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11-23-2012, 12:57 PM
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#1
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Junior Member
Join Date: Nov 2012
Posts: 2
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Lobular Invasive HER2NEU positive
I have completed 35 rounds of radiation after being diagnosed on Aug. 3, 2012 with ILC, ductal in situ and lobular in situ.
I just found out yesterday that ILC that is Triple Positive is very rare. Which is depressing.
After a battery of more sophisticated tests, my team determined that chemo and herceptin risks outweighed the benefits based on the size of my tumor--less than 1 cm--and the FISH, oncotype and mammaprint.
Any other Triple Positive ILC ladies out there? I've found three so far in the US and Australia.
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11-24-2012, 09:27 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
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Re: Lobular Invasive HER2NEU positive
Hi;
I'm triple positive but not ILC. I have always considered it to be a good thing as there are many treatment options out there for us. However, I would not be comfortable at any size tumor not receiving chemo or herceptin.
All the very best,
Cathy
__________________
Cathy
Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18
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11-24-2012, 09:48 AM
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#3
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Lobular Invasive HER2NEU positive
I'm triple pos but with IDC but would agree with Cathys comments re the herceptin at least!
__________________
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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11-24-2012, 11:21 AM
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#4
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Lobular Invasive HER2NEU positive
I am triple positive but not ILC. I wonder (like Cathy) why this would necessary be a bad thing with many avenues of treatment. I do not understand the decision to avoid chemo/Herceptin with HER2 at this point in time. I would get more opinions.
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11-24-2012, 01:32 PM
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#5
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Lobular Invasive HER2NEU positive
Welcome to the site. Have no advise except, Please know that you are in my prayers. Gods blessings to you and your family.
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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11-24-2012, 04:52 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
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Re: Lobular Invasive HER2NEU positive
I guess I should be more specific. I believe that her2+ bc likes to travel. When I first saw my oncologist he thought that I didn't need chemo. My tumor was 3 cm and I was very uncomfortable with this but was in the middle of trying to express this when he found the second tumor in my supraclavicular node upon physical examination...so all changed then in any case. However, I was node negative and asked to be tested for her2 as it was not standard at that time...positive. My point is that my cancer spread in an unusual way and I credit being her2+ to that. I would seek the most aggressive treatment for your cancer as this is your best opportunity to get a cure. Chemo to me is actually easier than radiation and herception is a breeze....lol. Of course I am kidding but you get the picture. You will survive and hopefully for the very, very long term.
My best regards,
Cathy
__________________
Cathy
Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18
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11-26-2012, 06:34 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: Lobular Invasive HER2NEU positive
I am (was!!!)
__________________
 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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11-26-2012, 06:53 PM
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#8
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Senior Member
Join Date: Jan 2012
Posts: 362
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Re: Lobular Invasive HER2NEU positive
Hi Kim,
I know someone here in Maryland who was diagnosed with Stage 2b ILC. That was 4 years ago. She's doing just fine. She actually had ILC as well as IDC in her right breast. She had a single mastectomy, did chemo, herceptin but no radiation. She is still on Tamoxifen.
If you want I can pass along her name and number. She was a volunteer at Y-Me.org which was a 24 hour call center for women going through treatment. I was paired up with her and she was a great support for me.I know she would be delighted to help you if you needed support and could answer your questions. let me know.
__________________
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.
www.mychemobag.org
www.facebook.com/mychemobag
8 YEARS NED
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