I have an appointment to see a genetic oncologist type person tomorrow. The generations in my family are all over the place (some of my first cousins were older than my parents) and I don't know much about what people died from (cancer being a dirty word) and have no-one to ask. Due to this, I'm fairly sure that I will not qualify for any subsidies on genetic testing and cannot afford to pay for it up front. However, as my sister was diagnosed at 32 and died at 45 from an early detected breast cancer, I am very keen to know what the likelihood of it being genetic is, and what that means for treatment for me. Has anyone been in a similar situation and what was the outcome?Does anyone have any insightful questions for me to ask?

Hi @Sister. I've just done a genetic test and qualified for the free one. It's a point system based on the boxes you tick. I was 38 at first diagnosis (2005)- the younger diagnosis is a tick. I've had 2 subsequent diagnoses - 2009 and May this year. I had a great grandmother have BC and Mx in the '60s but was told that was too far back. Then Oct last year my mum was diagnosed at 73. Dr then referred me for the test. There is also bowel cancer in the family - father and aunty. I was mentally prepared for a +ve result but it came back negative. I couldn't fathom the number of DX I'd had and not have something that caused it. So I'm more confused now. There is another test I can do that is for a larger number of genes known to be linked to BC and I am considering that. I have to pay for that. I am finding it difficult to come to terms with no explanation. So be prepared that you may be none the wiser or informed if you do the test. I know that the surgeon was suggesting right Mx if I tested positive to a gene given my history (already had L Mx) but I received my new diagnosis on right breast before the gene results cam back so it was a Mx anyway. I don't know if it makes a difference on type of chemo or not - although I would have thought that was more to do with type of cancer. For me it was more about risk for family members - son and cousins. It may not give you any answers, which is where I find myself now. I would suggest having the consult so you know all the parameters and whether you have to pay - and what a result will do for you: will it inform treatment or flag risks for family members. Then decide once you have all the info. It's another layer of decision and worry on top of everything else we have to weigh up with BC. I'm happy to answer any other questions if I can and wish you well with the decision. Take care. :)

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

@"Polly Rose" thank you so much for that, I'm going to try and find some records. My Mum passed in 2009 in Geelong so Im sure my Dad said they only keep records for a certain amount of years. I might make some enquiries but Im sure that the Genetics Counsellor said that they wouldnt have pathology of her BC in 1982. Hmmm Id love to know though, and so interesting about all the other cancers. Thanks again x

Sister it sounds like you were given a lot of information yesterday and no doubt it will take a while to process what it means for you and your family. The good thing is that knowledge is power in such situations and you now can make choices about what will be best for you in the long run. I hope you have plenty of support from you medical team, family and friends so that you can talk through your thoughts and feelings while making decisions. It’s a great thing that this fabulous network is always here 24/7 to have a chat with people who have been on a similar path. Good luck with the testing. Polly.

Genetics Appointment | BCNA Online Network

Polly_Rose
Member
7 years ago
Sister it sounds like you were given a lot of information yesterday and no doubt it will take a while to process what it means for you and your family. The good thing is that knowledge is power in such situations and you now can make choices about what will be best for you in the long run. I hope you have plenty of support from you medical team, family and friends so that you can talk through your thoughts and feelings while making decisions. It’s a great thing that this fabulous network is always here 24/7 to have a chat with people who have been on a similar path. Good luck with the testing. Polly.
kmakm
Member
7 years ago
I know that feeling...
Sister
Member
7 years ago
Awake since 1:30 am ( but I did bug out last night at 7:30pm). All good - bit surreal.
kmakm
Member
7 years ago
How are you feeling this morning? Different having slept on it?
Sister
Member
7 years ago
@joannie No matter what the result is for me, it doesn't follow that my kids have the same (50%) and they cannot be tested until they are adults and make that decision. For me, she did tell me that it has life insurance implications but that cancer trumps that, anyway.
@kmakm My reaction is a bit strange. It's been something that has been lurking in the background all of the time but except for my original GP (who looked at it from the perspective that 100% of my siblings had breast cancer), the possibility has been downplayed. Perhaps it was just to get me through active treatment as my oncologist said that, in my situation, he wouldn't normally refer to the geneticist until after chemo and radiation. To hear the geneticist say that, regardless of what the tests show, she believes there's almost certainly an hereditary gene involved (1 in 4 chance of it being picked up at this point in time), just confirmed what I have always suspected, but it did make me very shaky.
melclarity
Member
7 years ago
@"Polly Rose" thank you so much for that, I'm going to try and find some records. My Mum passed in 2009 in Geelong so Im sure my Dad said they only keep records for a certain amount of years. I might make some enquiries but Im sure that the Genetics Counsellor said that they wouldnt have pathology of her BC in 1982. Hmmm Id love to know though, and so interesting about all the other cancers. Thanks again x
kmakm
Member
7 years ago
I'm glad for you that the appointment went well, but geeze, that all sucks. Big hug @Sister. K xox
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7 years ago
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Polly_Rose
Member
7 years ago
Joannie that’s interesting. I’m actually one of 8 kids and have 5 older siblings all still very much alive and well. They had absolutely no issue with telling me the details of both my parents cancers. My dad had a very rare brain tumour so I was very interested to see if what I thought it was called was correct and with my mum they were able to tell me the grade, stage and ER PR status etc. I was so glad to get the information and was able to pass it on to the rest of my family. The privacy laws are a complex and crazy maze of information. I deal with them in my employment so will look forward to checking out the link you have posted and see what else I can learn.
Anonymous
7 years ago
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