HER2 positive 3+. Getting my port today. I'm scared.

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nbarkach
nbarkach Member Posts: 16
edited July 2016 in HER2+ (Positive) Breast Cancer

Hi! I was diagnosed with HER positive 3+ on 6/20/16. I get my port today, chemo starts monday. Ill get it 6 xs every 21 days. 1 month after chemo is finished I will get surgery, reconstruction, maybe radiation... not quit sire yet. They need to first get my genetic testing done and disect my sentinel lymph nod during surgery to determine their next step. I'm so scared and full of emotion. I have to work also, although I can take days off if need be. Please tell me your experience. I'm really interested in hearing from HER2 + (especially 3+) who are going through it, or are long time survivors. Imy trying to be positive, but it's so hard at times. Such a shock. I don't even fit the profile of a person susceptible to breast cancer :(

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited July 2016

    I am almost 5 years out...I want to give you hope!!   It is so scary when you are first diagnosed and getting "the plan" - so overwhelming. 

    I had to quit Herceptin after 3 months (most women don't) because of heart issues, so I was absolutely terrified that I would not live because I did not get the year of Herceptin in.   I had a huge tumor, 9 positive nodes, and I AM STILL HERE and thriving!!

    You can too!   It will be the hardest year of your life, I can't lie to you about that part.  But you will become stronger than you think you ever were.

    As far as not fitting the profile of someone with breast cancer, I have learned after talking with literally thousands of breast cancer patients, there is no profile.  All that "talk" that is out there, simply isn't true.  If you have breasts, you are at risk for breast cancer.

    Sending my best wishes to you!  YOU CAN GET THROUGH THIS!

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

    Hi!

    First, ((hugs)). Cancer is scary, and triple positive cancer can seem even scarier. However, triple positive cancer has never been as treatable as it is today, thanks to targeted therapies like Herceptin and Perjeta.

    I am triple positive, and am two years out from my diagnosis. Active treatment for triple positive breast cancer often seems to last f-o-r-e-v-e-r. Surgery, chemo, rads, targeted therapy, hormonal therapy..... Often triple positive patients end up getting the "works." My advice to you is just to concentrate on the step you're on. Since you're getting chemo first, you can join the chemo board for those starting chemo in July 2016. There, you will find other breast cancer patients who are also going through chemo, and you can share tips and strategies for coping with side effects. Also, it's just comforting to be with a group of women who can commiserate with each other about their situations.

    It sounds like you are doing the TCHP regimen of chemo, which is a bit different than the AC+THP regimen I had. Many women have made it through TCHP, though it is known for causing gastrointestinal distress. You can keep a journal of the side effects after your first treatment, and then try to anticipate them. For example, if you got diarrhea on Day 5, you can have some Immodium on hand for the next round and take it as soon as diarrhea rears its ugly head.

    I worked during chemo, but I took it easy. I told my boss and we reduced some of my responsibilities during chemo. I worked at home as often as I could, and I didn't push myself too hard.

    Finally, there is no one profile for breast cancer patients. I have no near relatives with cancer (we're the stroke family), and I am very healthy otherwise. Take care, and if you have any general questions about triple positive breast cancer, be sure to visit the Triple Positive thread.


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  • Rufhewn
    Rufhewn Member Posts: 45
    edited July 2016

    Hi, I was dx HER2+++, Weakly positive estrogen two years ago. Had the same treatment plan. I took comfort in my oncologist, an extremely well regarded Doctor, saying that in this day and age he'd rather have a diagnosis like mine because the drugs are so effective and that big cancers fall hard. Mine did. Treatment was rough but one day at a time and even though it seems like a long time going through it, I look back and it actually wasn't that long in the scheme of life. What I will say, is just keep in mind you will get your old life back. I didn't believe that when I was going through it. I was diagnosed exactly two years before your dx 6/20/14, started chemo 7/10/14. Hugs

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  • KateB79
    KateB79 Member Posts: 747
    edited July 2016

    ^^ what they said.

    Yes, it's scary. Especially at the beginning, between diagnosis and the start of treatment. Those were the worst weeks of my entire life.

    You can do it.

    Repeat after me: you can do it.

    I did six rounds of TCHP (last August-November). I worked through all of it and, though it was hard, it wasn't as bad as I'd feared.

    After the first one, once you know what to expect, things get psychologically easier. Expect to be tired, especially near the end of the four months, and work to take good care of yourself--rest, eat enough protein and veggies, try to walk or otherwise exercise when you can, stay ahead of any nausea (take your meds), tell your doctor everything that happens (they manage side effects very, very, very well), and DRINK TONS OF WATER.

    I can't stress that last point enough. Stay hydrated. I figured out after my second round that it was a good idea to stay for the whole bag of fluids following my infusions, and I swear that was a game-changer. My nurses had no problem with that (one actually praised me for doing it), but I did have to make sure to schedule each infusion early enough that there was time. It took an extra hour each time, but was well worth it.

    Have stuff on-hand to manage bowel distress. A lot of us get diarrhea from Perjeta, but I actually went the other way after the first infusion and was constipated--I used a combination of Colace and Senokot (I'm spelling both incorrectly?), along with a magnesium supplement that my MO approved.

    We're all here to help you get through this. Have you joined a chemo group? I'm sure there's a July group somewhere on these boards. I'm still friends with some of my pals from last year's August group--making such good friends, even online, was a real silver lining to all of this.

    Remember: you can do it. PM me if you want some support, okay?

    **Edited to add this: I didn't "fit the profile," either (36, in great physical shape, etc.). Most of us don't--I think that profile is BS.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2016

    Good luck today - and I echo what these ladies said above. I was Her2+ and node positive, did a bi-lateral mastectomies and full axillary clearance, 6 TCH, Femara afterward, no rads, and a Her2+ vaccine trial. It has been more than five years since diagnosis and I am doing fine. You can do this, it is scary, but we are here to help you. Rely on the support you will receive here - nobody gets it like we do, ask us anything.

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  • nbarkach
    nbarkach Member Posts: 16
    edited July 2016

    Thank you so much!

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  • __asher__
    __asher__ Member Posts: 147
    edited July 2016

    I was diagnosed in February, triple positive. I finished TCHP on June 9th, six rounds. I had a radical bilateral with axillary node removal (I had at least one positive node at biopsy). I found out Monday that I had a complete response to the regiment! It's hard, but you can do t. The ladies here are proof that there have been incredible strides in BC & we can beat this. Find your chemo month in the chemo thread. All those women going through what you are, WHILE you are is so comforting. There are amazing women with so much knowledge and experience here. You can do this

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  • HelenWNZ
    HelenWNZ Member Posts: 485
    edited July 2016

    hi I'm 3+++ diagnosed in May 2016. I had my first chemo this month. Our group is chemotherapy July 2016 great bunch of ladies plus there is a chemo July 2016 group so your spoiled for choice.

    My first chemo experience was hard and it's true they give you the hard stuff. I didn't cope well but have noted everything to be prepared for my next dose on the 29th.

    My surgeon also said he was pleased with this diagnosis for the fact that there is so much they can use treatment wise.

    Good luck and take care

    Helen

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