HER2/neu Positive breast cancer, Had double Mastectomy

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dilli68
dilli68 Member Posts: 17
edited August 2014 in HER2+ (Positive) Breast Cancer

Hi all, in Jan I was diagnose with Stage 1 breast cancer.IDC  0.6cm. My Breast surgeon recommanded Double Mastectomy. I only wanted a Lumpectomy, she said I was High risk because of HER2 Positive. I didn't understand what that meant. She explained it to me , and told me to go see an Oncologist because I would need Chemo! I had Double Mastectomy in March, Still hoping I did not need chemo! Lymph nods came clear. That was good! So I thought No Chemo! I was wrong I need chemo! I don't want chemo! Im very scared of all the side affects from it. I'm 46 years old active mother of 4. I feel chemo will Destroy me! I'm Scheduled for treatment on the 27 of may. I'm very scared. looked into alternatives, But I'm very confused and scared of that as well, What if going natural does not work and There will be a recurrence of cancer coming back else where. Thats what my doc. Told me. If I don't get Chemo there is high chance of any small cell that they might have missed. I thought having the double Mastectomy would have me in the clear! Is anyone in my situation That did not get Chemo, With HER2?? Please help a very scared and confused woman. Thank you

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  • dilli68
    dilli68 Member Posts: 17
    edited May 2014

    My treatment is Taxotere Carboplatin Herceptin. 6 Cycles every  3 weeks. A year of Herceptin.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited May 2014

    dilli, I'm sorry you have to be here. I'm sorry you have to go through chemo..But Her2+ is a beast. Fortunately there are treatments they can do to help. Your chemo is what I had. It's not really easy, but it can be done. TCH seems to be one of probably 3 treatments that are generally given. Has your doctor recommended Perjeta? That is one of the newest that is added for us Her2 gals. I had my chemo 2 years ago and Perjeta wasn't given yet to us Stage 1 people.. 

    Please check out some of the other boards here like the TCH one and the Triple Positive one. They will be very helpful. 

    Much love - you will get through this. 

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  • dilli68
    dilli68 Member Posts: 17
    edited May 2014

    Thank you both for your words of comfort. I was  hoping to see if I could get out of chemo! 

    I need to be strong and Positive, How long before your hair starts falling out?

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  • dilli68
    dilli68 Member Posts: 17
    edited May 2014

    Thank you Kayb<3

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  • dilli68
    dilli68 Member Posts: 17
    edited May 2014

    Kayb, Are you also HER2 Positive? What is FEC? Sorry I'm New to al this

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2014

    dilli68 - you should go to this thread if your treatment is TCH, I will link it for you.  There are an abundance of people on this active thread who have had, or are having, the same regimen that you will be.  Her2+ breast cancer is not to be messed with, the advances in treating this type of cancer have vastly improved the survival rate.

    https://community.breastcancer.org/forum/69/topic/578284?page=586#idx_17560

    Just in case kayb does not come back, FEC-D is a comparable chemo regimen to AC-TH, it is a regimen given to some Her2+ patients outside of the U.S.

    Most patients start losing their hair at about the 14 day point, mine did not fall out until day 24.  If you are receiving Taxotere (as opposed to AC-TH - Adriamycin, Cytoxan, Taxol and Herceptin) you may have success with keeping your hair by using cold caps. They seem to work better with Taxotere than Adriamycin. Your oncologist must approve this, it is not covered by insurance, and is relatively expensive, but might be something you want to try.  Here is a link to the thread discussing this.

    https://penguincoldcaps.com/

    https://community.breastcancer.org/forum/6/topic/735873?page=367#post_4024135

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  • hopeful123
    hopeful123 Member Posts: 191
    edited May 2014

    dilli- Things can a bit confusing and overwhelming in the beginning, but once you have a plan laid out it does calm down. I was Her2 positive with 0.8 cm tumor and did AC-TH as the regimen. A more current one is to just do Taxol with Herceptin which is much easier in terms of side effects. When I was at your stage I asked for numbers. What is the probability for recurrence with no chemo, and with the three common regimens, ACTH, TCH and Taxol with Herceptin and then make a decision with what you are comfortable with and move forward.

    Good luck

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  • dilli68
    dilli68 Member Posts: 17
    edited May 2014

    Thanks everyone for all your Info. I start chemo tomorrow. I'm hoping for the best! XoXo

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  • dilli68
    dilli68 Member Posts: 17
    edited May 2014

    I had My chemo on the 27th, so far so good.

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  • Lynndeidre
    Lynndeidre Member Posts: 52
    edited June 2014

    Glad chemo went okay dilli!!    My diagnosis is very similar. Dx April 1 and I start chemo June 9. Nervous wreck. Taking a "intro to chemo" class at my hospital tomorrow. Hoping that helps with some anxiety. 

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  • lago
    lago Member Posts: 17,186
    edited June 2014

    Dilli just wanted to let you know I too did chemo/herceptin. You'll get through it. It's been almost 4 years since I was diagnosed and I'm doing fine, No evidence of any cancer. I too had a bmx (bilateral mastectomy) with no node involvement. 

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  • dilli68
    dilli68 Member Posts: 17
    edited June 2014

    Thanks Iago, I'm on my second round of chemo. Not doing to well today. Body ache, Headache, Dry mouth, On top of all that, I'm Bleeding as if I have my Period. I went to check my CBC. and they were good. I see My Oncologist on Monday I'm trying not to panic.

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  • lago
    lago Member Posts: 17,186
    edited June 2014

    If you are really concerned call now. They have someone on call. For dry mouth try Biotene mouth wash

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  • lago
    lago Member Posts: 17,186
    edited June 2014

    I was 49 when I did chemo (perimeno but cycles were like clockwork). My last period was 2 weeks before chemo. 

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  • mariellac
    mariellac Member Posts: 1
    edited August 2014

    Hi dill I just had a double mastectomy, with reconstruction, my lymph nodes were clear I just went to see the doctor and he said to 

    me that they found the her2 positive, I don't understand I have no breast  I'm so confused , and scared in 2006 I had a very very rare cancer in 

    cervic, they told me that I only had 20% survival ,because it was so rare they gave me the harsh chemo, the effects of chemo were nothing compared

    to the after effect for years I have battled to regain my life back, it effected my joints, my knees, my ankles, and more, I can't go through chemo again

    I just don't think my body can handle it any more, I don't feel as strong, my night mare started when I was only 42 years old now after 8 years  cancer doesn't 

    run in my family, I guess I'm the lucky one, I just can't do it anymore, I'm so scared everyone tell  me you are so strong, I'm falling apart again, 

    maria

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  • lago
    lago Member Posts: 17,186
    edited August 2014

    Mariellac I am the only person in my family to have breast cancer. I too was HER2+, diagnosed at age  49. I also had a bilateral mastectomy no nodes. HER2+ is very aggressive. Unless  your tumor was really really tiny HER2+ means Herceptin and chemo. The onc you go to will take into consideration that you have had chemo before. There are many different types. You may not get what I got or others because you've had chemo before. They may give you something that doesn't have as harsh SE or they won't give you dense dose.

    BTW August 31st will make 4 years NED (no evidence of disease). You can survivor this. And if you don't like what your onc is telling you, get a 2nd opinion… actually you should get one anyway. 

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