Genetics Appointment

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Hi @melclarity
My genetic testing was done through the Austin and they said that all records of a cancer diagnosis are registered and that this is a legal requirement. Because my parents are both deceased and I am next of kin there was no problem with getting the information. Neither of my parents were ever treated at the Alfred so they had to have been able to get the information elsewhere. I’m currently also working with the genetics clinic at the Royal Melbourne as my sister has been treated there for heart issues along with several other family members and they are looking into the connection with my heart issues( chemo induced cardiomyopathy). They have no record on my mum so have sent me an information release permission slip today so that they can request my mums relevant medical records from Epworth and Knox hospitals 
Interestingly, the Austin also told me that there are several cancers that they look at in families including prostrate and some lymphomas I think. All I needed to do was give them the family tree with the names of family members( aunts uncles grandparents etc) and which ones I thought may have had cancer. They researched the rest. The only family members that they gave me details of were my parents, even though I know several other family members had cancer. 
Im sorry that you weren’t able to get the information you needed. Maybe the Cancer Council might have a better idea about how you might be able to get your Mum’s records.

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I had my appointment today.  The genetics oncologist was really helpful and went through my family tree (which was rather challenging as my cousins' grandchildren are older than me and there are so many knowledge gaps).  In her opinion, it is more likely than not, that there is a hereditary factor with my only sibling having bc at 32.  I qualify for the free genetic Braova test and will go ahead with that, although it is quite possible that it may come out negative.  From there, depending on the results, we will have further discussions regarding further direction which may include decisions about taking the other breast and possibly ovaries.  It also has implications for my kids and nephews as to when they start getting screened.

Thanks for you help, everyone.

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@"Polly Rose" that's interesting. I had my testing at the Royal Melb Hospital Familial centre. I had my Mum with BC, her Aunt with pancreatic, her brother with some other cancer I can't recall now. Then on my dads side I only had a cousin with Bowel cancer. My Mum had BC in 1982 and died in 2009 from lung cancer and 2 grandads also died of cancer and they didn't investigate any of it. My mum particularly I said I wanted to know what sort of BC she had but they had nothing? hmmm odd! yet you got all that info? and I had to pay $800 because they told me its based on BC and ovarian history not the others....grrrr.

Hi sister.
I had the genetic tests as my mum also had breast cancer and other family members had related cancers. The family history information was not a problem as long as I could give them names etc. I basically had to fill in a family tree type document and they were then able  to search the records for these relatives. They told me that all records of cancer must be kept and that this began in the 1940s ( I think). This meant that they were able  to look up the details of both of my parents ( both have long been dead thanks to cancer). It’s was actually really helpful for me as I had so many questions that I wished I could ask my Mum about her cancer but she has been dead for 16 years. They were able to give me all of my Mum’s path results which helped answer some of my questions. They were even able to tell me the details of my Dad’s brain tumour from the 1980s. I was young when he died so I wasn’t sure how accurate my memories were. I’m in Victoria so I’m not sure if the record keeping applies nationwide or whether it’s a state by state thing so I’m not sure if it applies to SA but well worth asking the question.
The cost of getting the blood test done has come down a lot in recent years so if you don’t qualify to get it free, maybe you could ask for a quote to see if it’s achievable for you. I was lucky that I didn’t have to pay but I would have if needed as I have two beautiful daughters. They also keep the sample on file and retest it when other gene mutations are discovered so if something does come up down the track, you will not have to go through it all again.
Good luck with your decision. It’s always challenging when there is no clear path.

Polly

@sister I had the genetic testing done just before I made my final decision on my mastectomy/diep flap reconstruction. They only look at the history of breast or ovarian cancer in your family, as I too had a cousin with bowel and it doesnt count. I had my Mum who had BC at 40 and myself at 43 and recurrence at 47 and DID NOT qualify. BS!! it cost me $800 and it came back negative for BRACA 1 & 2 gene. Keeping in mind that 95% of BC is random and not genetic. It put my daughter in a risk of the normal population. Based on this they only recommended a single mastectomy not a double including my history and pathology. It was worth doing, as otherwise I would have done a double.

It is worth doing, just disgusting you have to pay!!!

Thanks @kmakm

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