Just diagnosed, grateful for any guidance, support, info

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EmmaRose
EmmaRose Member Posts: 4
edited September 2016 in Just Diagnosed
  • I have just been diagnosed w/ductal carcinoma. Don't meet w/surgical specialist until 6 Sept. Am uncertain of what I should be told. Stage, size, rate of growth? Should I accept the specialists suggested course of action? Will there be more tests? I am 63, recently widowed & this is all new to me. Would appreciate any & all replies.
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  • Beesie
    Beesie Member Posts: 12,240
    edited August 2016

    EmmaRose, so sorry to hear about your diagnosis. Do you know if your diagnosis is invasive ductal carcinoma, or ductal carcinoma in situ? These are quite different diagnoses and could potentially lead to different tests and next steps.

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  • etnasgrl
    etnasgrl Member Posts: 650
    edited August 2016

    (((((Hugs))))) EmmaRose, so sorry that you find yourself here. It's a club that no one wants to join, but once you do, you meet the most incredible ladies! These message boards have SO much info, support, and encouragement. Smile
    I agree with Beesie. If you could let us know if your diagnosis is invasive or in situ, we would be able to give you better advice and suggestions.

    Regardless of the diagnosis, right now you are at the worst part of this "journey". You don't know very much yet, you're scared, stressed and overwhelmed. It's rough! But hang in there! I promise that once you learn more, meet with your doctors and form a treatment plan, you WILL feel better, more in control.

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  • Smurfette26
    Smurfette26 Member Posts: 730
    edited August 2016

    Welcome to the forums EmmaRose. Sorry that you have to be here.

    You will find a wealth of information, caring and support on these boards. Stay off Google.

    As others have said the most difficult time is before you have all the details. Once a plan is in place it does get easier.

    Ask your Dr for copies of all test and pathology results. It's good to have them.

    It's difficult to know what questions to ask with so little info. Were you told anything else?

    Thinking of you. Donna.

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  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited September 2016

    Hi EmmaRose, So sorry you find yourself here but do want you to feel welcome! This pre-treatment phase is the scariest part. Once you meet with your surgeon and have a plan, things start to get easier.

    Should you trust your specialist and go with their plan? If you've picked a good breast specialist that you trust and they give you solid reasons for their recommendations then you should absolutely go with what they say. If you are confused by any recommendation then come back here and we'll help you sort it out. If you feel uneasy with your surgeon or their recommendations you should get a second opinion. Don't feel like you have to get into surgery immediately. You have time to do your research and understand what is best for you.

    By now I'm guessing you've had mammograms, an ultrasound and a biopsy. You (or your dr) should have preliminary results on cancer type (IDCor DCIS), a guess as to size and therefore stage, grade of tumor (how aggressive it is) and whether you are ER/PR positive and if your Her2 is positive or negative. They probably looked at your lymph nodes during testing and can tell if they are positive or negative. All of this can change a little after surgery but not much.

    Be sure someone goes with you to your next appointment to write down what the dr tells you. Take a list of questions with you and be sure you get everything answered. Spend some time here reading about IDC (or DCIS if that's the case) so you know what to expect.

    I was told IDC is the most common, garden variety type BC and 63 is the median age to be diagnosed. It's also very treatable and I'm guessing you'll get very positive, encouraging info from your dr.

    As a general rule, unless your tumor is large, your dr will recommend surgery - either a lumpectomy with radiation or a mastectomy. You should read up on these and start thinking about what is right for you. If you chose mastectomy will you want reconstruction or okay with flat? Every choice has side effects so you should be well informed before you make your choices.

    The next choice is chemo - if your tumor is small, slow growing, no nodes involved, Her2 negative, then your team may decide the risks of chemo are not worth the benefits. Yay! Sometimes they recommend an Oncotype test (a test on part of the tumor after they remove it) to decide.

    I had an MRI before surgery but unless you are complaining of other symptoms most Drs do not recommend CTs, PET or other scans.

    I am so sorry about your recent losses. I hope you have gathered your loved ones close so you don't have to go through this scary time alone.

    Sending hugs your way

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  • EmmaRose
    EmmaRose Member Posts: 4
    edited September 2016

    To all of the ladies above: No, I won't know more until Tuesday the 6th, when I'll meet w/a surgical specialist. Guess the ultrasound tech must be present @ the same time. I will post the information as I receive it. Thank you so much for the reminder about "paperwork" & any other knowledge that help make this journey a little softer. My husband died 4 mos ago & my beloved Doxie last week, so I am truly overwhelmed. I'm so glad to have found all of you, for I know so little. Been totally exhausted for a long while & attributed it to grief/depression, but am wondering if cancer could be contributing to the exhaustion.

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  • Wildflower2015
    Wildflower2015 Member Posts: 279
    edited September 2016

    EmmaRose,

    I am sorry you find yourself here, but you can count on finding much support, understanding, and care from the ladies on these boards. I remember how overwhelming it all felt when I was diagnosed. It must be so hard for you, losing your husband and then your doggie.I just wish I could be there to give you a hug in person. Please know that I am thinking about you and praying for you.

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

    Hi EmmaRose:

    The period of time when you do not know what you are dealing with is worse than actually knowing. I felt a lot better after I talked with the breast surgeon.

    If you wish (it may help you focus your preparation), you may wish to call the office and ask "whether the pathology shows non-invasive disease only, or if invasive disease is present." Tell them you would like to prepare for your appointment, and this information would be very helpful to preparing questions.

    If they do not wish to release this information to you, ask them to please pass your request on to the breast surgeon, with a request for a call back if possible. Hopefully, someone will tell you if it is "ductal carcinoma in situ" ("DCIS", non-invasive) or "invasive ductal carcinoma" ("IDC", invasive).

    Purely "non-invasive" breast cancers are confined to the inside of the ducts, and are treated differently from "invasive" breast cancers (that have broken through the wall of the duct and invaded the surrounding breast tissue).

    Here is some general background, just to introduce you to the general approaches and some terminology:

    Non-invasive ductal carcinoma in situ (DCIS):

    DCIS is the earliest possible stage of breast cancer and has a favorable prognosis, because it is still confined to the inside of the ducts.

    DCIS is typically treated by some type of surgery and possibly radiation (e.g., lumpectomy alone; lumpectomy plus radiation; mastectomy (usually without radiation)). Surgery may be with or without reconstruction.

    In addition, if the cells have estrogen receptors ("ER+") and/or progesterone receptors ("PR+"), then consideration may be given to "endocrine therapy" (e.g., tamoxifen or an aromatase inhibitor) to block the action of estrogen on breast cells or to block the production of estrogen.

    Pure DCIS (with no evidence of invasion after surgery) is never treated with "chemotherapy" or "HER2-targeted therapy" under current treatment guidelines.

    Invasive ductal carcinoma (IDC):

    IDC is often treated by lumpectomy plus radiation or mastectomy (sometimes with radiation, depending on lymph node status and pathology). Surgery may be with or without reconstruction.

    With IDC, if "systemic drug treatments" are recommended, they may include one or more of:

    (1) "endocrine therapy" (for ER+ and/or PR+ disease only);

    (2) chemotherapy; and/or

    (3) HER2-targeted therapy (for HER2-positive disease only); and/or

    Whether these are considered or recommended depends on various factors, including the size of the tumor, lymph node status, estrogen receptor (ER) status, progesterone receptor (PR) status and HER2 status, as well as other factors such as grade, certain test results if appropriate (e.g., OncotypeDX test), personal medical and family history, age and co-morbidities. Some women will receive endocrine therapy only.

    In some cases, systemic drug treatment is given prior to surgery ("neoadjuvant" treatment), for example in some cases of "triple-negative" (ER - PR - HER2-) or HER2-positive disease, particularly if the tumor is larger and/or there is node involvement.

    Otherwise, surgery is the first step in treatment, and the results of the surgical pathology, lymph node biopsy, and possible additional test results, will provide information that shapes your treatment plan.

    This is a just an introduction for you, and you will learn a lot more as you move forward.

    Let us know if you find out more, and we can provide additional links with information.

    BarredOwl

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  • Katzpjays
    Katzpjays Member Posts: 237
    edited September 2016

    EmmaRose- So sorry for the diagnosis that brought you here, but also confident you will find critical information, community, empathy and yes, even humor, on BCO. While you wait for your appointment, you might want to go to a bookstore and get a copy of Dr. Susan Love's Breast Book (see below...also available on Amazon). There is a wealth of credible information here and it will help you in fully understanding your diagnosis. Also, if you post your location in your profile and make it public you may find that there are BCO sisters near you. Do stay off of Google...BCO is a great resource of credible information if you have questions. Be sure to post an update after your appt on the 6th. You will likely find other women with similar diagnosis who can share with you their experiences and advice. I can certainly appreciate how lonely you must feel in light of your recent losses. Be assured you will find support here.

    image

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  • EmmaRose
    EmmaRose Member Posts: 4
    edited September 2016

    Hey, Katzpjays,

    Thank you for the support & the book reference. I shall pursue it & post any info as I gather it. Don't do Facebook or anything, so am learning to navigate this site. I can already see the beauty of spirit that I shall find (& already have begun) here. I am thankful for your concern & priceless information. Thank you, my new friend.

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  • Katzpjays
    Katzpjays Member Posts: 237
    edited September 2016

    EmmaRose - I sent you a private message. It should show up in the menu on the left when you hit Discussion Boards

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