BRCA1/2 testing - what to expect?

For those with a High Risk of Breast Cancer -BRCA1 and BRCA2 Genes, Family History, LCIS
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SueM44
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Re: BRCA1/2 testing - what to expect?

Postby SueM44 » Wed Oct 24, 2012 8:35 pm

Hi Traciemc
I have had genetic testing done through a referral from my breast surgeon.
I could have had a referral from my local gp but declined genetic testing earlier- before I had been diagnosed with bc.
Once you get a referral ( I went through Peter Mac in Moorabbin) they send you through a very detailed form to complete a very detailed family tree including any types of cancers and deaths and treatments, hospitals and states that they occurred in. The initial referral letter my breast surgeon sent also had ages and close family members who had been diagnosed. The were particularly interested in bc, ovarian, postate, skin and lung cancer.
You then send back the form with as much information as you can on it and the centre will contact you through the mail for an appointment. This process took about 3 months. I believe they check the accuracy of your information.You then go in and have a 'couselling' session. Mine was quick as I had thought quite a lot about it before I went. One of the things they asked me was "what would you do if you are found to have the gene?" If they deem you will be ok what ever the results you are sent to get blood work done, then and there. The blood test results took about 3 months to come back and then the centre contact you again to come back in for an appointment. Your results are given to you and you are sent for a further blood test to confirm results. This second test takes about 3 months again and your results are posted to you.

Good luck
Sue :)
dx Jan 2010 7mm IDC Grade 2. ER+ PR+ HER- had WLE and SNB in Jan followed by 30 rads. Hysterectomy May 2010. Genetic testing revealed BRCA 2 September 2010
Bilateral Mastectomy & Immediate Reconstruction Nov 2011

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Blizz
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Re: BRCA1/2 testing - what to expect?

Postby Blizz » Wed Oct 24, 2012 8:24 pm

Hi Tracie,

if your aunt/cousin have had testing done and have authorised for other relatives to be tested against their results, there should be a letter 'to whom it may concern'.
If you take a copy of this letter to your GP you can be referred to a genetic health centre (different names in all states I think?). Ask your GP, but it sounds like you might be eligible for testing in the public system. Your appointment in first instance will be with a genetic counselor who will talk you through some facts, risks and consequences based on your particular circumstances and family history. Based on that conversation you can then decide whether you want to get tested or not.
In my case, once I said yes, they took blood on the day but that may not be the case everywhere.

If done in the public system, the process can take a while, mine took about 5 months from memory from referral to results and that was pretty quick.

Stressful times I imagine :hugs: good luck!

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jezza
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Re: BRCA1/2 testing - what to expect?

Postby jezza » Wed Oct 24, 2012 5:47 pm

Welcome to the forum Tracie.

Quite a few of our members have had genetic testing. Have a read through this section if you haven't already and I'm sure you will pick up some info. My mum had breast cancer and also an aunt on my father's side. That makes my sister and neices with 3 relatives who have had breast cancer. (counting me)

I think from memory you qualify for testing if you had 3 or more relatives with BC? Also I think if your relatives were diagnosed at a young age it is relevant. Maybe its because of the aggressiveness of your cousin's cancer that it was suggested? It hasn't been suggested to my sister or neices...and they are in Tasmania.

In Victoria you can be referred to a Family Cancer Centre where they take your family history and offer support and counselling and tests if necessary. I'm sure there is somewhere similar in Tassie.

I'm sure more of the girls who have had the testing done will explain things better than me.

Good luck with it all...

jezza
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: BRCA1/2 testing - what to expect?

Postby ruth1 » Wed Oct 24, 2012 3:58 pm

Tracie, not the Cancer Council that was incorrect - I have a link here taken from the Resources section above - www.nbcc.org.au/bestpractice/riskfactors/genetics.html - this should give you lots of info and who to contact in your city. Sorry for mistake. Ruth
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

traciemc
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Re: BRCA1/2 testing - what to expect?

Postby traciemc » Wed Oct 24, 2012 2:54 pm

Thanks ladies :)

I'm 41, and no, I don't have regular breast checks at the doctor - I do self examinations, but there's never previously been any reason to have formal medical checks done :)

I will contact the Cancer Council, thanks for that suggestions :rose:

Good luck with your testing Liv! :xfingers:

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Re: BRCA1/2 testing - what to expect?

Postby ruth1 » Wed Oct 24, 2012 2:43 pm

Hi Tracie - first thing try hard not to panic. Dont know your age but do you have regular checks of breasts with GP to start with? Prob should see GP first and discuss this as well as contacting Cancer Council and talk to one of their people who can give you all info on genetic testing. All th bst. Ruth
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

liv
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Re: BRCA1/2 testing - what to expect?

Postby liv » Wed Oct 24, 2012 2:32 pm

traciemc :hugs:

no this is the best way to find info, we are all here to do with cancer. :heart:

im having it done on Friday this week, have huge family history of bc.

if you are concerned in any way ask your doctor to send of recommendation because of your family history for BRCA1/2 test, they will send you out a family histroy/tree application to fill out and then will contact you with a date when tests will be done., not sure about the costs etc, i was in the system and was referred by my onc so didnt have to pay anything., not sure if medicare or private covers this.

they rang me and said they had put my application thru as a priority, prob thought i was going to pop off in the not so far future..there are some perks to having cancer :pmsl:

tracie i'm glad you found us and ask away.


good luck.
x

traciemc
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BRCA1/2 testing - what to expect?

Postby traciemc » Wed Oct 24, 2012 2:16 pm

Hi everyone :)

I found this forum while Googling today, and was hoping I could get some advice, please? :)

I received a phone call from my mum this morning. My Aunt (on my father's side) has breast cancer, which I already knew about, but I've now found out that my cousin (ie, one of the same Aunt's daughters) has been diagnosed with aggressive breast cancer. From what mum tells me, my Aunt's doctor has said that all close female relatives should have BRCA1/2 testing done, and I believe - again just from second hand information from mum - that my Aunt has tested positive to one (or both?) of these gene mutations.

Now, I know little more than that at this stage - so it's a bit like having a load of bricks fall on my head from nowhere, and I don't know what to think, so I'm madly trying to research and learn!

I'll be making an appointment with our local doctor to get a referral, or have a blood test, or find out whatever needs to be done - but I'm really confused over what the procedure is. From what I'm finding out in Interwebz land, I keep seeing references to needing to have genetic counselling before undertaking genetic testing.

So - has anyone had this testing done because of a family history of breast cancer, and would you mind telling me what the process was for you? I feel a bit stupid just going to the doctor and saying I want this test done - surely I need some sort of information to show why I would be needing it done? I've asked mum to ask my Aunt to ask her doctor* about getting a letter or similar supporting his request that I have this testing done.



* I know this is a very roundabout way of getting information - I haven't spoken to my Aunt for over 20 years (no reason, just fell out of contact many years ago with all my Aunts/Uncles/Cousins) - mum is friends with my Aunt and is seeing her today, which is why I asked mum to ask on my behalf.


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