Personal Story Bank
Read through personal stories of others who have been living with genetic cancer risk.
Scroll down or click on the links below to read about their experiences. Click here to share your own story.
“We have a rare genetic condition called GAPPS (Gastric Adenocarcinoma & Proximal Polyposis of the Stomach) that can potentially cause cancer, and you may have it too” they said. Myself and most of my family didn’t think much of it when we heard this from a few of our distant family members. After all, everyone dies of cancer these days, right? Whether it be lung cancer, skin cancer…or in my case, stomach cancer.
I thought “that won’t happen to me”, which I was thankfully right…but, if I had of waited much longer who knows what could/would have happened.
My immediate family and I decided it was time that we get tested. By tested, I mean an endoscopy. I remember not thinking much about it, I was just worried about remembering the procedure because of the “twilight sedation”, needless to say, I didn’t remember anything.
When I woke up I was told my stomach was covered in polyps, and a few of them looked a little odd so those ones were biopsied.
I am one of those very few lucky ones that found out that I didn’t have cancer, but was well on my way. I had high dysplasia, which basically means it will happen at some point – sooner or later.
I was just about to go on the trip of a lifetime to Europe with my now Husband. So I thought, I am going to make as much of the food (and the wine!) as I can, whilst I still have a stomach! Somehow, I knew I was going to be told I should have a total gastrectomy. I just sensed it was in my future, I just didn’t realise how close.
When I returned home from my 6 week trip, I met my specialist. He gave me two options; 1) wait for my high dysplasia to turn to cancer or; 2) get it removed now!
This was one of the easiest decisions of my life! “Get rid of it” I said. “I am young, fit and healthy…so just do it now”. At 23 I had the rest of my life ahead of me, so there wasn’t anything to decide. Two and a half months later I was getting into my fetching hospital gown getting ready for my surgery.
I was oddly calm. Everyone around me was anxious and worried, but I knew that I had to be strong. If I broke down, they would to. Even as we were saying goodbye I held back my tears like a trooper (I’m still so proud of myself) as those around me were crying. I asked everyone to leave to I could centre myself before they wheeled my hospital bed through…I then woke up with beeping and people fussing over me.
Fast forward 2.5 years…these have been the toughest years of my life however, I have learnt just how incredibly strong I can be. I have not had an easy trot. After my initial surgery I have had two further surgeries, due to having severe bile reflux which means I cannot sleep lying down and continue to gurgle up bile even when I am sitting up during the day.
Genetic cancers are nasty, and they are scary. Scary for those who it is happening to, those around them and for their unborn children. What do you do? Do you have children? Do you want to be responsible for passing this horrible genetic disorder onto the next generation? I say yes, they will grow up knowing that their mum, Aunty, Grandad and many other people in my family have all had total gastrectomy’s. Hopefully by the time they grow up we will have a cure. And no, it’s not easy! But it’s possible, and it does not take away quality of life…and hopefully doesn’t take any life at all.
Hopefully, with support, fundraising, further studies and our amazing scientists we will eventually find cures to the horrible gene mutations, disorders and diseases and ensure that our children, grandchildren and great grandchildren can live without this burden on their lives.
Humans are strong, resilient and the support of those around them is paramount in every aspect of life! My support network, especially my Husband, Stuart has been my rock and I would not have gotten this far without him by my side every step of the way.
BRCA2 genetic risk (anonymous)
When my sister told me that she had had genetic testing done to establish whether she had inherited the BRCA2 gene I was initially frightened with the uncertainty that lay ahead.
Having another sister who had breast cancer at the age of 35 some 25 years ago ( and a maternal Aunt at the age of 47 ) it was always in the back of my mind the increased risk I may have. As a mother with 2 young daughters it caused a great deal of anxiety in me knowing the implications if I too had the gene.
My older sister passed away 20 years ago after battling breast and secondary cancers for 6 years. With genetic testing now available my next sister wanted to know where she stood. She in fact did have the gene.
I however initially wasn’t sure I wanted to know ( the denial part of me came through). After 6 months I decided to go ahead with my husband’s full support and had testing done. We had the attitude that if I had the BRCA2 gene I would have my ovaries removed initially and seriously look into a double mastectomy. It was a 6 week waiting period which I actually found easy to deal with than the period leading up to whether I wanted the testing done. I simply had the attitude ‘well the blood test is done now, it’s out of my control and there’s nothing I can do now except wait’. It actually gave me a sense of relief in some way.
My result came back negative ! It was such a relief knowing I had not passed on the gene to my daughters.
It was difficult ringing my sister and telling her I did not have the gene (as she had tested positive 12 months earlier). I almost felt guilty and had to wait a few days after my result before talking to her. The challenge now is communicating the information we have to extended family (cousins, nieces, nephews), particularly as many are overseas and interstate. It’s difficult having these conversations via email and telephone. Everyone reacts differently but I believe it can be empowering knowing we have choices moving forward and immense support in this process.
“I am convinced that knowledge is power – to overcome the past, to change our own situations, to fight new obstacles, to make better decisions”. Ben Carson – neurosurgeon.
Finding out about our genetic predisposition for gastric cancer was a complete shock - no family history existed. Once the test results came back and I broke the terrifying news to my mum, we decided to take action before it was too late. Medical intervention & the ability to chose what we wanted for our own future, to have a future, saved our lives. Doctors have said it would have been a different story in 5 year's time for the both of us. This gives me chills thinking my two little girls would be embarking on their life journey without a mother and a grandmother. Now we have to make sure our gift of genetic testing continues and that we remain ahead of the otherwise nasty outcomes that were set for us and our family in the years ahead. Telling family is hard but seeing them suffer when it doesn't have to be the case is worse. Seeing their reaction to the news may also be surprising. Some react proactively. Some prefer to live out the life planned for them. It's hard to watch family take such a risk. I hope with time to process they will take the steps necessary to ensure a long, happy life. But it is a personal choice and In the end, it is their choice. I have to be OK with that. The next, you could say hardest step for me will be communicating with my girls about the genetic mutation they could potentially carry and what we will do about it. Together, as a family. We can't let this trait continue.
Living with Lynch Syndrome - Michelle's story
In 2011 after a stomach cancer diagnosis I was told I have Lynch Syndrome also known as Hereditary non polyposis colorectal cancer.
After losing my father at an early age and also several of his family members, I had no idea that our seemingly unrelated cancers were in fact due to a hereditary link in our genetics.
Having genetic testing on my tumor was the first step to shining the light on this disease in our family. As confronting as this knowledge has been, it has also meant that I can move forward with a cancer plan. Pre screening, preventative surgery and early detection has it’s own set of anxieties as well as its benefits. I can now make conscious choices about how I live and how it will affect my future and the future of my children. I have also advised all other family members, so they to can make their own personal decisions on how they move forward with this information.
I am realistic in knowing that not everything is preventable, and sometimes doing all the right things doesn’t necessarily gives us the outcome we want. Knowing what I know now brings greater understanding and purpose into my life. Yes, I have Lynch syndrome, but it does not take over every thought of every minute of my day. I am not my genes and I am most certainly not the cancer.
I have used the experience to empower my life and to make a difference. I am a survivor but I am also a creator, a healer, a mother and a wife. I am grateful for the knowledge of my genetics because I can now be a proactive, happier person who doesn’t sit in drama or sweat the small stuff. My perspective and ability to bring hope and awareness to others through my experience has changed my life. The cancer and the Lynch syndrome diagnosis have opened my eyes, and awakened me to possibilities far beyond anything I could have ever imagined.
My kids are in their 30's so they were involved with the passing of my 2 sisters and watched as another 5 siblings of mine were tested. I was the only one positive. Both my boys wanted to be tested, both positive. 1 has had the surgery and at the moment wishes he could go back and not do it. The other son is having his in September. Have not tested my Downs Syndrome daughter. 2 grandchildren. 7 and 4. It will be a while before we need to think about whether they want to be tested and how to tell them.
Preventative surgery to avoid risk (anonymous)
"Without the knowledge and option of genetic testing for the Genetic cancer risk in my family I wouldn't have been able to make the decision to take the preventative measure of choosing to have preventative surgery to reduce my risk of cancer.I have told my children about the gene mutation in our family and have been honest and realistic about my decision to have surgery and also how important it is that they are aware of their family history so if need be in the future they can make informed choices for themselves".
Our family genetic cancer risk was discovered in 2014 when sadly we lost both my Mum and Aunty to stomach cancer within two years of each other. Before my Mum passed away, she was tested for genetic cancer risk and the results came back after she passed. It revealed that a genetic mutation was detected and that she and her sister had been passed this gene from one of their parents. My Dad phoned my Mums remaining five sisters and one brother to advise them that they may carry the gene mutation and if so, their children would also have a 50% chance of being gene positive. Each of them had genetic testing and fortunately, only one of the sisters were positive, the remaining siblings negative. Both my grandparents were also tested and we discovered that the gene was inherited from my Grandmother (Mum’s Mum).
Out of the positive tested sisters there are six children who carry the risk of inheriting the gene, one being myself. We all decided to test for the gene and discovered that four out six of us are positive, including myself. Between the four of us, we have seven children that may carry the risk of carrying our gene mutation. The Doctors have recommended that they be tested after they turn 16 years of age.
I have been totally open and honest with my children that they need to be tested when older and that they have a 50% chance of having the gene. We talk openly to them now as they are aware of what our family have been through and have many questions. We try to answer their questions as honestly as we can.
My mother found a lump during a routine mammogram which was later confirmed to be breast cancer. Prior to this my late Grandmother had passed away as a result of breast cancer. It was now clear that there was a direct link. After my Mum’s diagnosis she was confirmed to have the BRCA2 gene mutation. My sister, brother and I were all encouraged to test for the gene as we were at risk of also being positive for BRCA2. I didn’t realise that a simple blood test could determine my fate. 6 weeks later, I tested positive for the gene.
The rollercoaster ride of emotions that followed that day filled me with shock and sadness. The genetic counsellor and Oncologist talked me through my options, a prophylactic double mastectomy being one of them. With a devoted husband and 3 small children by my side. My decision was clear; I was going to do everything I could to watch them grow up.
Since the surgery I am no longer engulfed with the mental anxiety of developing breast cancer and I can honestly look back and thank modern medicine being able to offer me that gift of choice.
I don’t know yet if I have passed this on to any of my 3 young children, but one thing is for sure…I know they will have all the support in making the decisions that are right for them.