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ER-, PR-, Her2+ Roll call

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  • Lilah
    Lilah Member Posts: 2,631
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    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.

  • nevo84
    nevo84 Member Posts: 55
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    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 

  • lastminuteD
    lastminuteD Member Posts: 3
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    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.

  • nevo84
    nevo84 Member Posts: 55
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    bump

  • ma111
    ma111 Member Posts: 167
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    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.

  • mikamomof3
    mikamomof3 Member Posts: 11
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    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.

  • marjie
    marjie Member Posts: 365
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    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.
  • Bold
    Bold Member Posts: 306
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    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.

  • GramE
    GramE Member Posts: 2,234
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    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 

  • ginah
    ginah Member Posts: 1
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    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.

  • Scrabblelady
    Scrabblelady Member Posts: 88
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    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.  

  • mikamomof3
    mikamomof3 Member Posts: 11
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    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!

  • ma111
    ma111 Member Posts: 167
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    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.

  • mikamomof3
    mikamomof3 Member Posts: 11
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    Got clear margins from lumpectomy, 1 node positive out of 3!  However, surgeon said there were pre-cancerous cells visible, said something about DCIS and multi-focal but I missed the context.  I'll see him next week and ask.  My concern is with the tumor being grade 3 and just Her2+, that I am at a higher risk for a recurrence in either breast! Does that seem accurate?

    Happy Mother's Day!

  • nevo84
    nevo84 Member Posts: 55
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    bump

  • mbhamel
    mbhamel Member Posts: 1
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    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.

  • Lilah
    Lilah Member Posts: 2,631
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    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).

  • ditan3
    ditan3 Member Posts: 35
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    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. 

  • deebou
    deebou Member Posts: 2
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    I'm still here. Dx in Feb 2009, my last treatment of herceptin will be 10/20/2011.

  • imatthew
    imatthew Member Posts: 69
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    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.

  • marejo
    marejo Member Posts: 655
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    I am er/pr negative and her2+++ and will be a 6 year NED survivor in June, 2011

  • Lilah
    Lilah Member Posts: 2,631
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    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.

  • Survivorwoman
    Survivorwoman Member Posts: 70
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    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 !
  • mikamomof3
    mikamomof3 Member Posts: 11
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    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.

  • marjie
    marjie Member Posts: 365
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    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.

  • nevo84
    nevo84 Member Posts: 55
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    Dear Marejo thank you so much for your inspirational story. Hope you will celebrate the 50th cancerversary.

  • Pecmakabo
    Pecmakabo Member Posts: 3
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    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)

  • Lilah
    Lilah Member Posts: 2,631
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    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.

  • starella
    starella Member Posts: 101
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    in complete agreement with Lilah, Her2 trumps all

  • Survivorwoman
    Survivorwoman Member Posts: 70
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    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