triple negs: experience with genetic testing?

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

Postby Blizz » Wed Aug 31, 2011 10:28 pm

well - my results came back today and I carry a BRCA1 mutation.
Feeling very mixed about it. They said I only had about a 20% chance of testing positive as I have no family history of breast or ovarian cancer.
I guess I am looking at an oophorectomy later this year.

I have just told my mum and sister, so wish I could have given them different news. Let's hope it started with me and we only have to worry about our own kids - they are still so little that by that time there my be a cure...

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Re: triple negs: experience with genetic testing?

Postby shereejoy » Sun Jun 19, 2011 12:08 am

I did ask all of these questions to my oncologist only on Thursday and it differs to what people are saying here hence why I am asking for people's experiences and knowledge they have been given so I can ask further questions.
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 Janette » Sun Jun 19, 2011 12:03 am

Sheree,
These are questions you need to discuss with your medical team, the experts. We can only relay our experiences.

With radiation to the mastectomy area it may affect which reconstruction method that your PS recommends only. Rads should have no affect on your gene testing but again better to ask the experts.

You need to write down all questions and ask your Onc when you see him or her next :hugs: .
Janette


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Re: triple negs: experience with genetic testing?

Postby shereejoy » Sat Jun 18, 2011 11:41 pm

As you know Blizz, I am keen to get this Genetic testing done also.... I mentioned it to my oncologist the other day and he said he definitely wants me to have it done but to leave it until my treatment has finished... I am not sure why?? I may mention it again to him soon by email. I don't see why I have to wait when the results take so long to come through...

I also mentioned the fact I want my left breast off now also and he said I have a greater chance of getting the cancer somewhere else then in my left breast!! I am thinking he was basing that on no Brac1 or brac2 gene? I don't know??

I told him I also wanted my ovaries taken and again he said because I was triple negative, then there is no need for concern there either.... again surely he was putting the gene's scenario out of the equation...


Anyone have any thoughts on this?

I too will be having radiation done on my right breast mastectomy area in around 7-9 weeks time.... this is ok to be done isn't it? It won't affect reconstruction or genetic results will it?

Sorry for all the questions ladies... just trying to absorb everything you all said based on what I have been told recently also.

Thanks ladies.

Sheree
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 Jun 16, 2011 12:33 pm

Just thought I'd post an update - had my genetic testing appointment yesterday and they did offer me the test through the public system. I wasn't entirely sure if they would due to lack of family history, but my own diagnosis and pathology made me eligible. I think it was the bilateral factor that made the difference, if I'd had it in one breast I would not have been eligible (they use a points system)

They took bloods on the spot but it will take up to 4 months for the results to come back.

It's a bit of a wait but I am also kind of glad it will allow me to focus on other things first. Like recovering from treatment for example, I don't really want to think too much about what might come next just yet.

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Re: triple negs: experience with genetic testing?

Postby Blizz » Wed Mar 16, 2011 11:11 pm

It's perfectly ok and normal to not feel positive for a bit LML. Interesting comment about the positivity being a 'cure' or not.
Earlier this week, we had a discussion about negative thoughts during our breast cancer mums group (my hospital runs a parenting program, brilliant) and the facilitator emphasised that there is no evidence that negative thoughts have a negative effect on your prognosis, not unless the negative thoughts lead to actual stress or anxiety. Thoughts are just thoughts.
Thank god for that, because I have been having an awful lot of them lately...

I think a pamper day is a great idea and much deserved!
:hugs:

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Re: triple negs: experience with genetic testing?

Postby JudyB » Wed Mar 16, 2011 11:06 pm

LML it's normal to feel down at the stage that you are at. With my upcoming operation coming I feel a little like oh here we go again but I just think that by the end of the year hopefully I will be well and truly on my way to putting this behind me and only having check ups everu so often. It will happen to both of us and we can just move on and put this sh%#@ty time behind us.

:hugs:
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: triple negs: experience with genetic testing?

Postby LuvMyLab » Wed Mar 16, 2011 10:59 pm

Yep it sure is a lot to take in Blizz. I feel really flat tonight, just said to my DH this is such a long journey, seems never ending. I'm over it. I think I might need to see my counsellor soon, losing that 'Positivity' which is supposed to 'cure' us hey..

Just flat... will snap out of it soon enough.

Oh, another thing they said to me is if my siblings are to be tested it will affect their life insurance... I don't have any and probably can't get any now, not that I want it, I don't have kids, well I have step kids but they are looked after.. My super has a portion of insurance.....geez I can't believe I'm thinking about this as well. Think I might need a pamper day and a catch up with the girls and several wines to snap me back to normal.. :ouch:

And Judes, I like it when you're on your soap box :biggrin:

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Re: triple negs: experience with genetic testing?

Postby JudyB » Wed Mar 16, 2011 10:57 pm

Ooooh ok, that makes more sense then. I shall crawl down off my soap box :pmsl:
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: triple negs: experience with genetic testing?

Postby Blizz » Wed Mar 16, 2011 10:48 pm

LML, it's a lot to take in isn't it? I walked out of the geneticist's office feeling much the same. I had to put it mentally 'on the next page' and not think about it for a bit (which I did anyway...!). I have since decided I really do want to know, for myself and our kids but also for my siblings and their children. But because I am having it done through the public system it will take a while.

We are in the same likelihood bracket, my geneticist also gave me the 20% stat. I have no family history but it is highly unusual for concurrent bilateral bc to occur at a young age. Add the triple negative factor and there's the high risk. As the geneticist said 'a mutation has to start somewhere'.


Judy, yeah as LML said, it is not that they are not allowed to be tested but they can't. There are different subtypes of BRCA1/2 mutations and also different tests to find them - it's complex.

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Re: triple negs: experience with genetic testing?

Postby LuvMyLab » Wed Mar 16, 2011 10:31 pm

I know, I thought that too Judes but then they explained the reason they can't be tested is because they don't know what mutation to look for. If they find it in me, then they can test them. So it's not because they won't, it's because they can't.

By the way, my cousin passed away at age 43. She had 3 daughters and they were young teens when she passed. This was over 20 years ago and we all know how much has changed in treatments since then!

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Re: triple negs: experience with genetic testing?

Postby JudyB » Wed Mar 16, 2011 10:04 pm

Hi LML, I hope the test goes well for you and you don't have the gene. That is utterly ridiculous that your cousins can't get tested. This basically means that they could easily have the gene but they can't do anything about that if you and your cousin both decide not to take the test. That just doesn't make sense. I guess they are trying to stop people rushing in to have the test but geez, wouldn't a letter from your doctor saying that you have had breast cancer at a young age be enough for them? It hardly seems fair that their future is in your hands.
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: triple negs: experience with genetic testing?

Postby LuvMyLab » Wed Mar 16, 2011 10:02 pm

Sorry, meant to add that there's no negative result as others said below, it will either be positive or inconclusive. Brilliant..

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Re: triple negs: experience with genetic testing?

Postby LuvMyLab » Wed Mar 16, 2011 9:56 pm

Hi Girls,

I learnt today that I'm high risk to have the gene mutation, purely because I had a cousin who was diagnosed in her late 30's. I also had a grandmother but it was the 2 young diagnoses (me included) that put me in high risk for possible genetic cause. I was a bit shocked, there's no cancer on Mum's side, and just the 2 on Dad's.

I also did not realise that if you don't have cancer then you cannot be tested unless somebody in your family who had cancer has already been tested. I guess I just assumed that if you have a family history, don't have cancer yet but are worried, then you can check on a mutation on those 2 genes. Wrong! The daughters of my cousin get regular mammograms now but I thought they could get tested. Well they can't......unless I do now.

If I am positive for BRCA1, my risk of getting another 'primary' breast cancer is fairly high. What's even scarier is my risk of ovarian cancer is very very high. If I'm positive for BRCA2 then my risk of another primary is still high but not as much, and no extra risk of ovarian than that of a person without the mutation.

Even though they said only a few people in 100 who get BC will be caused by a genetic fault, my risk is about 20%. I've signed the consent forms and got the vials and blood request.

I'm still a bit numb from it all, but I do believe I'm going to do the test. This will not only affect my future decisions, but will pave the way for other family members to get the test if they so desire. I'm worried about my niece who's 7, they said if my brother has the gene then it's a 50/50 chance of passing on to the child.

I just cannot fathom having to make the decisions to remove all my essentially female parts, it's freaking scary. I am still trying to come to terms with the fact that I got BC in the first place.

Anyway ladies, thanks to you all I'm not alone and will be travelling down a road much travelled before me and will no doubt get some wonderful advice.

And it's true, although I want to be negative I would then worry that it could still be genetic but from another gene string which hasn't been identified yet. Will I have ticking time bombs inside me?? I know we could all say that, perhaps though there's more info that if dx young, certain path, etc etc etc then....genetic risk = x
:-?

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Re: triple negs: experience with genetic testing?

Postby Blizz » Wed Mar 16, 2011 7:22 pm

I have just sent back the questionnaire for the genetic testing people. No idea when my appointment will be, could very well be months away but it is not a priority for me at the moment.

Fina, I think it is a emotional roller coaster either way. Should I test negative, or undetermined, I am not sure if that would be better. It just means I am potentially dealing with a defect that hasn't been isolated as yet.
I also have a sister, younger with plans for more children, and we have already talked about what this could mean for her. At this stage, she doesn't really want to know but that may change when I actually get the test results - not sure

Reading through everyone's posts, I do feel very lucky that our family is complete. I know that having my ovaries out is a distinct possibility (and if I test positive, I will not hesitate) but at least fertility is not a concern for us.

Lisa, menopause worries me too, and the longer term effects on my body.

LML, wondering also how your appointment went


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