Genetic Testing

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

Hi I got a blood test at GP, who took it wrong and they couldn't use blood sample to do BRAC 1 & 2 test.

Went to Familiar Cancer Centre in Royal Melb Hosp

they wont investigate as no direct Grandmother or Auty had it.

Yet 2 cousins died in late 40's with BC and now another cousin got BC, I am in their generation, I am 43yrs old.

I have had Thyroid cancer.

I'm very scared I have gene but very expensive test in $1000's if not deemed strong family connection.

What should I do?

Any ideas on testing, how, when, cost, etc.

Heidi

Hi I got a blood test at GP, who took it wrong and they couldn't use blood sample to do BRAC 1 & 2 test.

Went to Familiar Cancer Centre in Royal Melb Hosp

they wont investigate as no direct Grandmother or Auty had it.

Yet 2 cousins died in late 40's with BC and now another cousin got BC, I am in their generation, I am 43yrs old.

I have had Thyroid cancer.

I'm very scared I have gene but very expensive test in $1000's if not deemed strong family connection.

What should I do?

Any ideas on testing, how, when, cost, etc.

Heidi

Sorry to hear that. I had an inconclusive reuslt also as they found something unusual in the Brac 2 gene but nothing they could pin point or say that caused my cancer. It is a relief but they still did not want to cancel anything out. I think they do that to cover themselves. I wish you well and don't forget any discission you make is the right one for you. xox

Hi Renata,

Yeah, I must say I too feel like a genetic mishap, but I guess we have to just play with the cards we're dealt with.

As a result of the genetic testing, I mentioned that I've decided to have a double mastectomy, but with reconstruction. I will be doing the "boob job" a few weeks after I finish chemo, which will be in November. Like yourself the decision was also to do with not wanting to deal with the same situation to the other breast in years to come. My situation is that I needed to decide now whether I want to do this operation OR have radiation, which means I can't wait to do it in a few years time. 

The genetic result, in a way, has helped me try to make the best possible decision that I can make NOW with treatment.

Also I guess it's somewhat good to have this info before having children, but there's no knowing how the chemo will affect fertility in the long run. I didn't do the IVF stuff before chemo, because I was just so overwhelmed at the time.

From what  I understood, even if this genetic problem is passed onto males, it is less likely to present itself than it would in females. That's good news for your son.

I am in Queensland too Leonie and had to pay for my testing as I did not have enough points to qualify.

Good Luck with it all. xox

thanks to you all for your info. i did also learn that the 'authorities' are discovering lots but it is just becoming more complex to solve. take care and keep enjoying our lives xleoniehi ladies, i havjust returned from the bcna summit -will add a blog about that later-i attended the genetic testing workshop. i am now going to look into testing because of the info i now know. this is the second time with bc for me and i have a genetic blood disorder which i have passed onto each of my two daughters. from research it appears that this blood disorder has come from the askenzie jews. when the jewish population was mentioned as being eligible for genetic testing i started to put two and two together so asked the question. the speaker suggested that i contact a centre for more info. i was also informed that the centres are listed on bcna website. i am in queensland and the testing is not covered financially so i now will be asking lots of questons of my oncologist as well. i get really upset to think that my daughters and my little ganddaughter might be heading towards the same path- so i want to identify all risk possibilities.

I agree jojo I do think it is  bad luck involved. I think people just want answers into why they got cancer to help with the acceptance and to make sense of it all. It was in my case. I am opting for a double masectomy not because it is a necessary option for me but for peace of mind as when I survive this time I don't want to have to go through it again later in life.

Good luck with your results and I hope they are a lot clearer than mine were.

Renata xox

HI Renata

I'm waiting for results on BRAC1/BRAC2. If positive i would consider having my ovaries out by 45 (I'm 39). Onc said if it's positive there is no emergency to remove them faster than that. I have chosen to not have children anyway.

You gals sound much more decisive on the mastectomy thing though, I really havent researched that side of things & how it all works.

You know what chicks? I know these genesists are well informed and want to help us, but I do wonder if some of us just score a bit of good old fashioned bad luck in getting this awful disease?  esp those with inconclusive results, and/or no clear history in the family to track. it's tricky!!

best wishes ladies xx

jojo

Hi Renata,

I get my results on the 1st of September so I'll let you know what they are...but i've basically decided what i'm going to do if it comes back BRAC 1 OR BRAC2 or even inconclusive....I'm going to have a double mastectomy and my overies removed to reduce my chances of getting this agressive little bastard again or even a hormone reseptive bc...but thats just my own decission and I think I will also have a reconstruction done as well.  I hope this helps :-) but as I said as soon as I find out myself I shall let you know what the results are.  As I have 4 daughters & 2 son's I want to give them the best chance I can!

Love and Brightest Blessings,  Susan  xxx