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Old 12-05-2009, 08:43 PM   #1
Jean
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How many ER+ PR- are there?

Lani posted recently about ER+ verses ER- relapse time.
Becky posed that ER+ PR- is a rare group.
I am just curious how many of us are ER+ PR- if you don't mind....

ROLL CALL...(LOL)

Thanks,
Jean
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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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Old 12-05-2009, 09:31 PM   #2
BonnieR
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Re: How many ER+ PR- are there?

I am in this select group.
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 12-05-2009, 09:45 PM   #3
PinkGirl
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Re: How many ER+ PR- are there?

I am too ... and I like being weird
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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

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Old 12-05-2009, 09:47 PM   #4
freyja
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Re: How many ER+ PR- are there?

Here! Er+ pr- her2+++
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"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.

"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)

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Old 12-05-2009, 10:22 PM   #5
Becky
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Re: How many ER+ PR- are there?

I am weird too
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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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Old 12-06-2009, 12:38 AM   #6
bejuce
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Re: How many ER+ PR- are there?

Same here...
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ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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Old 12-06-2009, 12:42 AM   #7
Chelee
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Re: How many ER+ PR- are there?

Actually...I'm not sure if I count official...but my recent biopsy report from femur said I'm Er + and Pr -.

Orignal dx I was weakly Er & Pr. So you choose which one I am. lol

I think this qualifies me for the "weird" group.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 12-06-2009, 12:33 PM   #8
DianeH
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Re: How many ER+ PR- are there?

I am also ER+ and PR-....
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Old 12-06-2009, 04:03 PM   #9
Patb
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Re: How many ER+ PR- are there?

I am ER+ 90 percent, PR-
Really wierd
patb
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patb

Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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Old 12-06-2009, 04:46 PM   #10
PinkGirl
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Wink Re: How many ER+ PR- are there?


You're officially weird Chelee! It's actually easier to be weird than
it is to be normal .... you do something weird and everyone just
says ... "oh, she's always weird" .... makes life easier for me.
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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

Last edited by PinkGirl; 12-06-2009 at 05:37 PM..
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Old 12-06-2009, 05:27 PM   #11
Nancy L
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Re: How many ER+ PR- are there?

Chelee's response is important to remember and a reminder that everytime we are rediagnosed, it is very important to get the tumor reevaluated. Receptor status and Her2 status can change during your journey. I just went through serious surgery to get a surgical biopsy completed in a very difficult spot in my neck because Dr. Slamon said it wasn't enough to know it was breast cancer----he needed to know all the characteristics of my recurrence in the neck to know exactly how to treat me. It wasn't until the past few years that they discovered tumors can change characteristics.
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Old 12-06-2009, 10:41 PM   #12
Jackie07
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Re: How many ER+ PR- are there?

ER+ (weakly) PR- both times*. Have had almost 5 years of Tamoxifen. Will discuss options with Onco soon.

Correction: Oncology nurse just called me back - turned out my recurrence is ER -. How about that, he hid the news from me just so he could get me to take 5 years worth of Tamoxifen without getting probed by me... Yet I've continued my questioning regardless...
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 12-18-2009 at 03:26 PM..
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Old 12-07-2009, 10:22 AM   #13
SuThorn
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Re: How many ER+ PR- are there?

I am also in the weird group. ER+/PR-...

Thanks, Suzanne
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Dx 8-24-2007
Stage IV with mets to liver
ER +/PR- HER2 +++
10 months TCH completed 5-08
Ooph 1-08
Bilateral Mastectomy 07-08
Currently on Herceptin and Aromasin
NED since 1-08
UW Vaccine Trial completed 5-09
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Old 12-14-2009, 10:53 AM   #14
Barbara2
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Re: How many ER+ PR- are there?

Me, too...ER+, Pr-.
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Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.
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Old 12-14-2009, 06:56 PM   #15
krisvell
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Re: How many ER+ PR- are there?

You can add me to the list.
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06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 12-15-2009, 07:54 AM   #16
Hopeful
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Re: How many ER+ PR- are there?

Jean, et al - an interesting abstract from SABCS for you: http://her2support.org/vbulletin/sho...eferrerid=1173

Hopeful
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Old 12-17-2009, 07:57 PM   #17
Jean
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Re: How many ER+ PR- are there?

Thank you Hopeful, as always you are a great researcher. Knowing that the er+ pr- was a subtype
that is unique...now after reading the post there is another level to this...very intersting. Do you know of any other articles or posting?

Yes we are certainly a bunch of weirdo's!!! lol

thanks all,
Jean
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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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Old 12-17-2009, 08:07 PM   #18
DarleneM
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Re: How many ER+ PR- are there?

I'm in...although only weakly ER+
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2-17-09 biopsy
2-20-09 BC diagnosis @ age 28- 1.1cm by ultrasound, grade II, Her2+++, ER+5%, PR-
3-18-09 lumpectomy, sentinel node biopsy
Actual tumor 4-5 cm, positive margins. Nodes negative.
4-7-09 Re-excision, more positive margins
4-21-09 Right Mastectomy
5-18-09 TCH every 3 weeks
7-24-09 Chemo finished, continue Herceptin
12-8-09 PET Scan - NED!!
Jan.2010 8 months Herceptin done
No rads
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Old 12-18-2009, 09:16 AM   #19
Jackie07
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Re: How many ER+ PR- are there?

This study was presented in the ASCO meeting in 2008. Don't know if (most likely) it's been posted. Thought it might be relavant in the discussion here. It shows the Er, Pr, and/or Her2 status can change in relapsed breast cancer.

***************************

J Clin Oncol 26: 2008 (May 20 suppl; abstr 1000)


Author(s):
R. MacFarlane, C. Speers, H. Masoudi, S. Chia

Abstract:

Background: Relapsed/metastatic breast cancers are presumed to have the same predictive factors as the initial primary tumour. As such, the majority of patients do not have additional biopsies performed at the time of relapse. Recent small studies have suggested that a significant proportion of relapsed lesions may have a change in the hormone receptor and/or HER2 receptor status from the original tumour. We sought to compare the hormonal and HER2 receptor status of relapsed/metastatic breast cancer tumours with those of the original tumour from a large population-based database and tissue microarray (TMA) cohort. Methods: Using the BCCA Breast Cancer Outcomes Unit Database from 1986-1992, patients with biopsy proven relapses were identified. These identified patients were linked to a current large TMA series (n=4,444) of primary breast cancers. Charts were reviewed, and available tissue blocks of the relapsed/metastatic cancer were requested and collected. An additional TMA was created of the relapsed/metastatic tumours. IHC was performed for ER (LabVision SP 1 antibody), PR (Ventana 1E2 antibody) and HER2 (LabVision SP 3 antibody) on both the primary and relapsed tumours. The pathologist was blinded to knowledge of the primary tumour receptor status. Results: 281 cases were linked between the BCOU database and the TMA series. Of the 281 cases, 184 tissue blocks were received, and 160 had adequate tumour for analyses. Of the 160 blocks, 115 (72%) had no changes in either the ER/ PR or HER2 status. Of the 45 (28%) tumours that did have changes in the receptor status, 11 (7%) were local recurrence, 34 (21%) were regional or distant relapses. Among the 34 regional/distant relapses 11 went from ER/PR(+) to ER/PR(-), 14 went from ER/PR(-) to ER/PR(+), 3 went from HER2(-) to HER2(+), and 6 went from HER2(+) to HER2(-). Conclusions: This is one of the largest known studies assessing for changes in molecular phenotype between the primary and relapsed breast cancer. A significant proportion (21%) of relapsed tumours had changes in either ER/PR or HER2 receptor status. This study suggests that biopsies of relapsed/metastatic breast cancers should be performed routinely.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 12-18-2009 at 09:39 AM..
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Old 12-18-2009, 09:30 AM   #20
Jackie07
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Re: How many ER+ PR- are there?

And here's the advice I got from my 2nd Sister-in-law's bc oncologist (in Taiwan):

Since your breast cancer is ER (+), although the percentage of ER is 5-10%. Hormonal therapy with tamoxifen or AI (arimidex) is the treatment of choice.

The disadvantage of tamoxifen: Uterine myoma, uterine carcinoma...etc. but less osteroporosis.
The disadvantage of arimidex (AI analogue): severe osteroporosis..

Conventionally, chemotherapy will destroy the ovarian functions, oophorectomy, therefore, is not necessroy.
But if you still have menstration indicating the normal ovary function, oophorectomy and hysterectomy (to avoid uterine tumors) followed by
tamoxifen treatment are treatments of choice.

According to your questions below, my answer is:

If you have still menstration now, surgical removal of ovary and uterus is advised, provided chemotherapy did not destroy ovary functions.
Both tamoxifen for 5 years and tamoxifen 2 years followed by arimidex 3 years are fine for your condition.

*****************************************
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 12-18-2009 at 02:52 PM..
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