BC Patients With BRCA Mutations At 4x Higher Risk Cont BC

For those with a High Risk of Breast Cancer -BRCA1 and BRCA2 Genes, Family History, LCIS
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Re: BC Patients With BRCA Mutations At 4x Higher Risk Cont B

Postby Deebee » Wed Apr 27, 2011 5:50 pm

That's good news Sue :clap:

It will make some decisions easier I guess.

Deb

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Re: BC Patients With BRCA Mutations At 4x Higher Risk Cont B

Postby LuvMyLab » Wed Apr 27, 2011 5:38 pm

Hi Girls,

I got my results today from the gene testing for Brca1&2. I do not have the gene mutations. I am relieved although I know that it could be from another gene, but I believe now I will continue on with my treatment plan.

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Re: BC Patients With BRCA Mutations At 4x Higher Risk Cont B

Postby bel » Mon Mar 28, 2011 3:57 pm

I agree with Christine, there is still so much that they do not yet know in regards to inherited genes and genetic testing.
It is logical that there are more links still to discover.
My tests originally came back negative and as my mum had had breast cancer post menopause and even though my nan also died of ovarian cancer, everyone assumed it was not related.
Once mum was tested and my guys carried on working on my results, they came back with a positive result for me.

I have friends that have 2 or more direct family members with breast cancer and yet they were tested and it came back negative
and the friend went on to get breast cancer.

The main thing is to elliminate risks to your life and if being tested could help, then it could save your life.
Even though it's been a long hard road, at least I was able to understand how important it was to cut down any risks and
went on to have a further mastectomy and hysterectomy.
The more people who are tested, the more lives that will be saved and I believe, the more information they will discover.
“"

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Re: BC Patients With BRCA Mutations At 4x Higher Risk Cont B

Postby mdobson70 » Sat Mar 12, 2011 8:50 pm

I just had a phone call from the genetics team and they are sending me out a questionairre to complete and then I will go down the path of being tested. I will feel better when I know for sure if I have an inherited gene.
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: BC Patients With BRCA Mutations At 4x Higher Risk Cont B

Postby chrismelb » Sat Mar 12, 2011 8:37 pm

I had the test and came back negative as i thought. They were undecided as to whether to test me but as my mother was 52 and i was 40 (but the cancer would have been present at 39) they thought it was worth it. I am HER-2+ and it doesn't tend to be inherited. Since then my aunt has had BC also. There are only so many things that they can test for or know about so i think that there is a connection somewhere that someone is yet to discover. I have three sisters and they have been told they are still high risk so get checked regularly. I have a daughter and many neices....
Dx 9/03 EBC
5/12 ABC bones-Herceptin,Tamox&Zometa
8/12 Liver mets-Abraxane,Herceptin&Zometa
6/13 Xeloda/Tykerb Xgeva
11/14 TDM1 Xgeva
1/15 Rads to tumour in head
2/16 Whole brain rads lepto. mets, continue TDM1
8/16. Navelbine, Herceptin
1/17 Neratanib Xeloda & Herceptin.

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Re: BC Patients With BRCA Mutations At 4x Higher Risk Cont B

Postby 61apples » Sat Mar 05, 2011 9:13 am

I'll also be going down the genetic testing path. My mother had BC at age 44 and when I spoke with the onc about genetic testing she was definitely with me on getting tested. Something to do with the amount of inflammatory tissue they found in my breast being a pointer to the BRCA gene mutation. I have two teenage daughters but also want to know for my own treatment. I'm thinking that when I have a reconstruction next year that if I am +ve then I'll consider having the "healthy breast removed" and then have both reconstructed. I would be reluctant to rely on screening as screening didn't find a second larger tumour in my LB. It hadn't shown up on ultrasound or mammogram. Doctors keep telling me how lucky I was that my BS decided to go back and do the mastectomy. Not sure that I want to rely on good luck next time.

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Re: BC Patients With BRCA Mutations At 4x Higher Risk Cont B

Postby mdobson70 » Sat Mar 05, 2011 8:23 am

I am a bit like you Blizz I would rather know that I carry the gene then I can take action. My mums family is also of Jewish decent so it puts me at an even higher risk. Not sure why this is but apparantley so from what I have read.
If I test positive then at least I know exactly the road I will take.


Michelle
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: BC Patients With BRCA Mutations At 4x Higher Risk Cont B

Postby Roslyn63 » Sat Mar 05, 2011 7:42 am

Interesting from all angles because my mum had bi-lateral breast cancer, in the left breast at 55 and then in the right at 60, she had two lumpectomies and rads both times - no chemo. She is alive and well at 80 but has a mass in the right breast which is being mammoed next week. I was 46 at diagnosis and yet the onc said because my mum was post-menopausal I would not be genetically tested. I am only concerned because I have two daughters ( and a very brand new granddaughter who is simply beautiful - just bragging now) , I guess we just have to be extra vigilant with them.

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Re: BC Patients With BRCA Mutations At 4x Higher Risk Cont B

Postby Blizz » Sat Mar 05, 2011 2:51 am

Thanks Jet for posting this.

LML, you never know, best to keep an open mind.
I have been referred for testing by the geneticist - no real family history (lots of cancer, but no breast / ovarian) but having developed triple negative bilateral breast cancers at 34 I am apparently the poster child for a BRCA1 mutation. Yet he told me, based on stats as they are now, my chances of testing positive are only 20%

The way I see it, knowing either way will allow me to make informed considerations and decisions about future steps.
It might sound strange but I am almost hoping to test positive because I don't know if I like the alternative. What if I do carry a mutation, but one that hasn't been isolated yet? That thought scares me a little. Better the devil you know kind of thing.

Anyway, I won't know until much later in the year, I'm on the waiting list for testing and apparently it can take up to 6 months to be seen...

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Re: BC Patients With BRCA Mutations At 4x Higher Risk Cont B

Postby LuvMyLab » Fri Mar 04, 2011 3:58 pm

Thanks Sue. I am dreading the possibility of making those sort of decisions. I will try to just go one step at a time, first things first - get the test. xoxo

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Re: BC Patients With BRCA Mutations At 4x Higher Risk Cont B

Postby Janette » Fri Mar 04, 2011 3:40 pm

Hi Michelle,
It is surprising how many ladies with family history don't have the brca genes. Best to be prepared for either outcome. I think a negative finding for some is a shock and nearly as traumatic. :hugs:
Janette


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Re: BC Patients With BRCA Mutations At 4x Higher Risk Cont B

Postby mdobson70 » Fri Mar 04, 2011 2:44 pm

I am being referred for Genetic testing as my mum had breast cancer. I am sure I will come up positive with one of the BRCA genes. This may explain why my Mum developed breast cancer in her other breast 12mths after her first diagnoses.
If I come up positive i will be booking myself in for a mastectomy to my LB....not taking any chances

Michelle
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: BC Patients With BRCA Mutations At 4x Higher Risk Cont B

Postby SueM44 » Fri Mar 04, 2011 1:29 pm

Hi Sue
It is a long process to go through....takes a while for results then they send you for a second test to confirm. Waited 3 months for my first results.

As far as I was concerned having the counselling was about wether or not I wanted to have the test and how I would cope with the results......you don't have to have it and I chose not to for a long time.

As for coming back positive to having BRACA 2 I don't think it correlates to developing secondaries or the cancer returning.

For me it explained why I got BC in the first place and to be vigilant for checks in the future. Counselor explained it meant I had a higher chance of developing another Primary and probably explained why I got BC at a younger age. I have taken some steps to decrease the % and the counselling will explain that to you.

I can be worrying..... :hugs: hope this has helped answer some of your questions. :hugs:

Sue :D
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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Re: BC Patients With BRCA Mutations At 4x Higher Risk Cont B

Postby LuvMyLab » Fri Mar 04, 2011 1:13 pm

Now I am getting worked up about all this. I'm due for genetic counseling in a couple of weeks, and I think they will refer me for genetic testing due to my age (37) and my paternal grandmother and cousin got BC.

God, I was hoping I could live without the fear of recurrence at the front of my mind all the time but looks like that's not going to happen. I know I'm jumping ahead but I have a very strong feeling I will have the gene mutation. :crybaby:

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Re: BC Patients With BRCA Mutations At 4x Higher Risk Cont B

Postby SueM44 » Sat Apr 17, 2010 12:59 pm

Thank you from me too Janette, interesting reading
Sue :D
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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