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hello and thankyou from ireland

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anna hagan View Drop Down
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    Posted: Mar 17 2009 at 2:13pm
Hello everyone-just introducing myself-Anna from Ireland.
Can I say I have received so much help and information about triple negative breast cancer from reading the posts on these forums.
Sometimes I feel very isolated and afraid because treatment regimes and the understanding of this aggressive subtype of breast cancer  in the US is miles ahead of Ireland.
When I was diagnosed in Dec 07,my consultant did not mention any details about my pathology-only that I was hormone receptor neg and her2 receptor neg-tumour was 4cm-suspicion of lymphovascular invasion-grade 3-all lymph nodes clear.
After a mastectomy,I was started on  a course of 6 FEC 100.
I asked about the addition of a taxane but was dismissed and told that it was not a first line chemo when nodes were not involved.
I then asked if I could be considered for radiotherapy-once again this was ridiculed and I was told that my margins were clear and there was absolutely no indication for it.
I have never been asked to take test for BRCA1 or BRCA2.
I would like a prophylactic mastectomy on my left side -where I now feel an achey thickeneing(even though my mammo was clear in Dec08)
Because of all these deviations from what is practiced in America I
am riddled with uncertainty.I am paranoid about every little ache and pain-of which I have a few!!
What can I do-other than move to America??
I did get second opinions and they were no different.Triple negative bc has a very low profile here.
Please help!!!!
AnnaUnhappyUnhappyUnhappyUnhappyUnhappyUnhappyUnhappyUnhappyUnhappy
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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Mar 17 2009 at 2:29pm
 St.%20Pattys%20Fiddle Hi there Anna!
 
Happy St. Patrick's Day to you!!
 
Welcome! We hear from many women throughout the US and other countries, and it appears there is no consensus as to treatments across the board. You are not alone as to the doctors not informing you of the TNBC dx. That happens here in the states also...more times than it should.
 
Here in the states they are giving the taxanes, and many of the women are asking for the 12 week treatments. Smaller doses spread out over the 12 week time frame. There are times when the rads are not given if they do get clean margins. My daughter Lori was node negative and she had the ACT. Her stats are at the bottom of my post. She did have rads.
 
Do you have a family history of cancer? The BRCA gene mutation can come from either the mother or the father's side of the family.  Can you ask for an ultrasound of the other breast just to be certain?
 
Are you saying that not many women are dx with TNBc in Ireland? We do have a few members from Ireland.
 
Sweetie, you can move to America...we would love to have you.
Hugs,
Nancy


Edited by Nancy - Mar 17 2009 at 7:06pm
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 17 2009 at 3:18pm
Hi Anna,
 
Welcome to you, my gosh they turned you down on alot of things didn't they?  Do you by any chance live close to a border where you could consult over there?
 
We as Americans run into alot of the things you are saying.  Doctors have their different protocols they follow.  Sometimes we have to persist and shove studies under their nose but it doesn't always work.
 
Tell us more about yourself,  do you have family history?  Are you having periodic check-ups with your Onc and do they give you mammos or scans?
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Mar 17 2009 at 4:51pm
Dear Anna,

Welcome to our sisterhood. You could have been in Canada for all the times they told you 'no'.
 
Our wonderful American "advisors" show us the way to treat this breast cancer. My tumor was 3-cm, I had 3 positive nodes, I had vascular space invasion, and everytime I asked for something in Canada during my treatment it was no! But through the support and wisdom from the women on this site - we will all become empowered to have our needs met!
 
Knowledge is power and with all the love, support and wisdom I have gained from this forum I feel less afraid.
 
I wanted a prophylactic mastectomy - I got a "no" each time I asked. I had to fight for a mastectomy (they wanted to give me a lumpectomy).
 
Love,
Connie
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote alene Quote  Post ReplyReply Direct Link To This Post Posted: Mar 18 2009 at 1:20am
Welcome Anna
 
You know Anna...there are millions here in the states that get NO healthcare...I was 10 years without healthcare...before I could finally afford to purchase my own insurance...
My 1st mammogram was last May...my cancer had already spread and was 8cm..
 
So while it may be bad in Ireland...
 
Anyway...I've got quite a bit of Irish in me...and I did a little  online research on the BRCA thing over there in Ireland...You may be aware of this stuff...Let me see if I can find it...
 
Okay...I found one of the links...
 
There's also a breast cancer registry that has mortality,survival and incidence rates at.....
.
Another Hereditary Breast Cancer in Northern Irelandl....conclusion makes a case for screening...
 
(There's more out there...online)
 
Anyway...
Knowledge IS power...I ask for copies of everything...
 
I print studies etc...and show them to my doctor...
 
Perhaps...you can use some of this info...as justification as to why you want to be tested..
 
The one study said that the Cancer Action Center assisted in drumming up participants...maybe contacting them..perhaps they can help you find some of the doctors in the studies...perhaps they are still tracking the mutations...maybe it could help?
 
Here in the states...the squeaky wheel gets the grease...when it comes to social services...
 
I'd like to take get the BRCA1 BRCA2 test too...but my insurance here in the states wouldn't approve it...
 
Someone told me recently that one of the testing centers in the US...if you don't have insurance or if they won't cover it...will reduce the fee from 3500.00 to 300.00....Maybe that would work for you too...
 
Perhaps someone else on the boards out here...can shed some light on that...
 
So in summary....We're glad you found us...Hope you'll let us know...if there is anything we can do to help...We're only a post...or an email...away..Your'e not alone...We understand...
 
Sending you much love...and prayers
 
 


Edited by alene - Mar 18 2009 at 1:21am
DX 5/21/2008 TN 8cm TAC
Mast 12/08
Extensive Residual Lymphatic Invasion
Inop node clavicle
68 Rads
Stage IIIc
Recur 11/09 Her2+
Surgery 68 RADS
4/10 Biopsy Skin Mets TN
28 RADS
Stage IV
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Post Options Post Options   Thanks (0) Thanks(0)   Quote outnumbered Quote  Post ReplyReply Direct Link To This Post Posted: Mar 18 2009 at 4:15am
Hi Anna,
 
Sorry you are having a hard time.  I have attached a study from Ireland.  Maybe you can reach out to some of these doctors. 
 
 
I have had some difficulty myself as well and that is exactly what I have done.  I found a doctor in my vicinity that is involved specifically with tn research.  I see him next week.
 
I wish you the best.  Fight hard until you get what you need. 
 
Hugs!
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

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Post Options Post Options   Thanks (0) Thanks(0)   Quote anna hagan Quote  Post ReplyReply Direct Link To This Post Posted: Mar 18 2009 at 8:11am

Thankyou all so much for your kindness in taking the time to give me reassurance and information.I am overwhelmed.You have helped me tremendously to prepare for my meeting with my new oncologist next Monday.I will raise all these issues and persist until I make some progress.I am determined to raise the profile of TNBC in Ireland-north and south.

As we say in Ireland
'go raibh mile maith agaibh'--a thousand thankyous to you all
 
Anna
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Mar 18 2009 at 8:18am
Hi there Anna,
 
There is an article on the TNBC News, Resources & Tips forum which may be of interest to you....ammunition for you to take to the docs. It is "TNBC Report". Just click on the forum I just mentioned and go to page 2. Click on the article. Pam just posted it this morning. In fact there may be several articles of "ammunition" which may help.
 
Let's get you on your local news sweetie...TNBC then will be at the forefront in Ireland also.
Hugs,
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 18 2009 at 8:53am
Alene great information, thank you so much for sharing for all of us.
 
Thank you too Sara and we want to hear what you find out.
 
Anna, you too, let us know what you find out.
 
Good luck ladies!  Stand strong and hold down for your rights to be treated properly!!
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote anna hagan Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2009 at 4:13pm
hi ladies-
just finishing off my long list of queries for my visit with new oncologist tomorrow!!I have noted lots of your helpful tips and downloaded a number of reports on the news forum.
I will let you all know how I get on ---hopefully I can start to take some control over my post treatment follow ups and reward myself with a little peace of mind.
Thanks again for giving me the courage and confidence to challenge the system!!
 
 
 
Anna
Dx Dec 07-IDC-4cm-neg nodes-grade 3-TNBC-mastectomy Jan 08-6xFec100 completed Jun 08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2009 at 4:19pm
 Girls%20Rule Anna.
 
YOU GO GIRLFRIEND...YOU GO!! AND WITH OUR BLESSINGS...THEY WILL NOT MESS WITH A TN WOMAN....THEY DO NOT KNOW THE POWER IN NUMBERSBig%20smileBig%20smileBig%20smile
 
MANY HUGS,
NANCY
 
 






Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote josie33 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2009 at 4:38pm
Good luck, Anna -- we'll be thinking of you!! Clap
Sister DX'ed 11/08
Lumpectomy & SN biopsy 12/08
1.6 cm tumor, poorly differentiated, lymphovascular invasion, node neg (0/2)
Stage 1
DD A/C x 4, Taxol x 4, to be followed by rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2009 at 7:26am
Go get em Anna!Heart
Stage 2 2003
Stage 1 2007
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