ER/PR-, HER2+, GRADE 2

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tjandy
tjandy Member Posts: 2

I am new to chat rooms and to bc.  I really am not sure I understand my path report but do know that I am er/pr-, her2 gene amplification and grade 2.  The cancer had not spread to my lymph nodes and stage 1.  Recommended treatment is chemo, every 3 weeks for 6 rounds, radiation to follow and herceptin for a year.  Not sure if I should seek second opinion?  Find it hard to believe that I will have to go thru all this if it is not in lymph nodes and stage 1.  Any words of advice?

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  • shadow2356
    shadow2356 Member Posts: 393
    edited July 2010

    I also had a ER/PR-, HER2+ tumor. I had a bilateral mastectomy due to there also being DCIS in my right breast as well as a strong family history. Mine was also stage 1 but it was grade 3. No nodal involvement for me either.

    I was told they always give you chemo if you are HER2+. The herceptin goes for a year. I didn't need the radiation since I had the mastectomy. If you are ER/PR- you can't do the anti-hormonals since they won't help. I did the chemo. In my case it was taxotere and carboplatin. It was rough but it was over pretty quickly. I used the Penguin Cold Caps to save my hair and they worked.

    It sounds like so much treatment. I know I felt that was too. They told me with mastectomy alone my chance of recurrence was 30%. After the chemo I will be down to between 10 and 20%. The herceptin lowers it more but they are not sure by how much. It has only recently been used for stage 1 breast cancer so there are no long term studies. They are guessing it reduces the risk greatly since it has been so effective for higher stage breast cancers.

    All the treatment is really an insurance policy. I was told you give up a year of your life so you can have the rest of your life.

    Good luck!

  • tjandy
    tjandy Member Posts: 2
    edited July 2010
    Thank you for the reply.  I still feel like this is so surreal!  I have scheduled my chemo teaching and will know more at the end of the month of my chemo cocktail Smile.  I will investigate the Penguin Cold Caps.  Thank you again and I hope all is well for you!
  • shadow2356
    shadow2356 Member Posts: 393
    edited July 2010

    The beginning is a whirlwind. Overwhelming to say the least. Once you get a gameplan you can conquer it. There is a thread on here that says how much the chemo helps in HER2+. The statistics are amazing. It made me glad I did it.

    Good luck!

  • Estepp
    Estepp Member Posts: 6,416
    edited July 2010

    Yes.. Her2+ means chemo... if you have IDC ( invasive cancer)

    What you posted is the right way to go. If you has a Lumpectomy.. or plan to.

    If you had a mastectomy or plan too.. you will not need rads , as you did not have node involvement.

    I have been around for some time , and I was Her2+ only also. If you wanna ask me anything.. send me a PM ( private message.. by clicking on my name and then.. send private message) I will try to hel you with questions.

    XXXOOO

    Laura

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2010

    "Yes.. Her2+ means chemo... if you have IDC ( invasive cancer)"  .....but only if you have more than just a microinvasion or two of IDC, or more than around 4mm - 5mm of IDC in total. 

    Since this is the forum for those who have microinvasions, and since microinvasions are IDC, I thought I should clarify that.  Women who have only a microinvasion of IDC (i.e. T1mic, which is an IDC tumor that is not larger than 1mm in size) are not given chemo.  Similarly, those who have a T1a invasive tumor (a tumor not larger than 5mm) sometimes will not get chemo.  The line in the sand for chemo and Herceptin for those who have HER2+ IDC seems to fall somewhere in the range of 4mm to 5mm, with those who have tumors that are that size or larger getting chemo and Herceptin, and those who have tumors that are that size or smaller not getting chemo or Herceptin.

  • Emster
    Emster Member Posts: 61
    edited July 2010

    I have just been diagnosed as well and having a hard time deciding whether to just have one sided mastectomy or include the good side as well. Surgery in one week. Can you tell me how to get the Penguin Cold caps in the US and how much they range?

    Thank  you so much to all that share.  I am scared but God will see me through it all.

  • shadow2356
    shadow2356 Member Posts: 393
    edited July 2010

    The website for Penguin Cold Caps:

    http://www.msc-worldwide.com/

     I paid $30 per month per cap

    How many you will need depends on your regimen. They have a questionaire for you to fill out and from there they determine how many you need.

  • lorenar
    lorenar Member Posts: 141
    edited January 2011
    Hi , 3jays Mom. How about we both say a prayer together since my Muga and Pet scan are both on Thurs. as well. I am Herpe positive with stage2 cancer.. I will know my results of tests on Friday and I am like a chicken waiting for an egg to hatch, worrying my cancer has spread. The doctors in wva do not sugar coat and make you feel very scared like your percentage is very low with this kind of cancer. I pray all goes well for you. In my thoughts and prayers.
  • shadow2356
    shadow2356 Member Posts: 393
    edited January 2011

    Hello lorenar-

    I hope your scans went well. I think it used to be true that ER/PR-, Her2+ cancer was the worst case scenario. However, with the herceptin that has actually changed. Her2+ is now considered better because the treatment is so effective. There is no hormonal treatment for the ER/PR-. The recurrence rate is higher at first. After the first 5 years the recurrence rate drops dramatically. It is much lower than the ER/PR+ people after that.

    The herceptin goes for a year. It is a great insurance policy. If you read some of the statistics you will see that you really have a great prognosis. It sounds like your doctor is telling you outdated data.

     Good luck and I wish you strength in your fight!

  • girlie
    girlie Member Posts: 1
    edited February 2011

    Hi there, Im new here in the chat room..My sister is diagnos of Invasive Ductal Carcinoma,Nottingma Grade 1, Tumor size 3.0 cm.She got her mastectomy operation last month and now she's in recovery period.The Dr. said she's ER/PR-, Her2+ we are so worried because we dont know what the next step after the chemo and how worst is the cancer is.My sister mentioned that she's on a stage 3 because out of 15 lymp node 13 are postive im trying to understand what it is number is all about but i really can't.Please someone help me to explain i do really appreciate it...

  • kittymama
    kittymama Member Posts: 139
    edited February 2011

    Hi girlie,

    I'm sorry that you haven't received any responses to your post. This thread does not appear to be very active. You might want to post in the Stage 3 section. I'm sure the ladies there will be happy to help you. All the best.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    girlie

    there is much good information on the site, go to the home page for a directory.  I think many of your questions will be answered,

    Your sis should get a good explanation when the pathology report if fully completed

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    thinking of you 3 jaysmom and lorenar.,. Check in when you can

  • Diana67
    Diana67 Member Posts: 8
    edited June 2012

    hi, can you tell me more about pinguin cold caps...are they now approved by doctors to use in US? thanks...

  • greenacres
    greenacres Member Posts: 144
    edited June 2012

    Hi there!  Sorry about your diagnosis.  I am the same, but Grade 3.  Yes, unfortunately only because of the Her2 amplification gene being positive in our cases, we must go through Chemotherapy.  Chemo combined with Herceptin will be what saves our lives. I wish you the best of luck and just remember, like day by day.....cycle by cycle.....take each one as it comes and you will get through this.  Sandra

  • cummin
    cummin Member Posts: 2
    edited July 2012

    Hi there, I was Stage 1/Grade 3 Her+ ER+ in 2003, I had chemo, Radiotherepy, 20 months of Herseptin (stopped due to LV dysfunction, should have had 24 mths) and 5 yrs of Tamoxifen.  I am still here to tell the tale!!! Lost two 1st cousins to breast cancer since but I have now a large Posteria Benign Meningeoma!!! and painful joints!!   Its been a long journey but I am still able to work and look after my kids.

  • Pbrain
    Pbrain Member Posts: 863
    edited October 2012

    Cummin, I work for Roche the maker of herceptin.  A new study was just published that was huge and very well done with many her2+ Br ca patients and they were able to show 1 year of herceptin was as effective as 2 years, so you did good!

  • LoveIris
    LoveIris Member Posts: 1
    edited March 2013

    Hello ALL!!

    I don't know if anyone is on this forum...however, I JUST got on this site...am after 6 LONG...LONG...LONG months, I FINALLY begin my journey with my first infusion this week...TCH chemo...IN CHRIST I CAN DO ALL THINGS!!!

    If anyone can share with me what I need to know...I've been doing so much research...etc...just am ready to get going...THANK YOU!!!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2013

    love - welcome, sorry you have to be here.  This is a fairly inactive thread, but here is a link to one full of ladies who have had, or are having, TCH.

    http://community.breastcancer.org/forum/69/topic/578284?page=515#idx_15435

    Also, if you put your information at the bottom of your posts regarding your hormonal receptors and diagnosis info, it will help you locate others who have similar situations.  You just click at the top right of the screen on "My Profile" and fill in the blanks! 

  • Edith61
    Edith61 Member Posts: 52
    edited November 2013


    Hello, I was told that I had Breast CA on Aug24 th after many road blocks I had a double mastectomy done on the 24th of Oct to start chemo on 12/4 6 treatments of chemo and then a year of the Herceptin.The more I read the more I wonder about this treatment.. Tj how are you now doing with all of this?

  • bonniebug69
    bonniebug69 Member Posts: 2
    edited January 2014

    I would say that since they are saying chemo helps only a small minority..like 2%_ it is nothing that I would repeat.  It just wipes out your immune system and creates lots if side effects.  In the end, it eventually comes back.  I know I sound negative, but these are facts.  Just a money maker for doctors. 

  • gtgirl
    gtgirl Member Posts: 129
    edited January 2014

    bonniebug69, I disagree with your statement. Your post is an example of why many woman whom read this site get upset and FREAK out.  If I was the moderator, I would delete such a untrue statement. 

  • jhodro
    jhodro Member Posts: 240
    edited March 2014

    I've been struggling with a similar decision. We've decided to do Taxol for 12 treatments, weekly and Herceptin for a year. I'm told that the S/E are less with this combo than the traditional every three weeks of TCH. I haven't started yet, very nervous to start.

  • mjm1
    mjm1 Member Posts: 139
    edited April 2014

    For anyone new to the site and put off treatment by the "chemo only helps a small minority...like 2%" comment, please be aware this statement is probably not accurate for a lot of HER2 cancers (maybe micro-invasive, I don't know about these - I know that is the name of this page but many other HER2 newbies are clearly coming here for answers). I have spoken with my Mum's oncologist & read a number of clinical trial studies about HER2+ cancer (mainly related to women with Stage 1-3 breast cancer), and having chemo and herceptin (which are often only provided in combination) increases the chance of being alive 5 years from something like 50% to 90% (varies depending on nodal status, tumour size etc, but has a major impact on survival), with the vast majority of the survivors also disease free at this point (and beyond).  

    I have also read studies showing survival rates before herceptin and the other new treatments were developed, and they are SCARY.

     HER2+ cancer is often very aggressive, but they have some very effective treatments, with more being developed all the time. 

    And they are increasingly finding these treatments make a big difference for groups who were previously considered lower risk because of smaller tumours or clear lymph nodes - HER2+ can be sneaky and spread through tiny cancer cells making their way round the body even in these 'lower risk' cases (though again I don't have info on really tiny HER breast tumours).

    It's everyone's own choice as to what treatment they want to agree to, but please make informed choices. 

    The treatment is not fun, but if I was ever told by an oncologist that herceptin etc would help me, I'd be on it in a heartbeat.

  • Rlsteadman
    Rlsteadman Member Posts: 76
    edited April 2014

    I had  a 1mm x 1.2 mm Her2 positive IDC. I had 3 oncologists that felt it was to small for for chemo and Herceptin. They felt the side effects may be worse than the benefits. I will just hope for the best. Sometimes I feel like people on this site make me feel like I made a bad decision even though I am following my oncologists recommendations.

  • mjm1
    mjm1 Member Posts: 139
    edited April 2014

    Hi Rlsteadman, your tumour is much smaller than the one's I have been researching (Mum's was 2.2cm plus extensive DCIS) so I certainly don't want to make you second guess your oncologists advice.

    I was more concerned because this her2 micro-invasive page comes up way before the plain her2 page, so a lot of her2 newbies with larger tumours are appearing on this page. I'm scared that a comment about chemo only helping 2% of people might put people off treatments their oncologists do recommend. The cancer 'eventually coming back' comment as if it's inevitable is also not accurate - in's not inevitable even in larger tumours - just the risk becomes high enough to outweigh possible side effects of chemo (which can be serious).

    It sounds as though they caught yours so early you managed to avoid some of the harsh treatments (not that surgery and rads is fun either) - that is a wonderful thing and I think you have a lot of reason to be optimistic about the future. Please don't feel bad because of what I wrote! xo

  • Kheng
    Kheng Member Posts: 26
    edited February 2015

    My tumour is 7 mm, node free, grade 3 ER/PR-HER2+, there is a hot debate among my surgeon and oncologist after my mastectomy

     Medical Oncologist prescribe taxol with Herceptin for 12 weekly, follow by Herceptin every 3 weeks for one year

     I have not decided to have chemotherapy and wish to listen to opinions of whether I should go for adjuvant therapy and whether coriolus versicolor can cure as it cause apoptosis of hormones negative cancer cells by Hong Kong scientist

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