully written, concise, clear and very non-threatening. When I was diagnosed with breast cancer I went for the screening for the BRACA and mine was negative however it was very comforting knowing that even if the test had been positive the counselor was very reassuring about life after the diagnosis.

      Cannot stress enough screening on a regular basis according to your physicians advice.

    • justsayom profile image
      Author

      justsayom 6 years ago from United States

      Thank you for your comments. I truly hope my blog will help others. Your kind words really mean a lot.

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      janels 6 years ago

      The courage it takes to go through this life-altering diagnosis is staggering by itself; but to further take proactive steps to control your own destiny--then to help and encourage others is awesome! This is a perfect example of how women helping women by letting them into their own private world to share their experiences can prevent heartache, anxiety, and even tragedy. Kudos to the author, who, by sharing her experiences, is helping women everywhere, and probably even saving lives!