Roll call

To keep information about Triple Negative Breast Cancer together and easier to access.
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shereejoy
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Re: Roll call

Postby shereejoy » Thu May 26, 2011 10:43 pm

Oh thanks Lisa for popping in... I really appreciate that vote of confidence! Congrats on 3 years, that is fantastic... I aspire to be like you! I have to for my children. Do you have children? Did you change your diet at all??? I have been reading lots, but struggeling to really do the right thing! Was the genetic testing pretty intense? Do you have sisters? and history???
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

Lisa8
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Re: Roll call

Postby Lisa8 » Thu May 26, 2011 10:29 pm

Hi Shereejoy and Karen,

I was dx over 3 years ago with triple neg bc at the age of 30. My lump was very aggressive, grade 3. Mine was due to genetics as I tested positive to BRCA 1 and 2 mutations.

I understand your concern as I was very anxious about being dx with triple negative bc and reading very scary info on the internet. There are many of us doing well now years after our diagnosis.

Best wishes,

Lisa :wave:

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shereejoy
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Re: Roll call

Postby shereejoy » Thu May 26, 2011 10:25 pm

I think in my weakest moments of sickness I am very doom and gloom, and cry very easily esp when my partner is not being very sympathetic with cuddles and kisses that I soooo want right now but that is just not him. Every day he just tells me I am going to be fine! But when I am well like today, I just try to block it out of my mind.... but yes having young children I am fearful very fearful.... it's not me I worry about it is them!

The fact I found it at stage 3, I have beaten myself up about not finding it earlier, but it was just nasty there was no way of picking it up earlier but then my partner turns me around to the thinking of "thank god I found it"! Scarey to think really.

Yes all and all my family and friends are amazing, certainly not doing this alone that is for sure....

I am on the countdown to my chemo and I think I will be doing cartwheels when I am done.

So how did your physc turn around your way of thinking? A strategy I am sure I will need to learn, the constant worry will do our heads in.

I have no idea about the reconstruction yet actually, haven't gathered alot of information yet, just going thru the processes of beating this thing first.
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

Kazzie61
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Re: Roll call

Postby Kazzie61 » Thu May 26, 2011 10:09 pm

Yes Shereejoy, it is aggressive unfortunately. They all seem to be grade 3 but I'm very lucky mine was caught at stage 1.
I did a lot of research in the first few months & it always felt like it was all doom & gloom. The fact that it is so much more likely to come back particularly in the first couple of years makes it harder to process. In fact I had myself so convinced it would come back & kill me - & soon - I ended up seeing a phsycologist & it did me the world of good. I still see her & plan to keep doing so for who knows how long. She has taught me to think differently & look at things differently. While sometimes I feel so unlucky I know I really am lucky :wave:
I can only imagine the fear you are living with & i hope you have a very supportive family & friends. I found one of the best moments when I walked out of chemo for the last time!! And oh the joy of food once again & to finally have a bit of hair!! I hope your chemo isn't too unbearable.
What sort of reconstruction are you thinking of having? I think getting through that stage gives a sense of 'moving on'. Well it has for me anyway.
Karen xox
Dx 5/10/10, Stage 1, Grade 3, Triple Negative.
Lumpectomy, Node Negative, 6 x TC Chemo, BMX with immediate DIEP 20/05/11
Dx stage 4, bone mets 20/05/12, liver mets 07/02/13
Radiation June 2012
Monthly Xgeva June 2012
Chemo...Paclitaxel/Gemzar December 2012
Chemo...Xeloda Feb 2013

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shereejoy
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Re: Roll call

Postby shereejoy » Thu May 26, 2011 9:47 pm

ummm... what else is there to tell.... I have been told that the triple negative is very aggressive and esp in young people which I am! Never in my wildest dreams did I think I would be 35 turning 36 with breast cancer! So apparently bad luck, I don't think there is alot of research on triple negative to date from what I have been read but hopefully soon. Atm the moment it is bad luck and the younger you are there is a chance it is genetic. I want to get the genetic testing done for the reason I have 2 sisters and it has to start somewhere... I was even told by my onc that there is a slight chance I could have mutated my own gene in my mothers womb... so lots of things to get investigated in the future but for now this dreaded chemo, then radiation, then reconstruction. You are lucky to have caught it early and def a wise choice of a double. My surgeon begged and pleaded with me not to have a double right from the start as she needed to put my port-a-caff on my left side and couldn't risk infection which would hold up chemo. So once I have my chemo and radiation, I will have the left off and reconstructed all in one surgery. Good luck with your pathology results... keep us posted!
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

Kazzie61
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Re: Roll call

Postby Kazzie61 » Thu May 26, 2011 8:38 pm

Hi Shereejoy

I was Very lucky my cancer was detected early. I have been having routine mammograms since I was 40 (now 50) for no particular reason other than my doctor suggesting it was a good idea once I turned 40.
So when i had my lumpectomy, my main node was removed & it was negative. There were 6 tumors (as I said) & it had spread to my blood vessels. So it was straight into chemo to "get rid' of it a.s.a.p.
There was still DCIS in the breast which is why the mastectomy was necessary, I had plenty of time during chemo to make the decision to have unilateral or bilateral & like you, made my choice to take away that fear for the future that I know would be constantly there.
I asked the surgeon & the onc if they thought I might have the gene given it was Triple Negative & I was under 50 at the time of diagnosis & they both seem to think I wouldn't have it as I am the only one in the family! Well, it has to start somewhere I'm thinking!! As I have 2 daughters - age 25 & 27 - I haven't yet decided whether to pursue the test in or not. I guess I'll get through this first & go from there.
Hoping to get my pathology results from the mastectomy tomorrow & it's all good news!!
I would love to hear more of your story.

Karen
Dx 5/10/10, Stage 1, Grade 3, Triple Negative.
Lumpectomy, Node Negative, 6 x TC Chemo, BMX with immediate DIEP 20/05/11
Dx stage 4, bone mets 20/05/12, liver mets 07/02/13
Radiation June 2012
Monthly Xgeva June 2012
Chemo...Paclitaxel/Gemzar December 2012
Chemo...Xeloda Feb 2013

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shereejoy
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Re: Roll call

Postby shereejoy » Thu May 26, 2011 8:17 pm

I just haven't met anyone other then Blizz my lifesavour.. love to meet the rest of you!
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: Roll call

Postby schoolteacher » Thu May 26, 2011 8:02 pm

There are a few triple negs on the forum..Nav (yow yow) for one. I know she has posted many research articles on the topic.

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shereejoy
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Re: Roll call

Postby shereejoy » Thu May 26, 2011 7:51 pm

Hi Karen,

Have you had any genetic testing done?

Appears the triple negative is the rare one, aren't we lucky??? :wink:

I had 3 tumours in my right breast, the largest being 5cm. I had a right breast mastectomy. Did you have any lymph nodes involved? I had 13 of my 26 infected with cancer :( I am currently undergoing treatment and have just finished my third cycle of FEC. I need to have 3 more cycles of Taxatere... I am yet to undergo radiation and reconstruction.

I am going to get my left breast off at another stage as I just don't want the worry.

I actually had 4 tumours as no.1 and 2 were two seperate tumours that grew into one in 2 weeks (a growth of 1.5cm), such an aggressive cancer this triple negative.
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

Kazzie61
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Re: Roll call

Postby Kazzie61 » Thu May 26, 2011 7:38 pm

Present! Yes, i also am triple negative & haven't come across many either.
I was diagnosed in October, 2010 after routine mammogram. Had 6 lumps removed in lumpectomy, given the news I was Triple Negative which I have to admit took me a bit to get my head around & understand. I then had 6 rounds of TC chemo followed by bilateral mastectomy & immediate DIEP reconstruction. So here I am, after a whirlwind 7 months perched up in my hospital bed, day 6 post surgery!

Karen
Dx 5/10/10, Stage 1, Grade 3, Triple Negative.
Lumpectomy, Node Negative, 6 x TC Chemo, BMX with immediate DIEP 20/05/11
Dx stage 4, bone mets 20/05/12, liver mets 07/02/13
Radiation June 2012
Monthly Xgeva June 2012
Chemo...Paclitaxel/Gemzar December 2012
Chemo...Xeloda Feb 2013

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shereejoy
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Roll call

Postby shereejoy » Thu May 26, 2011 3:17 pm

Who here is triple negative?? I haven't really come across many of you!
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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