Pink Hope Outreach Ambassadors Kathryn and Christine share their reasons for researching their family trees and the importance of this information in relation to their own genetic health and the health of other family members.
There is a saying that a family is like a tree – it branches off in different directions but shares the same roots. Sometimes over times the tree throws out seedlings so far and wide that the new little offshoots lose sight of their roots.
That is what happened in my family. I was born in Adelaide, the first Australian born member of my family to a Welsh father and an English mother who had emigrated from Britain in the 1960s. My family unit was very small consisting of mostly immediate family. Both my grandmothers were part of my life – one lived in Australia and one lived in Wales, but visited on a number of occasions. My maternal grandfather passed away in Australia when I was three years old and my other grandfather died in Wales approximately 7 years before I was born. Their brothers and sisters – my parents aunties and uncles were just names to me – anonymous people from some country on the other side of the world. Names that were mentioned occasionally, but were really like strangers to me.
One of my father’s cousins was an actor called Victor Spinetti, relatively well known in Wales, and in the early 1990s he came to Adelaide with a one man show which was performed at the Festival Theatre. I met him while he was in Australia and he was funny and told great stories – some of them about family. At that time I was in my early 20s and finding out family history whilst entertaining was not overly important to me. I had my family unit I had grown up with and didn’t feel I was missing out on anything.
Fast forward to 2015. I was 43 years old, both my grandparents and my mother and her brother had passed away. One Sunday morning I found a lump in my breast – by Wednesday morning I had a definite diagnosis that I had breast cancer. By the following Monday I met my breast surgeon for the first time. His first words to me were “so breast cancer runs in your family”. When I said that I didn’t think so he accused me of not knowing my family well enough.
Suddenly I badly wanted to know more about my extended family, but all the people who may have been able to provide me with information were no longer around. So my search began. Thanks to snippets of information I had remembered from Victor’s visit and modern technology such as internet and facebook I have tracked down some of Dad’s other cousins and their children. They are spread far and wide across the country – England, Wales, America and most surprisingly one branch of the family in Queensland. I still have more to find and some information is amazing hard to obtain. However, I am on the track to knowing more about my roots.
My body is assumed to be cancer free, although I continue to take medication to improve the chances of it not returning. I have tested negative to the fur genetic defects that they test for in Australia. My search has not yet brought me confirmation of whether my cancer has a genetic link or not. Yes I have found other instances of breast cancer in women who were diagnosed at almost exactly the same age I was, but is that just co-incidence???? Hopefully time and further research will give us the answers. For now I will continue my search and enjoy learning more about my ancestors and relatives who all made me what I am today and hopefully I will find information that can help current and future generations of my family.
Just as families have many branches, so does the Pink Hope family. There are many trails that have led us to this group and its shared objectives. Whilst for me I am still unsure of what caused my cancer other people know what has made them high risk, but still need more answers and more information. Christine is one such person ……….
Like Kathryn, my search for answers regarding my family history has been an important step in understanding my family’s genetic legacy and managing my own health.
Unlike Kathryn’s tale, our family history of cancer, or at least part of it, has been a known quantity to me ever since I was a little girl. We all knew of the aunts, grandmother and great grandmother who had died from the ‘family curse’. It was something rarely spoken of though. I think that there was always an underlying fear linked to uncertainty and loss that prevented open conversations. Something that dredged up too many painful memories for my father and his remaining siblings. Something that I suspect was filed, when everyone was well, in the ‘if we do not speak of it we can ignore it’ category. Cancer causing genes had not been discovered when our family members had died and so a trend of ignoring things had begun and persisted.
Even though we knew of the family history of breast and ovarian cancers, finding out the root cause proved more problematic and ultimately it almost came too late for me. My search for answers began in 2001 at the age of 35 with the discovery of a, benign as it turned out, breast lump. At that point the family history sparked concern in my breast specialist so he sent me to seek advice from a genetic counsellor. Testing a family for genetic inheritance without a living affected member in those early days of testing proved not possible however. All that was possible was to label women ‘high risk’ and encourage them to undertake yearly surveillance and cross their fingers. Preventative surgeries were, at the time, not advised nor recommended without concrete evidence to support such a drastic approach.
Years drifted by peppered by regular mammograms and ultrasounds along with a smattering of biopsies and, in the latter years, MRIs. Fortunately, no-one in the family developed cancer. Still no-one in the family really talked about it.
Late 2012 arrived and thanks to the same concerned breast specialist from 2001 I headed back to the genetic counsellors for further advice. Suddenly testing, privately funded, was an option and so I elected to proceed.
In early 2014 the answers to the “Why?” suddenly appeared. My father was tested first and a fault on his BRCA1 gene was identified. I tested straight away and I too had the fault.
I was sure in the knowledge of what I needed to do and I quickly proceeded with my first surgery, Bilateral SalpingoOpherectomy and hysterectomy. I will forever be grateful that I went ahead so promptly. A small tumour was discovered at pathology following that surgery and, suddenly, our family could no longer ignore history. It was no longer history. It was the here and now.
The flood gates opened and every member of the extended family tested in quick succession.
50% of people who could have it did. The other 50% did not.
My curious mind has continued to search for family knowledge. For some reason it is important to me to trace where this genetic legacy has come from.
With the use of a number of resources such as Ancestry.com and Births, Deaths and Marriage registries I have opened up a whole world of previously unknown, to me, family members.
I have traced, presumably based on death records, the fault back to an Irish ancestor who came to Australia in 1854 as a child. I have found that my grandmother lost 3 cousins to breast cancer that I never knew about. My next project is to try and trace current, though more distant, generations of the family here in Australia and make connections there if I am able.
There is a lot that we can learn from knowing our family history.
Having conversations about family health history can go a long way to ensuring the health of current generations.