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joyko
joyko Member Posts: 104
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Unfortunately, I am a new member on this forum.  My BS just called and delivered the news - DCIS, stage 0, ER/PR+, grade 3.  After reading some of the posts on this board....I am now more nervous than I was a short while ago.  I had the feeling from the initial reaction of the BS to my films that I was not going to hear "benign" after my biopsy.  However, I felt 'good' (if you can!) hearing it was DCIS and not anything worse than that.  But now --- after reading about grade 3 and how aggressive it is --- I am once again quite scared!  My BS will see me on Thursday -- has mentioned me getting an MRI done .... I am overwhelmed!!!!   I thought it would simply be 'remove the rest of the DCIS' - radiation .... over!  But I see that now I have many avenues to cross ..... thank goodness you are all here!!!  Thank you.

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  • mom3band1g
    mom3band1g Member Posts: 817
    edited February 2010

    Hello, sorry you are here but you will find such good info and lots of amazing women.  We have all been where you are right now.  I am pretty new here and it is amazing to me how much I have learned already.  I had an mri before I met with my surgeon too.  I had a lumpectomy as well but for me it wasn't enough.  Just read all you can and ask all the questions you need.  The beginning is truly the worst. 

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  • 2z54
    2z54 Member Posts: 261
    edited February 2010

    Hi Joyko,

    Sorry you had to join the team, but you'll find many women here who are very knowledgeable and have already walked in your DCIS shoes.  I had IDC, so I don't know much about DCIS. But, I would assume that an MRI is just the standard procedure to make sure the bc hasn't spread to any other parts of your breasts.  Keep us posted on your progress, and ask as many questions as you need. Where you're at now; incomplete diagnosis, more tests, no plan yet... is the hardest part of the journey.  And we'll be here to help! Good luck!!

    Sue

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  • deborye
    deborye Member Posts: 7,002
    edited February 2010

    You will be fine, I had IDC 6mm and DCIS 7mm, Lumpectomy Rads and now I am on Arimidex and doing just fine.

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  • dsj
    dsj Member Posts: 277
    edited February 2010

    I am not an expert (still new to this diagnosis myself), but I have been reading a lot about DCIS.  And while I think it's true that DCIS Grade 3 is more agressive than Grade 1, it's still DCIS, still pre-invasive, still highly treatable (one doctor even described it to me as "curable").  My first biopsy said DCIS Grade 1-2  and I had an MRI.  The MRI actually gave me a lot of comfort because it didn't pick up anything more, so I would take advantage of that if the doctor orders it. Two of the (many doctors) I saw also said that they couldn't always tell the grade til they do the lumpectomy, I just assumed they meant that the grade might turn out to be worse than 1 or 2.  But the radiation oncologist I saw yesterday (someone with a major research reputation) said that sometimes after the lumpectomy they lower the grade.  I guess this is a roundabout way of saying that, yes it's scary, but it's not necessarily the worse case you are imagining.  Get all your questions ready to ask your doctor. Lots of people on this site can help you figure out what it is  you need to know and ask.

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  • 3monstmama
    3monstmama Member Posts: 1,447
    edited February 2010

    In my experience, they can determine the grade of DCIS from your biopsy but they can't always determine how extensive it is.  Thats the purpose of the MRI.

    WARNING:  MRIs can turn up lots of stuff that may require additional tests but that are not anything at all.  My first breast surgeon sent me for an MRI that led to her saying I needed an immediate CAT scan because of issues with my liver.  Talk about a blow to the gut!  DCIS--even grade 3--is contained curable cancer.  But liver cancer--that one people die from.  I cried my eyes out in my office.  In the end, it turned out to be nothing but for a week there, life stank.

    hang in there!

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  • CAROLMARIE427
    CAROLMARIE427 Member Posts: 206
    edited February 2010

    Sorry that you had to join us here.  MRI is routine after a diagnosis for DCIS.  Don't be alarmed by it.  As the above post said, grade 3 is a more aggressive type of DCIS, but it is still contained in the milk ducts and it is not invasive.  Try to take a deep breath and not get too overwhelmed.  Hearing the initial diagnosis is the worst part of the journey.  Hugs

    Mom3band1g-see you are already helping others!!!   

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  • molly52
    molly52 Member Posts: 389
    edited February 2010

    Hi Joyko,

    Sorry you had to join us. It's a whole new world and a whole new vocabulary.

    I was kinda like you when diagnosed, except I had microinvasion (very small).  I had my lumpectomies (2 for clean margins)  - radiation and arimidex. So, it is not improssible that you will have your surgery and radiation.  Since you are ER+ you will be given something like Tamoxifen (premenopause) or Arimidex(post menopause) I expect. 

    They will do a whole batch of tests prior to your surgery - 'cause they want to know where it is located.  There is a member here "Beesie" who is amazing with her DCIS information, stats and probablilies. Try linking into some of her posts.  I think you will find them comforting.  There are lots of others, but Beesie comes to mind at the moment.

    We are here for you.  This forum is a goldmine of information, when you need information - and support when you need to rant.

    Take care,

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited February 2010

    Hi Joyko,  I know this is terrifying for you and I'm really sorry you have to go through this!  And as stated above Beesie has many posts (actually has one great one where a great deal of info is condensed - I'm sure it's close to the top but we will pull it up so look for it when you are feeling more on steady ground)..  When you see your bs on Thursday, you might want to aks them to have the tissue re-examined by a pathology lab who specializes in breast cancer.. There are several out there - I used Vanderbilt and my DCIS grade 3 went to DCIS, grade 1.  What a second opinion on the pathology CAN do is solidify your decision..  The other thing I always suggests is to add a therapist to the list of docs you will be seeing in the near future - bs, oncologist, ps etc..  In my experience we, at this stage, are so caught up in fear that we are hearing everyone elses voice when it is so important now to hear you thoughts, your feelings and finally your decision.  Of course everyone else is important but ultimately you will have to live with the choices when everyone else goes back to their "normal" life..  A therapist might help you also clear some of the fear and anxiety.  Good luck I wish you the absolute best outcome - if that is possible in this situation!   Deirdre 

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  • iHEARTu
    iHEARTu Member Posts: 213
    edited February 2010

    HI Joyco-
    Sorry for your news, it sure is shocking isn't it?  I'm pretty new too, but I know any support is helpful:)

    I also was DCIS grade 3 and had an MRI as well. The Dr. wanted to see if some nodes might be involved, but wouldn't know for 100% from path report after surgery but they also want to see if you have anything on the other breast.

    As far as the MRI, pretty standard procedure. You'll get an IV with a drug. There will be a hole where your breasts will go into and you'll be lying face down for approx. 30 minutes. The technicians are very respectful. One asked if i wanted some aroma therapy scents...LOL, I declined:) They put a warm towel on my back so I wouldn't  get cold. Some ladies get earplugs or earphones for music because the noise is pretty loud. You just need to relax.

    Good luck..ask a ton of questions and make a list!!

    Cathy :)

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  • MariannaLaFrance
    MariannaLaFrance Member Posts: 777
    edited February 2010

    Sorry for your news. It really sucks to be diagnosed with cancer. I am going to reiterate a couple of points the other ladies have already made, but make sure you take someone with you to your appointments to take notes, because you might not remember it all afterwards. Now's the time for pampering. Schedule a mani-pedi, get a massage and be so good to yourself, because the mind can create a cesspool of worry that your body doesn' t need right now. Hang in there, and this board has proved to be very valuable to me. We didn't pick this, but it picked us, so welcome to the community. Peace to you, and take care.

    MaryAnn

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  • 3monstmama
    3monstmama Member Posts: 1,447
    edited February 2010

    i agree with MariannaHB ---bringing someone is good HOWEVER make sure that it is someone you feel comfortable asking hard questions in front of or be willing to kick them out for a bit.  My husband came on all my doctor visits but the one to the radiation oncologist.  I found I asked more questions without him there.  It wasn't that he was asking lots of questions and intimidating me but I think subconsciously I was restraining from asking hard stuff because I was concerned about his reaction---we have three kids and cancer does make you think about life as a single parent no matter what you do.

    Also pamper yourself in the way you define pampering is a great idea.  For me its been a splurge on really nice yarn and pattern for knitting my first sweater.  A manicure or massage would be awful for me but having that pricy yarn to knit while sitting in the waiting room is a treat.

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  • lmnop35
    lmnop35 Member Posts: 35
    edited February 2010

    I was REALLY scared of the MRI and the results of course. It honestly was not that bad. I'm super claustrophobic. The very thought of it made me freak out. But, here's the good part. They have to run and IV because they need to give you a contrast dye. Therefore, if they are nice, they'll put some Valium in there for you too. You're not asleep, but you will be very relaxed. Also, you have to be face down and your face is in like a massage table pillow, so you have no opportunity to look around and realize that you're enclosed. Best part, it only took about 20 minutes and it's broken up by "you'll hear noise for 2 minutes, then silent for 3". So it's like doing intervals on the treadmill, it goes quick.

    Good Luck and plan to watch a fun movie or something when you get home.

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  • Lovegolf
    Lovegolf Member Posts: 513
    edited February 2010

    Welcome to club you never wanted to join...that said there are so manyof us who have been where you are now and made to the other side.  You will too.  FYI the MRI can give you a headache after it.  No one told me .  Drink lots of fluid after too to help dilute the effect.  BREATHE.  When in doubt take 3 nice long slow breaths.  I recall think I was laid out like Superman in mid-air during MRI.  I walked every golf course I have been on and played golf in my head.  A friend of mine sang X-mas songs to yourself.  Think of what would make you feel relax, walk on a beach ect.  It will make it go faster.  After MRI Drs should be able to give you more information and you can start to make deisions about treatement.  This part, the waiting, is the worst.  When you get a plan and can start moving toward getting through it all you will feel better.

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