I just came home from my doctor appointment at the Seattle Cancer Care Alliance. I have been in remission for quite some time from cancer, however, I am followed up for tumors in my right breast. So far they are benign. My wellbeing is dependent upon consistently having checkups. That story changed after I took a direct to consumer DNA test. My life became a bit complicated…Maybe you will relate. Come along for a story friends…..
In 2014, I was confronted with an all consuming identity crisis after an over the counter DNA test resulted in a dramatic change to the understanding of my being. I was not genetically lining up with my siblings and in fact had no connection at all with who I thought was my father. Three long years of detective research of all kinds culminated to finding my paternal family almost two years ago.
Breaking the cycle of family secrets was my resolve for wholeness and better wellbeing. No wonder I felt so out of place, so alone, so misunderstood. Today, I am far better off knowing my truth. To realize I am 54% Ashkenazi Jew was a genetic identity surprise for the ages! At least I thought so until it hit me that I need to go see a doctor for early detection of specific cancers known for my new ethnicity. On top of that my father’s mother died of cervical cancer ( a reproductive cancer that could have evolved from any part of the genital system as her death certificate eluded to). Below when I saw this photo of her (left) for the first time, I saw my reflection. She was only 60 years old when she died and I am not too far away from that.
Ovarian and breast cancers remains very aggressive form of cancers. I am a cancer survivor with kidney cancer and a brain tumor. Both tumors were removed successfully, although I remain symptomatic from the area that the brain tumor was located. It sat on the strip of the brain called the motor cortex. My right kidney was removed and today I fight issues with medications that have put me into renal insufficiency . To say the least, I try to keep a close eye on my health needs. Keeping this all in my mind, I drive nervously to the cancer center.
My appointment at the Seattle Cancer Care Alliance was interesting and as a RN, I knew I would have to share with my new doctors my ‘new’ medical history. I am thankful the VA (I was in the Army Nurse Corps) referred me to them. It took a long time to get the appointment, but I give the VA credit for getting me into the best cancer doctors in Washington State. Today because of that DNA test I took, they placed me in their genetic testing group along with their early detection program for ovarian cancer. Now it is time to wait again on the VA for authorization to get all my labs done to check genetic markers.
While at the appointment, I was surprised to see the University of WA paperwork actually address my new found medical issues:
“Some women who have hereditary breast or ovarian cancer don’t have a “strong” family history of cancer. This can happen if the family is small, if most of the relatives are men, or if there is a mistaken paternity.” credit UofWA. Yes. You read that quote correctly. As an NPE (Not Parent Expected or Non Paternal Event), anytime my medical history was ever asked for, my answers were half-truths and in this case could have been mortally fatal if I had not been blessed to be alive to tell this tale!
Recognition of human rights to know their true genetic identity can not be stressed more as in my case or anyone else that finds themselves in the same circumstances. It is a known fact, women inherit abnormal genes especially those of us that are Ashkenazi Jewish. To make things worse, breast cancer genes can be inherited from your mother OR your dad.
The informational literature again made my hair stand up on edge:
“Other rare genes increase the risk of breast and other cancers, such as leukemia, brain, bone, thyroid, uterus, pancreas, and colon cancers. If you have a strong family history of any of these cancers, talk with your healthcare provider about getting a referral to see a cancer genetic counselor.” credit UofWA.
Besides my kidney cancer in my mid 30’s and my massive brain tumor, I had four other paternal cousins who had brain tumors. Two of them are dead now.
I am now waiting to get my authorizations in so I can be tested. Research indicates that if you have the gene for BRCA1 , your chances are 50-85% for breast cancer and 25-50% for ovarian cancer for women living to 80. BRCA2 gene has similar statistics for those two cancers although less on ovarian (15-25%). I want to know if I carry any of these genes and feel that my sample DNA should be used for future testing when new analysis of genetic conditions become the norm. Donating in such a way I consider a gift to the future.
Some of my friends who were donor conceived or adopted have run into so many obstacles in getting their medical history. It is my belief there can be no more anonymity. Some countries have adopted such practices, but we in the USA are behind and the standard still seems to be a need for secrets. In Washington State, we are looking closer to what we can do and have a strong group of volunteers wanting to make positive change. You can find that work through my web page. I hope it encourages you to find your place in helping others. The very core of basic human rights- to know who you are is the crux of our future work…Two examples of advocate work involve a need for change in state laws that specifically discuss vital statistics such as our birth certificates (Bill 5332) and the Uniform Parentage Act ( Bill 6037). AS a matter of perspective, did you know a Donor Conceived child who is now an adult have no clear rights to know their medical history from their genetic parent(s)? Times are a changing…..
If you have read this far, you have learned a lot of what is going on in my world. There is not a day go by I do not think of my brothers and sisters ( Adopted, NPE’s, and Donor Conceived) who want answers. I am hopeful in time we will see change. Our right to know who we are will become the norm and not a sham. This is my purpose and passion and has brought me to the point that my wellbeing is so much better off with being a part of something bigger than me.
My mantra as of late is that everyone has a right to be loved. Parenting is the biggest gift that was given to me when I became a mother to my children. Parenting legally speaking is not determined by biology alone and laws overtime are shaped by an evolution of changes to what it means to be a parent. It is not unusual to see that many people believe as I do in recognizing different definitions for parents in our modern age, but embedding any of the old traditional way of thinking about secret parents is still actively controlling our courts. Multiple Parental Paradigms need to become the norm and the NPEs, Donor Conceived, and Adoptees need to be represented with our voices as new laws are articulated in this very area. WE are a movement of children and we are not going anywhere. The laws must be shaped by parentage and as alliances are formed we in WA state want to see our rights valued. We are waiting and look toward to the future if not for us, the next generation.