Forum Discussion
Genetics Appointment
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?
Has anyone been in a similar situation and what was the outcome?
Does anyone have any insightful questions for me to ask?
28 Replies
- 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.
- I know that feeling...
- Awake since 1:30 am ( but I did bug out last night at 7:30pm). All good - bit surreal.
- How are you feeling this morning? Different having slept on it?
- @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. - @"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
- I'm glad for you that the appointment went well, but geeze, that all sucks. Big hug @Sister. K xox
- 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.
