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05-12-2010, 06:11 PM
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#21
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Senior Member
Join Date: Oct 2005
Posts: 476
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Re: Five years out???
I refused herception, chemo and radiation. I will be NED sept 2010. Just add to your stats.
__________________
Ann
Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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05-12-2010, 07:00 PM
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#22
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Senior Member
Join Date: Nov 2005
Location: Colorado
Posts: 76
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Re: Five years out???
I celebrated 5 years in April. I am doing well (no recurrence) and am really convinced Herceptin is responsible. Yea Herceptin!!! I guess I need to change my signature.
__________________
Karen Raines Hunt
Dx April 2005 at age 46
stage 3A, very large (12cm) tumor
2 positive axillary lymph nodes
ER+/PR+, Her 2 +++
Bilateral mastectomy, radiation, reconstruction, A/C, Taxol, Herceptin, Tamoxifen, Aromasin
5 yrs since diagnosis and NED
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05-13-2010, 05:59 AM
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#23
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: Five years out???
Tricia
Congrats early on 5 years...it is a great milestone...I think this shows the value of the early Herceptin group....although I passed my eight year mark, I didnt get the adjuvant Herceptin and I have had to fight for 8 years......may you be blessed with 50 more!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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05-13-2010, 10:03 AM
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#24
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: Five years out???
5 years ago this month I was diagnosed, and on June 14th had bilateral mastectomy and consider that my "Cancerversary"
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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05-14-2010, 10:37 PM
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#25
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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Re: Five years out???
Thanks for keeping score, Tricia! I am so thrilled to be added to the list. I was diagnosed with BC in 1985, treated only with bilateral mastectomy,( no chemo), then mets to spine in 1990, (again no chemo, but psychonueroimmunology, self-hypnosis and vegetarian diet). Cancer-free for 15 years then her2 nodes in lungs were found after a heart attack in 2004. I was treated with 15 months herceptin, with navelbine added the first 6 months. That will make it 6 years in June this year since first her2 diagnosis. Be sure to post the accumulated score for all of us to rejoice in! What a blessing her2 has been! Hugs, "The other TriciaK"
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05-15-2010, 03:30 AM
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#26
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Senior Member
Join Date: Sep 2005
Location: melbourne, australia
Posts: 267
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Re: Five years out???
I'm 6.75 years past diagnosis. I had late Herceptin.
__________________
Christine
DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
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05-15-2010, 04:01 AM
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#27
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Senior Member
Join Date: Oct 2006
Location: Fredericksburg, VA
Posts: 93
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Re: Five years out???
I was 5 years out in February. They were not giving Herceptin for early stagers at that time. After mets were diagnosed the following year, I got Herceptin. Still waiting for NED...
__________________
Liz
3/05 Initial dx invasive dc 2 cm lump, age 39
lumpectomy & 3 of 5 nodes +, ER+/PR+, Her2+++
alternative chemo 5/05-7/05, rad 8/05-10/05
7/06 dx mets to vertebrae, pelvis & chest lymph nodes
8/06 - 10/06 tamoxifen, herceptin, oophorectomy & zometa
11/06 PET/CT showed continued bone mets, new spot on liver
12/06 began taxotere/herceptin 1x/3 weeks,
2/07 - 2-08 NED!
3/08 progression, start taxol/herceptin weekly, monthly zometa
8/08 start ai & herceptin
12/08 - progression, start weekly navelbine/herceptin thru 6/09 & monthly zometa
7/09 - PET/CT showed improvement in spine, but 2-3 lymph nodes in chest became active
9/09 - 11/09 - weekly abraxane/herceptin
12/09 - PET/CT - chest lymph nodes resolved, progression in spine & pelvis
2/10 - 6/10 - start tykerb/xeloda, progession in spine & pelvis
7/10 - start taxotere/carboplatin/herceptin
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05-15-2010, 05:06 PM
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#28
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Five years out???
Thanks so much everyone for taking the time to reply to this thread.
I'll give it a few days and we should have an idea of how herceptin has made a difference to us, although I'm thrilled to see a few ladies who did'nt get this drug still NED 
Many congrats to you all!!!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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05-20-2010, 05:25 PM
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#29
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Senior Member
Join Date: Sep 2007
Location: Dublin, Ohio
Posts: 29
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Re: Five years out???
I just celebrated my five year mark last weekend!
__________________
Lori
Diagnosed 07/05, Stage 1
Extensive DCIS, .5 mm invasive
Mast
No nodes.
10/05 4 A/C & 1 yr of Herceptin
06 Proph Mast
Lat Flap Recon - failed on one side, replaced w/expander
NED
HER + 3, ER-, PR-
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05-21-2010, 11:22 AM
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#30
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Five years out???
Many congratulations Lori!!!
For anyone keeping a watch on this or simply curious, so far we have the tally below-
18 Had herceptin (no recurrance)
3 No herceptin (no recurrance)
Huge congrats to everyone still NED, and hope other's will add their comments as we need quite a few more to get an overall view. however, it's inspiring to see so many early stagers still doing well either with or without herceptin
Thanks everyone for posting !
(Thanks Sheila for your good wishes too!)x
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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05-22-2010, 06:04 AM
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#31
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Guest
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Re: Five years out???
I, too, am five years out with no recurrence. Diagnosed in Feb. 05 at age 45, stage IIIA, 6 mm tumor, 3/6 nodes positive, HER+++. Had bilateral mastectomy, Herceptin and the usual concoctions of poisons.
I just had my annual oncologist visit this week and I asked her about the five-year mark and what it really means. She hedged a bit, but said it's great to make it five years with no recurrence because most recurrences do occur in the first five years. But she also said, in not so many words, that reaching the five-year mark doesn't mean I'm "home free."
Like all of us, I think about every symptom and ache, but I continue to try to just live my life. I have two teenagers and I pray every day that I will be here for them for a VERY long time.
It's nice to read about so many no-recurrence survivors ... may God bless all of us (no matter where we are in our journeys) on this wonderful board.
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05-22-2010, 10:57 AM
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#32
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Senior Member
Join Date: Jul 2006
Posts: 463
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Re: Five years out???
9 years from stage IIIA diagnosis (details below). No Herceptin. I was in the trial but lost the toss. NED since primary treatment.
Debbie Laxague
__________________
3/01 ~ Age 49. Occult primary announced by large (6cm) axillary node, found by my husband.
4/01 ~ Bilateral mastectomies (LMRM, R elective simple) - 1.2cm IDC was found at pathology. 5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP's B-31 adjuvant Herceptin trial (no Herceptin, inducing a severe case of Herceptin-envy): A/C x 4 and Taxol x 4 q3weeks, then rads. Raging infection of entire chest after small revision of mastectomy scar after completing tx (significance unknown). Arimidex for two years, stopped after second pathology opinion.
2017: Mild and manageable lymphedema and some cognitive issues.
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05-22-2010, 12:48 PM
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#33
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Five years out???
I'm 6 years out, diagnosed in Jan. 2004. No chemo, no herceptin, but still NED. (I'm assuming the spot on my nipple that will be tested this Thursday is nothing to worry about... )
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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05-22-2010, 01:21 PM
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#34
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Senior Member
Join Date: Aug 2009
Location: Owasso, OK
Posts: 185
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Re: Five years out???
I am just one year out, but thanks to all the wonderful people in the medical profession, and on this board, I plan to be here and let everyone know when I hit the five year mark! Thanks for all the honesty, laughs, inspiration and encouragement. And to all my wonderful her2 sisters, as my nearly 10 year old daughter says, you rock!!!
__________________
Hayley
Oklahoma
3/35/2009 - Diagnosed, age 39
5/7/09 - Mastectomy and reconstruction started. Two tumors found. Tumors were side by side. DCIS tumor was 2.8 cm, ER-, PR-, grade 2. Invasive tumor was 1.1 cm, poorly differentiated, grade 3, ER+90%, PR+95%, HER2+3. Thankfully, no node involvement.
5/29/09 - Second surgery resulting from difficulty healing from mastectomy.
6/2/09 - Began Herceptin treatments
6/23/09 - Began Taxotere and Carboplatin treatments along with Herception every 3 weeks.
10/06/09 - Completed Taxotere and Carboplatin - Yeah!!!
10/27/2009 - Herceptin maintenance and began Femara
12/10/2009 - 2nd stage reconstruction surgery
2/2010 - Body rejected saline implant
3/18/2010 - Second stage reconstruction using silicone implant
5/4/10 - Completed Herceptin - YEE-HAA!
May '10 - Body rejects silicone implant...taking a break.
11/29/10 - Hysterectomy
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05-25-2010, 07:45 AM
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#35
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Senior Member
Join Date: Feb 2010
Posts: 151
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Re: Five years out???
i see alot had arimedex. what is that?
I am new to this. foumd lunp myself jsut 3 months after a mamorgram that said i was fine. i am 56 yrs old . have stage 3C. 31 nodes removes 18 positive. 2 in my neck showed up on PET scan are inoperable. starting herceptin and taxetol next week, get chemo every 2 weeks neg for pro and estrogen. HEr2 at 60% or aomething like that
my surgeon told me he didnt expect me to be a breast cancer surviver! this site has given me so much encouragement. Hope I am as blessed as you all are in 5 yrs. praying this will work and i can report NED.. i will get 6 weeks of radiation too
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05-25-2010, 08:03 AM
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#36
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: Five years out???
Candlegranny,
Arimidex is an anti estrogen pill for those of us who are etrogen postive who are post menopausal. Since you are negative for estrogen this would not be a treatment for you.
I am sorry to hear that you were dx. - but yes you have found a great group here.
Shame on your doctor for saying to you that you would not be a survivor....maybe it would be better for you to get another opinion. A second opinion by a breast cancer specialist - one who is used to fighting back this disease and winning!
Where do you live...the ladies here can offer other dr. close to your home that you could consider.
Best Wishes,
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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05-25-2010, 08:08 AM
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#37
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Five years out???
Hi candlegranny,
Sorry you had to go looking for us and that you have gotten on this rollercoaster you didn't want.
I am always surprised to hear about doctors who seem to be able to predict your outcome. There is no way to know whether you survive or not. I know people who were diagnosed with stage I and who are dying, and I know several people who had stage IV and are still very much alive, even more than 12 years later. So forget about what he said, he doesn't know what he's on about. Statistically your chances may not be so good, but you are not a statistic. You could very well be one of those who beat the odds.
I suspect you are not getting arimidex, because this is hormonal therapy, and as your tumor wasn't hormone sensitive (ER/PR positive) it probably won't help you.
If you have any doubts about your treatment plan, go for a second opinion. Have you had a mastectomy? lumpectomy?
Hang in there!
Hugs
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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05-25-2010, 08:53 AM
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#38
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Senior Member
Join Date: Feb 2010
Posts: 151
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Re: Five years out???
i had a modified radical masectomy of my left breast. the surgeon is the one that said ' in hia opinon' so after a little thought i realized he is not GOd and he dont know my will! I think he is looking at positive nodes. my tumor was 2.7 cm. but hey.. 31 taken out amd only 18 positive that is so much better than 31 positive isnt it? my oncologist told me that since i have no underlying health issues he dont see any reason wny i wont be here 10 yrs from now. God has the final say so; i am so glad i found this site. i found several things on internet.. but this site uplifts me
i live in Ky. fort knox area. i go to Louisville for treatments.
you ladies are awesome. i am so blessed to have found this site.
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05-25-2010, 08:14 PM
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#39
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: Five years out???
Welcome Candlegranny...I know you will be here on our site a very very long time indeed. Great attitude.
hugs,
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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05-25-2010, 10:34 PM
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#40
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Senior Member
Join Date: Sep 2005
Location: Vancouver, Canada
Posts: 329
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Re: Five years out???
yes 5 years out. Dx in Dec. 2004, stage 3C and IBC, HER2 +++, chemo, surgery radiation and then 1 year of herceptin. So far so good and hope to be NED for years to come.
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