Genetic Testing

That's true, it's a personal choice whether to do genetic testing or not. I'm only referring to people who want to do genetic testing.

If after speaking to your specialists and they won't do anything to help, I'd pay for it and get it done, but thats me! I'm glad that I had genetic testing, because not only did it help me make the decision about what surgery to have, it also helps people who want to start a family. It made me think about what I can do inorder to prevent passing on the gene fault to my children if I was to go down that road. After having a family, I'd even think about having ovaries removed to prevent ovarian cancer. My geneticists told me that BRAC1 increases the chances of ovarian cancer after 35-40 years of age, especially after 40.

Genetic testing is very important for making these important decisions. I wish I was able to do it BEFORE I got BC and not AFTER. Jolie, who is in the spot light at the moment for this very same topic, is quite fortunate that she has all the money and resources at her fingertips unlike your average person.

All the very best with whatever you decide to do. Our different circumstances dictate the decisions we make in life. :)

That's true, it's a personal choice whether to do genetic testing or not. I'm only referring to people who want to do genetic testing.

If after speaking to your specialists and they won't do anything to help, I'd pay for it and get it done, but thats me! I'm glad that I had genetic testing, because not only did it help me make the decision about what surgery to have, it also helps people who want to start a family. It made me think about what I can do inorder to prevent passing on the gene fault to my children if I was to go down that road. After having a family, I'd even think about having ovaries removed to prevent ovarian cancer. My geneticists told me that BRAC1 increases the chances of ovarian cancer after 35-40 years of age, especially after 40.

Genetic testing is very important for making these important decisions. I wish I was able to do it BEFORE I got BC and not AFTER. Jolie, who is in the spot light at the moment for this very same topic, is quite fortunate that she has all the money and resources at her fingertips unlike your average person.

All the very best with whatever you decide to do. Our different circumstances dictate the decisions we make in life. :)

That's true, it's a personal choice whether to do genetic testing or not. I'm only referring to people who want to do genetic testing.

If after speaking to your specialists and they won't do anything to help, I'd pay for it and get it done, but thats me! I'm glad that I had genetic testing, because not only did it help me make the decision about what surgery to have, it also helps people who want to start a family. It made me think about what I can do inorder to prevent passing on the gene fault to my children if I was to go down that road. After having a family, I'd even think about having ovaries removed to prevent ovarian cancer. My geneticists told me that BRAC1 increases the chances of ovarian cancer after 35-40 years of age, especially after 40.

Genetic testing is very important for making these important decisions. I wish I was able to do it BEFORE I got BC and not AFTER. Jolie, who is in the spot light at the moment for this very same topic, is quite fortunate that she has all the money and resources at her fingertips unlike your average person.

All the very best with whatever you decide to do. Our different circumstances dictate the decisions we make in life. :)

If you can't afford thousands for a blood test then wait and hope, and pray it doesn't come to get you next.

I watched my cousin Liz die, thenj not long after my cousin Lorraine die now my cousin Deb has it.

If my sister gets it before me I can get tested but unttl I have direct links I cannot get tested under medicare and must pay privaately as I see it. I have spoken to Familiar Cancer Centre in Melbourne's Royal Melbourne Hospital where my cancer was removed.

Bad Luck!

That's Life!

So I wait and hope.

I wanted it done 1 year ago and was told no they wont do it under medicare because only cousins died and not grandmother or Aunty.

I just wonder why we need to pay so much if many family members have had various cancers, but 3 in my line BC, 2 now dead!

Just thought I'd put it out there to see if there was any loop holes or ways in?

Heidi

Hi Heidihoe,

You shouldn't have to pay thousands for genetic testing. That's ludicrous! Speak to your team of specialists, for example, your surgeon who can have a word with the Familial Cancer Centre for you.

My surgeon referred me to a Familial Cancer Centre in Sydney to do a genetic test, because I was young (under 45) even though I didn't have any known family connection with BC. My surgeon suspected that it may be genetic, because I had Triple negative BC. When I did the genetic testing I found out that I had BRAC 1. This result helped me and my specialists make important decisions about treatment.

You should also mention your cousins to them, because that is still important. Your cousins serve as examples of other family members having cancer even though it may not be immediate family members. There are people who are fortunate enough to not get cancer even though they have a genetic fault BRAC 1 or 2.

I think that it is terrible to prevent people who want genetic testing just because they don't have any KNOWN immediate family members who have had cancer OR alternatively charge them excessively for it. Obviously, people who are concerned about having a gene fault have good reason for it and wouldn't ask for testing otherwise. The fact that you have already had cancer should be a good enough reason for them to allow you to do the genetic testing for FREE.

I hope what I have written is of some help to state your case next time you see your specialists.

Liz

HI Heidi,

I paid $1600 for my genetic testing as I did not have enough points to get it done through the qld public health system.  Depending on the results, my treatment was going to be changed, done differently. It came back inconclusive but I think it was money well spent for my piece of mind and that of my sister and mother. No one can tell you whether it is the right decision to make, it is a personal choice. It might make a difference if you have children or sisters but in the end the choice is yours.

Good luck with what ever you decide,

Renata