Newly diagnosed, triple neg IDC, still running tests

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Swewing
Swewing Member Posts: 34
edited November 2017 in Diagnosed and Waiting for Test Results

So I’ve just been diagnosed with triple negative, IDC, grade 3, unknown stage. I have a breast MRI next week and an oncology appt the week after that. I guess still trying to figure out if it has spread, but blood test and chest X-ray came back looking good.

I guess I feel so unsure because I don’t know the order I will be treated. I want to work, but not sure I will be able to. Thankfully not concerned about the money. So glad I have great family and coworkers. Still in shock. Reading all of these posts is really helpful soglad for this community.

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2017

    Hi Swewing, and welcome to Breastcancer.org.

    We're so sorry for the reasons that bring you here, but we're really glad you found us. You're sure to find our Community an incredible source of information, support, and advice!

    To get you started, you may want to read through and introduce yourself on the Just Diagnosed forum, as well as the Triple Negative and IDC forums.

    We hope you find comfort here, knowing there are so many of us here to support you! Please stay engaged here as you navigate your diagnosis and treatment. We're all here for you!

    --The Mods

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  • VL22
    VL22 Member Posts: 851
    edited November 2017

    Hi and sorry you’re here. Seems like so many of us are being diagnosed triple negative. With TN, chemo is usually on the table, but not always. As soon as you know the stage and meet with your breast care team you’ll get plan in place. The beginning is the worst - the tests, the not knowing, the fear etc. but there is so much support here and understanding that is really makes it easier. Honestly, try not to worry about work at this point, because it’s just an added stress and you simply don’t know. It’s great work is supportive and you have family support too. Please keep us up to date

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  • AgathaNYC
    AgathaNYC Member Posts: 473
    edited November 2017

    Hi, Swewing - nice to meet you but sorry that you are going through this. I hope you'll find these message boards a good source of information and support. I certainly have.

    On Sept 11the I received a similar diagnosis of triple negative IDC (with a little ILC thrown in for kicks.) All treatment plans are specifically tailored to a patient's individual cancer, but I can share what I'm doing if it is helpful. Please know my tumor is large and grazes the chest wall, so that was a factor in planning.

    In the 3 weeks before treatment started I had an MRI, PET scan, plus additional mammogram and ultrasound. I also went for genetic counseling. (Thankfully all these tests lead my doctors to believe the cancer hasn't spread and that I don't have any genetic mutations of concern.) I would have started chemo a week sooner but there was a mixup with an outside lab being slow in sending my biopsy sample to my doctor for further testing.

    Because many triple negative cancers respond well to chemo and my tumor was so large my oncologist wanted to do chemo before surgery. Within 3 weeks of my first consult I started a common combination chemo, Adriamycin and Cytoxan (a.k.a. "A/C"). I had an infusion once every 2 weeks, for 4 cycles. In 2 weeks I switch over to another chemo drug, Taxol, for 4 cycles. I can feel that my tumor has definitely shrunk, by more than half. My oncologist believes it can be completely killed off by the end of the chemo therapies.

    I haven't been able to work full time since chemo started, but many people do. I have great days and bad days. Everyone has different experiences with chemo side effects. Feel free to pop over to the October Chemo thread if you want to read up on all the nitty-gritty of what it's like to start off a chemo regimen. It's a great group, lots of tips and support.

    Surgery will be the next step for me. That hasn't been scheduled yet, which is good since I'm having trouble deciding on what type of surgery/reconstruction I want initially.

    After surgery may or may not come radiation for me. Also, an additional chemo is pill form, Xeloda plus a possible clinical test trial for triple negative cancer.

    I hope this info has been helpful. GOOD LUCK as you move through this new world. It's overwhelming but you can do it. There's a ton of support here. You've come to the right place!




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  • Swewing
    Swewing Member Posts: 34
    edited November 2017

    Thank you AgathaNYC, I really appreciate the info. I start AC on the 12th and then I’ll have taxol after. Then I’ve decided on a double mastectomy with reconstruction. That probably won’t hapen until April or May

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