anyone ER & PR Negative and HER2NEU POSITIVE

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sophie786
sophie786 Member Posts: 83

Please share thoughts and articles helpful to this group.  I'm 40 and was dx. Jan 30.  are there any special concerns for this particular group?

I am currently doing chemo before surgery for aggressive tumors.  I have one that measured between 4 to 5 cm on 2 different u/s.  and 1 around the nipple area that is around 2 cm. my oncologist is suggesting mascetomy in favor lumpectomy...I am thinking of modified radical mascetomy....I am just debating of doing single or bilateral mascetomy.  please share your experience.  My BRca tests were negative and I have no family history of breast cancer or cancer.  I'm the first case in my extended family.  I exercised regular and thought I was in great shape.  I was otherwise healthy until I discovered this lump.


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  • lkc
    lkc Member Posts: 1,203
    edited March 2013

    Me. I had pretty widespread disease through out  my breast and lymph nodes. My tumor was very aggressive and I was shocked at my stage, since I was  very diligent about diet, weight, excerise, mamos and SBE

     That was almost 8 years ago. I am fine, and you will be too.

    The initial days after receiving the dx  are the hardest. Once you have a plan in place and are comfortable with your health team, If does get a bit easier. Try to take one day at a time , and come here often for support and reliable information.

  • maryannecb
    maryannecb Member Posts: 1,453
    edited March 2013

    I think we have a thread...I'll look for it and bump it for you.

    I had a single mastectomy and like ikc...still NED many years later. 

    Do what oyu have to do...you can do it.

  • sophie786
    sophie786 Member Posts: 83
    edited March 2013

    From what I have been reading ER Negative/PR Negative Her2Positive fits the profile for aggressive/fast growing tumors.  I shocked to find out since I aggressively exercise and was very active.  I looked and felt like I was in the best shape.  I discovered that one breast looked considerably bigger than the other bc I would assess and see how much benefit weight training on my the way my body looked.  When it looked bigger I felt that the left breast also was much denser and was had a pretty big lump.  Everything happened very in short time frame.

    I am such wondering if I should go for single or double masectomy?  I want to do whatever is beneficial for best outcome.

  • Kag
    Kag Member Posts: 1
    edited April 2013

    What type of chemo did you choose? I am also ER PR negative and very HER2 positive. My total tumor size was 4cm mostly DCIS but the invasive part was 1.3 cm. I also had one positive lymph node. I had a bilateral mastectomy.

    Two Oncologists offered two different chemos. One was AC TH and the other was TCH. Not sure what to do. I want this to be over.

  • DZLassie
    DZLassie Member Posts: 10
    edited April 2013

    Hi. I hope you are coping with all the decisions you have to make. I am Er/PR - and Her2Neu +. I was originally diagnosed with pervasive DCIS but after my unilateral mastectomy, the invasive cancer was found. I also have no family history of breast cancer and am in generally good overall health. When the radiologist who looked at my mammogram insisted that I see a breast surgeon for a biopsy as soon as possible, I was so shocked I could not even form a question. My mammograms were 1 year and 5 days apart and the films went from perfectly healthy to showing at least DCIS throughout my right breast. Thankfully, my tumors were small (the largest only 8mm) but there were many of them. Had I put off my mammogram for 6 months, I do not even want to think about how big those tumors would have been and how far they might have spread into my nodes. (The SN biopsy came back negative, thankfully.) My MO put me on TCH after the mastectomy and I finished the last of the 6 TC treatments almost 4 weeks ago. Had the first Herceptin only treatment last week. I chose a unilateral mastectomy based on the advice of my breast surgeon and my general belief that saving one breast would work better for me.(At the risk of TMI - I enjoy my nipples and wanted to retain feeling in at least one if I could.)  Generally I tolerated the surgery and the chemo fairly well and am now in the process of trying to regain my strength and stamina. I would like to give you all hope that there is a light at the end of the tunnel and that the treatment, while difficult, is not necessarily the horror show that TV and film would have you believe. Many people do tolerate the chemo well. Yes there are side effects - but many of them can be medically managed through close work with your MO and his/her staff. So far, the Herceptin only has been a walk in the park. So I am hoping that I will be able to get back to my pre-cancer life before I finish the treatment in November. 

    Kag - I know how you feel. The best thing you can do for yourself is to research the two chemo options offered and learn about the pros and cons of each. Talk to your oncologists and get a feel for the office and their staff. I am not sure that there are much different survival based differences between the two treatment course you were offered and there are many women on this site on each. And your relationship with your doctor and his/her staff can make all the difference in the world to your treatment experience. Take it a day at a time. That's all any of us can do. CHeck in here periodically and let us know how you are!

  • lovetodance1
    lovetodance1 Member Posts: 62
    edited April 2013

    TAKE THEM BOTH OUT. I DID. THINK ABOUT IT, THE ONLY THING THEY CAN GIVE YOU NOW IS TROUBLE. I DID TCH AND IS DOABLE WITH LESS RISK OF HEART DAMAGE

  • lovetodance1
    lovetodance1 Member Posts: 62
    edited April 2013

    TAKE THEM BOTH OUT. YOUR (OUR BREASTS) HAVE ALREADY BETRAYED US) THE ONLY THING THEY CAN GIVE US NOW IS TROUBLE...

  • lovetodance1
    lovetodance1 Member Posts: 62
    edited April 2013

    TAKE THEM BOTH OUT.THE ONLY THING THEY CAN GIVE YOU NOW IS TROUBLE...

  • gonegirl
    gonegirl Member Posts: 1,871
    edited April 2013

    No family history. Healthy. Regular mammograms. 47 at age of diagnosis. Her2+ only. Stage iv right out the door with no lymph node involvement (spread by blood stream). I did 5 months of weekly Taxol and had a bilateral mastectomy. I will do anything to live and just wanted the breasts off of me.

  • soriya123
    soriya123 Member Posts: 662
    edited July 2013

    Didn't seem that many women on this support group have er/pr - her2 +. I am one of them just diagnosed last June.

  • medinorth
    medinorth Member Posts: 67
    edited July 2013

    Welcome to the boards, Soriya.

  • lovelikecrazy
    lovelikecrazy Member Posts: 32
    edited July 2013

    I was only 11 months out from my last mammogram and had done periodic self breast exams.  Like you I was feeling great, the best I had in 15 years.  I had AC and TH before surgery.  I was able to have a lumpectomy and by that time the pathology report not only came back that the margins were clear but that NO CANCER was found!  It was all worthwhile. I am now getting radiation, today 15th one out of 36 and will continue with Herceptin until February of 2014.  But life is returning to normal and I feel like a stronger and better person for having gone through this.  You will too.  Soak in all the love and kindness that is out there and be good to yourself.

  • soriya123
    soriya123 Member Posts: 662
    edited July 2013

    Hi Ladies, I will start my chemo first and surgery later due my aggressivw tumor. My chemo is on the 17 of July. I will get TCH every 3 weeks for 6 cycles n Herceptin for 1 yr.



    Still waiting to hear about my BRCA 1&2 results crossed my fingers for negative results. I am 39, have 2 kids 11&8, no family history of cancer that we kno of. My parents and sisters were really shocked when I told them the news. My 32 years sister cried, she s my baby sister. She and I were planning her wedding for next May 2014. All of the sudden this cancer just hit me mentally, will be mentally& physically soon on the 17 (chemo 1st cycle). I can't really help her as much as I wanted to. I hope I feel better, on her wedding day.



    Thanks ladies for this thread!

  • bluedasher
    bluedasher Member Posts: 1,203
    edited July 2013

    There is already an ER-/PR- HER2+ Roll Call thread that has lots of information

    http://community.breastcancer.org/forum/80/topic/767013

  • Sunbunny
    Sunbunny Member Posts: 38
    edited July 2013

    I was diagnosised with ER-Pr-Her+++ in Nov 2007.  After lumpectomy( 9 of 13 nodes positive) re-excision for clearer margins, TCH 6 cycles, 30 cycles of radiation and a year of Herceptin.  I have been "NED" since the surgery.  The thing is I've had serveral bouts of severe back pain and with each flare up I have had a MRI and beisdes a slightly bulging discs and some common cysctic areas there is no other apparent reason for this pain.  The pain can reach 10 and be excruciating to the point of not being able to do anything to reduce the pain. 

    I am currently seeing a Nuerologist and he has given me several meds that have helped including Methocarbamol, a muscle relaxant Nucynta, and Flector skin patch. The lastest flare up of this back pain has been the worse.  The MRI like I said did not show any metatsis but I'm just wondering whether it is there and is not being seen or has not collected in an area enough to be detected. 

    Has anyone had this happen to them.  Repeated episodes of back pain that have been checked out through the use of MRI and while several times no METS have been found only to utimately have METS in the area of this prior plan.

    I hope this makes some since to someone out there...I am not trying to borrow trouble. I just know that when this pain is active it is excruiating.

    Thanks for your time and attention.

  • maevictor
    maevictor Member Posts: 12
    edited July 2013

    My OB and Breast Surgeon told me that if you have no family history and are pre-menopausal the ER/PR- Her2+ is more common when it does happen - they also tend to be more aggressive.  To try and find a bright side to the word "aggressive" - aggressive means rapidly dividing cell which is exactly what the chemo drugs go after.  I was diagnosed with what we thought was a 7cm tumor in 10cm of very dense tissue so it may have been bigger.  I was diagnosed last may and did chemo, surgery radiation.  Also two kids - 5 and 3.  I had a double since I had very dense breast tissue which made imaging and follow-up care less comforting to me.  You have to do whatever you can live with - because that is what you will do at the end after all.

  • NATSGSG
    NATSGSG Member Posts: 231
    edited March 2015


    Diagnosed as IDC ER/PR - and HER2 + today on my right breast March 16, 2015. My tumor on Ultrasound and MRI showed 2.6 x 2 x 2. Doctor requested mammogram. Today told me its 3.1. Remembering now that mammogram squooshed the breast, I suspect that it flatten and caused tumor to be longer. She said she will take 3 + 1 + 1 cm margins from the tumor. Doctor also recommended neoadjuvant therapy (ie presurgery chemo to shrink tumor). I refused being that my cancer was aggressive stage 3. I chose to have lympectomy surgery next Wednesday, March 25. I was told to do targeted therapy and chemo 4 weeks after surgery for 6 months, followed by 6 weeks of radiation.

    I am thinking of having only just lympectomy + radiation and no chemo. I read from this site that lympectomy + radiation is standard. When I asked Dr why I need to do targeted and chemo, she said it for my entire body well being to make sure no cancers are circulating somewhere within my body.

    My MRI, bone scan, ultrasound, X ray thus far are clean.  I don't want chemo because I saw how it affected my mom (she was given many types of drugs to take - not chemo -- and her organs failed one by one, until she became bedridden for 2 years. It was heartbreaking to watch her turned into a skinny, weak person from her bubbly, gentle, smiley self. My colleague too had lung cancer as did her 2 brothers. The latter too had late stage cancer and even didn't help and they departed. When it was her turn, she quit smoking and insisted her DR gave her only radiation. I read just radiation alone works well.

    I like to know if any of you out there with similar situation like mine survive only on radiation. I am pretty much on my own, and these forums are my only source of comfort and support. Thank you all.

  • Girlstrong
    Girlstrong Member Posts: 438
    edited March 2015

    hi nat_singapore: of course you need to do what is right for you but I am here to tell you that cancer can be cured with the right treatment. According to research and multiple clinical trials, HER2 tumors that are bigger than 4mm need to be treated with Herceptin and chemotherapy. I'm so sorry that you saw your mom suffer. I don't know her medical diagnoses or treatment but what I do know is that treatment for your type of cancer is doable. I've done it and so have so many women on these boards. Your doctor will closely monitor you and you will be able to take meds to manage side effects. You can do this and these boards are a great place for support. Your dealing with lots of emotion and decision making at this point. Take a deep breath and do what you feel you can. Wishing you the best .....

  • lkc
    lkc Member Posts: 1,203
    edited March 2015

    Hi Nat, I was hesitant to reply to you at first, but perhaps my story will help you. i lost all my mother's family members to bc. i lost my mom to bc too 18 mos before i was dxed .

    I thankfully did not have metastatic bc when i was diagnosed, so i absolutely went aggressive with my treatment. surgery , chemo. rads and herceptin.

    Although there is never any guarantee i wanted to do everything medically possible to stop BC from claiming my life too.

    It's almost 10 years from my " dismal stage IIIC HER 2 POSITIVE bc" DIAGNOSIS. I AM SO GRATEFUL FOR THE ADVANCEMENTS IN bc TREATMENTS.


    GOOD LUCK DEAR!

  • Sassa
    Sassa Member Posts: 1,588
    edited March 2015

    I had a mastectomy and sentinel node biopsy (nodes were clean) followed by 4 AC and a year of herceptin. I didn't need radiation because of the mastectomy.

    The reason for the chemo is that there is still a 25% chance that the cancer cells have escaped into the body without going through the lymphatic system.

    I also had a clean CT/PET scan before starting chemo. However, scans and x-rays can only detect tumors when they reach a certain size. Before that, scans will be clear.

    At this point, you are considered early stage and the chemo and herceptin is extremely effective is putting one into remission (hopefully, long term).

  • Gem_uk
    Gem_uk Member Posts: 1
    edited March 2015
    Hi Nat. I'm sorry to hear what you're going through. I have also watched other family members struggle with chemo and was understandably apprehensive but I think it really is the case that it's different for everyone. These days they are also extremely good at managing the not so nice side effects. I had six cycles of FEC and it wasn't anywhere near as bad as I expected. I was generally unwell for 3-5 days after treatment then would slowly get back to normal before each new cycle ( minus the hair loss and general tiredness). I was given an aggressive treatment regime due to my age (34) and tumour grade. I finished chemo and radio in December 2014 and continue to take herceptin. I feel so close to being back to normal that I'm doing a 130mile bike ride for cancer research next month. I think I gave myself and my children (3 &1 ) the best chance by going for all the treatment on offer and I feel very blessed to feel as well as I do now and grateful to the NHS (uk health service) for getting me to this point.
  • Moderators
    Moderators Member Posts: 25,912
    edited March 2015

    Welcome to BCO Gem_uk and thanks for providing your feedback of your experiences. Glad your recovery went so well and best of luck on the bike ride. If you could send us a story on the bike ride that would be great as we love to publicize such positive activities.

    Our best to all on this Topic.

    The Mods

  • kh04
    kh04 Member Posts: 18
    edited May 2015

    hi, lkc, it is so encouraging to hear you are doing so well after treatment that long ago. May I know what size was your tumor when dx and did you had chemo or surgery first?

    Thus is my first time log in here and im newly diagnosed er pr negetive her2positive bc. I feel so overwhelmed and lost . I'm so glad I found this connection board.

  • Moderators
    Moderators Member Posts: 25,912
    edited May 2015

    Welcome kh04 to BCO, We understand how overwhelming this is. We too are happy you found this incredible, supportive group here.

    We are thinking of each of you!

  • MizMarie
    MizMarie Member Posts: 332
    edited May 2015

    Hi Ladies,

    I was also diagnosed with ER/PER- and HER2+ in 2011.  I did neo-adjuvant chemo, surgery, then 33 zaps of radiation, along with a year of Herceptin.  BC treatment is tough, and I had my share of bumps in the road, but I have no regrets - I did everything I could to get rid of the beast.  I am coming up on my 4 year "cancerversary", and so far, so good! 

  • kh04
    kh04 Member Posts: 18
    edited May 2015

    Thank you MizMarie, I hope my treatment can go smoothly .

    Right now I am got a little dout on my treatment plan: I got needle biopsy in late April and dx with bc,ihave 2. 8 centimeter kuma and 1 positive node. followed with bone, ct scan and breast MRI all clear.

    my surgeon and oncologist recommend me to do chemo TCH+perjeta first then surgery. I have a little concern about my lymph node status because it will be unknown node situation if I do chemo first and I feel uncomfortable on that point. Im going to ask my surgeon is it possible to do the sentioal node biopsy before the chemo?that way at least stopped the node to spread further before chemo kicks in(just want to get a peace of mind the nodes to be clear out of the way)

    Anyone had similar situation like me please give me a hand, I felt so alone and helpless. My chemo scheduled on june 3rd.


  • lkc
    lkc Member Posts: 1,203
    edited June 2015

    HI kh04. my tumor was over 2 cm but i never got an exact size as i first had a partial mastectomy and due to residual tumor and lots of nodes,i went back right away into surgery and had a full mastectomy. both my medical oncologist and my breast surgeon recommended surgery first for me.but please remember we all are different. i do know that if a tumor is large. chemo is normally recommended to shrink it down before surgery. but again we are all different. don't worry too much about the one node. it will react to the chemo just as the tumor will Also my tx was 10 years ago, so there have been changes in BC treatment plans. i know it's scary to have this invader in your body, but try take it day by day. come here often for support and reliable information. I can not express how helpful it was to me as I needed to relocate for tx and was alone. Also focus on the absolutely wonderful blessing of a clear PET. that's a biggie.

    i see that you had your first tx on the 3rd.the first was the hardest for me. i wish you a gentle road through this and we are all here to help you through it.


  • peecenluv
    peecenluv Member Posts: 3
    edited June 2015

    hi! Just wondering how you are doing. My daughter who is 32 started neoadjuvant therapy today. Her dx is very similar to yOurs. I'm so scared for her but am glad there are some gals that have made it 5 plus years. Her brca results aren't back yet. Do they check frequently to see if treatment is shrinking tumor. Hers is 6cm by about 3 cm in left breast. Any comments are appreciated!

  • peecenluv
    peecenluv Member Posts: 3
    edited July 2015

    just wondering how you are doing. My daughter just started neoadjuvant therapy. Worried for her!!!

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