long term survival |
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wishy1 
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Joined: Feb 10 2009 Location: United States Status: Offline Points: 9 |
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 Topic: long term survivalPosted: Feb 10 2009 at 4:32am |
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Hi all...
just found this site. I was dx in '98 with Stage 3B Triple Neg BC at 36 years old. I had a 8CM tumor and all nodes positive.
As you can see...i'm still here today, and i never heard the term Triple negative until this year!
Boy did I try in vain to take tamoxifin, anything that would help to prolong my survival. needless to say...I couldn't and my Dr wouldn't..so I dealt with it day by day..and still do.
Not to say that I haven't had an easy time of things...I have a story as long as the years..not a year has passed that I haven't been radiated, stiched or probed, medicated and hospitalized..but I'm here and glad to say that I watched my son graduated from High School last year, and will see my daughter graduated this year. Something that I didn't think I would see when i was dx.
I'm here for a word of encouragment if anyone needs it!
xo
K
3B TNBC
8cm
all nodes positive/fixed matted etc
4AC/4Tax
Radiation
hysterectomy
3X breast reconstruction
yada yada yada
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gmoney2400
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Joined: Jul 29 2008 Location: United States Status: Offline Points: 22 |
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Posted: Feb 10 2009 at 4:39am |
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That is fantastic news especially since I was a stage 3 too!! Thank you.
Gillian
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Diagnosed April/08
Stage III, Grade 3 4AC/4Taxol completed May-August 08 October 08-Bilat-Mastectomy November 08- Radiation BRCA- |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Feb 10 2009 at 4:41am |
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Hi K, it is so nice to meet you and I'm so glad you've joined up with us.
What an inspiring story you are sharing, thank you for that also. It gives us strength and reassurance to see those who have had a longer survival time.
Would you believe even today sometimes women are not given the information at diagnosis of triple negative breast cancer but it is getting so much better and that is because this Foundation is working overtime to see that this all improves for women with this disease.
I'm truly sorry to hear you've had so many problems other than cancer during this time but you "sound" wonderful and you will be a joy to have to help us here with this mission and to support others with this diagnosis.
Jump in anytime you feel like it or start your own thread. We welcome your thoughts.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Okie Girl
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Joined: Nov 03 2008 Location: United States Status: Offline Points: 57 |
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Posted: Feb 10 2009 at 6:05am |
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Thanks for the encouraging news! I was diagnosed one year ago and am about to have my last reconstruction surgery. You are inspiring to all of us.
We can use your input here!
Brenda
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dx:1/11/08 Stage IIa, 2/1/08 bi-lat mast.,no node involvement, 3/4/08 4 rounds of A/C then 4 rounds of Tax., 9/14/08 reconstruction with expanders, implant exchange 2/25/09, nipples 8/11/09
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wishy1
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Joined: Feb 10 2009 Location: United States Status: Offline Points: 9 |
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Posted: Feb 10 2009 at 7:14am |
 You're welcome! These are only numbers...sometimes we put too much emphasis on the them.
xo
k
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wishy1
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Joined: Feb 10 2009 Location: United States Status: Offline Points: 9 |
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Posted: Feb 10 2009 at 7:19am |
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thank you!
yes...for a long time I beat myself up because I had the "bad" kind of BC and had to explain to people why I didn't take Tamoxifin. Believe me I would have if I could have!
People just don't "get" that there are many facets to Breast Cancer and that Hormones don't always play a part.
Most of my post treatment problems stem from my reconstruction efforts..and that is a long story. I also have several "spots' that they follow and my tumor markers like to jump up and down. But for the most part I'm proof that you can live with this diagnosis..and live well...for many years, and I plan to be around a while!
xo
k
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wishy1
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Joined: Feb 10 2009 Location: United States Status: Offline Points: 9 |
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Posted: Feb 10 2009 at 7:22am |
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Thanks Brenda,
good luck with the reconstruction. I haven't had too good of luck in that department...but finally have silicone implants that seem to like it in there!
I started out with a tram..big mistake for me, then had to have another mast on my other side...
be thinking of you!
xo
K
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ChrissieD
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Joined: Dec 30 2008 Location: United States Status: Offline Points: 131 |
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Posted: Feb 10 2009 at 9:27am |
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Hi K -
Congratulations to you. It is great to read stories like yours (of course not for what you have gone through with your reconstruction - although I am opting to get implants instead of DIEP so I am happy to hear that you finally are happy with your implants!)
Can I ask what you do for diet, supplements, and exercise. From what I have been reading there is a lot of evidence to suggest low-fat (under 30 grams of fat per day) high omega-3, certain supplements, flax seed, and exercise at least 5 days a week plays a huge role in no recurrence. I love to hear what the folks beating this desease are really doing.
Let us know. Thanks -
Chrissie
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39 from MA, Mom(8.5 and 6),
Lumpectomy IDC 1.5cm Stage I, Grade 3 ACx4 Taxolx4 dose dense started 11/17; Bi-lateral Mastectomy with expanders scheduled for 3/24/09 God is carrying me through ! |
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phyllishsu
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Joined: Jan 15 2008 Location: Taiwan Status: Offline Points: 6 |
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Posted: Feb 10 2009 at 9:37am |
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Thank you so much for sharing this encouraging news. It keeps me moving forward with hopes. I was diagnosed with tnbc when my daughters were 2 and 4, and I hope I can attend their high school graduation too! Hugs,
Phyllis
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Phyllis
Dx stageIIB 02/2006 |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Feb 10 2009 at 11:20am |
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Hi there K,
Welcome to the site, and it is so good to hear from a woman who is almost 11 years out from dx!!
You have been through it all, and I can well see why you would have been asking for the Tamoxifen. You didn't say if you had a mastectomy at dx, but I am assuming that, as you said then you had another mastectomy. May I ask where you received treatments? We live in Altoona, PA and Lori had her surgery at Magee Women's in Pittsburgh, but chemo and rads here.
You are definitely encouraging
, and perhaps more of the women dx with TNBC will start to come forward....and will find this site. Many hugs,
Nancy
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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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Eileen
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Joined: Jul 23 2008 Location: United States Status: Offline Points: 106 |
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Posted: Feb 10 2009 at 12:41pm |
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Thanks K it is always good to hear from a long time survivor . Thanks for the encouagement. Eileen
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DX:2/08,3/08 lumpectomy with SNB, clear margins, no lymph node involvement, 4 cycles A/C (dose dense) every 2 weeks, 4 cycles Taxol (dose dense) every 2 weeks, 33 rads finished 9/08, BRCA 1 and 2 neg
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wishy1
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Joined: Feb 10 2009 Location: United States Status: Offline Points: 9 |
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Posted: Feb 10 2009 at 1:22pm |
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hi nancy,
I live in Boston and go to Dana Farber Cancer Institute...fab docs there. i have been active in a lot of thier programs and have riden the Pan Mass Challenge 8 times.
I had a mast at dx with immediate recon with tram flap. That failed after 2 years...very unusual and then have been on a road to reconstruction since. I know have after another mast silicone implants on both sides.
I've been infection free for about a year, now...so things are looking up...or sideways sometimes LOL
 xo
K
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