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12-04-2007, 01:28 PM
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#1
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Member
Join Date: Dec 2007
Location: Ohio
Posts: 21
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Prognosis
<TABLE class=tborder id=post144104 cellSpacing=0 cellPadding=6 width="100%" align=center border=0><TBODY><TR vAlign=top><TD class=alt1 id=td_post_144104 style="BORDER-RIGHT: #cc0033 1px solid">I've been trying to find out the prognosis for someone with my statistics. I had ER/PR-, Her2+++, 2.1 cm IDC with no pos lymph nodes. I have completed 4 rounds of AC, then 12 weekly Taxol/Herceptin with Herceptin for the remainder of the year. I had a MDM with no radiation. What kind of statistics are out there on recurrance, and what should I be looking for? It's so hard to think I am going through all of this, then it will come back because of the HER2. Does it always come back, or how often, in my circumstances?
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12-04-2007, 02:17 PM
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#2
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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You are asking a question no one can answer with 100% accuracy....as you can see, my original diagnosis was somewhat the same, although my tumor was smaller, and yes I recurred but Herceptin was not available then for newly diagnosed. With the treatment you are getting, you are in the best spot to prevent recurrence....you just need to be aware of any changes, as we all do. If something doesn't seem right, get it checked out. Usually, if one is going to recur, it happens in the first 2 years...but even this is not set in stone....each of us is different, just like some treatments work for some of us and fail others.....do not dwell on the what ifs, live your life.....enjoy yourself....if by chance you do recur, it isn't the end of the world, just another hurdle to climb over. You have done all you can in your treatment to prevent recurrence, don't worry about statistics, they change every day!
__________________
"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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12-04-2007, 02:24 PM
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#3
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Hi Coach
The problem with your question regarding prognosis is that most of the
stats were done before Herceptin came along. Before Herceptin, Her2 positive cancer was considered "poor prognosis", but Herceptin has changed that.
I think we are the ones who will make up the new stats. Herceptin was originally used for only late stage breast cancer, now it is used for early stage as well. I don't think the stats are out there yet. If you do look at prognosis information on the internet, remember that they are not taking into account that you are having a year of Herceptin treatments.
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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12-05-2007, 07:29 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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I just want to add a few facts. Prior to Herceptin therapy in early breast cancer, Her2 BC had a worse prognosis BUT what does that really mean. All it means is that it was more likely to recur than BC that was only ER/PR positive. And what does THAT mean. Women who are only highly ER/PR positive can get Tamoxifen therapy (within the last 2 yrs, women who were also postmenopausal might get an aromotase inhibitor instead). Those drugs reduce the chance of recurrence (in the 5 yrs they are taken) by about 42%. Secondly, in most cases, highly ER/PR positive disease tends to be of lower grade and tends to grow more slowly. This is why there is a blimp in recurrence for this kind of cancer further out from diagnosis – around 7 years or so (this kind of cancer’s highest recurrence peak is still within the first 2 years just like Her2+ or triple negative disease (not ER+, not PR+ , not Her2+).
When comparing the hormone positive bc (that is NOT also Her2+ as some Her2+ women are also hormone positive too) to Her2+ disease prognosis statistics (all PRIOR to Herceptin therapy), prognosis was better for hormone positive disease – they had a drug for it and even if they didn’t, it tends to grow slower and not be as aggressive as Her2+ (or triple negative). However, if comparing Stage 1 disease women – a hormone positive woman has about a 95% chance of disease free survival at 10 yrs whereas a Her2+ woman (who is ER/PR negative) is at about 88%. So you see, even without Herceptin, not everyone recurs. Far from it. Now add Herceptin which gives a 52% improvement on recurrence rate and now that Her2+ woman is at 94%. Now add other lifestyle modification study data. Exercising (walking one hour per day 5 days per week) can reduce the recurrence rate for hormone negative women by 44% so now that number becomes 97.36%! They also say that a low fat diet (20grams of fat per day) reduces recurrence rate by 21% (for hormone negative) so you are now near 98%. These stats make the assumption that the woman has taken chemo and had radiation if she had a lumpectomy. Also, even though there have been no definitive studies, the kinds of fats you eat make a bigger difference than if you can really adhere to such a low fat diet (you really have to be a vegan to do the 20 grams of fat – not even vegetarian will do it and the benefit is kind of small) so read the thread on the Mediterranean diet and RhondaH’s breast cancer diet and all of R.B’s posts on balancing the omega 6 to omega 3 (aka fish oil). As you can see, even without Herceptin, survival is really real for most women.
Have faith – in yourself, your treatment, and your caregivers. This is doable and survivable. So far so good for many of us. Also, this board is very valuable for cutting edge info on prevention, treatments, side effects, nutrition. Also, many who are members do not visit because they do not need to because they are survivors. Many like Juanita, Marejo, others and me still come to show our support, continue to remain informed and cheer on our new and old friends. We are here for you and I know you can do it!
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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12-05-2007, 08:43 AM
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#5
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Senior Member
Join Date: Nov 2007
Location: We presently live 1 1/2 hrs fr a city. in manitoba canada
Posts: 148
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becky thank you for your explaination...i really needed perspective.
suzanne
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12-05-2007, 08:58 AM
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#6
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Guest
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Becky,
Thanks. That was excellent. I was thinking how nice it would be if every woman diagnosed with HER2+ were given a copy of your post.
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12-05-2007, 09:15 AM
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#7
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Senior Member
Join Date: Aug 2006
Location: Poland Ohio just a little south of Youngstown.
Posts: 473
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Once again, the voice of reason! Thanks Becky, I copied and saved your great post, so that I can read it often. So much good information and an easy read.
Hugs to you
__________________
Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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12-05-2007, 09:23 AM
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#8
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Senior Member
Join Date: Sep 2005
Location: Central Florida
Posts: 503
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Becky,
Only YOU explain it better than anyone !!!
This should be posted all by itself under its own "defying statistics" heading
Maria
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12-05-2007, 10:34 AM
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#9
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Joe....
could we put Becky's message somewhere people could read over and over very easily? Thank you, ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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12-05-2007, 11:42 AM
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#10
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Becky does it again!!
Add my kudos here to Becky - thank you for such an informed and uplifting explanation. I will definitely print out your post and put it in my Her2neu+ file.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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12-05-2007, 11:54 AM
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#11
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Member
Join Date: Oct 2007
Location: Illinois
Posts: 8
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Awsome Becky...I always look for and read your posts.
Thanks!
Suysan
__________________
Stage I - 1.9 cm, Negative Sentinel Node
Triple Positive ER/PR/HER2
April 2007/dx & lumpectomy
May 2007 re-excision
4 DD A/C
36 Radiation tx - done 11/6/07
Starting Tamoxifen & Herceptin 11/8/07
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12-05-2007, 12:43 PM
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#12
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Thank you Becky. I, like the others, appreciated that little synopsis of her2 disease and recurrence. Also, as the others have said, your explanations, your encouragement and just your overall positive attitude to this board is so much appreciated.
You know..........God has blessed each of us with special gifts and talents. Gifts and talents that I believe were meant to be shared with others to make this "journey" a better one. You, dear Becky, use your gift of knowledge so wonderfully as you share what you know in a way that makes it easy to understand for the rest of us. Thank you for taking the time to use your "gift" with each of us.
I, for one, thank God for you.
Hugs dear "sister!"
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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12-05-2007, 02:18 PM
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#13
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Senior Member
Join Date: Feb 2006
Location: Vancouver Canada
Posts: 72
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You are such a smart cookie Becky,
Thank you!
Jade
__________________
Dx Nov.04 - Stage 1, Grade 3, widespread high grade DCIS, Paget's disease of nipple, 8mm tumor invasive DC (ductal carcinoma), ER/PR-, HER2+++
Nov.04 - left mast., clear margins, 6 of 6 nodes clear
Feb.05 - began EC chemo, 4 rounds (every 3 weeks)
Aug.05 - began Herceptin every 3 weeks for 1 year
Aug.06 - ended treatment
NED
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12-05-2007, 02:45 PM
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#14
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Also want to add my thanks. Facts help combat fear. Happy Holidays and God bless us every one.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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12-05-2007, 07:29 PM
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#15
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Becky,
Wow, thank you for that. I feel so hopeful after reading your post. I am always concerned since I am a stage 3er but I just got a huge boost from you.
I agree with you Ma, everyone who comes to this board should read Becky's post.
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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12-06-2007, 11:40 AM
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#16
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 25
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Becky,
Without sounding totally repetitive !!!! Very nicely put. (I understood it all..lol) Thank you for sticking around to help us newbies out. Take care...
Pam
__________________
Pam (age 40)
bi-lat mastectomy no recons.
4 IDC along with 4 DCIS
no node involvement SNB (8 nodes removed)
Her2+++ FISH (all 4 primaries)
3 ER pos & 1 primary ER/PR pos
2 primaries Grade II other 2 Grade III
sizes of tumors 1st .8cm 2nd .7cm 3rd 1.2cm 4th .7cm
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12-06-2007, 04:04 PM
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#17
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Senior Member
Join Date: Aug 2006
Location: So California
Posts: 223
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Thank you Becky
Thank you Becky. I cannot say it anymore eloquently then the other ladies. You, Lani, Marejo, and many new and old timers are the reasons that I continue to seek out this board. Your willingness to continue to educate, share, encourage and just "be there" for everyone is a wonderful gift.
__________________
Leslie's Sister (Lisa)
Diagnosed 5/17/06
Left breast Stage II
5 cm. Her2Neu+++, ER-, PR-
1 positive node out of six,
double mastectomy 6/9/06;
TCH started 7/12/06
last chemo 10/25/06
herceptin ended 6-11-07
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