Neo-adjuvant treatment and fear

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Kattis894
Kattis894 Member Posts: 218

I just found this support website and since my HER2+ journey recently started, I need all support I can get.
Trying to take one step at a time but now a few months in I find myself suddenly overwhelmed with fear. What are my prognosis? I have not had the courage to ask that question yet. How often is the lymph node negativ with a tumor of 4,5 cm?I am reading about TCHP and realise I am not getting the Carboplatia in my treatment, anyone with the same treatment as me?

The realisation that my life has forever changed is slowly sinking in. I am 55 and was just going to start a new job in the US this fall. My plans ended. I am living in Sweden and I am getting my treatments here. I have been able to take my treatments very well so far, this also makes me worried my cancer might spread even during the neo-adjuvant treatment I am now going threw. Did this happen to anyone? My doctor explained they will not know 100% the status of the cancer until the operation when they can better analyse the tumor. The wait is unbearable. Any advice is appreciated. No scans of other body parts have been done yet, perhaps because the lymph node was negative. I do not know what stage my cancer is.


This is what has happened so far in short order:

6/27/16 - Mammogram

7/6/16 - Ultrasound. First time finding out something is wrong.

7/15/16 - First meeting with doctor on oncology. Diagnosed with 4,5 cm tumor in right breast.
7/18/16 - Lymph node biopsy done - negative
7/26/16 - Started neo-adjuvant treatment FEC every 3 weeks (had 3 of this) using port.
9/27/16 - Found out my cancer is HER2+and that the tumor has not grown but not shrunk either during the FEC.
10/3/16 - Started neo-adjuvant treatment with Taxol every week/ Herceptin and Perjeta every 3 weeks. Treatment plan is 9 weeks of taxol before operation. Perjeta will be given 3 times, Herceptin will be given for one year every three weeks (12 times).

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2016

    Kattis,

    We're so sorry you have to be here, but really glad you found us. Welcome to the most amazing, supportive, and knowledgeable breast cancer Community. You're sure to get answers from others soon, but we just wanted to reach out with a warm hello and let you know we're all here for you!

    Please let us know if there's anything we can help with!

    --The Mods


  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited October 2016

    Hi Kattis!

    Different countries have approved different regimens; just because you're not getting Carboplaitin doesn't mean that your regimen is necessarily inferior. FEC + THP isn't what is usually offered in the United States for HER2+ cancer, but there are some women on this board who have done FEC. I'm sorry to hear that it didn't shrink your lump, but you may see very different results with THP.

    I was diagnosed with HER2+, and ended up doing AC + THP. You're actually lucky to be getting Perjeta; some of the Canadian women here haven't found it easy to access that targeted therapy. With Herceptin and Perjeta, your prognosis is very good. HER2+ breast cancer is aggressive, but the targeted therapies have made treatment much more effective.

    With a 4.5 cm lump, you probably were Stage II at diagnosis. And, yes, it IS possible to have a relatively large lump and be node negative.

    As for growth during neoadjuvant chemo -- presumably the THP will be fairly effective at shutting down the effects of being HER2+, which encourages cancer cells to divide. I guess I didn't worry too much about growth during neoadjuvant chemo because my tumor visibly shrank as therapy went on.

    It IS hard waiting for the operation. I had five months of chemo and thought I'd never get my operation! But, I did. Moreover, neoadjuvant chemo had wiped out the active cancer in my breast and node, so I could opt for a lumpectomy instead of a mastectomy.

    Yes, it's all about taking this one step at a time. Treating HER2+ cancer is a marathon not a sprint, but once you get past treatment, you'll be able to get on with your life.

    ((Hugs)) and best wishes!


  • Kattis894
    Kattis894 Member Posts: 218
    edited October 2016

    Thank you so much for your reply EleineTherese.

    Keeping up hope can sometimes be difficult. Usually I am a very positive person, always trying to look at the bright side of things, realising this journey is a rollercoaster with days where you have some hope and others when you don´t. Being a bit of a control freak makes this especially hard, to just let go, trust the doctors, and basically pray it all will just work out.



  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited October 2016

    Kattis,

    Yes, there are good days and bad days -- days when you're hopeful, and days when you're fearful. So long as you're moving forward, you'll be OK. On the other hand, if you feel paralyzed by fear, you may want to talk to your doctors about an anti-depressant, anti-anxiety med, or counselling -- whatever you think will help you. Many women here have improved the quality of their lives by learning how to cope with their fears and anxiety. I myself have a little stash of Ativan (anti-anxiety med) that I take when I'm going in for a scan or mammogram and I need to feel more at peace with myself.

    I'm a bit of a control freak myself. I'd like to think I'm always in control, but yes, sometimes you just have to leave it in the hands of your doctors and hope for the best. Hoping for the best for you!

  • Kattis894
    Kattis894 Member Posts: 218
    edited October 2016

    I have received klonazepam for my anxity. It helps.

    Today found out my cancer is Grade 3 and also sensitive for hormons as well. Perhaps this is all good news..? Meeting with my Onc tomorrow and feel ready to ask more questions and learn more about my prognosis.

    I just did not want to know so much in the beginning due to fear but feel more mentally prepared today, a few months in, to find out a bit more. One step at the time.

    All Love and strength to you too


  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited October 2016

    Hi!

    If you tested ER+PR+, that means you are "triple positive." That means that there's a good chance that you will be prescribed hormonal therapy (Tamoxifen or an aromatase inhibitor [AI]) after you're done with chemo. Being "triple positive" and Grade 3 means that your cancer is aggressive. However, it also means that your doctors have more weapons at their disposal to treat your cancer and keep it from coming back than if you were "triple negative."

    I am also "triple positive," and there is an awesome thread on this board for others with this diagnosis. Since I finished chemo, I have been taking Aromasin (an AI) to starve my body of estrogen, which fed the growth of my cancer. I'm doing OK on it, but some women do suffer from its side effects.

    Hope you have a productive meeting with your oncologist! I love my oncologist, but she's a scanner (likes to do a lot of scans). Fortunately, most of my scans have had good results.

    Best wishes!

  • Kattis894
    Kattis894 Member Posts: 218
    edited October 2016

    Looking for the thread for the trippel positiv but can not find it. Can you show me in the right direction?

    So good to hear your story. I am sending over a hug of strength.

    I guess my oncologist is not a scanner but I feel like I am in very good hands and trust him completely. I know of a patients that do not necessary trust their doctors (whom ever they are) and this gives another set of issues to the level of fear and anxiety. To trust your medical team 100% is very important I think. I did mention to my onc in the beginning I really wanted to take this a step at the time and that I was very sensitive to any kind of news, I guess that is why I am still not really sure about my hole picture. Every time I meet him, he asks me if I have any questions and my answer has been NO up until now...sometimes ignorance is bliss. I also do not recommend anyone google too much since everyone is different and "Dr. Google is not your friend" as I read in one of the threads. Just the word scan scares me beyond at the moment so think I am not in a rush to have one..:)

  • Brenaj
    Brenaj Member Posts: 18
    edited October 2016

    The triple positive thread is TRIPLE POSITIVE GROUP, found in the HER2+ forum.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited October 2016

    Hi!

    I tried to post a link below; I'm not very internet savvy, though.

    https://community.breastcancer.org/forum/80/topics/764183

  • Kattis894
    Kattis894 Member Posts: 218
    edited October 2016

    Thanks so much. Found it. I am updating my diagnosis as I know more in my signature. It helps. At one point I guess you need to know what you are up against and find some hope in the treatment. I was at least happy to hear there are lots of options for this type of cancer.

    My doctor told me today that he will move forward a scan of the tumor since I am worried it is growing instead of shrinking.

    Last scan a few weeks ago the tumor remained the same 4,5 cm. This scares me. Will the treatment work on me?

    I will move over to the triple positiv group och would like to thank you for your advice.

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