Genetic Testing ....

Hi Michelle

I am going for Genetic Testing on 17th June.  It took quite a while to get an appointment!  I have had BC twice (two separate cancers), one at 35yrs and one at 42yrs, and my cousin in the UK was also diagnosed before the age of 40.  My grandmother also died from breast cancer, although because she was in her 60's that apparently doesn't increase my risk.

I have two boys and although rare in men I know that if I test positive it could have implications for them.  I read somewhere that if you carry the gene and pass it on to a male child, then it increases their chances of getting not only breast cancer but also prostate cancer and testicular cancer.  I also have a younger sister, who has had no problems so far.  She has two daughters though and is very keen for both me and herself to be tested (she can only be tested if my result comes back positive).

It is such a big decision but with the counselling etc that is available they make sure that you are ready for the decision when you make it and understand what the ramifications are.  I had to fill out a huge questionaire and they gave me a big booklet about genetic testing too.  When I go in to see them in June, I will have to see a counsellor before they give me the test and then I will have to go back to see them to go through the results.

I have decided to have the test done and then I will leave it up to my children as to whether they want to be tested or not.  Ultimately it is their choice and, even with my sister and her daughters, the decision as to what to do if you carry the gene is a very personal one.  Some people are quite happy to have a prophylactic mastectomy where others opt for increased testing and monitoring.  I know that if I test positive that my sister can have MRI scans rather than just relying on the mammograms.  These are supposedly more reliable at diagnosing BC.

The thing that worries me is if I get an inconclusive result.  I have already decided that if I carry the gene then I will have my ovaries removed.  But, if it is inconclusive, then what?

It is all so hard but I guess we just need to take one step at a time.  I hope all went well for you yesterday and am sorry that I didn't make it on here in time before you went to your doctor....  Let us know how you went,

Louise x

Babe ive had the testing and i am postive call me if u want to chat [telephone number removed by moderator] im an open book so u can ask away, there is a lot of varibles with in the gene, i have no family history of breat cancer and i have the gene!!! and yes i am not adopted hahahaha i checked that! dad gave it to me.... but yeah call me as im a not a very good typer!!!

megs xx

Ps i also am a BCNA community liason as well (so not some werido incase u were thinking that!)

Michelle don't dwell on what if's, i have a strong family history but for now have chosen not to be tested , i feel there is no rush  and my emotional state of mind needs to be stronger. you have plenty of time your beautiful girl is only 1 so enjoy being her beautiful mum and dont worry , only  5% to 10% of breast cancers are genetic  and even if you did have the gene it doesn't mean she will get it.

you have been through so much of late give yourself time to heal and to live,

this dosen't all have to done today. if you choose to still do it, what ever the out come you are not to blame i dont blame my mother or grandmother. it's just what was.

goodluck what ever you do.  

Hi Michelle16,

There has been some discussion in the online network around genetic testing and you may find the stories and experiences helpful. I have completed a search and the following results returned - http://www.bcna.org.au/search/node/genetic%20testing

Good luck
Daina

Hi Michelle

I haven't had the testing so I'm sorry I can't help you there.  We may go down that track as my Mum as had BC but that is the only relative so not strong apparently. 

I worry about my daughters - they are 6 and 9 getting this too now.  I discussed this with my Drs and they put it in perspective for me that if they are at greater risk by the time it is a concern for them - i.e. more than 10 years - we will be much further progressed in treatment options than we are now.  Just think of the changes in the past 5 years and how survival rates have improved.  It will be even better in the future - they may even be able to prevent it.  We have to think with hope for our daughters and have faith in the wonderful work of the medical professionals and researchers trying to rid us of this disease.  

Mel has given some great information about the process - it sounds like it is very supportive and that you get good counselling - I hope that you get this too.

I'm sorry you've had so many hassles with your surgery and now this worry too.  take care - and sending you lots of positive thoughts.

Amanda x

Hi Michelle

I haven't had the testing so I'm sorry I can't help you there.  We may go down that track as my Mum as had BC but that is the only relative so not strong apparently. 

I worry about my daughters - they are 6 and 9 getting this too now.  I discussed this with my Drs and they put it in perspective for me that if they are at greater risk by the time it is a concern for them - i.e. more than 10 years - we will be much further progressed in treatment options than we are now.  Just think of the changes in the past 5 years and how survival rates have improved.  It will be even better in the future - they may even be able to prevent it.  We have to think with hope for our daughters and have faith in the wonderful work of the medical professionals and researchers trying to rid us of this disease.  

Mel has given some great information about the process - it sounds like it is very supportive and that you get good counselling - I hope that you get this too.

I'm sorry you've had so many hassles with your surgery and now this worry too.  take care - and sending you lots of positive thoughts.

Amanda x

Hi,

I recently just went through the process of genetic testing.  I didn't have to do anything over the phone - they just sent me this huge questionare that I had to fill out of all the family (had to get Mum to help me as I had no idea on some!).  From there I attended an initial counselling session where they explained the process and what my chances were of having the 2 known gene mutations.  I didn't have to decide on the spot to go ahead with the test but I decided to and had the blood test done that day.  They explained to me that everyone gets called back in to go over their results as there are ramifications for negative as well as positive and they don't want anyone 'stressing' becasue they've been called in - everyone gets results face-to-face.  My testing came back negative.  The Doctor was really good and explained that they are discovering new things all of the time and that it will be someitme in the future that they will be able to test for more genes and that my sample could be retested in the future.

Everything they discussed with me at both appointments was written down and a letter outlining the details were sent to me after both appointments - which is great as they cover a lot of things!!

Overall I found the experience OK - it was good having someone with me at the appointments (Good Old Mum!) and found the Doctor I saw to be very clear and considerate throughout the whole process.  I hope you get to expereince the same as it can be quite daunting.

Mel