Recently diagnosed. How do you all know so much information

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Anonymous
Anonymous Member Posts: 1,376
edited July 2016 in Just Diagnosed
Recently diagnosed. How do you all know so much information
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  • MLMSC
    MLMSC Member Posts: 46
    edited July 2016

    good evening forum members. I was diagnosed with cancer on July 5, had a lumpectomy and 3 lymph nodes removed on July 19. I saw the site just just after my diagnosis but didn't have the courage to sign on until today.

    Haven't had my surgery postop appointment yet (that is tomorrow) and have not yet met with the oncologists so I'm not sure of the eventual treatment. They are speaking of hormone therapy drugs, but I am not sure if radiation/chemo therapy

    I guess my main question is, ......there's so much information I don't even know the questions to ask. I am reading some of your posts with all kinds of medical terms and test results and I am just completely lost. Feel like there is information I should know, but don't know, because I didn't know to ask. I know some of the information was likely provided to me or my husband, but honestly the first few days of diagnosis were a complete blur.

    Can anyone offer advice? With all of the information that is out there, how do I determine which is the most important to read and comprehend it this time?

    Thank you for listening.

    M

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

    Hi MLMSC-

    Welcome to BCO. We're glad you decided to finally sign up, we know how scary the first days and weeks following a diagnosis can be, and our members are always here to offer support and guidance as you navigate this road.

    It would help us point you in the right direction to know what your diagnosis is (type of cancer, grade, staging, etc). We have forums are all types of breast cancer and treatments, so let's narrow it down and find the right one for you!

    The Mods

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  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited July 2016

    MLMSC - I remember feeling the exact same way. You don't have to digest everything at once and you'll learn what you need to know as you move along with treatment. Much of what is discussed on here may not apply to you and some of it you may not care about. You'll come to understand the nature of your own condition and your treatment options. I'm coming up on 3 years since diagnosis and I am still learning. The women on here are awesome. My lifeline. I've asked countless "stupid" questions and received patient and informed responses. Honestly, I'd have rather learned about a different subject. My brain is filled with too much cancer information. Please know that anything you learn here or anywhere online should be discussed with you doctors. Each of us is different and it is easy to misinterpret what you read or assume things incorrectly. There is also plenty of misinformation. I normally write my questions and simply ask my oncologist to explain if and how it applies to me.

    I'm sorry you're here but I'm glad you've found us.

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  • CatsRus
    CatsRus Member Posts: 310
    edited July 2016

    I agree with Warrior Woman, I too have asked many 'stupid' questions and have got great responses. Thinking back to when I was first diagnosed I knew what kind of cancer it was, mine was Invasive Ductal, but it could be Ivasive Lobular or In Situ. Important things to find out is whether it is Estrogen and/or Progesterone positive and the HER2 status. These have an impact on treatment. All the best to you. I wish you well. Take care and ask all the questions you want.

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  • hanley50
    hanley50 Member Posts: 146
    edited July 2016

    Hi MLMSC - just another tip from what others have already offered.

    I've learned to look at other peoples signature lines to see if they are close to my DX and treatments to find out similar experiences and follow them to see what questions they may ask that I would have never thought of. And then this way when I need to ask something I can get an answer from someone kind of like me (Kind of like stalking but a girls gotta do what a girls gotta do!)

    Good luck with your post op appointment tomorrow!

    Maryann

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

    Hi!

    Have your doctors been giving you copies of your reports? Or, have they been posting them to online portals? If so, some important information will be on them.

    For treatment purposes, it's good to know:

    1) breast cancer type (ductal carcinoma in situ, invasive ductal carcinoma, invasive lobular carcinoma, etc.) -- 80% of breast cancer patients with invasive cancer have IDC.

    2) whether or not your cancer was being fed by hormones (estrogen/progesterone) -- ER+PR+

    3) whether or not your cancer has tested positive for an overexpression of HER2 protein -- HER2+

    4) how fast your cancer was growing (Grade 1 -- slow, Grade 2 -- moderately fast, Grade 3 -- fast)

    5) the stage of your cancer (your surgeon will hopefully be able to tell you at your post-op meeting)

    If your doctor has talked about hormonal therapy, that probably means that you are at least ER+.

    If your cancer is DCIS (ductal carcinoma in situ), it was not invasive and surgery/hormonal therapy might be it as far as treatment goes (though radiation might be a possibility).

    If your cancer tested positive for HER2 and it is over 1 cm in size, it is more likely that chemo will be recommended.

    If your cancer is invasive and ER+/PR+/HER2-, you can ask for an Oncotype test to determine whether or not chemo will benefit you.

    Good luck! And the others are right -- there are no stupid questions!

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  • MLMSC
    MLMSC Member Posts: 46
    edited July 2016

    thank you to everyone who responded so quickly. To answer an earlier question, I have been diagnosed with invasive ductal carcinoma. I have answers to some of the other questions, and those that I don't, we'll at least I know what to ask.

    Looking forward to learning lots and hopefully helping others through the difficult process.

    M

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited July 2016

    Getting a copy of your pathology report helps--your BS will go over it but yes we are often in a blur so it helps to be able to look at everything when your mind is a little clearer. Knowing your stage and hormone receptor status (ER/PR) is important. Elaine made a great post.

    As you move through the stages of treatment, I'd recommend finding the discussion board with people going through what you are at the same time. They go by months or seasons ("July 2016 Surgery" or "Summer 2016 Rads") and there is a *ton* of great info there from people currently in the process. (I was in the Spring 2016 Rads group but also read through a number of the Winter 2015/16 Rads posts to see what it was like for people who were completely finished.)

    Also--take in your information in manageable chunks. This is a *great* site to start with, but read for a while and then put it away. (I always know when I've hit my saturation point. :-) ) Hang in there--lots of sympathy/advice/information here to help you through.

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  • labelle
    labelle Member Posts: 721
    edited July 2016

    A lot of us read a lot, I think. Some of us have doctors that are very good at explaining things.

    I literally read hundreds of books and medical articles about BC when I was first diagnosed. Some good, some not so good, LOL.

    Getting and reading Dr. Susan Love's Breast Book is IMO a very good place for anyone to start finding out what they need to know after a BC diagnosis, including how to understand your pathology report. It contains lots of information but is still highly readable. Knowledge is power when it comes to understanding your diagnosis and choosing a treatment plan.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited July 2016

    Hi MLMSC:

    I second the advice to obtain complete copies of all pathology reports (from all biopsies and all surgeries), because the combined information and observations are used in treatment decisions.

    As noted above, important things to ask about and look for in your pathology reports are types of malignant disease present; histology (e.g., ductal, lobular); actual tumor size; lymph node status; hormone receptor status (estrogen receptor ("ER") and progesterone receptor ("PR")); and HER2 status. Additional aspects such as grade, surgical margin sizes, and lymphovascular invasion, as well as age, and health history (e.g., co-morbidities), can be considerations.

    While surgeons sometimes provide their thoughts on radiation and systemic treatments, this is not their area of expertise. You should receive or request a referral to a Radiation Oncologist (an expert in the use of radiation therapy to treat cancer) and a Medical Oncologist (an expert in systemic treatment using drugs) to discuss your case.

    In the appropriate case, the Oncotype test for invasive disease mentioned above is used to inform the question of whether to add chemotherapy to endocrine therapy or to choose endocrine therapy alone (in patients with hormone receptor-positive disease). I would just clarify that the Oncotype test does not require "PR+" status per the post above. It is used in appropriate cases of hormone receptor-positive, HER2-negative disease:

    OncotypeDX for Invasive Disease - Eligibility: http://breast-cancer.oncotypedx.com/en-US/Professional-Invasive/OncotypeDXBreastCancerAssay/PatientEligibility.aspx

    You can ask your Medical Oncologist about the Oncotype test or other tests (e.g., MammaPrint), including whether you are formally "eligible" for such tests, and whether they could provide useful information that could inform decision-making in your case.

    Understanding your diagnosis can help focus your research and reading.

    BarredOwl

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