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Old 06-12-2018, 10:25 AM   #1
Senior Member
Donna's Avatar
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
It's Back - I'm Back

Hello Amazing Group,

I made it 11 years and 11 months NED. I found a lump in the same breast from my previous cancer mid April. it was easy to find having lost so much tissue from my lumpecotmy and I knew what to do and moved through the steps to surgery on the 30th. Having had radiation previously my only option was for a mastectomy. So far, so normal for a recurrence, but here's the kicker:
- it switched types, no longer Her2 positive -

I had been on Femara for 10 years, stopped taking it and had this happen 1 year later. My oncologist says it would be likely to assume the Femara was no longer working as this new type I have is a very slow grower.

I am on Faslodex now since the AI apparently gave out, but it is hard to find info on my use of it since until recently it was only given for metastatic recurrence and mine was Stage 1, not metasticising.

Is anyone else here in roughly similar circumstances or taking Faslodex or know where to direct me to begin looking for info on something other than metastatic use?

Thanks - and I wish each and every one of you great days!

Donna in the Sierra Foothills of California

Diagnosed 6/7/06 invasive ductal carcinoma/ductal carcinoma in situ
Lumpectomy 6/21/06
Pathology: Er 99% Pr 10% Her2/neu 3+
DNA Index 1.0
S-Phase 3/High
Primary Tumor 2.4 cm Sentinel Node Tumor 2.1cm
A/C/T+ Herceptin + rads + Arimidex
stopped Herceptin after 7 mos. due to low MUGA
Surgery for thickened uterine tissue May 2008 - conclusion: side effect of Arimidex
Switched from Arimidex to Femara - joint/tendon problems significantly better!
2 year mark Pet scan and Echo shows all clear!
5 year mammogram with ultrasound shows no sign of cancer - yay!
11 years, 11 months new breast cancer - found lump
Mastectomy 4/30/2018
Pathology: Er99%, PR 28%, Her2 negative! (new type)
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Old 06-12-2018, 01:48 PM   #2
tricia keegan
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tricia keegan's Avatar
Join Date: Nov 2005
Location: Ireland
Posts: 3,390
Re: It's Back - I'm Back

Donna I came here to post some good news I received today and was so sorry to read your post. It must be so frustrating and disappointing to be dealing with this again after all these years, I really do feel for you. I can't help with the Faslodex question but it seems to get a great response for most with mets so hoping that will be the case for you and you never have to deal with this again.
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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Old 06-13-2018, 07:33 AM   #3
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Join Date: Sep 2005
Location: Ontario, Canada
Posts: 736
Re: It's Back - I'm Back


So sorry to hear of your recurrance but glad it is still stage 1. I also had my pathology change on new mets to her2-. Fortunately I can't offer you any commentary on treatment as my recurrence is more advanced lol, but I wish you all the best in your treatment.


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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Old 06-20-2018, 05:16 AM   #4
Joan M
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Join Date: Oct 2007
Posts: 1,844
Re: It's Back - I'm Back


I'm sorry to hear about this after almost 12 years. We never know with this disease. It can be persistent. But I know that you will be persistent as well. Best of luck with your treatment.

Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity. No cancer, only fungus. Still continuing on only Herceptin. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Living with MBC for 11 years. Praying for NED forever!!
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