triple negs: experience with genetic testing?

To keep information about Triple Negative Breast Cancer together and easier to access.
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Re: triple negs: experience with genetic testing?

Postby geminigirl » Mon Oct 10, 2011 9:31 pm

Dear Blizz, sorry to read about your positive result, geez what else can I say? :hugs:

I have just heard in the last week that I have been approved for the testing to take place in November, I was relieved to be approved. It's another of those horrible mixed emotions we have to deal with. Will let you know in due course.

Sending love and positive vibes all the way to you :rose: :wave: xxxx
Diagnosed 11/11/10 with triple neg cancer.
38yo, wife and mother of 3 aged 13, 11 & 2.
32mm grade III invasive ductal. Lumpectomy. No nodes involved & clear margins.
4 x AC, 4 x Taxol + Neulasta in Perth, 35 Rads in Adelaide.

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Re: triple negs: experience with genetic testing?

Postby DancerMel28 » Sun Sep 11, 2011 12:07 am


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Re: triple negs: experience with genetic testing?

Postby yowyow » Sat Sep 10, 2011 9:07 pm

Hey Blizz, not the results you wanted :hugs:

In a way, I think you girls are "lucky" to be tested ( I say that with a sad face)
you now have the knowledge to inform family members that there is a chance ?
albeit --- it sux !!!! and I wish your results were different.

I googled my head off initially and found studies from the US that
said anyone under 40 with a trip neg dx should have genetic testing
and thats beginning to happen over there.

I too, have no family history, grandmother lived till 95yo, mums doing great,
me... cancer obviously at 35 (or before at 31 I suspect) and dx at 36.. wtf
but in asking my onc at the time, I didn't qualify for testing and costs are
around $1200, having 2 boys i am not rushing in, but continue to question
the dr's at every yearly check up re eligibility, I do think I will end up paying the $$$$
re my boys with the chance of having daughters and my uncle having protate cancer.

xxx
Nav
every day without laughter is a wasted day !!!!


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Re: triple negs: experience with genetic testing?

Postby pacwood » Sat Sep 10, 2011 6:30 pm

Hi Blizz

Sorry to hear your genetic test results were not as hoped. I will be going down this path after treatment too. I have no family history and Im really worried that I could be the first link in the chain. This really worries me because I have a younger sister, a niece and 3 boys of my own. Scarey that you could shape their lives a little.

xo Christie.

Triple Negative BC.
RAD's x28 commencing 12/11. finished 23/1/2012!
Reconstruction time! Initial consultation February 2012 @ Peter Mac.

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Re: triple negs: experience with genetic testing?

Postby kerryw1 » Mon Sep 05, 2011 8:03 am

Hi Bizz,

Sorry to hear your results. :hugs: But so pleased about your positive approach to it. As the others have said you are now empowered with more information to tackle this head on. Thinking of you.
:hugs:

Cheers
Kerry
:heart:


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Re: triple negs: experience with genetic testing?

Postby Tracey Gibney » Fri Sep 02, 2011 12:12 am

Sorry Blizz for your results but it will help you to create a plan of attack against this disease.

I just wanted to let mdobson know that I think they just have a blanket rule not to give results out over the phone. I came back negative for brca 1 and 2 and I still had to see the geneticist and counsellor to get the results

Hugs Tracey

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Re: triple negs: experience with genetic testing?

Postby debman » Thu Sep 01, 2011 7:45 pm

:hugs: to you Blizz. Not the best news as others have said, but at least forewarned is forearmed!
, . Stopped taking tamoxifen in December 2012 after 18 months due to debilitating SEs.

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Re: triple negs: experience with genetic testing?

Postby Janette » Thu Sep 01, 2011 6:20 pm

Blizz,
You're very wise, nothing has changed, it always was, except that you and family are now empowered because of the testing to make decisions. :hugs:
Janette


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Re: triple negs: experience with genetic testing?

Postby shereejoy » Thu Sep 01, 2011 3:57 pm

Big hugs Blizz :hugs: but you being like me... knowledge is definitely power! and atleast now you have that little doubt in your head of the "why" answered. If you want to talk you know where I am xo
Age 36, Mother 3 and 5 year old BOYS
Dx 9/3/11, Surgery 22/3/11 - IDC, 3 x tumours (5cm, 4mm, 3mm) - Multifocal, 13/26 lymph nodes -All nodes taken, Stage IIIC, Triple Neg, RB Mastectomy
M/C 21st Feb 2011 - Saved my life!
IVF completed 4/4/11 - 3 eggs
Reconstruction late Feb 2012/ early March 2012

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Re: triple negs: experience with genetic testing?

Postby Blizz » Thu Sep 01, 2011 3:55 pm

thanks ladies, wise words as always :grouphug:

I am feeling much better about it today. I did some research last night, watched a very informative webinar on BRCA1/2 risks and prevention (I'll post the link in the high risk section) and decided to go ahead and have an oophorectomy. Spoke to the onc this morning, he has referred me to a gyno oncologist. I have an appointment the week ater I get back from Holland and even a tentative surgery date (October 24).

Counting myself very lucky that I know now and can take further steps, that our family is complete :heart: and that my sister/mum/niece/cousins can either get tested or monitored a lot more closely.

It doesn't change anything really, it just has a label now.

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Re: triple negs: experience with genetic testing?

Postby mdobson70 » Thu Sep 01, 2011 3:33 pm

Sorry to hear that you have tested positive Blizz especially with just the 20% chance. I got my phone call today saying my results are in but they wont give the results over the phone so I am thinking that mine is positve too. I have to wait another week to see someone face to face to go through everything. What is another week when I have waited nearly 4 mths. And Blizz I am with you about hoping they find a cure as I have 3 daughters I dont want them to have to go through the same journey.

x
Dx Nov 2010 extensive DCIS, Dec 2010 Lumpectomy (no clear marg), Jan 2011 SNB (nodes neg) RB Mast
Grade 2 IDC ER+PR+ HER2-, Tamoxifen 5yrs

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Re: triple negs: experience with genetic testing?

Postby LuvMyLab » Thu Sep 01, 2011 11:49 am

:hugs: to you Blizz. Such a rollercoaster. As the girls say, knowledge really is power. Good on you for being so brave and confronting this disease head on!! :mad:

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Re: triple negs: experience with genetic testing?

Postby angel33 » Thu Sep 01, 2011 8:08 am

EBC 1997, bony mets Dec 2000, liver mets april 2007, chemo since

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Re: triple negs: experience with genetic testing?

Postby VanessaV31 » Thu Sep 01, 2011 4:13 am

Hey blizz,
Sorry to hear about the news. I'm also a brca1 carrier. First in my family also. It sucks doesn't it especially when having to tell my sisters they need to be tested. I'm praying for better results for them!

Thoughts r with u.
Vanessa
June 2010 - Diagnosed with EBC, Triple Negative, IDC, 5cm, grade 3, 1/18+ nodes, clear margins
August 2010 - Diagnosed with ABC to Bones and Lungs, Triple Negative
October 2010 - Spinal Fusion and started PARP tiral
May 2011 - LB Mastectomy

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Re: triple negs: experience with genetic testing?

Postby Janette » Wed Aug 31, 2011 11:03 pm

Blizz,
I'm sorry about the testing outcome but knowledge is power. You have enabled other family members to have the checks and procedures to try and ensure that they have an early diagnosis if they do ever get bc. :hugs:
Janette





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