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Tested for the breast cancer gene?
The Family Secret
It was March 2009, my mom had called to say she was being called back for a repeat mammogram. As a Radiology Techonogist I knew this happened often and a lot of time they turn out to be negative. Since mom always had her yearly mammogram I wasn't worried. The repeat mammogram turned into an ultrasound and then a biopsy. Mom is a very strong person emotionally, so I wasn't surprised when she didn't care to have anyone with her for the biopsy. Two days later she called again, this time upset, her test results were back it was Cancer and she was seeing a breast surgeon in a few days. I thought to my self, how much crazier could this get, my friend was diagnosed 5 months earlier, my mother in law had just had a mastectomy and now my mom? I was a little in shock, but switched into survial mode quickly.
Mom, Dad and I met with the Breast Surgeon later that week. It was at that appointment that I heard BRCA for the first time. While mom was talking with the Doctor she told her of all the family members she knew who had Breast or Ovarian Cancer. Which included a grandmother, sister, two female cousins and one male cousin. We had moved out of state when I was young so I did not remeber most of these family members. The Doctor wanted mom to get as much family history as she could and get tested for the BRCA gene asap. The results would determine if the Doctor would recommend a lumpectomy or bilateral mastectomy and hysterectomy. So off to the Oncologist we went.
Mom contacted her cousins in the mean time and that is when we learned of the "family secret". One of her female cousins tested positive for the BRCA2 gene years earlier. I was so upset and angry, how could they keep this to themselves as if it was a curse they didn't want to share. It was knowledge that could allow other family members to take preventative action! I could not help but think if they would have shared this earlier , would my aunt's and mom's cancer have been prevented?
Mom's blood was drawn and it was a very long two weeks. We were becoming impatient because this would direct her course of treatment. She tested positive and had bilateral mastectomies in May 2009. She had a very long recovery ahead of her, but we were very thankful it was caught early and she only required the Arimidex pill.
After mom's first breast surgery was complete I decided to get tested. I also tested positive for the BRCA 2 mutation. I had my first appointment with the Breast Surgeon to discuss my options. It was explained to me that with my strong family history it was not a case of "IF" I got cancer but "WHEN". We discused that because mom was diagnosed at age 49 and the other family members were in their 40's I would need to have prophalactic mastectomies around age 35 but no later than 38 as well as a hysterectomy. I was 29 and at that time I expressed mine and my husbands desire to have another child, and I wanted to be able to take a true "maternity leave" to bond with my child. It had taken me a years to save just for that maternity leave and it would take me five years to save up enough sick time again to allow to have aple time for the expected future surgeries. So I started my Mammograms and MRI's every six months, as suggested and started planning the addition to our family.
My husband, son and I welcomed our daughter in 2010. The final additon to our family. Since my moms diagnose that set this rollercoaster in motion I have have stayed very busy, weather it be helping her with her recovery, having a baby, transitioning to a family of four, and having a very busy job. It has been easy to put the thoughts of my own diagnosis on the back burner. in my mind. Things have now slowed down a little in my life a I have been thinking more and more about my diagnosis. Two weeks ago I started to have a lot of anxiety concerning my upcoming mammogram. The thought of "Will I dodge the bullet this time" kept going through my head. The day of my mammogram had arrived and I was very anxious, I knew if there was anything concerning I would not be released right away. Once the images were finished the technologist released me. As I was changing I felt a sigh of relief, I had made it. It was one hour later when a friend/coworker called me and said I needed to comeback for an ultrasound, a density was seen on one of the images. My heart sank, I couldn't help but think "I didn't dodge the bullet this time", something that had been haunting me for days. It was a very long drive back to the clinic. I prayed the entire way " Lord let Your Will be done, you know the plans you have for me, I give it all to you". During the ultrasound I sobbed and prayed quietly, thinking "have I waited too long"? What will this mean to my family, my children are so young still. It seemed like it was taking forever to image half of my breast, " did she find it, or is she still looking? I was very relieved when the Radiologist said there was nothing to worry about at this time, what was seen did not appear on ultrasound but because of my history she wanted to make sure and that I could just follow up in six months with another mammogram and ultrasound.
For as long as I can remember I have never had a good self image of my breast and have always joked that I would just like to chop them off and start over. Have a more managable size, be perky, not have to wear a bra, etc. Little did I know that this would be my fate. Now I know I want to have Propohalctic Mastectomies with Reconstruction, because it is the only way to reduce my risk by 90%. I still have a hard time imaging myself walking into the Dr's office and saying, I'm here to volunteer to have my breast removed. But I will do it so that my husband, son, daughter, sister, and parents will not loose me to cancer because I was afraid to make that choice. I am very thankful to have a wonderful support group of family and friends as well as an online support group of other BRCA+ women who share the same struggles.
I often wonder if I have passed this genetic mutation on to my children. I hold onto hope that there will be more medical advances when it comes their time to be tested and I will be by their side if they should have to make the same decisions. I will not hold on to this family secret, but will share it with future generations so that they may be empowered. My faith in Jesus Christ keeps me going , knowing that he is walking with me daily and he knows the big picture, even if I'm struggling to see it.
Mom, Dad and I met with the Breast Surgeon later that week. It was at that appointment that I heard BRCA for the first time. While mom was talking with the Doctor she told her of all the family members she knew who had Breast or Ovarian Cancer. Which included a grandmother, sister, two female cousins and one male cousin. We had moved out of state when I was young so I did not remeber most of these family members. The Doctor wanted mom to get as much family history as she could and get tested for the BRCA gene asap. The results would determine if the Doctor would recommend a lumpectomy or bilateral mastectomy and hysterectomy. So off to the Oncologist we went.
Mom contacted her cousins in the mean time and that is when we learned of the "family secret". One of her female cousins tested positive for the BRCA2 gene years earlier. I was so upset and angry, how could they keep this to themselves as if it was a curse they didn't want to share. It was knowledge that could allow other family members to take preventative action! I could not help but think if they would have shared this earlier , would my aunt's and mom's cancer have been prevented?
Mom's blood was drawn and it was a very long two weeks. We were becoming impatient because this would direct her course of treatment. She tested positive and had bilateral mastectomies in May 2009. She had a very long recovery ahead of her, but we were very thankful it was caught early and she only required the Arimidex pill.
After mom's first breast surgery was complete I decided to get tested. I also tested positive for the BRCA 2 mutation. I had my first appointment with the Breast Surgeon to discuss my options. It was explained to me that with my strong family history it was not a case of "IF" I got cancer but "WHEN". We discused that because mom was diagnosed at age 49 and the other family members were in their 40's I would need to have prophalactic mastectomies around age 35 but no later than 38 as well as a hysterectomy. I was 29 and at that time I expressed mine and my husbands desire to have another child, and I wanted to be able to take a true "maternity leave" to bond with my child. It had taken me a years to save just for that maternity leave and it would take me five years to save up enough sick time again to allow to have aple time for the expected future surgeries. So I started my Mammograms and MRI's every six months, as suggested and started planning the addition to our family.
My husband, son and I welcomed our daughter in 2010. The final additon to our family. Since my moms diagnose that set this rollercoaster in motion I have have stayed very busy, weather it be helping her with her recovery, having a baby, transitioning to a family of four, and having a very busy job. It has been easy to put the thoughts of my own diagnosis on the back burner. in my mind. Things have now slowed down a little in my life a I have been thinking more and more about my diagnosis. Two weeks ago I started to have a lot of anxiety concerning my upcoming mammogram. The thought of "Will I dodge the bullet this time" kept going through my head. The day of my mammogram had arrived and I was very anxious, I knew if there was anything concerning I would not be released right away. Once the images were finished the technologist released me. As I was changing I felt a sigh of relief, I had made it. It was one hour later when a friend/coworker called me and said I needed to comeback for an ultrasound, a density was seen on one of the images. My heart sank, I couldn't help but think "I didn't dodge the bullet this time", something that had been haunting me for days. It was a very long drive back to the clinic. I prayed the entire way " Lord let Your Will be done, you know the plans you have for me, I give it all to you". During the ultrasound I sobbed and prayed quietly, thinking "have I waited too long"? What will this mean to my family, my children are so young still. It seemed like it was taking forever to image half of my breast, " did she find it, or is she still looking? I was very relieved when the Radiologist said there was nothing to worry about at this time, what was seen did not appear on ultrasound but because of my history she wanted to make sure and that I could just follow up in six months with another mammogram and ultrasound.
For as long as I can remember I have never had a good self image of my breast and have always joked that I would just like to chop them off and start over. Have a more managable size, be perky, not have to wear a bra, etc. Little did I know that this would be my fate. Now I know I want to have Propohalctic Mastectomies with Reconstruction, because it is the only way to reduce my risk by 90%. I still have a hard time imaging myself walking into the Dr's office and saying, I'm here to volunteer to have my breast removed. But I will do it so that my husband, son, daughter, sister, and parents will not loose me to cancer because I was afraid to make that choice. I am very thankful to have a wonderful support group of family and friends as well as an online support group of other BRCA+ women who share the same struggles.
I often wonder if I have passed this genetic mutation on to my children. I hold onto hope that there will be more medical advances when it comes their time to be tested and I will be by their side if they should have to make the same decisions. I will not hold on to this family secret, but will share it with future generations so that they may be empowered. My faith in Jesus Christ keeps me going , knowing that he is walking with me daily and he knows the big picture, even if I'm struggling to see it.
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