BRCA1 triple neg

To keep information about Triple Negative Breast Cancer together and easier to access.
Belinda
Forum Queen
Forum Queen
Posts: 2697
Joined: Sat Mar 10, 2007 11:48 am
[phpBB Debug] PHP Warning: in file [ROOT]/vendor/twig/twig/lib/Twig/Extension/Core.php on line 1266: count(): Parameter must be an array or an object that implements Countable

Postby Belinda » Sat Jun 09, 2007 12:08 pm

I talked the insurance thing over with my surgeon when we discussed genetic testing - my main worry is insurance implications for DD when she is older. ie that the companies will start asking about your parent's health status, and if you have a genetic history they will want to know that and maybe even require you are tested before you are insured.

Surgeon made a good point - with the acceleration of the genome project and its offshoots, by the time now-5yo-DD is 18-21, nearly all of us will know something about our genetic history, and family history of chronic disease, be it cancer causing genes or something else. The insurance industry is having to adapt because the very few people with no history of chronic disease or genetic problems won't want to pay the huge premiums to be the few lucky insured people in the world. Which means that they will continue to insure, but exceptions will become more common for anything that is known in your history.

Hard to know though. I am still worried for DD. If I could insure her now I would in a heartbeat, and try and pay ahead over time to make sure she was covered until she was an adult. But that isn't possible.

Bxxx
Belinda
Dx 3 Jan 2007, 4x3x3 cm IDC and 2 other tumours 1.5cm each, 6/19+ nodes, ER-, PR-, HER2+, 4 AC, 12 weekly Taxol + herceptin, 30ish rads, Herceptin finished May 08, currently watching a lung nodule.

User avatar
lesleydonna
Forum Queen
Forum Queen
Posts: 3114
Joined: Sun Mar 11, 2007 7:47 pm
Contact:

Postby lesleydonna » Sat Jun 09, 2007 11:27 am

Re Life Insurance, my breast surgeon said, when we were discussing insurance re gene testing, that one form she got re insurance for patient actually asked does this patient have close family relatives with bc ???? They are covering all bases. in other words if you have high risk of getting bc, they dont want to insure you.
Lesley
"Let your hook be always cast. In the pool where you least expect it, will be fish."
.

abcd
[phpBB Debug] PHP Warning: in file [ROOT]/vendor/twig/twig/lib/Twig/Extension/Core.php on line 1266: count(): Parameter must be an array or an object that implements Countable

Postby abcd » Sat Jun 09, 2007 1:04 am

hmmmmm!
I don't think they can force you to have it but i do think that you are under an obligation once you 'know' of a positive status to tell them because it changes 'what' they are insuring. i was also under the impression that ifyou had life insurance already and then later became aware of this info, that you had to tell them but I don't know where i heard that so it could be totally wrong! its just all playing with my head at the moment.

User avatar
Kj
Superstar
Superstar
Posts: 1346
Joined: Wed Dec 20, 2006 3:50 pm
Contact:

Postby Kj » Tue May 29, 2007 7:19 pm

abcd I had sililar quieries re life insurance .. wat if they make women have the new test before being able to take out life insurance ???????
Real friends are the ones who love you for being you!!!! (that is soooo important)
from Kim xxxx

abcd
[phpBB Debug] PHP Warning: in file [ROOT]/vendor/twig/twig/lib/Twig/Extension/Core.php on line 1266: count(): Parameter must be an array or an object that implements Countable

Postby abcd » Tue May 29, 2007 2:52 pm

thanks for your replies girls, i have more to ask but may make it another thread as i am going off the beaten track!

User avatar
jaybee
Forum Queen
Forum Queen
Posts: 3922
Joined: Thu May 10, 2007 12:41 pm
[phpBB Debug] PHP Warning: in file [ROOT]/vendor/twig/twig/lib/Twig/Extension/Core.php on line 1266: count(): Parameter must be an array or an object that implements Countable

Postby jaybee » Tue May 29, 2007 11:16 am

abcd I already had life insurance so that I do not know (that remains the same due to policy taken out prior to BC). Having this test done was not all that hard to me considering what options onc gave to me, given strong family history, mother, mothers two sisters, mothers neice, possible grandmother (still unsure of that one stroke??, 1968 right side leg and arm swollen lack of movement late stage of BC??? lymphodema one will never know) So if anythying apart from giving my children, siblings, relatives possible answers and the right to make their own choice of what to do with info, my main one was if it came back positive do I take the next step and have my ovaries removed??? Tests so far neg but given light of new info how do I know, decision of ovaries still not sure further discussions with onc, I will never stop being practive about my health and am guided by my trusted physician, surgeon, onc. Its all about personal choice and if you decide yes no-one has the right to tell you your wrong. Good luck :hugs:

User avatar
jacki
wasn't born yesterday
wasn't born yesterday
Posts: 106
Joined: Thu May 24, 2007 11:25 am
[phpBB Debug] PHP Warning: in file [ROOT]/vendor/twig/twig/lib/Twig/Extension/Core.php on line 1266: count(): Parameter must be an array or an object that implements Countable

Postby jacki » Tue May 29, 2007 10:03 am

Probably going off the track here, but sometimes i wonder if it is worthwhile getting the BRCA test done now that they are finding new genes. So even is you are neg you could be postitve for genes that they have not discovered yet and then you will get a false sence of security, i will still go ahead with the test but if it is Negetive i still may go ahead with getting the Ovaries removed.
I am due to be tested in August i do not have life insurance :crybaby: but i think i would be concidered very high risk regardless of what the test shows
To much to think about :-?

abcd
[phpBB Debug] PHP Warning: in file [ROOT]/vendor/twig/twig/lib/Twig/Extension/Core.php on line 1266: count(): Parameter must be an array or an object that implements Countable

Postby abcd » Tue May 29, 2007 12:27 am

jaybee and jaqui,
have you had any problems re life insurance or any other similar problems resulting from being tested? did you find it hard to decide to test?

User avatar
karin
Superstar
Superstar
Posts: 1057
Joined: Wed Nov 08, 2006 2:43 pm
[phpBB Debug] PHP Warning: in file [ROOT]/vendor/twig/twig/lib/Twig/Extension/Core.php on line 1266: count(): Parameter must be an array or an object that implements Countable

Postby karin » Tue May 29, 2007 12:11 am

jacki
I'm also wondering about the same thing if it would be worthwile removing overies :roll:

User avatar
jacki
wasn't born yesterday
wasn't born yesterday
Posts: 106
Joined: Thu May 24, 2007 11:25 am
[phpBB Debug] PHP Warning: in file [ROOT]/vendor/twig/twig/lib/Twig/Extension/Core.php on line 1266: count(): Parameter must be an array or an object that implements Countable

Postby jacki » Mon May 28, 2007 12:33 pm

When i went for my consult to get the BRCA1,2 done, she said that most cancers that develop because of the gene are ER+ like you said, but it scares me to think that it can mutate.
Do most perple who are Er+ have there ovaries removed??? I am still thinking hard about this but think i might.
Jacki

User avatar
karin
Superstar
Superstar
Posts: 1057
Joined: Wed Nov 08, 2006 2:43 pm
[phpBB Debug] PHP Warning: in file [ROOT]/vendor/twig/twig/lib/Twig/Extension/Core.php on line 1266: count(): Parameter must be an array or an object that implements Countable

Postby karin » Sun May 27, 2007 8:28 pm

Nav
Thats really interesting and frightening as well.
Just when you think you'v got this bc status worked out along comes some new info,
bc is very sneaky and confusing , obviously trying to reinvent itself.
Lets hope they do more researching into this.
karin xxx

yowyow
Forum Queen
Forum Queen
Posts: 5502
Joined: Mon Jan 29, 2007 11:56 pm
Contact:

Postby yowyow » Sun May 27, 2007 8:23 pm

Oh I do Janette, oh I do!!

I have my BC thinking hat on tonight :idea: Finding all the answers for the world :pmsl:
Brains in overdrive.

If you did have the BRCA1 gene (didn't know) and your BC started off as hormone + then mutated to neg.
You are dx with triple neg, you dont have hormone tx.

If you get another dx say in the other breast and its triple neg, its called a recurrance when in fact
it may not be as your hormones have been festering away producing another primary which then mutates
to hormone neg and very hard to treat.

Oh ok thats out of my head, rambling rambling rambling. Sorry tired now after all this thinking :ouch: :ouch: :ouch:

Food for thought!! will ask the Q

User avatar
Janette
Forum Legend
Posts: 15776
Joined: Tue Jun 13, 2006 10:23 am
Contact:

Postby Janette » Sun May 27, 2007 8:14 pm

They don't know all the answers Nav, but plan on living a long healthy life my friend.
Janette


User avatar
jaybee
Forum Queen
Forum Queen
Posts: 3922
Joined: Thu May 10, 2007 12:41 pm
[phpBB Debug] PHP Warning: in file [ROOT]/vendor/twig/twig/lib/Twig/Extension/Core.php on line 1266: count(): Parameter must be an array or an object that implements Countable

Postby jaybee » Sun May 27, 2007 8:09 pm

Nav I have alot of rellies dx with bc, my oncologist suggested that I have my genes tested. I went to the royal familial cancer centre on referal of my onc, it took approx 16mths to test my genetics. I am lead to believe that there are only approx 5% chances of being BRAC1 or BRAC2. I was convinced that i would be in that category given family history. There were many reasons for me doing the test both personal and family oriented. Yes hard choice I wanted to know and had my kids best interests at heart.
Testing came back neg go figure and it was such a relief for all. Our whole family still remains very vigilant in being tune with our bodies. IT IS VERY MUCH A PERSONAL CHOICE

yowyow
Forum Queen
Forum Queen
Posts: 5502
Joined: Mon Jan 29, 2007 11:56 pm
Contact:

Postby yowyow » Sun May 27, 2007 8:07 pm

I have just been off googling and reading that latest reports are showing 90% BRCA1 are triple neg.

Other reports are now saying that - studies are starting to show that being triple neg alone is a high risk
factor for BRCA1.

You would think at my age the risk of recurrance or new primary if I had BRCA1 will be
high considering the amount of years I plan of living. :idea:

Not going to rush out and do anything but is def worth asking Onc. the question.

Interesting that the hormone status can change - just stupid nasty Breast Cancer being tricky and sneaky :grr:
tricking us into thinking we dont need hormone treatment when in fact there is a possibility we do.
Last edited by yowyow on Sun May 27, 2007 8:09 pm, edited 1 time in total.


[phpBB Debug] PHP Warning: in file [ROOT]/vendor/twig/twig/lib/Twig/Extension/Core.php on line 1266: count(): Parameter must be an array or an object that implements Countable

Return to “Triple Negative BC”

Who is online

Users browsing this forum: No registered users and 2 guests