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02-28-2007, 08:00 AM
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#1
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Senior Member
Join Date: Sep 2005
Posts: 312
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Information from those with small size tumors at diagnosis
A question for all of the Her2's that were originally diagnosed with a small tumor, stage one.
Please post any information that you think others that are confronted with a similar diagnosis would find helpful. Age, size of tumor, treatment, all the info about the tumor, etc.
I will go first. Most of the info is found in my signature. I am just over two years out with a 9mm tumor (was thought to be 4 mm prior to lumpectomy) and NED. I was 60 years old at the time of diagnosis.
__________________
Janet
Endometrial Cancer 2002
Mammogram 11/2004
Lumpectomy 12/2004
Stage 1, 9mm DCIS, grade 2, Her2+++, ER/PR negative
Refused A/C as recommened by two oncs.
35 treatments of radiation that ended March 4, 2005
Changed oncologists and began
Taxotere/Herceptin August 2005. Finished Herceptin July 2006
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02-28-2007, 09:01 AM
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#2
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Senior Member
Join Date: May 2006
Posts: 144
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My signature includes my diagnosis & treatment so far. As you can see, while still on Herceptin I developed a recurrence. Today I go to find out the result of PET/CT & biopsy to see what I need to do next.
So I was initially Stage 1, now I'm not sure.
- Anna
__________________
- Anna
Stage I - DX 9/2005 ER/PR-, HER2+, grade 3, DCIS, IDC multi-focal (1.05cm)
DD 4 A/C finished Jan 31, 2006
Herceptin weekly finished Jan 31, 2007
recurrence to chest wall on last month of Herceptin
Stage 3B - 3/15/07 - 2 carcinomas in dermal lymphatic
Rads finished 6/5/07
12x TH finished 9/10/07
12/07 - Clear scan!
3/08 - 4 month Melatonin trial
1/09 - osteoperosis - start Alendronate
2/09 - 4-month Simivastin trial
3/13 - take drug holiday after 5 years of Alendronate
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02-28-2007, 09:10 AM
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#3
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Senior Member
Join Date: Sep 2005
Posts: 161
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My history follows:
__________________
Diag. Oct. 2004 age 54 left breast
Stage 1 grade 3; 6mm IDC; unknown amount of DCIS
with comedo necrosis; node neg.
Nottingham Grade 7/9
ER 91% PR 62%; Her2 3.6 by ICH; KI-67 35%
Nov 2004 Lumpectomy; SNB failed so had
full axillary clearance;
Dec 2004 2nd lumpy for clean DCIS margins.
Jan/Feb 2005 4 A/C dose dense;
33 rads finished 6/2005;
Began 5 years Arimidex in 6/2005
No Herceptin
9/2007 Quit Arimidex due to severe side effects.
NED
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02-28-2007, 09:33 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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as you can see by my signature, I had a small tumor...glad you started this thread, will be interested to follow it!!! Right now I am wondering what types of scans I should have for follow-up. My oncologist does not believe in "routine" scans in a case like mine (early stage...etc.) but says any scan I want to have, she will order it.
__________________
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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02-28-2007, 09:34 AM
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#5
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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ps. I was 54 yrs old at time of diagnosis!
__________________
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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02-28-2007, 10:05 AM
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#6
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Senior Member
Join Date: May 2006
Posts: 144
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I didn't have any scans during treatment or after, until the recurrence was found. My onc. said for early stage the only followup would be bloodwork, physical exam ev. 3 months, and how I was feeling. She said scans can have false positives.
Because of the lump I found my onc. ordered a whole body PET/CT.
- Anna
p.s. 49 & pre-menopausal at initial diagnosis.
__________________
- Anna
Stage I - DX 9/2005 ER/PR-, HER2+, grade 3, DCIS, IDC multi-focal (1.05cm)
DD 4 A/C finished Jan 31, 2006
Herceptin weekly finished Jan 31, 2007
recurrence to chest wall on last month of Herceptin
Stage 3B - 3/15/07 - 2 carcinomas in dermal lymphatic
Rads finished 6/5/07
12x TH finished 9/10/07
12/07 - Clear scan!
3/08 - 4 month Melatonin trial
1/09 - osteoperosis - start Alendronate
2/09 - 4-month Simivastin trial
3/13 - take drug holiday after 5 years of Alendronate
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02-28-2007, 10:50 AM
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#7
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Senior Member
Join Date: Oct 2005
Posts: 476
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My dx and treatment (or the lack of) follow. I just saw my onc yesterday and we discussed the possibility of metastasis. He said that for HER2 positive patients, the recurrence, if it ever happens, will be from 18 to 24 month on the average. For HER2 negatives, the danger zone is about 4 to 5 years. The micro invasions will take that much time to build up to the point of detection or symptoms. Whether I got chemo or not, the consequence is only a few percentage. For the risk of improving that little margin of advantage, the trade off is the danger of chemo and radiation. Of course, my option of doing mastec shifts the odds in my favor for a few points. Overall, he had no objection to my own decision. I work in a large hospital and have seen many cases.
__________________
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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02-28-2007, 11:22 AM
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#8
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Senior Member
Join Date: Jun 2006
Posts: 153
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I was 35 and premenopausal at diagnosis. I had 4.2 cm of DCIS grade 2/3, and 7mm er/pr- her2+, SBR grade 2 (6/7), mitotic count of 1, sentinnel node negative, no lypho/vascular invasion, no neural invasion.
5/05 clean PET/CT scan clean other than left breast
6/05 bilateral mastectomy, one side of recon failed with infection
8/05-11/05 4 AC
11/05-12/06 Herceptin for 1 year
10/05 head CT scan and chest xray both normal
3/06 bone scan normal
10/06 transvaginal ultrasound normal
11/06 abdominal CT normal
12/06 chest xray normal
1/06 bilateal DIEP reconstruction
__________________
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02-28-2007, 12:21 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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1.6 IDC,DCIS HER2+++,ER+,PR+, no Herceptin
By small, do you mean stage 1/under 2 cm, Janet? If you do...
1.6 cm IDC with DCIS
HER2+++, no FISH, ER+ PR+
Age at dx, 51
NED following CAF x 6, IMRT, hormonal treatment
5 years out
1 brain MRI last year for vertigo/falling plus mildly elevated LFTs (normal)
annual mammos
1 bone scan at dx, 1 bone scan last year
1 DEXA scan
2 chest/abdomen CTs (normal) for unresolved right-sided pain
1 chest MRI (normal)
AlaskaAngel
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02-28-2007, 01:28 PM
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#10
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Senior Member
Join Date: Feb 2007
Posts: 108
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You can see below my Dx and treatment plan.....
Best of luck!
__________________
Age 50, premenopausal
Dx 1/2/07 DCIS/IDC
Lumpectomy 1/4/07 1.1cm tumor
SNB 3 nodes clear
Stage 1, Grade 2, HER2+++ (FISH 6.8)
ER + / PR +
TCH, 6 rounds, finished 6/1/07!!!
Herceptin to continue for 1 year
36 rads finished 8/22/07
Port out 8/27/07
Switched to Herceptin weekly for joint pain
Ooph 11/13/07
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02-28-2007, 01:34 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Here's mine...
Take care and God bless.
Rhonda
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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02-28-2007, 02:31 PM
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#12
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Heres mine
Stage 1 .7cm tumor or 7mm
Stage IV 16 months later
The rest is below
__________________
"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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02-28-2007, 03:38 PM
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#13
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Senior Member
Join Date: Sep 2005
Posts: 312
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Glad so many are posting. I hope you that haven't posted will do so.. Angel, any in the stage one range would be appropreate. It might be worthwhile to have a permanent posting of this so the newbies could find immediate answers to their question. There is so little time for them to make decisions. Could also be one for the other stages women are diagnosed with and their treatment since that is a common question asked.
Thanks all
__________________
Janet
Endometrial Cancer 2002
Mammogram 11/2004
Lumpectomy 12/2004
Stage 1, 9mm DCIS, grade 2, Her2+++, ER/PR negative
Refused A/C as recommened by two oncs.
35 treatments of radiation that ended March 4, 2005
Changed oncologists and began
Taxotere/Herceptin August 2005. Finished Herceptin July 2006
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02-28-2007, 04:01 PM
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#14
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Senior Member
Join Date: Jan 2007
Posts: 138
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Hi,
Below is my information:
Age: 49 - premenopausal
Stage 1, node negative
1.3cm tumor with DCIS 1mm from chest wall - thought the tumor was 8mm before surgery
Lumpectomy
er+ 95%, pr+10%
Her2+
Dose Dense AC and then T
Herceptin for 1 year every 3 weeks
35 rads
Aromasin for 5 year
BRCA1 & BRCA2 negative
12th person on my mom's side to get bc
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02-28-2007, 05:33 PM
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#15
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Senior Member
Join Date: Sep 2005
Location: Lumberton, Mississippi
Posts: 118
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Hi:
I was 55 at diagnosis. Post menopausal. Hysterectomy at 45 with ovaries removed. I took estrogen for 10 years, but I was er/pr-. You can see my diagnosis below. I have had 2 bone scans, 2 muga scans, 4 chest x-rays; 2 ct scans, and mamo's every 6 months. My onc. does what I want. She also tells me I worry too much. But if I don't stay on top, who will? My surgeon told me at the time of surgery that having a mastectomy was overkill as I had large breasts. Now, he tells me that he should have listened to me and removed the breast. I had a radiation burn that had to be removed, so now my breast is full of scar tissue and necrosis. It is still very painful at times. Oh well! So that's my story. Hope this is helpful to someone.
Linda
__________________
Diagnosed 12/23/04
Biopsy 12/28/04
Lumpectomy 1/04/05
IDC, ER-PR-, HER2Neu+++
7mm tumor, Stage 1, Grade 3
6 CAF's
38 Rads
Finished 10/05
"Worry looks around. Sorry looks back. Faith looks up."
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02-28-2007, 06:13 PM
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#16
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Senior Member
Join Date: Nov 2006
Location: West Virginia
Posts: 105
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When I was first diagnosed, I went into an "OMG! Who is gonna take care of my kids when I'm dead?!" depression. I would cry all the time and for no reason in particular, except the thoughts and fears consumed my every waking moment...and the ones whenI should've been sleeping. The best and worst thing I did was get on the internet, pull out all my nursing books, and start researching. Most, if not all of it, was frightening to say the least, but looking back now, 7 months since diagnosis, it was the only control I had over this disease at the time and it answered many of my questions that the oncologist didn't take the time to explain in depth during my first appointments. The best and only good part about being her2+ is that I found this site and all the knowledge and experience here.
Also, I've found that those around you want to support you, but cancer carries a stigma that death is imminent and that's just not true. I had great friends avoid me in the corridors at work, but at the same time, complete strangers have walked up to me and hugged me, wishing me all the luck in the world.
It's easier for me to look at breast cancer as a chronic disease, like diabetes. With the right care and treatment, healthy habits, and good support and medical care, we can live with this disease...and I mean live, as in thrive, not just getting by. Some days you may have to take one day at a time, but the diagnosis itself is no reason to quit life.
Nuff on that :P
Diagnosed at 36...
Found a tender lump between my breast and armpit while rolling over in bed on 7/29/06. AUG. 8, 2006
Core needle bx showing DCIS grade 2
AUG. 24 2006
1.5 cm IDC grade 3(9/9) HER/2+ (amplified, 2.5), ER <10 %, PR negative
w/ grade 3 (9/9) DCIS AND LOBULAR CA TO LUMPECTOMY MARGINS. Right breast clear
OCT. 4 2006
BILATERAL MASTECTOMY 16 of 16 NEG NODES Decided to have bilat mastectomy to reduce chance of recurrence in right breast since lobular ca was also found in left breast.
STARTED AC NOV. 4 2006- blood counts have been great, even at my worst
Finished AC January 8!!!!!! Had PET and bone scans late January due to liver function tests elevations, both were clear. Started weekly Herceptin and taxol January 29th and I went back to work February 4th. I feel great, except some mild rib, sternum, and wrist pain. I start tamoxifen after taxol completed and am considering oopherectomy later in the year. From where I stand now, I wouldn't have done anything differently. Life is good and I intend to make sure it stays that way.
I know this is long, but I'm windy, what can i say??:P
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02-28-2007, 07:26 PM
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#17
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Senior Member
Join Date: Oct 2005
Posts: 115
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Diagnosised by a fluke on Sept 14, 2005 at age 43 -
lumpectomy right - two tumors 1.2 each 0 with one focli. no vascular invasion, sentinal node negative. Reexcision 1/15/06 b/c of question on the originalpathology report - margins came up perfectly clear !
I year of herceptain finished 11/01/06
lupron monthly
arimidex.
No scans except bone density -
achy from arimidex but much better now off herceptain.
Oncoogist beleives greatest chance for a reoccurance is in same breats
MRI 5/06 - clear
digital mamo 12/06 - no change
keeping fingers crossed for MRI scheduled for 5/ 07.
blood work very three months and exam by two separate oncologists
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02-28-2007, 09:35 PM
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#18
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Here is mine...on herceptin since late August, 2006.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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02-28-2007, 09:36 PM
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#19
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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forgot to list my age...55
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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02-28-2007, 10:14 PM
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#20
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Janet Great Idea :-)
Hi,
Will soon complete my 1 yr. of herceptin (two more to go). My signature and
treatment profile is listed below. Prior to dx. I would have a yearly digtal
mamagram. Had my yrly Ditgtal Mamo in 9/04, seven months later I began to have a a pain and ache deep in my right armpit. It continued for over a week so I contacted the dr. who does my digtal mamo and she told me cancer does not hurt. I went in for another digital mamo and she found a 6mm tumor.
Since dx. 3/05 I now alternate between a digtal mamagram and MRI every 6 months. After lumpectomy I was concerned that there could be additional tumors that could have been missed. I decided to have an MRI 3wks. after lumpectomy to confirm status of both breasts. I then had CT/PET scans to insure that there was no cancer anywhere else. Dr. are following and tracking a small 5mm nodule on my right lung which they believe has nothing to do with bc dx. I had broncular pneumonia twice and it could be scarring from the broncular pneumonia (I sure hope so). It has been stable. The dr. did not recommend additonal treatment in view of the tiny size of my invasive cancer which was 3mm - no angiolmphatic invasion. The DCIS was predominantly cribriform type with necrosis, well differentiated. The more I researched and learned about her2 cancer the more concerned I became. My nodes came back negative but there was the possiblity that a T cell could travel through the blood system. I requested the Oncotype DX test. This was considered new to my onc and dr's., the Oncotype was not part of their bible. I still requested the test. I waited for over a month only to find out the Dr. did not send the sample out as requested. I was very annoyed that the dr. did not do as I had requested, I changed oncs. When I did get the test results back and the recurrance score was high risk I flew out to Calif. to see Dr. Slamon. He advised chemo/herceptin. He felt my dr's in NY had "missed the boat" unfortunately I was on that boat!
Through all of this from the first pain and ache in my armpit to the voice
in my head telling me to continue to search (thank god I found this forum)
I know that the presence of God has been protecting me and watches over me.
God Bless All Of Us.
Age 54
Annual scans NED
__________________
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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