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Topic: HER2 Positive-anyone 10 years out?

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Sep 12, 2009 02:32PM - edited Sep 12, 2009 02:34PM by tuckertwo

tuckertwo wrote:

Hi ladies,

I was wondering if there are any women out there who are 10 years or longer with her2 positive breast cancer?  When I was diagnosed in 2008, my prognosis said '80% chance of no recurrence in 10 years'.  Wondered what they based this on, as I have yet to talk to anyone past 6-8 years and they seem to have had recurrences because they weren't on Herceptin.

 I would like SOME hope that this thing can be beat.....and would love to hear from anyone who has been dealing with this thing for 10 years and are still alive and kicking.

tuckertwo

I have not put my dx in profile yet so will type it in here:

Dx: Aug 2008 50% IDC, 50% DCIS right breast only, 2.1 cm, grade 3, HER2 positive+++, ER weakly positive, PR negative, double mastectomy Sept. 2008, began TCH November 08, finish Herceptin Oct. 2009. One year NED!  

"I tell you the truth, if you have faith as small as a mustard seed...nothing will be impossible for you'. Matthew 17:20 Dx 8/27/2008, IDC, 2cm, Stage II, Grade 3, 0/8 nodes, ER-/PR-, HER2+
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Oct 17, 2019 10:34AM Denny123 wrote:

Brooklyn...good luck. I had a recurrence in my chest nodes (anterior mediastinal and hilar) 9 years after my dx of Stage 4 MBC de novo. I kind of expected it.

Where is your recurrence and what kind of chemo are you on? Kadcyla worked pretty well for me.


Dx 12/14/2002, IDC, Both breasts, 5cm, Stage IV, metastasized to liver/other, Grade 3, 4/40 nodes, mets, ER+/PR+, HER2+ Surgery 2/20/2003 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Chemotherapy 3/31/2003 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Taxotere (docetaxel), Xeloda (capecitabine) Radiation Therapy 10/10/2003 Breast, Lymph nodes Targeted Therapy 1/30/2004 Herceptin (trastuzumab) Hormonal Therapy 7/5/2011 Faslodex (fulvestrant) Targeted Therapy Targeted Therapy Herceptin (trastuzumab)
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Oct 17, 2019 12:37PM Brooklyn1234 wrote:

Hi Pipandor,

A decade ago when I was first diagnosed I got six rounds of taxol, carbo and herceptin, spaced three weeks apart, and I continued on the herceptin for a year. (They tried me on taxotere but I had a severe allergic reaction to it, so we switched to taxol). Now, I'm getting weekly low-dose taxol with herceptin every three weeks for a total of 12 taxol treatments. Then I will continue on herceptin for a year. I'm waiting on results of a suspicious lymph node biopsy. If it's positive, I will go on Perjeta as well. I should mention that the first time around I avoided radiation by getting a mastectomy. So a major protection was not in place.

Dx 11/1/2009, 1cm, Stage I, 0/9 nodes, ER-/PR+, HER2+ Dx 9/2019, IDC, Left, 1cm, ER-, HER2+ Chemotherapy Taxol (paclitaxel)
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Oct 17, 2019 01:09PM - edited Oct 17, 2019 05:14PM by Pipandor

Thank you Brooklyn. My first treatment was 12 weekly taxol with herceptin followed by herceptin for a year. I was told it was easier than the 3 week regimen, and it wasn't as bad as I expected. Hope you'll find the same, and that those nasty cells will get solidly knocked back into oblivion.

Dx 1/2016, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 2/5/2016 Lumpectomy: Left Chemotherapy 3/10/2016 Taxol (paclitaxel) Targeted Therapy 3/11/2016 Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast
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Oct 17, 2019 02:52PM Margun wrote:

Brooklyn-I hope you get better soon. You said you had no radiation and perhaps that was the reason for recurrence. But even today if you have no lymph node involvement and you get mastectomy, docs do not recommend radiation. Given that this was my case my surgeon and radiotherapist both did not recommend radiation. However reading your post I got worried that it is not wise skip radiation.

Anyone else skipped radiationdue to negative nodes and mastery

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Oct 17, 2019 03:46PM - edited Oct 18, 2019 05:34PM by DogMomRunner

My RO said that from his experience, radiation should be done even if someone gets a mastectomy. Of course he is an ROso that's expected for him to push the benefits of radiation. I have a friend who has had bilateral mastectomies and is getting radiation.

I think sometimes it's just the luck of the draw. Unfortunately. I will say that I would not be surprised to get a recurrence. Even after chemo, Herceptin and radiation. :

You ain't run far enough to say My legs have failed You ain't gone far enough You ain't worked hard enough You ain't run far enough to say It ain't gonna get any better. Nathaniel Rateliff Dx 4/24/2019, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/8 nodes, ER-/PR-, HER2+ (FISH) Surgery 5/17/2019 Lumpectomy: Left; Lymph node removal: Left, Sentinel Targeted Therapy 6/6/2019 Herceptin (trastuzumab) Chemotherapy 6/6/2019 Taxol (paclitaxel) Radiation Therapy 9/22/2019 Whole-breast: Breast
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Oct 18, 2019 04:33PM Brooklyn1234 wrote:

Thanks Margun -- it's possible. My oncologist estimates radiation would have improved my odds 20 percent, so I guess I'll never know....but this time around, with the recurrence, there's no question I'm getting radiation on my mastectomy site. I will probably ask them to remove my implant as well.

I hope I'm not scaring anyone too much with my story. My oncologist seems to think the most important reason I got a recurrence was that the surgeon left some tissue behind. Interestingly, I've always remembered feeling uncomfortable knowing that the surgeon was operating on me early in the morning after flying back from the San Antonio breast cancer conference the night before. She would have been jet lagged for sure. The surgery didn't seem to go well. She couldn't find my sentinel node, and went digging around behind my chest wall looking for it, then removed 9 healthy nodes. As a result, I got lymphedema. And now I'm hearing she left tissue behind. Sometimes a person just gets unlucky!

Dx 11/1/2009, 1cm, Stage I, 0/9 nodes, ER-/PR+, HER2+ Dx 9/2019, IDC, Left, 1cm, ER-, HER2+ Chemotherapy Taxol (paclitaxel)
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Oct 19, 2019 04:55PM rlmessy wrote:

Thought I would pop in here too while I am making my way around due to my own BC dx.

My mom was 67 when she was diagnosed with right IDC, ER/PR+ HER2+. I cant remember lymph nodes other than she had alot of them removed. .She did right mx, chemo, radiation, and arimedex I think for 5 years.

That was 13 years ago and she is still here with no reoccurrence. She passed the 10 year mark and is still driving me crazy!!

She has lymphedema and we have had many bouts of lymphagitis but we have a way of managing it.

I am now fighting my own battle with the triple positive but I have a great motivation sitting right by my side. If she can do it so can I.

Oh, side note...I was on this forum way back then too and it was just as big of a help then as it is today.

Power on ladies!!!

My DX appears below but I am also a caregiver to my awesome Mom, a 13 year (2006) BC Survivor, IIIa IDC, ER/PR+, HER2+, R MX, Lymphedema R Arm Dx 10/10/2019, LCIS/DCIS/IDC: Papillary, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2+ (FISH) Surgery 12/18/2019 Mastectomy: Left, Right
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Oct 20, 2019 10:29AM mistyeyes wrote:

Sending you good thoughts rlmessy! Glad your mom is right by your side driving you crazy!!! That's what mom's do.


IDC right- Stage IIA, Grade 3,ER-,PR+,HER2+ Dx 11/15/2016, Right, PR+, HER2+
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Nov 24, 2019 04:47PM lizzyanne wrote:

Hey Brooklyn - you got this....Sending lots of hugs.

Dx 3/30/2010, IDC, 3cm, Stage IIIB, Grade 3, 4/15 nodes, ER+/PR-, HER2+ Surgery 5/10/2010 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 6/1/2010 AC + T (Taxol) Radiation Therapy 11/24/2010 Breast, Lymph nodes Hormonal Therapy 9/8/2012 Targeted Therapy Herceptin (trastuzumab)
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Nov 24, 2019 04:51PM lizzyanne wrote:

Rimessy - you are blessed to still have your mom around to give you hope and courage and of course agita. Hugs

Dx 3/30/2010, IDC, 3cm, Stage IIIB, Grade 3, 4/15 nodes, ER+/PR-, HER2+ Surgery 5/10/2010 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 6/1/2010 AC + T (Taxol) Radiation Therapy 11/24/2010 Breast, Lymph nodes Hormonal Therapy 9/8/2012 Targeted Therapy Herceptin (trastuzumab)
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Nov 30, 2019 01:37AM Alicethecat2 wrote:

Hello HER2+ team

It is possible to get treated for Her2+, recover and have no recurrence over the years.

I discovered a grade 3 HER2+ lump on Halloween 2011 just over 8 years ago. No recurrence. No spread. I had the whole caboodle of treatment upfront, early (see signature) and voila - cracking on. Not easy but doable.

Hope this offers hope.

Alice


Dx 1/4/2012, IDC, Right, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR+, HER2+ (FISH) Surgery 2/7/2012 Mastectomy: Right Targeted Therapy Herceptin (trastuzumab) Radiation Therapy 3DCRT: Chest wall Chemotherapy Taxotere (docetaxel) Chemotherapy CEF
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Nov 30, 2019 12:01PM Denny123 wrote:

I went for 6 years while only on Heceptin before I had a recurrence in my chest nodes. But I am NED again.

Dx 12/14/2002, IDC, Both breasts, 5cm, Stage IV, metastasized to liver/other, Grade 3, 4/40 nodes, mets, ER+/PR+, HER2+ Surgery 2/20/2003 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Chemotherapy 3/31/2003 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Taxotere (docetaxel), Xeloda (capecitabine) Radiation Therapy 10/10/2003 Breast, Lymph nodes Targeted Therapy 1/30/2004 Herceptin (trastuzumab) Hormonal Therapy 7/5/2011 Faslodex (fulvestrant) Targeted Therapy Targeted Therapy Herceptin (trastuzumab)
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Nov 30, 2019 12:21PM Cowgirl13 wrote:

Alicethecat2 and Denny129, this is so, so reassuring. Thank you for posting. I was 10 years out in June.

Be the kind of woman that when your feet hit the floor each morning the Devil says: 'Oh crap! She's up! Dx 5/28/2009, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 6/15/2009 Chemotherapy 8/2/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)
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Dec 2, 2019 09:58AM mbutterfly wrote:

Hi,

I'm going on 12 years out in April 2020. I was triple positive, stage 1, started H in fall of '08 following right mast. I did a year of Herceptin but developed the heart side effect in March and my treatment was paused a couple months to let my heart strengthen. My ejection fraction dropped to around 42 but great news - I got almost all my original function back in the next 7 years. I finished in the fall of 2009. I did the full five years of Tamoxifen and because I was only 42 and not fully menopausal (even though chemo - T/C - stopped my periods) we waited about two years for my estrogen to drop. I went on Arimidex and have been on it since. Because I moved to a small town I lost my amazing oncologist and am now trying to figure out what the latest guidelines are for staying on it. My oncotype was sky high so my case was a little complicated. Hope that helps!

Dx 4/4/2008, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2+ (FISH) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Dec 2, 2019 12:17PM Alicethecat2 wrote:

Denny, Cowgirl and mButterfly

Thank you so much for posting.

I do hope more ladies who are surving will join us and post from time to time.

I remember how scared I was when diagnosed and it was the positive success stories that gave me hope and kept me going.

Alice

Dx 1/4/2012, IDC, Right, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR+, HER2+ (FISH) Surgery 2/7/2012 Mastectomy: Right Targeted Therapy Herceptin (trastuzumab) Radiation Therapy 3DCRT: Chest wall Chemotherapy Taxotere (docetaxel) Chemotherapy CEF
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Dec 2, 2019 04:31PM mistyeyes wrote:

I love hearing positive stories. It gives me freedom from constant worry, it is awful to live always thinking that something bad is lurking around the corner.

IDC right- Stage IIA, Grade 3,ER-,PR+,HER2+ Dx 11/15/2016, Right, PR+, HER2+
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Dec 2, 2019 06:56PM Denny123 wrote:

Alice...I have been on this forum since 2002! I will be posting this Dec 16 since it will be the beginning of my 18th year since dx!

Dx 12/14/2002, IDC, Both breasts, 5cm, Stage IV, metastasized to liver/other, Grade 3, 4/40 nodes, mets, ER+/PR+, HER2+ Surgery 2/20/2003 Lymph node removal: Left, Right; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap Chemotherapy 3/31/2003 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Gemzar (gemcitabine), Taxotere (docetaxel), Xeloda (capecitabine) Radiation Therapy 10/10/2003 Breast, Lymph nodes Targeted Therapy 1/30/2004 Herceptin (trastuzumab) Hormonal Therapy 7/5/2011 Faslodex (fulvestrant) Targeted Therapy Targeted Therapy Herceptin (trastuzumab)
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Dec 4, 2019 11:35PM soccermom wrote:

hello sisters- initial DX was Oct 20, 2003. 16 years out! What doesn’t kill you makes you stronger. Her 2 positive, hormone negative, stage IIA, 2 nodes positive for micro-Mets out of 12. Mastectomy followed by chemo followed by a year of Herceptin at 3 week intervals. Got herceptin early “off-study” through connection with Dr Stephen Tucker of UCLA. No recurrence. Although I did have a Meningioma partially resected earlier this year, followed by radiation in Sept. At age 67,still working full time and going strong. Rock on!

to dance beneath the diamond sky with one hand waving free Dx 10/20/2003, IDC, <1cm, Stage IIA, Grade 2, 2/12 nodes, ER-/PR-, HER2+
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Dec 8, 2019 06:41AM - edited Dec 8, 2019 06:41AM by lkc

Hi Ladies!

Good to see you Soccer mom.

I'll just add my story, just shy of 15 years NED from a Nasty stage IIIC IDC, Her2 pos , BC, 12 out of 14 nodes pos, axillary and sentinel nodes completely engulfed in tumor AND extraencapsulated, Ducts, lobes infiltrated, Pagets of Nipple, AND no clear margins after last surgery.

Livin large every day in profound gratitude

Linda K dx'd May 05 Stage IIIC erpr-, her pos, 12 pos nodes
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20 hours ago LoveFlorida wrote:

lkc

that is so reassuring! Thank you so much for posting!

Surgery 6/24/2019 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement Dx 6/27/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER-/PR-, HER2+ (FISH) Targeted Therapy 9/3/2019 Herceptin (trastuzumab) Chemotherapy 9/3/2019 Taxol (paclitaxel)

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