Stacy's BRCA Story
San Francisco, California
London, United Kingdom
My BRCA Story Stacy Goodwin
My story began on October 11, 2011 with an "envelope". I went to my OB/GYN with some ovary issues . It was those issues that led my OB/GYN to suggest that I be tested for the BRCA gene mutation.
There is a strong family history of breast cancer on my mother's side of the family. My mom was diagnosed with breast cancer at the age of 34 and had a mastectomy, but the cancer eventually took her life at the young age of 37. The history of breast cancer was not only with my mom but my grandmother who lived to be 78, and also my grandmother's sister who lived to be in her early 70's, In addition, my mom's cousin passed away in her early 30's. At the time of my mother's death, my siblings and I were living with my father and step-mom. I was 16, my sister was 7 and my brother was 12. My parents were divorced, my dad had remarried and our step-mom took us under her wing and raised us as her own. I am eternally grateful for her and everything she has done for all of us.
I agreed with my doctor to be tested for the BRCA gene mutation. My blood would be drawn, and the results he said, "Would be back in a couple of weeks". About 2 weeks later I went into the doctor's office to get the results from my BRCA gene test; I was told in the office by my doctor that I was NEGATIVE for the BRCA gene mutation. I was very relieved knowing that I was now not at high risk for developing breast or ovarian cancer. My doctor proceeded to tell me to take "my envelope" with a copy of the results that he had just verbally given me-- to keep for my records. As I walked out of his office to check out I asked again, "so I have nothing to worry about and there's no chance my children will have the gene?" He reassured me that I had nothing to worry about and that my ovary issues would be kept under surveillance with ultrasounds. I walked out of the office happy that I was not a BRCA gene mutation carrier.
After having the BRCA gene test and getting my negative BRCA gene mutation result, I told my younger sister the good news.
My sister was about to embark on her own genetic testing and I decided to give her my genetic test results to take with her to her own appointment. I still had not looked at my test results; I just gave her "my envelope" to take with her to her appointment.
The story of "my envelope" was not over. My life and my family's life was changed forever on November 1, 2011. My sister Jessica went to see a genetic counselor for her genetic testing and she let the genetic counselor know that I had already taken the BRCA gene test. She informed the counselor that my test indicated that I was negative for a gene mutation. The genetic counselor asked my sister if she happened to have my genetic testing results with her...so Jessica handed the counselor "my envelope" with my genetic test results.
The genetic counselor opened my envelope, read the results , and with her jaw dropped to the floor, told my sister that I was not negative but that I was in fact POSITIVE FOR A DELETERIOUS MUTATION.
Once my sister, parents and husband broke this news to me, my sister got me in immediately to meet with her genetic counselor to discuss my test results. I was devastated. Jessica was upset that she had to tell me the news. We were both blown away that my doctor was incapable of reading/interpreting the test results. Honestly, I don't know why I never looked in my envelope. I took my doctor's word that I was negative for the gene mutation. In the midst of all this happening, Jessica was gene tested and her results would be back in a week.
Everything was a blur. It was very upsetting to think that I had done the right thing by being tested, just to have it misread by my doctor. While trying to grasp all this information, I was dealing with another medical issue. I was diagnosed with multiple sclerosis in February of 2011. I was trying to come to terms with that and it was all very overwhelming. From a genetic counselor's standpoint, they are required to call the physician that ordered the gene test and tell them that their patient was actually POSITIVE FOR A DELETERIOUS MUTATION. My gynecologist called me and was trying to talk his way out of the fact that he had made a mistake reading my test results. I told him I would no longer be his patient and I requested all of my medical records from him so that I could begin a consultation with a gynecological oncologist, breast doctor, etc.
One week later-November 7, 2011, my sister returned to her genetic counselor for her test results--she tested positive. In December 2011, both Jessica and I went for oncology consultations and proceeded with breast MRI's, CA-125's for ovarian cancer detection, and breast and ovarian ultrasounds. My sister had a breast MRI and it showed an abnormal area. She was told a few days before Christmas that she would need to have a biopsy. Fortunately, Jessica's biopsy came back all clear and she began consulting with a breast doctor and a plastic surgeon to begin scheduling her nipple sparing, skin sparing prophylactic (preventive) bilateral mastectomy with immediate reconstruction.
I consulted with a gynecological oncologist for a bilateral salpingo oophorectomy--the removal of both ovaries and both fallopian tubes (also known as a BSO). My surgery was scheduled for February 15, 2012. Surgery went well and as per normal protocol, all of the tissue removed was sent to pathology. On February 24, 2012, the pathology report came back and I was now faced with the word "cancer". Cancer was found in the fallopian tubes and I was in the early stages of ovarian cancer, Stage 1C. My husband was in the room when the doctor gave us the results he held back the tears and said, "we will get through this together".
Now instead of being relieved, I had to discuss chemotherapy (Carboplatin and Taxol) and how it would affect my multiple sclerosis. I started chemotherapy on March 15, 2012, and had to have treatment every 21 days. It was very difficult for me. I always had beautiful long blonde hair and I was faced with the fact that the chemo would take it all away. I lost my hair after the first chemo treatment but prior to treatment I had my hair cut short and my sister dyed it a dark brown. I hated it but this was something I could do to be in control. One week after chemo, my hair was falling out in clumps and my husband grabbed the clippers and shaved off the rest of it. I was now bald. My husband said he would rather me be here bald, with him and our children. then not be here at all. The chemo took its toll on my body; my blood counts were low and the day after chemo I would return to the office for a neulasta injection that would literally make my bones ache among other side effects--like loss of appetite, nausea, and dehydration. The dehydration would always have me returning to the office for IV fluids. Eventually, I regained my strength, and then it would start all over again 21 days later with another chemo treatment.
My last chemo treatment was on May 17, 2012. My sister Jessica had a nipple sparing and skin sparing prophylactic bilateral mastectomy with immediate reconstruction on May 16, 2012. I was upset that I could not be at her surgery. However, she did quite well and I am so proud of her for having the prophylactic breast surgery.
I had a total hysterectomy on June 13, 2012. The surgery went well with no complications and I am well on my way to recovery. The pathology reports came back from the hysterectomy that I am CANCER FREE!! I am now not only a PREVIVOR but I am also a SURVIVOR!!!
I am now doing routine breast ultrasounds, MRI's, and blood tests since I am still high risk for breast cancer. I am also following up with my multiple sclerosis by taking daily injections to prevent a relapse. I plan on moving forward with breast surgery and having a nipple sparing, skin sparing, prophylactic bilateral mastectomy in June of 2013.
I am so thankful for the support of my husband and my family through out this whole ordeal. I am glad that I had the oophorectomy and that the cancer was detected early enough; I was given another chance in life to see my children grow up and to grow old with my husband.
I am a firm believer in "everything happens for a reason"-because for whatever reason, I gave my sister my genetic test results. The day I handed my sister "my envelope" with my genetic test results was the day that she saved my life. I love you dearly Jess--and I will always be eternally grateful to you.
This is my journey and my experience. Always do your own research and consult with your own medical professionals.
My experience shows how important it is to go to a genetic counselor for genetic counseling and testing--not just your regular OB/GYN or another type of doctor for this test. A genetic counselor is specifically trained on how to counsel before the testing, after the testing, and through your journey . Once you have made the appointment with the genetic counselor, they will be with you every step of the way for support and to answer any questions.
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