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Topic: ER-, PR-, Her2+ Roll call

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Apr 3, 2011 01:17AM

Nevo84 wrote:

Hello everyone

My mom was dx in November 2010. She is in her Chemo courses and only 2 sessions left. She is so well now and is very hopefull.My little niece makes her so happy and she is planning for the ceremony of her first birthday. Since she was dx I've explored in this site in different cathegories but sisters with this signature are few. So I decide to start a new thread in which we can call all   ER,PR-, HER+ gals and specially who survived for years. I hope we can make a group like triple positives and etc.

Dx 11/3/2010, IDC, 6cm+, Stage IIIA, Grade 3, 8/35 nodes, ER-/PR-, HER2+
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May 2, 2011 08:46AM Lilah wrote:

Mikamom-- so sorry you are having to deal with this at such a young age.  And to be in AL with the tornados on top of it is just too much!  I agree about the cancer spa :)  Just know that the treatment is very doable and Herceptin is a godsend for us HER2+ gals; the worst part is the hair loss but hair DOES grow back (and you can get yourself some fun wigs).  Here's hoping your nodes are clear.

Dx 6/2/2009, IDC, Stage IIA, Grade 3, 1/17 nodes, ER-/PR-, HER2+
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May 2, 2011 10:09PM Nevo84 wrote:

Dear mikamomof3

My mom was dx 6 months ago. She finished her chemo courses last week and she's doing really fine. But at first it was a very BIG shock for all of us specially her.We all thought that she can't handle it but we are soooo wrong. After sometime you can handle it too. My mom said after her surgery that she feels better because her tumors were out of her body and probably in the hospital gurbage. She was so weak and me and my sister thought that we can't see my mom like before ever. But time passes for everyone and fortunately it brings patience with him. So be strong and be sure that everything will be not just fine but great. We are all with you.

P.S. Chemo courses are not as bad as you think they are doable it's what my mom said. If you need to do it think very positive about it's preventing effect on your body 

Dx 11/3/2010, IDC, 6cm+, Stage IIIA, Grade 3, 8/35 nodes, ER-/PR-, HER2+
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May 3, 2011 08:23AM - edited May 3, 2011 08:32AM by lastminuteD

Another missing in action survivor here!  First dx 12/05 @ 43 - ER+/PR+/HER2+++, widespread DCIS, had right mastectomy, good margins, immediate recon w/tissue expander, labs came back with a .2cm IDC so went back in for ancillary dissection which came back 0/5!  woo hoo!  started tamoxifen. 15 months later as I was finishing up the color on my tattoo in 3/07, I felt a lump.  YEP, 3.5cm IDC, but ER-/PR-/HER2+++.  Had re-excision surgery, Adriamycin, Cytoxan, Taxol and Herceptin and extensive radiation.  With new trial info and different approaches, my onco decided it couldn't hurt to treat the ER+/PR+/HER2+++ first cancer with Arimidex so I have been on that since 9/10 - joint issues and hot flashes but if there is a chance it will help, I am all for it.  It was much harder hearing "you have cancer" the second time for me but I thank God for my supportive family and friends and try to have a half glass full attitude even when my knees want me not to!!  I have had a couple of incidents of extra scans and bloodwork but so far, so good with the results still saying NED!  BreastCancer.org has been a tremendous help with information and the members as well.  Gods blessings on all of you.

THINK HAPPY!!! Dx 12/27/2005, IDC, Right, <1cm, Stage IA, Grade 3, 0/5 nodes, ER+/PR+, HER2+ (FISH) Dx 3/27/2007, IDC, Right, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2+ (FISH)
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May 3, 2011 11:23PM Nevo84 wrote:

bump

Dx 11/3/2010, IDC, 6cm+, Stage IIIA, Grade 3, 8/35 nodes, ER-/PR-, HER2+
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May 4, 2011 01:27AM ma111 wrote:

I hope your surgery went well and that your nodes will be -.

Your childern are young, that has to be hard and a concern for you. At least my daughter was 16 when I was first dx and able to do things for herself and didn't need supervision. Hopefully people will come and help with the kids. When people offer to help, do ask for help with the kids, don't be bashful.

Dx 8/4/2009, IBC, <1cm, Stage IV, 19/19 nodes, ER-/PR-, HER2+
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May 4, 2011 02:52PM mikamomof3 wrote:

Surgery went well, did lumpectomy, removed sentinel node plus 2 others and had a port placed for chemo.  I am SO sore.....very anxious to get the node report back!  My parents are here from NY and cooking and helping with kids!  Thank you all for sharing your information.

Dx 4/22/2011, IDC, 1cm, Stage II, Grade 3, 1/3 nodes, ER-/PR-, HER2+
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May 4, 2011 03:24PM marjie wrote:

My kids were older as well when I was dx. It was still hard to be ill and have others take care of me!!  My daughter even learned to give me shots if needed.  Mikamomof3 - good luck with the node report! You are lucky to get your port placed along with your lumpectomy.  Mine didn't get placed until after my chemo had all ready started and that was just a bit much to have on my plate at the time.  I found the port insertion to be more sore than the lumpectomy, but moving forward you will be thankful for it.
Treatment: Rt Lump/SNB Aug 2010, FECx3/Tx3, radsx25+8, Herceptin x18 Dx 7/13/2010, IDC, 4cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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May 4, 2011 03:34PM Bold wrote:

Hello sistahs!!

I am a 21/2 years out. I did get a little chubby!! still working on it. I think the steroids and herceptin made weight gain more probable. I still have a bit of fatigue. yuck. My hair is a bit thinner and slower growing. But I am alive and kicking.  The soreness is almost back to normal in hips and lower back. I still have a bit of night time nervousness. I meditate exercise and pray. Life is good.

started TCH x 6 Dec 29, 2008 Dx 11/6/2008, IDC, 3cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+
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May 4, 2011 03:41PM - edited May 4, 2011 03:41PM by GramE

H everyone:   Monday (5/2) was 3 years since I was dx, er/pr -, her +++.   I spent the day having cataract surgery this year.   6 cm, node negative, AC, Taxol + Herceptin, lumpectomy, Herceptin for rest of a year.  No rads.   A year or so ago I tried to get this topic going as a thread and got no response.   I am one of the older gals - 65, but my mom just turned 98 and is a 50 year survivor.  Back then no er/pr, her2, stage, grade, just "cancer" and radical bi lat was done.   

Gentle hugs for all.   Nancy 

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May 4, 2011 08:45PM ginah wrote:

Hi there~I too am in the HER+ group.  I've finished chemo and continue with the Herceptin every 3 weeks.  I have gained ~5 lbs.  it's so unfair on top of everything else!  I look forward to sharing and learning with everyone.

Dx 8/2010, IDC, <1cm, Stage IIA, 1/19 nodes, ER-/PR-, HER2+
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May 6, 2011 12:34PM Scrabblelady wrote:

HI,  I finished chemo ( A/C) in Feb and am on Herceptin every 3 weeks.  So far, no SE and my hair is slowly growing.  I was so glad to get my eyelashes back.  I missed them the most.   Is anyone else waiting for normal wbc?  Mine continues to jump around just below normal.  I gaind 12 lbs during chemo and so ar have lost 6 of those 12 lbs.  

Dx 5/18/2010, IDC, <1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2+
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May 6, 2011 12:58PM - edited May 6, 2011 12:58PM by mikamomof3

Hi all, i only had 1 of 3 nodes positive so my doc says I am T1, N1, Stage II - whatever all that means.  I do have one major concern from talking with him on the phone. He said he saw pre-cancerous changes around the tumor he took out, but he said he got clear margins.  I have an appointment next week (Friday the 13th) with the oncologist and then again with my surgeon on the 17th.  Doc said after chemo and radiation I would have the same risk as any other person.  I was slightly foggy then but he also said DCIS and multi-focal, but I can't remember in what context.  Those are on my list of questions now.

Any insight is greatly appreciated!

Dx 4/22/2011, IDC, 1cm, Stage II, Grade 3, 1/3 nodes, ER-/PR-, HER2+
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May 7, 2011 01:51AM ma111 wrote:

mikamomof3,

I am praying that your nodes are negative. Glad the surgery went well and that you already have the port. Also happy that your parents are helping, hopefully they also help while you do chemo.

Dx 8/4/2009, IBC, <1cm, Stage IV, 19/19 nodes, ER-/PR-, HER2+
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May 8, 2011 07:16AM - edited May 8, 2011 07:17AM by mikamomof3

This Post was deleted by mikamomof3.
Dx 4/22/2011, IDC, 1cm, Stage II, Grade 3, 1/3 nodes, ER-/PR-, HER2+
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May 9, 2011 10:09PM Nevo84 wrote:

bump

Dx 11/3/2010, IDC, 6cm+, Stage IIIA, Grade 3, 8/35 nodes, ER-/PR-, HER2+
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May 10, 2011 12:14PM mbhamel wrote:

I am 50 years old was always good about getting my mammograms etc. Had my last mammogram 10/2010 it came out normal. March 2011 I found a lump in my left breast. Dr sent me for a diagnostic mammogram and then a biopsy. BC ER/PR negative and HER2 positive. I am getting a bilateral mx with a prophlactic in the right breast on May 17, 2011.  I elected to do both because of the reconstruction complications and I had a lumpectomy back in 1995 on my right breast which was benign. Just don't want to take any chances of it reoccuring.I don't know if I will need chemo or not yet the doctor said it depends on what she finds in the left lymph nodes during surgery.

Mary Beth Dx 3/25/2011, IDC, 4cm, Stage IIA, Grade 3, 0/4 nodes, ER-/PR-, HER2+ Surgery 5/17/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/7/2011 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Taxol (paclitaxel) Targeted Therapy 9/8/2011 Herceptin (trastuzumab) Surgery 1/24/2012 Reconstruction (left); Reconstruction (right)
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May 10, 2011 09:10PM Lilah wrote:

Mary Beth -- I was told when they found HER2+ that chemo was definite regardless of nodes (because Herceptin is treatment for HER2 and it works best with chemo).  And this was before the nodes were tested (I had one positive node).  I am curious as to why your doctor says different.  Might be worth consulting with an oncologist (although it was a BS who told me I would need chemo/herceptin due to HER2+ diagnosis).

Dx 6/2/2009, IDC, Stage IIA, Grade 3, 1/17 nodes, ER-/PR-, HER2+
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May 12, 2011 09:49AM ditan3 wrote:

Hi there......I'm 6 years out but wasn't able to get Herceptin as I was stage 1 and in Canada this drug was only allowed for stage IV patients.  Go figure!?!?!  Anyhow, I'm still here and happy to be posting on this wonderful site. 

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May 12, 2011 02:25PM deebou wrote:

I'm still here. Dx in Feb 2009, my last treatment of herceptin will be 10/20/2011.

Dx 3/27/2009, DCIS, 2cm, Stage IIA, 2/6 nodes, HER2+
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May 13, 2011 10:58AM imatthew wrote:

mikamom - i'm curious as to why they recommended radiation?  My wife had clear margins, 1.6 CM tumor, and 1 of 4 nodes positive, the recommendation for her was no rads, just 6xTC and a year of Herceptin.

On behalf of my wife: Skin-saving Unilateral Mastectomy/immediate DIEP on 10/15/2010. TC 6x3 and Herceptin 52x3 started 12/9/10 Dx 7/26/2010, IDC, 1cm, Stage IIA, Grade 3, 1/4 nodes, ER-/PR-, HER2+
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May 14, 2011 06:42PM marejo wrote:

I am er/pr negative and her2+++ and will be a 6 year NED survivor in June, 2011

9 year NED Survivor Dx 6/24/2005, IDC, 4cm, Stage IIB, Grade 3, 1/2 nodes, ER-/PR-, HER2+
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May 14, 2011 07:56PM - edited May 14, 2011 07:57PM by Lilah

imatthew -- I have found in talking with a lot of women like me with 1 node.. that half of them are told no rads and half are told they are in a grey area and rads are recommended even with an MX.  I'm not sure why the difference... it may have to do with where the tumor lies or info about other nodes that makes them questionable (though not positive).  I had 1 node and an MX but no rads.  That said, I do have one question: did your wife have an MX or a lumpectomy?  My understanding is that even with zero nodes (and chemo) rads are recommended with a lumpectomy.

Dx 6/2/2009, IDC, Stage IIA, Grade 3, 1/17 nodes, ER-/PR-, HER2+
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May 16, 2011 05:23AM Survivorwoman wrote:

Marejo- Thank you so much for posting. You gave me so much hope the minute I read that you are a 6 year survivor. I really needed it as I had a lousy weekend full of emotions and crying. I am better now, and you helped me a lot by posting. Thank you !
Dx 7/26/2010, IDC, 2cm, Stage IIB, 0/1 nodes, ER-/PR-, HER2+
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May 16, 2011 07:37AM mikamomof3 wrote:

immatthew - I will have radiation after chemo because I just had a lumpectomy.  In the diagnosis it looks like your wife had a mastectomy and you can't really do radiation on a breast that isn't there anymore.  I did a lumpectomy as it was smallish tumor and near surface away from chest bone - not much damage was done to breast tissue for me.  I am at a very aggressive breast center so I will start chemo on Friday with EC and follow with T.  Herceptin for a year. 

Mary Beth, my general surgeon said with ER/PR - and Her2+ he was 90% certain I would do chemo.  I hadn't even seen the oncologist yet at time of surgery, but he placed a port anyway.  I have a BIG issue with needles and he said with the Herceptin I would want the port.  Good thing we placed it then so I didn't have to go back!  Start chemo this Friday.

Dx 4/22/2011, IDC, 1cm, Stage II, Grade 3, 1/3 nodes, ER-/PR-, HER2+
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May 16, 2011 09:49AM marjie wrote:

Depending on the pathology of the cancer, they may still do rads even with MX.  I opted for a lumpectomy but was told that I would have had rads regardless of which surgery I chose.  This was due to the size, grade and Her2 status of my tumour.  I was 0/2 nodes.

Treatment: Rt Lump/SNB Aug 2010, FECx3/Tx3, radsx25+8, Herceptin x18 Dx 7/13/2010, IDC, 4cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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May 16, 2011 09:44PM Nevo84 wrote:

Dear Marejo thank you so much for your inspirational story. Hope you will celebrate the 50th cancerversary.

Dx 11/3/2010, IDC, 6cm+, Stage IIIA, Grade 3, 8/35 nodes, ER-/PR-, HER2+
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May 17, 2011 05:44AM - edited May 17, 2011 05:54AM by Pecmakabo

Dear friends,

I need your help. I am in a really difficult situation. Unfortunately I do not live in the States but in a very far country of Europe. I need to decide on my future treatment by myself and I urgently need help. Please see my diagnosis below and tell me do you know of anyone who has a similar type of cancer, actually I had three in one breast. 

1. Extensive Indraductal Component (EIC) seu DCIS G III ( "commedo" subtype + "clinging" - subtype >30 ductus) in stadio pTis No Mx secundum AJCC/TNM. Metaplasia apocrinica cystica micropapillaris
2. Morbus Paget cum DCIS G III (commedo" sybtype "cllinging - subtype).
3. Sinus histiocystosis lymphonodi (0+/1).
4. Textus fibroadiposus sine morbo.
5. DCIS G III (commedo subtype) multifocalis. Microcystes. Ductectasiae. Metaplasia aprocrinica cystica micropapillaris.

Microscopic findings:
1. Imunofenotype of lezia, i.e.
E-cadherin (+), CK HMW (+++), Her2 (neu) (+++), p53 (++), p63 (+/-), bcl2 (-), CD10 (+), Er (-), Pr (-)

2. Imunofenotype of lezia, i.e.
EMA (+), CK7 (+), CK 8 (+), Her 2 (neu) (+++), Er (-), Pr (-), Androgen (-), pCEA (+), s-100 (-)

One group of doctors believe I should undergo a high dosage of chemo (6 cycles) followed by a radiation and then a year of biological treatment with Trastuzumab. Other group of doctors believe that a mastectomy was a mistake at the first place, but since I did it I do not need any additional treatment and that now I am cancer-free. These are the opinions of two different hospitals. To say that I am confused is not enough to express what I feel right now. By one hospital I am a high risk patient that should start with chemo right away and by the other hospital I am now totally cured. Whom to believe? What do you suggest? Any kind of advice will do.

Thank you so very much and sorry for bothering you,
Pecamkabo (40 years old)

Dx 3/20/2011, Paget's, 2cm, Stage IIIA, Grade 3, 0/13 nodes, ER-/PR-, HER2+
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May 17, 2011 06:42AM Lilah wrote:

I don't understand everything in what you posted but I saw one thing I DO understand - you are HER2+++.  My understanding is that you need chemo and Trastuzumab (another name for Herceptin) to fight that.  Her2+ cancer is highly metastatic - highly prone to spreading to other parts of your body - without this treatment.  If I were you I would go with the doctors who recommend that treatment.

Dx 6/2/2009, IDC, Stage IIA, Grade 3, 1/17 nodes, ER-/PR-, HER2+
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May 17, 2011 08:38AM starella wrote:

in complete agreement with Lilah, Her2 trumps all

Dx 9/8/2010, IDC, <1cm, Stage I, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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May 17, 2011 06:52PM Survivorwoman wrote:

Pecmakabo-- first of all I want you to know that I am really sorry that you have to go through this %*$^# !  Second - please don't apologize for posting, because you are our sister.

I don't know how fast you have to decide which treatment you choose, but I would contact a few top oncologists at cancer centers such as Memorial Sloan-Kettering. Maybe you could approach them for a third or fourth opinion. They will most likely understand Latin.

Find a Breast Cancer Expert

http://www.mskcc.org/mskcc/html/63217.cfm

Simon N. Powell, MD, PhD

powells@mskcc.org

Radiation Oncology

This is the directory below:

http://www.mskcc.org/mskcc/html/6302.cfm

Please let us know what you decide. Best wishes. Katia

Dx 7/26/2010, IDC, 2cm, Stage IIB, 0/1 nodes, ER-/PR-, HER2+

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