Just Diagnosed

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ToriGirl
ToriGirl Member Posts: 1,188

Ladies,

Hi..I'm officially part of the club that  no one really wants to be member of... Foot in mouth

I was just diagnosed with IDC, Grade 1.  That is all I know right now as there are other tests being done that will determine more.

I'm just looking to get suggestions, ideas, advice from those of you who have been exactly where I am about things to ask, things to look for in a surgeon, etc.  I know there is ton of information on this site and ACS, but actually hearing from women who have or are going through this would be most helpful.

I am strangely calm right now, but very optimistic about things. 

Hope to hear from some of you wonderful ladies....

Take care and God bless,

Tori

Comments

  • coss
    coss Member Posts: 48
    edited June 2010

    Hang in there Tori, this is the worst part. Is there a nurse navigator at your breast center? That's who called me and made all my appointments for surgeon, MRI, etc. It was a lifesaver since I was a zombie. My one regret is not taking them up on the offer of sleeping pills.  I thought I wouldn't need them but ended up not sleeping well for weeks. Big mistake. Sleep is very healing and helps you cope with it all.  Once you get more details, like pathology results, and a plan in place things will get better.  I remember well the strangely calm, out-of-body experience of those first few days.  A friend who'd been through it called and told me the beginning's the worst part and it was. You WILL get through this.  Take care.

  • perky
    perky Member Posts: 241
    edited June 2010

    Hi Tori,

    I was in your position at the end of January. It is a bit of a comfort hearing that it is grade I but nerve wracking how slow everything moves to treat it. Hang in there, you WILL get through this.

    I learned from reading the boards here to ask or in my case, insist on a breast MRI due to dense breast tissue. It helped me decide between and lumpectomy and mastectomy which gave me total piece of mind about my decision.  If you have smaller breasts or have not been told that you have dense or fibrocystic breasts, you may be able to skip that.  You may also get some extra tests thrown in that are terrifying but will amount to nothing. Everyone is just doing their job and you have to remember to breathe.

    Coss is right, you are in the very worst part right now. The treatment isn't that bad in fact it's empowering knowing that you are actively doing something to get rid of it but the waiting and the tests and the waiting for the test results etc is the worst!

    Please keep us posted... Thinking of you.

  • Pam59
    Pam59 Member Posts: 3
    edited June 2010

    Hi Tori,

    It is a difficult diagnosis to accept at first because you feel okay. It's the emotional roller coaster of what am I going to do now?. First, relax and take a deep breath. Once you get your path report you'll know if it is fast or slow growing. If it's slow growing take your time and be sure to get several surgical opinions. Not all surgeons are alike in their methods of treatment. If its a fast growing breast cancer then line up a second and third opinion in quick succession.

    Example: My first surgeon stated for my small 5x2x4 mm tumor she would do a quadrectomy with no reconstruction because she said I wasn't a candidate for immediate reconstruction ever. I walked out of their stunned. Fortunately I work in the medical industry and knew I need to move on.

    First: Look for a surgeon who specializes in breast surgery with lots of experience, many general surgeons do breast surgery, but it is NOT their specialty. You want a surgeon who is current on all new procedures and don't be afraid to ask how many of the type of surgery your looking for have they done. Surgeons vary in the type of breast surgery they do on the basis of how they were taught. Some will only do it a  certain way and it may not be the one you want. Never be afraid to ask too many  questions. Take someone with you. Have your list of questions ready when you see them and go over each of them until you are clearly understand. If you don't understand make them go over it until you do. 

    I was diagnosed in January this year and had a lumpectomy with oncoplasty (Dr fills the hole with surrounding breast tissue) and a sentinel node biopsy only. Doing okay today.

    Make sure you take someone with you to every appointment regarding your breast cancer from now on.  Two sets of ears and eyes are better than one. They will pick up on some of the things you miss. 

    I'll be thinking and praying for you.

    Pam 

  • ebarb
    ebarb Member Posts: 38
    edited June 2010

    Tori,

    I am with you.  I was just diagnosed 5/26 with IDC, with 70% of my mass being DCIS.  Mine is so large that a lumpectomy is out of the question. 

    You will probably be sent for an MRI, CT scan and possible a bone scan.  The MRI will help the drs see if your lymph nodes are clear will also let them know if the mass is larger than the mammo shows.  My surgeon called this a metastatic workup.  None of them are painful, but they do require an IV so that contrast dye can be injected.  They cause a 'warm and fuzzy feeling' that isn't too bad.  That's what I've had done so far.  They also sent me for a BCRA test to see if I am a carrier of the gene that makes a woman predisposed for breast cancer again and other female cancers.  If I am positive for this I may opt for a bilateral mastectomy. 

    Do you have children?  If you don't and you would like kids in the future, you might think of freezing eggs if your doctor thinks you need chemo.  I've heard from my talking to others that chemo can induce menopause, so my husband and I are planning on freezing embryos. 

    Please PM me if you'd like another newbie to talk to.  I've met some wonderful people on here, and in fact a local person to me has offered to meet up with me for coffee to vent and talk to someone going through the same thing.  I am also optimistic about my journey and it's because of friends, family and this site. 

    Best of luck to you,
    Erin (NJ)

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