Myriad has a strong Patient Ambassador program for our hereditary cancer syndromes. The Lynch Pins® and the BRAC Pack® are a coalition of men and women dedicated to the mission of increasing awareness around hereditary cancer risk for Lynch syndrome and Hereditary Breast and Ovarian Cancer syndrome. Their role is to motivate people with a strong family history to take charge of their health by talking to their healthcare providers about their personal risk and whether hereditary cancer testing is appropriate for them.
Robert: BRAC Pack Patient Advocate
Robert had no idea that men could get breast cancer. He is a 52 year old man who has survived stage 3 breast cancer and prostate cancer.
In October of 2006 he found a lump in his left breast. When he went to his doctor for a regular checkup he mentioned his lump. The doctor took one look and immediately sent him in for a mammogram, sonogram and needle biopsy. Results of these tests determined that he had breast cancer, so Robert had a radical mastectomy. During this procedure his doctor found a 2.5 centimeter tumor and 25 lymph nodes were removed - 5 of which tested positive for cancer. With a stage 3 cancer Robert went through 8 treatments of chemotherapy and 36 radiation treatments.
Because of his breast cancer diagnosis and the fact that Robert is of Ashkenazi Jewish descent, in 2007 his physician recommended genetic testing and he tested positive for a BRCA2 gene mutation....more
Robert is very diligent about his yearly physical and cancer checkups. During a routine exam his physician noticed elevated PSA levels (PSA levels can help determine risks for prostate cancer). His PSA level was not astounding, but because it was higher than normal and he is BRCA2 positive (prostate cancer is more prevalent in BRCA2 carriers) his doctor felt it important to have a biopsy for prostate cancer. Robert was diagnosed with stage 1 prostate cancer; he had a prostectomy in July of 2009. Because it was stage 1 and the surgeon was able to get clean margins on its removal, Robert did not have to go through the rigorous treatments he did for his breast cancer.
The result of Robert's genetic test gave his physician the information needed to understand the importance of a high PSA level and a positive BRCA2 test result. He is convinced that because of his positive test result for a BRCA2 mutation he has been able to take measures to catch cancer early.
Jodi: Why I Got Tested
Jodi's son Henry is 19 years old and away at college. Still to this day Jodi's favorite thing to be called is Henry's mom.
Jodi's first husband passed away from a long illness when Henry was 7 years old. Five years later, Jodi's mother died of ovarian cancer after an 8 year battle.
Jodi began talking with doctors even before her mother passed away about genetic testing. She did not want to get ovarian cancer but, more importantly, she was terrified of leaving Henry. Her doctor repeatedly assured her she had nothing to worry about and did not need to be tested. This did not sit well with Jodi.
In 2008 she went to see a primary care physician about allergies. While sitting in the waiting room she spotted a poster about BRCA testing. She asked about testing and the process was started immediately. Jodi tested positive and was referred to two different oncologists....more
Neither of the oncologists would see Jodi because she did not yet have cancer. Jodi was frustrated and in an effort to help, her husband decided to call the number on the back of her test result. The number went to Myriad Genetic Laboratories where Jodi was given some information about Hereditary Breast and Ovarian Cancer syndrome and a list of doctors in her area who were knowledgeable about BRACAnalysis®.
Jodi also reached out to a support group and found other women who were in various stages of their BRCA journey. This reinforced her decisions for surgery and through them she found excellent surgeons.
Jodi had a prophylactic bilateral salpingo-oophorectomy (ovaries) in January and her prophylactic bilateral mastectomy (breasts) in the following April. Although it took her about seven years to be tested for the mutation, it took fewer than four months to have all the surgeries to reduce her risk of developing breast and ovarian cancer.
Losing her first husband and mother to long suffering illnesses taught Jodi many things. The most important of these is to never take time for granted. She strives to enjoy each day and knows that she can always get more material possessions, but can NOT get more time with those she loves. She wants to do everything she can to raise awareness about hereditary cancer testing because she knows firsthand how it can make a difference.
For more information and to hear from other patients, visit MySupport360. This website helps guide patients and family members through the genetic testing process, provide valuable information along the way and an avenue for which to hear from others that are facing the same decisions.
Visit MySupport360 and begin your journey: