Newly diagnosed, confused & scared

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belindar
belindar Member Posts: 12
I had a papilloma removed in January & was diagnosed with DCIS. I had to have a second surgery (lumpectomy) to get a clean margin in Feb. I just got the pathology back from that surgery & they found more DCIS PLUS cancer. Now I am waiting for an appointment with a plastic surgeon to discuss immediate reconstruction & to schedule my mastectomy. It seems like every time I go back for my follow-up visit the information get worse.

I have no idea what I am supposed to do or feel. I have to be strong for my husband & family when all I really want to do is curl up under the covers & hide.

What am I supposed to be doing? When do you get oncology involved?

Comments

  • carkris
    carkris Member Posts: 4,553 Member
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    Hello sorry you needed to
    Hello sorry you needed to find us, but glad you did. This is active board with supportive brothers and sisters. your situation is not unique, sometimes it takes re-exisions to get all the problem areas out. DCIS is considered cancer here, but I think more on the early side. Others will have more info, I had dcis but also other cancer as well. Once you get the pathology back, the sentinel node biopsy, then you will see an oncologist in order to determine if you need any chemo. It is not always necessary. They may send it out for oncotype as well. This is a really shocking scary time, when you dont know what you are facing. But try to take it one day at a time. you will get through this. use this time to get armed with information. Find out names of oncologists you might consult with. Information is power, control what you can. Post with any questions, thoughts, feelings. Big hugs!
  • camul
    camul Member Posts: 2,537
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    Welcome
    You came to a good site. I got involved with my oncologist after the mastectomy. First had the surgery, then on to the onco for the treatment plan. He/she can't do much until they have the results from the biopsy and you have healed somewhat from the surgery.

    This is really a scary time because you don't really know much yet, but you will find that once you have a course of treatment lined up, and your diagnosis is confirmed, you feel like you are doing something to fight this disease.

    We all know the feeling of wanting to crawl under the covers and hide. I remember when I was first diagnosed, going in the bathtub with a good book, but really I was taking the time to be alone to try and figure out what I should be doing. At that point, I didn't feel sick, I just didn't know how to feel!

    Prayers to you, and you may want to keep a pen and pad handy for any questions that you may want to ask the doctors. I know if I didn't write it down, I would be on overload by the time I saw the dr. and would forget what to ask!

    Best to you!
    Carol
  • camul
    camul Member Posts: 2,537
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    Double post.
    Sorry
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
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    camul said:

    Double post.
    Sorry

    We've all be where you are now
    Confused, frightened, not knowing what to do. My best advice to you is to educate yourself. Knowledge is power. You will likely see an oncologist after surgery and most of the questions below are meant for that oncology visit. Some you can ask your surgeon.

    Here is an excellent list of questions to help you formulate what best fits your specific needs:

    • Would you please write down the exact type of cancer I have?
    • How does this affect my treatment options and outlook?
    • May I have a copy of my pathology report?
    • Has the cancer spread to my lymph nodes or other organs?
    • What is the stage of the cancer? What does that mean in my case?
    • Are there other tests that need to be done before we can decide on treatment?
    • What treatment choices do I have? What do you recommend? Why?
    • Should I think about genetic testing?
    • Should I look into taking part in a clinical trial?
    • What are the risks or side effects of different treatments?
    • What can I do to get ready for treatment?
    • How well can I expect breast reconstruction surgery to work if I need or want it?
    • What are the pros and cons of having it done right away or waiting until later?
    • What will my breasts look and feel like after treatment?
    • Will I have normal feeling in my breasts after treatment?
    • Will I lose my hair? If so, what can I do about it?
    • What are the chances of the cancer coming back with the treatment you suggest? What would we do if that happens?
    • Should I follow a special diet or make other lifestyle changes?
    • Will I go through menopause as a result of treatment?
    • Will I be able to have children after treatment?
    • What are my chances of survival, based on my cancer as you see it?
    • What type of follow-up will I need after treatment?

    We're all here to support your through your treatments and to share our individual journeys. There is nothing you can ask here that someone won't have an answer to!

    Best wishes as you go through this. Please check back with us.

    Suzanne
  • mom62
    mom62 Member Posts: 604 Member
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    Your Doing It
    Hi,

    You are doing what you need to do. You are taking care of you. It will all seem confusing and overwhelming at first but just take it day by day. I am a type A personality myself and just kept on with my regular routine, that was the way I coped. I took care of everyone the same way I always did. It wasn't until later that I learned to ask for help if needed. I always found humor to be my coping mechanism. I'm glad you found this board and I wish you well in your journey. Stay positive! We are here if you want to vent or share your story or ask for advice.

    ((hugs))
    Terry
  • Ritzy
    Ritzy Member Posts: 4,381 Member
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    mom62 said:

    Your Doing It
    Hi,

    You are doing what you need to do. You are taking care of you. It will all seem confusing and overwhelming at first but just take it day by day. I am a type A personality myself and just kept on with my regular routine, that was the way I coped. I took care of everyone the same way I always did. It wasn't until later that I learned to ask for help if needed. I always found humor to be my coping mechanism. I'm glad you found this board and I wish you well in your journey. Stay positive! We are here if you want to vent or share your story or ask for advice.

    ((hugs))
    Terry

    Praying for you
    Yes it is confusing, yes it is scary but NO you are not alone. You've got all of us now, your pink sisters, to help and to support you.

    Just breathe and take it one day at a time and focus on you. Don't worry about everyone or anything else except fighting this and keeping yourself strong.


    Sue :)
  • Kylez
    Kylez Member Posts: 3,761 Member
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    We've all be where you are now
    Confused, frightened, not knowing what to do. My best advice to you is to educate yourself. Knowledge is power. You will likely see an oncologist after surgery and most of the questions below are meant for that oncology visit. Some you can ask your surgeon.

    Here is an excellent list of questions to help you formulate what best fits your specific needs:

    • Would you please write down the exact type of cancer I have?
    • How does this affect my treatment options and outlook?
    • May I have a copy of my pathology report?
    • Has the cancer spread to my lymph nodes or other organs?
    • What is the stage of the cancer? What does that mean in my case?
    • Are there other tests that need to be done before we can decide on treatment?
    • What treatment choices do I have? What do you recommend? Why?
    • Should I think about genetic testing?
    • Should I look into taking part in a clinical trial?
    • What are the risks or side effects of different treatments?
    • What can I do to get ready for treatment?
    • How well can I expect breast reconstruction surgery to work if I need or want it?
    • What are the pros and cons of having it done right away or waiting until later?
    • What will my breasts look and feel like after treatment?
    • Will I have normal feeling in my breasts after treatment?
    • Will I lose my hair? If so, what can I do about it?
    • What are the chances of the cancer coming back with the treatment you suggest? What would we do if that happens?
    • Should I follow a special diet or make other lifestyle changes?
    • Will I go through menopause as a result of treatment?
    • Will I be able to have children after treatment?
    • What are my chances of survival, based on my cancer as you see it?
    • What type of follow-up will I need after treatment?

    We're all here to support your through your treatments and to share our individual journeys. There is nothing you can ask here that someone won't have an answer to!

    Best wishes as you go through this. Please check back with us.

    Suzanne

    Suzanne posted a lot of good
    Suzanne posted a lot of good information for you. I am here to support you also, as are the others. Keep posting and updating us on how you are.
  • belindar
    belindar Member Posts: 12
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    Ritzy said:

    Praying for you
    Yes it is confusing, yes it is scary but NO you are not alone. You've got all of us now, your pink sisters, to help and to support you.

    Just breathe and take it one day at a time and focus on you. Don't worry about everyone or anything else except fighting this and keeping yourself strong.


    Sue :)

    Thanks
    Thanks everyone for the support & information.

    I have my consultation with the plastic surgeon (for the immediate reconstruction) next Wed. Then will be scheduling the mastectomy & reconstruction surgery ASAP after that. My husband is driving me crazy about having to wait this long for the surgery (he wants it done today!).
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
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    sorry you are doing through
    sorry you are doing through all this! YOU will find much usefull/ helpful info and opinions here! We all think we must be strong but many times we have to let ourselves vent, cry and crumble! YOUR family may not like it or understand it but life goes on!

    I had lumpectomy and about 2-3 mths after met with onolcogist!

    I wish you the best.
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member
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    belindar said:

    Thanks
    Thanks everyone for the support & information.

    I have my consultation with the plastic surgeon (for the immediate reconstruction) next Wed. Then will be scheduling the mastectomy & reconstruction surgery ASAP after that. My husband is driving me crazy about having to wait this long for the surgery (he wants it done today!).

    Hi Belindar,
    The answers that you have already gotten are wonderful. The pink sisters (and brothers) sure do help anytime you need them. I have nothing to add except take care of yourself right now and I do mean that. I understand your husbands fear of wanting the surgery soon, I had the same reaction. My surgeon explained to me that waiting a few weeks or even a month would not make a difference. I had to schedule several tests before she would operate. I had a re-excision also and several lymph nodes removed. Like you have already heard, you need to wait for the pathology report before you will know about chemo.
    Best of luck and if you want to put your head under the covers......go for it..just don't stay under there too long! :) because you need to fight like a girl!
    Big Hugs,
    Wanda
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
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    so happy your found us right
    so happy your found us right away...I didn't stumble on here until about 2 yrs post finding out DCIS!

    May I suggest a journal? To me I thought goofy but friend bought one and insisted I used it..in hind sight very helpful.

    Denise
  • Rague
    Rague Member Posts: 3,653 Member
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    I have no idea what the
    I have no idea what the protocol for order of seeing Drs is or time frame with DCIS. For me (IBC), I had my mammo, sono, and biopsies on Thurs, had path. report at 8:00 Fri morn, saw surgeon on Mon, Rad Dr on Wed and Chemo Dr on Thurs. 17 days after DX all my tests/scans were done, port was in and I started Chemo. I do know that there is supposed to be a longer time frame that is allowable to start TX than there is for IBC but you'll have to find out what it is for your type - there are quite a few here who are DCIS.

    You will learn that we are each unique in everything about us - what is 'right' for me is not 'right' for you or anyone else just as what has been 'right' for others was not 'right' for me. There is no what you are supposed to feel - there is feel what you feel - not what you've been told you 'should'.

    Being 'strong' for Hubby/family is also not the same for all. Looking back now - in reality Hubby and adult Son were really stronger than I thought at the time. They took over so much without me realizing it at the time but let me be me and do what I needed to/wanted to/could do myself.

    Hope I haven't gone too far off what you were asking - I do sometimes tend to do that.

    Thoughts and prayers!

    Susan
  • Megan M
    Megan M Member Posts: 3,000
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    belindar said:

    Thanks
    Thanks everyone for the support & information.

    I have my consultation with the plastic surgeon (for the immediate reconstruction) next Wed. Then will be scheduling the mastectomy & reconstruction surgery ASAP after that. My husband is driving me crazy about having to wait this long for the surgery (he wants it done today!).

    Good luck with your
    Good luck with your consultation and your surgery Belinda. I understand your husbands impatience, it's because he loves you so much!


    Keep us updated,


    Megan
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
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    Rague said:

    I have no idea what the
    I have no idea what the protocol for order of seeing Drs is or time frame with DCIS. For me (IBC), I had my mammo, sono, and biopsies on Thurs, had path. report at 8:00 Fri morn, saw surgeon on Mon, Rad Dr on Wed and Chemo Dr on Thurs. 17 days after DX all my tests/scans were done, port was in and I started Chemo. I do know that there is supposed to be a longer time frame that is allowable to start TX than there is for IBC but you'll have to find out what it is for your type - there are quite a few here who are DCIS.

    You will learn that we are each unique in everything about us - what is 'right' for me is not 'right' for you or anyone else just as what has been 'right' for others was not 'right' for me. There is no what you are supposed to feel - there is feel what you feel - not what you've been told you 'should'.

    Being 'strong' for Hubby/family is also not the same for all. Looking back now - in reality Hubby and adult Son were really stronger than I thought at the time. They took over so much without me realizing it at the time but let me be me and do what I needed to/wanted to/could do myself.

    Hope I haven't gone too far off what you were asking - I do sometimes tend to do that.

    Thoughts and prayers!

    Susan

    If her doctor is not
    If her doctor is not considering DCIS as a cancer, I assume it is treated as a precancer. I am unclear by the post if this is what is going on. Most doctors from what I have read consider DCIS a preinvasive cancer, not precancer.
    My doctors treated DCIS as a preinvasive cancer. I had one new ob-gyn that called DCIS precancer, in the same class as atypical ductial hyperplasia. I told her if that was her view on it, she could not be part of my medical team.
    I did see that there was a microinvasion. That would put her at stage I (DCIS w/microinvasion). Some doctors I have read will treat it as DCIS, some will treat it as stage I.
  • Rague
    Rague Member Posts: 3,653 Member
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    If her doctor is not
    If her doctor is not considering DCIS as a cancer, I assume it is treated as a precancer. I am unclear by the post if this is what is going on. Most doctors from what I have read consider DCIS a preinvasive cancer, not precancer.
    My doctors treated DCIS as a preinvasive cancer. I had one new ob-gyn that called DCIS precancer, in the same class as atypical ductial hyperplasia. I told her if that was her view on it, she could not be part of my medical team.
    I did see that there was a microinvasion. That would put her at stage I (DCIS w/microinvasion). Some doctors I have read will treat it as DCIS, some will treat it as stage I.

    In Situ - in site
    I haven't done research into DCIS - but based on the name I have thought it was cancer that was contained (for lack of a better word). Ductal Carcinoma says to me cancer in a duct. 'In Situ' modifies it saying it is located where it was originally located as in on an archeology dig what is found in original place is in situ. (On one dig I was on, I found a fetal buffalo calf in situ in my pit.) At least that's basically what I thought . Need to do some research on DCIS , LCIS, IDC and ILC - so far I've not done much other than on IBC but that's me.

    Susan
  • belindar
    belindar Member Posts: 12
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    If her doctor is not
    If her doctor is not considering DCIS as a cancer, I assume it is treated as a precancer. I am unclear by the post if this is what is going on. Most doctors from what I have read consider DCIS a preinvasive cancer, not precancer.
    My doctors treated DCIS as a preinvasive cancer. I had one new ob-gyn that called DCIS precancer, in the same class as atypical ductial hyperplasia. I told her if that was her view on it, she could not be part of my medical team.
    I did see that there was a microinvasion. That would put her at stage I (DCIS w/microinvasion). Some doctors I have read will treat it as DCIS, some will treat it as stage I.

    Yes, my general surgeon
    Yes, my general surgeon explained DCIS to me as precancer. How he explained it was the cells had begun to change (weren't normal), but were not cancer cells (yet). I researched it online and have heard it called both precancer & Stage 0 breast cancer (depending on the site). I personally have been referring to it as cancer.

    The pathology from the second surgery (the lumpectomy) shows that the DCIS was in multiple places and was aggressive. Plus, they found a spot of invasive ductal cancer. I still need to get copies of the pathology reports (from both surgeries). My brain went on total shutdown after receiving the diagnosis.