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Scared and just diagnosed

keaton56
keaton56 Member Posts: 4
edited May 2023 in Just Diagnosed

Hi everyone,

I was just diagnosed on May 1st....my birthday 🙄

I have Invasive Ductal carcinoma grade 3. What happens at the next appointment? I don't know what stage I am.

What happens next? I am trying not to panic as I don't want to freak out my kids....but I'm scared.

Comments

  • jh40
    jh40 Member Posts: 139

    Keaton56 - I was exactly where you are in April of last year, learning that I’d somehow developed breast cancer at the age of 40 and with no family history. Come to find out, most of us don’t!

    This is the worst time when you’re first diagnosed, anyone here will tell you. It’s terrifying and the only thing that really helped me was connecting with others and of course my in-person support system that I was lucky enough to have. This forum is so valuable as a source of information and community.

    With your diagnosis they should have provided some more information, such as your Estrogen and Progesterone status and your Her2 status. They may have given an indication of tumor size as well. Has any of this been provided yet?

    You’ll likely meet with a breast surgeon or an oncologist once the biopsy results are fully in. They may want to order more imaging, maybe an MRI. They’ll talk to you about surgical options as well as whether or not they recommend treatment before or after surgery depending on the type of cancer you have. In my case, I met with my breast surgeon first and had surgery first, then met with my oncologist after and discussed my treatment options. For some types of breast cancer they recommend treatment before surgery.

    You won’t get accurate staging until you have surgery. If you have treatment first the staging might be based on imaging and lymph node involvement alone.

    It’s all very overwhelming in the beginning. Do you have a good support system at home? Family and friends to help you cope?

    We’re all here for you on this forum too. We’ve all been right where you are.

  • dsc
    dsc Member Posts: 50

    Keaton - I hope you know more soon and find some sort of relief from the worry. I completely can relate to your fears, I think we all must feel the same at the beginning (where I am too). Sending ehugs.

  • keaton56
    keaton56 Member Posts: 4

    I think they said 18mm grade 3.

    I do have a great support system, but this is the first for everyone in my family and friends so we're all walking blind in this!

    I'm so glad I found this for him because I feel like I'm less insane!

  • rahrah2023
    rahrah2023 Member Posts: 13

    Keaton56,

    Sending hugs your way. It is scary but be strong and get all the facts. Grade 3 is cancer, staging comes next after the biopsy. I was diagnosed in 2016 with IDC stage 1, no lymph node involvement. Had a lumpectomy and was cancer free for 6 years and it returned in the same area. I am going through chemo before surgery and it is going pretty well with the exception of a little nausea every now and then. Please try to stay calm and gather all the information from your doctor as possible. You have a great support team that will help you get through this. No one in my family had BC so I know what how scary it can be. My hubby, family and friends are my rock! Lean on them as you take this journey. Stay strong.

    Sending good vibes your way!

  • melbo
    melbo Member Posts: 266

    ditto to everything jh40 said. The early days are the hardest. It gets easier as you get more information and start adjusting to everything. I always recommend that newly diagnosed folks check out the NCCN guidelines for breast cancer — the guide is written for patients and has a ton of information about questions you don’t even know to ask yet.

    The most common treatments are:

    • Surgery — almost everyone has surgery, often it’s the first step, but some people get chemo first (but not everyone even needs chemo)
    • Radiation — a lot of people get radiation as well as surgery, but it depends on what type of surgery you get and a few other factors.
    • AI (aka hormone blockers) the vast majority of breast cancers are driven my estrogen — so blocking estrogen is a standard treatment.
    • Chemo — not all breast cancer is treated with chemo — in fact, a lot of them aren’t. Only the more aggressive, fast growing ones are. Grade 3 says yours might qualify — but 1.) it’s not a given, and 2.) even if you need it, the treatment probably won’t be as bad as you imagine.


    good luck and keep checking in!

    https://www.nccn.org/patients/guidelines/content/PDF/breast-invasive-patient.pdf

  • moderators
    moderators Posts: 7,694

    @keaton56, we're sorry that you have to be here for this reason, but you've found a great place to get information, support, and vent with others who understand what you're going through. Welcome!

    If you have a moment, please, check out our Just Diagnosed? Start Here post. You will find some helpful information there that can guide you through pathology reports, treatment options, etc.

    We hope this helps. Please keep us posted on how everything is going, we're thinking of you!

    The Mods

  • kaynotrealname
    kaynotrealname Member Posts: 346

    Hi Keaton! Almost a year ago I was diagnosed with a 18mm grade 3 IDC tumor, too. After that we went straight to surgery since my lymph nodes appeared unaffected. No scans needed because I decided on a double mastectomy. Because of a delay due to covid, my surgery didn't occur until about five weeks after my diagnosis. But I healed quickly although my pathology threw me for a curve since my tumor actually came back at 32mm. Pretty common though for tumors to change sizes in final pathology and since that was my only change my treatment remained the same. Since I was estrogen/progesterone positive, HER2 negative, they sent my tumor off for oncotype testing and I came back with an intermediate score. Since I was under 50, that meant chemo was recommended so I underwent four rounds of what we call call T/C. It wasn't a good time but it was doable and six weeks later after my last bout I had made almost a full recovery and started endocrine therapy which will probably last 10 years. After that it was reconstruction with a DIEP and now, almost a year later, I'm feeling back to normal, maybe even a little bit better due to weight loss and an exercise regime, and just coasting through. This next year won't be fun but know that as your treatment begins, you'll settle into it, the panic will subside, and life will indeed go on. It can even be better than it was before if you get the proper help to make it that way. Many hugs sent your way….

  • justagalwholoveslife
    justagalwholoveslife Member Posts: 46

    Hi!

    Try to educate yourself asap and not panic. Sounds crazy but not panicking has kept my alive mentally. (Just my opinion)

    This is where you’ll find great people, information and stories.

    I found lump in February of this year and diagnosed very soon after.
    I finally have all my information and starting chemo on May 17th.

    This is how it went for me…

    Feb 15th found lump

    Feb 21st met with PCP

    Feb 23rd MRI and ULTRASOUND (knew then that it was cancer based on how it looked)

    Feb 28th Biopsy.

    March 6th Discussed Biopsy results with surgeon. I studied everything that pertained to me as soon as I got them in My Chart. Discussed surgery options.

    March 15th genetics testing

    April 7th opted for a lumpectomy

    May 4th oncology consultation

    I had removed …. IDC, grade 3, 3.5 cm. No lymph node involvement.
    ER+ (slightly) PR+ (slightly) HER2- Stage llB Clear margins

    My issue is the oncotype score which is high. It’s a 75. Very aggressive and fast growing cancer cells.

    overall it’s pretty cookie cutter so I opted for treatment in my area vs an NCI designated center.

    I can recite this crap in my sleep 😴

    Try not to get overwhelmed. Take in one piece of the puzzle at a time until it’s finished.

    In summary my suggestion is to only read things that pertain to you. Only get your information from your dr or a reputable website. Understand everything in your reports and ask questions. You have time to make decisions so make sure you understand everything beforehand. Don’t say what if! I had to teach my daughter how to not allow herself to go there. Understand that this is treatable. It really is!

    I wish you well ❤️ stay positive 💚