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Old 08-23-2009, 02:28 PM   #1
bejuce
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Tamoxifen for 5% ER?

My pathology showed that I'm 5 % ER+. Is this enough for considering Tamoxifen to be added to my treatment plan? What is the threshold?

Thanks!!!

Marcia
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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 08-23-2009, 03:41 PM   #2
Jackie07
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Re: Tamoxifen for 5% ER?

Marcia,

I think mine was also just 5% ER. I know, it sounds so tiny, but that's how ER+ is determined. Hope the information below helps:

The first molecular target for targeted cancer therapy was the cellular receptor for the female sex hormone estrogen, which many breast cancers require for growth. When estrogen binds to the estrogen receptor (ER) inside cells, the resulting hormone-receptor complex activates the expression of specific genes, including genes involved in cell growth and proliferation.

Research has shown that interfering with estrogen’s ability to stimulate the growth of breast cancer cells that have these receptors (ER-positive breast cancer cells) is an effective treatment approach.

Several drugs that interfere with estrogen binding to the ER have been approved by the FDA for the treatment of ER-positive breast cancer. Drugs called selective estrogen receptor modulators (SERMs), including tamoxifen and toremifene (Fareston®), bind to the ER and prevent estrogen binding. Another drug, fulvestrant (Faslodex®), binds to the ER and promotes its destruction, thereby reducing ER levels inside cells.

Another class of targeted drugs that interfere with estrogen’s ability to promote the growth of ER-positive breast cancers is called aromatase inhibitors (AIs). The enzyme aromatase is necessary to produce estrogen in the body. Blocking the activity of aromatase lowers estrogen levels and inhibits the growth of cancers that need estrogen to grow. AIs are used mostly in women who have reached menopause because the ovaries of premenopausal women can produce enough aromatase to override the inhibition. Three AIs have been approved by the FDA for the treatment of ER-positive breast cancer: Anastrozole (Arimidex®), exemestane (Aromasin®), and letrozole (Femara®).


www.cancer.gov/cancertopics/factsheet/Therapy/targeted

National Cancer Institute.
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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
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Old 08-23-2009, 04:40 PM   #3
Jackie07
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Re: Tamoxifen for 5% ER?

From Cancer.org:

Hormone therapy is another form of systemic therapy. Like chemotherapy, hormone therapy can be used either as an adjuvant therapy to help reduce the risk of cancer recurrence after surgery or when the cancer has become metastatic.

Some breast cancers grow in response to the hormone estrogen. Estrogen is usually thought of as a "female" hormone, but men have it in their bodies as well, just at lower levels. About 9 out of 10 breast cancers in men have hormone receptors on the surface of their cells -- that is, their cancers are estrogen receptor (ER)-positive and/or progesterone receptor (PR)-positive. This makes them more likely to respond to hormone treatments. Hormone therapy does not help patients whose tumors are both ER- and PR-negative.

Several approaches to blocking the effects of estrogen or lowering estrogen levels are used to treat breast cancer in women. While many of these may work in men as well, doctors have the most experience with using anti-estrogen drugs such as tamoxifen in men.
In the metastatic setting, hormonal treatments are often used in a sequence. For example, tamoxifen may be tried first. If the cancer does not respond or if it grows back after an initial response, other hormonal treatments may be tried.

Tamoxifen: Tamoxifen works by blocking the estrogen receptors on cancer cells, which prevents estrogen from spurring their growth. It is taken daily in pill form, usually for 5 years, to reduce the chances of the cancer coming back after surgery. Tamoxifen can also be used to treat advanced breast cancer.

The most common side effects include fatigue, hot flashes, and sexual problems. A rare but more serious side effect is blood clots, which usually form in deep veins of the leg. In some cases, this increased risk of clotting may lead to a heart attack, stroke, or blood clots spreading to the lungs (pulmonary embolism). Call your doctor or nurse right away if you develop pain, redness, or swelling in your lower leg (calf), shortness of breath, chest pain, sudden severe headache, confusion, or trouble speaking or moving.

Aromatase inhibitors: This group of drugs includes anastrozole (Arimidex), letrozole (Femara), and exemestane (Aromasin). They block the production of small amounts of estrogen by the adrenal glands. They are taken daily as pills. They have been found to be very effective in treating breast cancer in women, but they have not been well studied in men. Still, some doctors use them as the first line of hormone therapy instead of tamoxifen. Clinical trials are also under way to look at using aromatase inhibitors along with LHRH analogs (see below).

The main side effects of these drugs are thinning of the bones and joint stiffness.
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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
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Old 08-23-2009, 05:41 PM   #4
suzan w
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Re: Tamoxifen for 5% ER?

good question! I was told to be glad (ha!!) that my cancer was ER+ because at least I had a weapon to use...for me, Arimidex, having gone through menopause. xo Suzan
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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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Old 08-23-2009, 06:48 PM   #5
Debbie L.
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Re: Tamoxifen for 5% ER?

Marcia, did you have your ER re-checked when you transferred care to Stanford? That's a borderline level and it could actually be negative, so that you could avoid enduring the side effects of a drug that has nothing to offer you.

Forgive me if I've asked this question of you before. I did look through your posts and don't see double-checking mentioned.

Unfortunately and upsettingly, ERPR levels are often inaccurate when done at local labs and if the results are borderline, that can be a crucial error. It doesn't matter if, for example, the error is between 60% positive and 80% positive. But when we get close to zero, it matters. I had mine redone at Baylor and both ER and PR were negative. Local lab had said 5% ER+ and for that I got two years of Arimidex. It's easy to get a second opinion pathology from Baylor, using your slides and tumor blocks from the initial surgery or biopsy. But if you're now receiving care at Stanford, they should be able to do it there. Or maybe they already have?

If it's reliable report of 5% ER+, then it's muddier. Current thinking is that it's possible that any degree of ER positivity could benefit from endocrine treatment. However, at least with Tamoxifen (and it's probably the same for AI's), response to endocrine therapy improves as ER levels rise. Some oncs will tell those will low ER+ pathology that it's worth trying the endocrine therapy but that if side effects are really troublesome, they would not push a woman with a low ER+ cancer to continue the endocrine therapy (because it probably offers her a small benefit).

What is Stanford telling you about how much benefit you can expect from Tamoxifen?

Debbie Laxague
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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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Old 08-24-2009, 05:58 AM   #6
mts
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Re: Tamoxifen for 5% ER?

Marcia,

I posed this same question a few years ago... I too am 5% ER+ and PR neg.
I spoke to a pathologist from MD ANderson Texas-- and she told me that samples sent from the operating table to the lab to be frozen can lose some viability and therefore a 5% result may actually be higher... I had my ER checked 3 times... one in Florida, a second opinion that was sent to MD Anderson and a 3rd sample that was sent to UPenn... all came back different (but all ranges between 5% and 15%.

I was on tamoxifen for approx 5 months at first, and I really could not tolerate it. People told me that side-effects -in essence - was proof that the tamoxifen "was working".
My onc has gone back and forth on this with me since 2005... He has told me time and again that a little ER+ is still positive and that although the benefits may not be as great as someone who has a higher ER, its still a benefit...
I have not been on Tamoxifen for nearly 3 years and feel great. I know I must sound like a wimp- especially since there are so many women who would prefer to have Tamoxifen side effects vs. chemo... but I truly felt awful taking the tamoxifen (vertigo like side effects). Although I am reminded of my bc every time I look in the mirror, I don't have the Tamoxifen thing sitting on my shoulder. I am comfortable living with my ounce of doubt. I am now 5 years post diagnosis... been through it all and feel at peace with my decision.

In the end, its what ever you can live with. Both physically and mentally.

Maria
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--------------
Dx'd 8/04 at 41
Stage 1 for some onc's; Stage II for others (if you add up the sizes of all tumors).
Infiltrating DCIS
HER2+, ER+10% & PR-
.9cm tumor not visible on mammo, but palpable; visible on ultrasound
Lumpectomy/ clear margins, no nodes
Had Breast MRI after lumpectomy that revealed two more tumors in same quadrant(.4cm and 1.6cm) that were not visible on either mammo or ultrasound.
Re-excision
DD AC+T; Herceptin one year
Rads
NED/Taking Tamoxifen reluctantly
--------------
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Old 08-27-2009, 02:43 PM   #7
flynny
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Re: Tamoxifen for 5% ER?

I too am ER+ 5%. I originally had my path report done in a "Local Lab" in Manchester, NH but then my mother's on who then became my onc at Dana Farber had 3 doctors test my slides and it came back 5%. She was very particular about my case because my mother was dying of mets when I was dx.

We are just a VERY small group of women that this happens to. Aren't we special! I believe that we will benefit regardless if it were only 2%.
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-Sarah-

Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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