Triple positive t1a tumor. Advice about treament?

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duckiedee
duckiedee Member Posts: 45
edited June 2014 in HER2+ (Positive) Breast Cancer

 I am 54 years old and have been classified as t1a - invasive ductal carcinoma that was measured at 2 mm. Sentinel node biopsy was all clear and lumpectomy was benign tissue, which showed that all IDC and DCIS was removed with the core biopsy alone. My pathology report says that the IDC was nuclear grade 2 and strongly hormone positive. Estrogen receptors at 90% and progesterone receptors at 90%. The IHC score was 2+ and the FISH score was 2.8 (amplified). Ki-67 index was 12%.

     I had my lumpectomy and node biopsy just 2 weeks ago. Saw the radiation oncologist this week, and he said that I'd probably do some chemo and herceptin (due to the HER2 status) first before starting radiation. From there I went straight to my appt with the medical oncologist. She seems to think that the benefits of any chemo and herceptin treatment are not worth the toxicity and risks for someone like me. So now I'm really confused!

     The MO is recommending hormone therapy and radiation with no other treatment. I told her I am worried about future recurrence, but she says the odds of any cancer cells escaping into my bloodstream and growing into a cancer somewhere else in my body is so remote. She said she wouldn't deny chemo for me if I felt I really wanted to be that aggressive, but she seems to think it is just not warranted. I think the fact that it was so strongly positive for hormones is part of her decision, as well as the size - just 2 mm. Obviously, an estrogen blocker will certainly help my prognosis. But I can't get past all the scary statistics for HER2 positive tumors.

      She is presenting my case next week to the tumor board at our local hospital since I am so conflicted about it all. But she told me not to expect to hear too much disagreement from what she already told me.

     Is there anybody out there like me who can offer some thoughts? What decision did you make? How did you decide that? And what do I need to take into consideration? I have read all I can about this, and I just hate that there is not much research to help us out. Most people would do the happy dance to know chemo isn't needed, but I am so worried that by not treating with herceptin and chemo now that I will pay for it in the future. I could use some advice. Thanks, ladies!

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  • pupmom
    pupmom Member Posts: 5,068
    edited November 2012

    Duckiedee, in cancer world, MO's opinions trump those of ROs for everything except radiation treatment. Best wishes for a successful treatment plan!

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  • msjudith
    msjudith Member Posts: 8
    edited November 2012

    Duckiedee,

    I am 55 with a recurrance from 3 years ago. I had a bmx because of the recurrance. My pathology and size tumor is close to yours, 1.5mm, ER/PR-, HER2+, lymph nodes are all clear. My onc has recommended a very aggressive chemotherapy treatment based on success with larger tumors. 3 months of Doxorubicin and Cyclophosphamide every 3 weeks, 3 months of weekly doses of Paclitaxel and Trastuzumab, finishing with a year of Trastuzumab. He is consulting with a team of onc's at MD Anderson about whether to chage this based on the small size of the tumor before he makes a final recommendation. Based on other discussion groups MDA has a very agressive approach. I will hear back from the onc on Monday. I will let you know his final recommendation. Below is a good discussion as well.



    Topic: calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+



    Hope this helps

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  • duckiedee
    duckiedee Member Posts: 45
    edited November 2012

    Thank you, msjudith, for your reply. I spoke with my oncologist again yesterday. She said the tumor board agreed with her recommendation of no chemo. But since I am feeling so conflicted, she suggested I get a second opinion at another larger hospital close by. She is referring me to an oncologist who deals exclusively with breast cancer. I am curious to hear what they say about it. This is a prestigious hospital with an excellent reputation. Maybe they are more up to date with research and such. My onc said she would treat me with chemo if I really felt adamant about it, but I sense that she thinks I am being overly anxious. I can't be the only one who feels this way, can I? From all I have read - even for really tiny tumors - Her2 positive is nothing to mess around with. Please let me know what you find out. Best of luck! 

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  • msjudith
    msjudith Member Posts: 8
    edited November 2012

    Will do duckiedee, best of luck to you.

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  • msjudith
    msjudith Member Posts: 8
    edited November 2012

    Okay, I saw my onc today and have decided to move forward with the aggressive treatment. I start December 6th. Should get my chances of recurrence down below 10%. Let me know what you find.

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  • duckiedee
    duckiedee Member Posts: 45
    edited November 2012

    Good luck as you move forward, MsJudith. It sounds like you have a good doc who is not messing around with this. I have an appt next Tuesday for my 2nd opinion with a different onc.  I am going armed with lots of questions and am hoping this dr will do a better job of listening and explaining. I will let you know what I find out. Best wishes to you!

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  • luludoc
    luludoc Member Posts: 4
    edited December 2012

    ms Judith

    I'am sorry my english is my second language!

    I was T1a in mars 2009 (triple +)  HER2+ 2mm no herceptin, no chem. only surgery, and intensive radiotherapy (study) 2 tx/day x 5 days double dose each treatment and only a the part of breast. IT WAS THE RECOMMANDATION IN 2009.

    IN may 2012, I was running 5 km 3-4 times a week, so i way in very good shape.  The first day (april 19) that I change my position of running (because I saw a theacher), I felt a pain between my scapulum(? i don't know in anglish) D5-D6.  I thought It way a  sprain  of the thoracic spine.  The pain way still present the june first. I had a scint. of bone and the result was +, ......

    I'm 46,  NOW I RECEVE HERCEPTIN, ALL MY LIFE... since 2012 of july.... (HOW LONG?? NO ONE KNOWS HOW LONG BUT THE STATISTIC IS NOT GOOD) AND I RECEVE ALSO TAXOL UNTIL MY BODY FEEL TO MUCH DYSTHESIS (NEUROLOGIC PROB.) OR PROGRESION OF THE META.  

    I THICK YOU SHOULD FIGHT TO HAVE HERCEPTIN FOR 1 YEAR.  I did fight in 2009, not enough...

    good luck, take care 

    lulu

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  • duckiedee
    duckiedee Member Posts: 45
    edited December 2012

    Sorry I haven't been back to post an update. I sought a 2nd opinion regarding treatment for my t1a triple positive tumor. This oncologist was SO helpful, and it was the first time I really felt listened to. She completely understood my feelings and gave me lots of things to think about. We spent an hour just talking - like you would to a friend - and I never felt rushed or talked down to. In the end, I decided to go with chemotherapy. I was supposed to start today, but due to my insurance company questioning one small detail - we moved it to tomorrow instead. I had a port put it last week, went for a wig consultation already, and spent an hour or so with the chemo nurse yesterday for my chemo education. I met the NP and she agreed that if she were HER2 positive, she would want chemo too - regardless of the tumor size. I am feeling confident that I made the right decision for me. Thanks to all of you for your input. I knew I couldn't be the only one in this situation. Good luck to everyone and much love to all my BC sisters! You have been so helpful.

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  • msjudith
    msjudith Member Posts: 8
    edited December 2012

    Lulu, my prayers are with you. I have started 6 months of Chemo just had my 2nd treatment and tolerating well.. With a year of Herceptin. You are right, HER2 +++ is nothing to mess with.



    Bless you.

    Judith

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  • msjudith
    msjudith Member Posts: 8
    edited December 2012

    We have started about the same time. What is your regimen?

    Judith

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  • Seakos1
    Seakos1 Member Posts: 5
    edited February 2013

    Hey duckiedee, my diagnosis was similar triple positive tumor was 1 cm and lynph node negative, but the ki-67 was 30.65%. My oncologist sort of left decision up to me regarding treatment, but when i was confronted with percentages of reoccurrence I went the chemo Herceptin route. Was not thrilled about it, but I do not want to revisit this in the near future. Got thru 1 round of chemo pretty well and 2nd Herceptin ok, I really hate the port! All the best to you...

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  • fendi52
    fendi52 Member Posts: 2
    edited July 2013

    Hi Duckielee,

    My diagnosis was a similiar triple positive tumor 7 mm and Ki-67-26% but I have not had the lymph node biopsy yet, I will do that on Wed.July 31st. I have read your story and hope you are doing well. I have jsut started the process of talking to oncologist and just trying to learn as much as I can about my diagnosis. This HER/2+ is really scaring me and my first recommendation has been to get a Dbl Mastectomy and Herceptin. I have implants now and they say it is not recommended to do radiation with implants and that   they would not make it thru, so that would be another surgery. I am not crazy about going thru Chemo, but will look at all options. I would love any feedback from you and how you are doing. Thx, Fendi

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  • Ailurophile
    Ailurophile Member Posts: 130
    edited October 2013

    Hi everyone,this is my first post, I was dignosed with stage 0 non invasive DCIS.My MRI came and confirmed the diagnosis. I decided to have a double mastectomy even after my MRI was very good.I was told that I have less than 2% chance to need any other treatment since my desicion is very smart.guess what I woke up after surgery,my doctor said every thing is good. 0/3 nodes were not involved and she is sure the pathalogy will be good too.long story,i went for my first appointment after surgery and I was told that they found invasive 2.2 cm breast cancer,that nothing showed it,neither the  MRI  nor ultrasound and mammo and several biopsies.Sealed i am Stage 2 a er/pr+ and HER is on the border so they sent it for Fish. I WILL NEVER COULD LEARN ABOUT THIS STAGE 2 IF I WAS NOT CHOOSING  Mastectomy .I dont feel lumpectomy is enough in terms of Breast cancer.I dont want to be negative but I already have 2 friends with previous lumpectomy and one already did single mastectomy.other is in process to do double.any ways I am really scared from my own situation,not every one is hiding a gigantic tumor that is hiding there.so with that being said, Goodluck,and try your best for your tretment. 

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  • barbiecorn
    barbiecorn Member Posts: 437
    edited May 2014

    I too had a tumor that was undetectible until I had my bi-lateral mascectomy...everything is scary...I am HER2+  - it has been two years since my surgery...I am doing alt. treatment...refused chemo and radiation but will never know if it was the right decision...I am just not happy with the conventional stuff...why are they not coming up with something better than killing your immune system and all your good cells with chemo...sometime I think the drug companies don't want to cure cancer...there is so much money to be made....all scary stuff....wishing everyone well.

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