Resources

BRCA TESTING

Myriad is the company that did my genetic testing.  First of all, let me say, you should first see your doctor and discuss if you may be at risk and should seek genetic testing.  Here is a great test to take to see if you should speak with your doctor about genetic testing.

www.hereditycancerquiz.com A starting point to see if you need to have a discussion with your doctor about genetic testing.

www.myriad.com This specific site really explains what the BRCA mutations are and there is a video that does a good job of breaking it down.  This is the company that did my testing.  After getting my positive result, they mailed me a lot of easy to read information.

www.myriad.com/treating-diseases/heredity-breast-cancer/ This link is a fact sheet showing how much your risk is increased if you are positive.

www.mySupport360.com This is a link to the hereditary cancer quiz, teaches you about genetic testing,the process,and helps you find providers in your area.

ww5.komen.org/BreastCancer/LowerYourRisk.html The Susan G. Komen site is a great overall site and resource for anyone who has breast cancer, is at increased risk, or has a relative with Breast Cancer. This particular site goes over testing and who should consider testing.

www.cancer.gov/cancertopics/factsheet/Risk/BRCA This is from the National Institute at the National Institute of Health and is a pretty good BRCA1 and BRCA2 fact sheet.

www.mayoclinic.org/test-procedures/BRCA-gene-test/basics/why-its-done/prc-20020361 This site discusses why the testing is performed, who should consider testing, risks, how you prepare, what you can expect and results.

OK, I AM POSITIVE, WHAT DO I DO NOW?

www.breastcancer.org/symptoms/testing/genetic/pos_results This site explains test results and how to increase your odds of early detection!

ww5.komen.org/BreastCancer/RecommendationsforWomenwithHigherRisk.html A page that shows in paragraph and table form how often you should have a mammogram, manual breast exams, and MRI’s. You get a good idea of how often you will need to see your doctor.  This is EXTREMELY IMPORTANT!!!!  Even if you opt to have a prophylactic mastectomy you need to step up your screening.  Early detection is crucial!!

 SO I HAVE TALKED WITH MY DR. AND DECIDED TO HAVE A PROPHYLACTIC MASTECTOMY

http://www.breastcancer.org/treatment/surgery/prophylactic_mast This site is WONDERFUL overall. You can pretty much find everything you need here, but I wanted to give you a variety of places to look at so you know I’m not blowing smoke up your butt. On this particular page, it sums up and covers topics such as: What is a prophylactic mastectomy?, Is it right for you?, Prophylactic mastectomy and reconstruction, what to expect, risks of this procedure.

http://www.cancer.gov/cancertopics/factsheet/Therapy/risk-reducing-surgery The National Cancer institute is great at presenting information in short, compact, easy to read form. The information here is all based on science (as are the other sites) but it puts the information across in a straight forward manner. No fluff. They have a lot of fact sheets, and I LOVE Fact Sheets because they give you the down and dirty on one page and then you can decide what to look at from there. This fact sheet is particularly helpful. The topics are:

  • Types of surgery
  • How effective the surgeries are
  • Who may consider testing?
  • Is it an option if you are already diagnosed with breast cancer?
  • Potential harms of surgery
  • What are risk reduction options for those with with increased risk of breast cancer but not at highest risk?
  • What can you do if  you are at high risk but do not want surgery?
  • Does health insurance cover?
  • Who to talk to when considering surgery?

I DO NOT WANT A PROPHYLACTIC MASTECTOMY, MY DR. SUGGESTED TAMOXIFEN (EVISTA)

http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen Tamoxifen is a drug that is an option if you opt not to have a prophylactic mastectomy but want to be aggressive about preventative treatment. Topics covered are: What are the benefits?, medications to avoid while taking Tamoxifen, how long do you take Tamoxifen?, side effects, does insurance cover Tamoxifen?

RECONSTRUCTION OPTIONS

http://www.breastcancer.org/treatment/surgery/reconstruction/types This site covers all of your reconstruction questions. It covers different types, how they are preformed, what to expect with each, and risks of each kind of surgery.

http://www.cancer.org/cancer/breastcancer/moreinformation/breastreconstructionaftermastectomy/breast-reconstruction-after-mastectomy-types-of-br-recon Here you can view all of the different types of reconstruction including:

  • Implants
  • TRAM Flap (transverse rectus abdominis muscle) flap
  • Latissimus dorsi flap
  • DIEP flap (deep inferior epigastric artery perforator) flap
  • Gluteal free flap
  • TUG flap
  • Acellular dermal matrix

I am not going to explain each of these surgeries because I by no means am an expert and these sites do a much better job than I possibly could!

NIPPLE RECONSTRUCTION AND TATTOOS

For a lot of women, myself included, my breast would not be complete unless I had a nipple. Here are some options available.

http://www.breastreconstruction.org/SecondaryProcedures/NippleAreolaReconstruction.html You can read until your hearts content about nipple and areolar reconstruction. They even have a nice diagram that shows how the doctor constructs the nipple.

http://www.breastreconstruction.org/SecondaryProcedures/NippleAreolaReconstruction.html This man is AMAZING!!! His name is Vinnie Myers and he can tattoo a nipple that looks 3D and real. This is the article, the following link is a video you can watch. Simply AWESOME! I had never heard of him, but my friend Mary from nursing school sent me this link. Thanks Mary! Here is the video:

http://www.wjla.com/articles/2013/11/nipple-tattooing-artist-vinnie-myers-helps-breast-cancer-survivors-96904.html When you hit play, there is a short add and then the video will start. It is graphic, it actually shows his process and final product. This guy has made many, many, many women very happy.  

MY FAVORITE SITE

http://www.wjla.com/articles/2013/11/nipple-tattooing-artist-vinnie-myers-helps-breast-cancer-survivors-96904.html Once I made the decision to have a bilateral mastectomy I began to research reconstruction. This is a great overall site. It’s not only for those with high risk, but those who already have breast cancer.  It covers everything from getting started, what to ask your doctor, history of breast reconstruction, immediate vs. delayed reconstruction, radiation and reconstruction, prophylactic mastectomy, types of mastectomy, secondary procedures (exchanges,revisions,nipple reconstruction and tattoos), and pre and post-op care.

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