Just diagnosed and confused

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riverview817
riverview817 Member Posts: 30
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I was diagnosed with IDC on October 12th, 2009 after I had a surgical bioposy to remove a duct that was causing some discharge and to biopsy an area with a few microcalcifications.  I beleive I am in the early stages as my path report says I have invasive ductal carcinoma and in situ carcinoma and extensive ductual carcinoma.

My confusion is this- there is so much information to get and I am told I have to have a mastectomy.  They want to schedule me the day they tell me...I say I need a few days to "digest" all of this.  I'm 38, mother of two, married, full-time working mother.  After a few days I start to tell friends, family and I'm getting so many questions.  I just don't know the answers.  I'm trying to find a great reconstructive surgeon because I'd like to do immediate reconstruction and it was suggested to me to a double mastectomy.

 There is just so much to think through and I'm not sure exactly how to find out the information.  Everyone keeps asking me about what stage then I read about the grades....

Friends and family make me feel a little weird that I don't know more information.  I think I was just in shock when I was told since before and after the biopsy I was told I was very low risk.

 I feel kind of confused as to who my doctor is.  The surgeon I had only met once before the biopsy.  I think I'm going to call my family doctor tomorrow.  I feel a little lost who to talk to about my questions.  I get the results from my MRI back tomorrow.  It's just all so fast and so confusing it almost seems unreal that it is happening to me.  If I choose another plastic surgeon in a larger city nearby, then I have to use one of their surgeons and not the one that just did the biopsy.

I feel like I am suppose to be in controll of this information, but I don't feel that way at all. 

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  • rumoret
    rumoret Member Posts: 685
    edited October 2009

    Well.........first you should take a deep breath and take the time to digest all of the information. You have plenty of time to talk to the various doctors on your list and make the RIGHT DECISION for you. Make sure to take someone with you on these consultations. Remember if you don't like their answers.......ask them back the simple word (WHY?) And then record or right their answers down. When you get all of their answers.....go home and research your options and if you need to run them by us.....come back to the boards and I am sure someone will have an answer for you or will look it up. 

    I am glad that you were able to get an MRI and the results from that will help you with your surgery options. Are you the first in your family to have breast cancer? My mother was the first and was diagnosed a triple negative at age 69 years old....she is doing fine 10 years out. She never got tested for BRAC 1 & 2 gene........but I did 3 years later (tested negative). You might want to get this test to help with future decisions.

    I noticed the HER2+ on your diagnosis...........the doctors will recommend possibly......Herceptin.

    Anyway, I was just dropping in on the boards today for a short period of time when I saw a few posts that I felt the need to read and respond to.

    Sending you hugs,

    Terry

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  • zap
    zap Member Posts: 2,017
    edited October 2009

    It is very overwhelming and you have every right to be confused.  A ton of bricks just landed on you.  I do not know your personal situation but most people do something like this:

    1.  Go to primary and get referral to breast  surgeon when the problem is suspected.

    2. Go to breast surgeon who gives you options based on the mri, maybe ultra sound, biopsy, whatever. That could be lumpectomy or mastectomy. 

    3. BS gives you referrals and choices on reconstruction that many times occur along with cancer surgery.

    4. If you choose reconstruction, you see that doctor for a discussion.

    5.  You make your choices and set up surgery with the BS (and she or he arranges for reconstruction if that is your choice).

    6.  You get surgery and learn your status (on nodes).

    7.  The breast surgeon calls you and let you know what to do next (oncologist, if that is the route). You  make an appointment with the oncologist (if needed, this may be two weeks after surgery)

    8.  The oncologist decides on treatment (chemo if needed) and suggest radiation (if needed).

    9.  You follow up with BS to check on healing.

    My BS was actually my main person, and remains to be the main person.  She orders the mri and she tells me the results.  I now see her every 6 months.

    It may be different for you, but this was the standard for many.  BRING SOMEONE with you when you see any doctor.  Your primary can direct you on whom to see if you get confused.  Most importantly, I was told that waiting a few weeks to think things through was fine as the cancer doesn't spread in a week or two.  Of course, you need to verify that with your own doctor.  Many women take months to decide on their course of action.

    People do not mean to let you think that you should be on control of this.  People who love you want answers too and so they often can put that burden on you.  Just tell well-meaning people that you don't have the answers yet.  Good luck!

    O My, I was on the same time as Terry.  Everything she said is only GOOD!

    Susan

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  • dlb823
    dlb823 Member Posts: 9,430
    edited October 2009

    riverview817 ~ I'm so sorry that you're joining the club that none of us ever wanted to be in, but I'm glad you've found us, and I hope we can help you with some of your questions.

    First, it does sound like everything is coming at you incredibly fast, so don't be afraid to tell your doctors that you need time to digest the information and make your decisions.  Do not let them rush you into surgery!  You need time both on an analytical, decision-making level, as well as an emotional one.  Assuming the MRI shows nothing else going on in your other breast, there is no right or wrong choice re. unilateral vs. double mast -- if a mast is the route you decide to go.  But even then, I would absolutely get a second opinion from different surgeon, preferably a breast (only) surgeon.    

    One thing that helped me the most with coming to grips with needing a mastectomy was seeing photos of reconstructed breasts, especially Diep flap surgery, which is what I ended up having (unilateral, because I felt that getting off HRT would be a huge factor in minimizing my future risk, and I did not want to lose nipple sensation on both sides if I didn't have to).  But there are wonderful women here who can give you thought-provoking reasons to go either way.  The decision is a personal one, and should not be made under pressure of a time deadline.

    As far as finding another surgeon and plastic surgeon, if you are anywhere near an NCI-designated facility, they will have both breast surgeons and plastic surgeons on staff who work together all the time, and they will be totally up on the very latest reconstruction procedures:

     http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

    I know it may seem hard to believe, but the path does get easier as you begin finding doctors you totally trust and realize that you have decision-making input into your treatment.  (((Hugs))) to you ~  Deanna

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  • jancie
    jancie Member Posts: 2,631
    edited October 2009

    I agree with Zap as far as going to your primary care physician and getting a referral on a breast surgeon.

    I printed out all of the breast surgeons that operated at a certain hospital and faxed it over to my PCP.  He in turn called me and gave me what he considered his 1st, 2nd, and 3rd choice.  I was adament that I had all of my treatments at a certain hospital in this area so I only gave him the list of surgeons that worked out of that particular hospital.

    Not only that, my oncologist and radiologist are at the same location and they all do talk to one another about my particular case so it is great when you have a "team" working for you and helping you make decisions.

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  • riverview817
    riverview817 Member Posts: 30
    edited October 2009

    Thank you ladies for your words of wisdom and time to reply.  I am starting to make a list and will definitely call my primary doctor tomorrow to see what he can do to guide me.

     I will see what tomorrow's mri results say and go forward.

     Thank you so much.  I am glad I came across this forum today!

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  • Nicole112
    Nicole112 Member Posts: 327
    edited October 2009

    Riverview,

    I am just getting on today and I felt the need to reach out, too! I am a 37 year old mother of 2, wife, and full time working woman! We hae a lot in common! This forum will really help you to educate yourself on this disease! Prior to being diagnosed, I thought cancer was cancer, and chemo was chemo! I thought one disease, one treatment... as you will surely learn, there are so many different types of cancer, even in the breast cancer family. The best news ever, how much research there is in this cancer and how treatable it is! So, tomorrow when you get your MRI results know that you are not alone... a lot of us have walked the walk and some of us on this website are ahead of you in treatment/ decisions/ etc... reach out to the forum and use it to your advantage.. I think a lot of times I have learned more here than any dr's office. Much like you said, sometimes at the drs office, we are in shock and not sure what questions to ask until we leave the office! The, for me, in the middle of the night, the questions would pop into my head and I want research here to get my answers!

    Please keep s posted on your MRI and ask questions if you need to!

    I hate to welcome you but I am glad you found this website!

    Nicole!

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