Diagnosed today: IDC

Options
wrmbrownie
wrmbrownie Member Posts: 114


I knew it was coming but didn't know which kind.

I have 2.7cm poorly differentiated area. Initially, I was feeling ok because it was ductal, not lobular. Now, I'm realizing that the large size and grade 3 (fast growing, aggressive) may be even scarier.

Mine is ER and PR + and results aren't back yet on HER2. It said there was no evidence of lymphovascular invasion.

I have read about the different kinds of BC and have been lurking on these forums for a couple weeks trying to educate myself. My biopsies were just this past Monday but I knew from reading the mammogram and ultrasounds that it was cancer. Luckily, only one of the biopsies was malignant so it could be worse.

I'm so glad that these message boards exist...  :)

«1

Comments

  • erinm216
    erinm216 Member Posts: 126
    edited January 2015

    Hi Brownie

    Sorry you are part of this group now but if you have to be, this is place for great info and support.

    Sending well wishes your way

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2015

    Hi Brownie - I am also sorry you find yourself here. The diagnosis is devastating and unlike anything most of us have ever experienced. I initially found comfort in joining the surgery sisters for the month I was having surgery. I hope you find a cyber home here and get all the support you need. Someone is here 24/7. Please lean on us. We have been where you are and it is a very scary place. Hugs to you.

  • Nash54
    Nash54 Member Posts: 837
    edited January 2015

    Hi Brownie..sorry you're here but welcome. I too had a grade 3. My onc was not too concerned about it. From what I've read it actually responds well to treatment. Hang in there.

    (((hugs)))

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited January 2015

    wrmbrownie, so sorry you found yourself here, but you've come to the right place for support! We are all different in our DX's and TX's. The fact that it shows no LVI is good news. It's hard to come to terms with, no matter what you are dealing with. Take a trusted, stable person with you to your initial appts. You will find, as you go through the process, that you are much stronger than you think. Best wishes.

  • hummingbirdlover
    hummingbirdlover Member Posts: 421
    edited January 2015

    I'm so sorry you find yourself here! It is very overwhelming in those first days but you just take it one day at a time. My original pathology from biopsy said grade 1 and was changed to grade 3 after surgery. Take notes at appointments and I agree that I found super support from my October surgery sisters group. I wish you all the best. It does get easier once a treatment plan is in place, hang in there, you're not alone

  • Moderators
    Moderators Member Posts: 25,912
    edited January 2015

    Wrmbrownie-

    We want to welcome you to our community here at BCO. We're sorry for what brings you here, but we're so very glad you've found and joined us, and hope you find the support and encouragement you need.

    There's a lot of information in these boards, but many of our newly diagnosed members find it helpful to start here: https://community.breastcancer.org/forum/5/topic/8....

    Please let us know if you need help navigating the forums or have a question, you can reach us via the private message function. We'll be thinking of you!

    The Mods

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2015

    So very sorry that you've had this diagnosis, Wrmbrownie. I, too, knew looking at the imaging that it was probably malignant but still, having it confirmed truly knocked me for a loop. The first few weeks were really rough and I can't imagine it's any different for you or anyone else.

    A few words of advice:

    • if you can record your consults on your smart phone, etc., you will find that very helpful. Take a friend/partner along, too, as well as a notebook of questions.
    • Don't hesitate to ask for some Ativan or Xanax - it can help you get some sleep when your mind just won't let you rest.
    • You'll start getting answers soon, but it may be a while before you have ALL the answers - I felt as though every time we checked one thing off my list, one or two more concerns took its place. This is an emotional roller coaster.
    • Don't panic and feel that you need to make all your decisions right away. Take time to really understand your options, get a second or third opinion if possible, and figure out what YOU will be o.k. with. In most situations you don't have to rush it.
    • Don't let anyone tell you what you should be feeling or how you should deal with this. Lots of people want us to be sweet, strong models of how to deal with adversity. If you have that in yourself, more power to you. However, if you're angry, scared, weak, ticked off - that's FINE.
    • Continue coming here - we've all been down this very rocky road and many of us relied on the support we found here to make it this far. We help each other and will help you, too.
    • Ignore any advice that doesn't meet your needs. :)
    • Don't forget to breathe.


  • April8
    April8 Member Posts: 65
    edited January 2015

    I'm so sorry Brownie-I found out in July I had 2 IDCs-one in each breast-2 different tumors-1 is HER+ and one is ER+ and PR+. I survived Surgery (on the table for 7 hours) and twelve weeks of Chemo. You will be ok. You will be very sad some days and joyful to be alive other days. We don't know what the future holds but who really does at the end of the day when you think about it. The others on this thread have given you great advice. I found it very helpful to bring people to appointments with me. For chemo I did most of the sessions alone bc I would get very tired. Remember that there are many, many women who have breast cancer and the treatment options are growing daily

  • wrmbrownie
    wrmbrownie Member Posts: 114
    edited January 2015


    I had a repeat mammogram yesterday and a repeat ultrasound today. I also had another breast biopsy (benign) and lymph node biopsy (positive.) 

    PR+, ES+ and HER2-

    Still around 2.7 cm, grade 3

    They're suggesting lumpectomy and removal of all lymph nodes above the breast, radiation and then hormonal therapy. After they do a pathology on the tumor and lymph node, we'll decide about chemotherapy.

     

     

  • Nash54
    Nash54 Member Posts: 837
    edited January 2015

    wrnbrownie...looks like your starting to get a plan in place. How are you feeling?

  • wrmbrownie
    wrmbrownie Member Posts: 114
    edited January 2015

    This morning, I'm having a little meltdown.

    They discussed the lymphnodes being removed and possible lymphedema. They said 1 out of 4 women get it and then I looked online and it said mostly overweight or obese people...that's me. I never had any idea of what lymphedema meant or any of the life changes that one has to do regarding that arm!! 

    Of course, the one story I heard was from my friend who had a coworker...(bad ending.) I don't even know how many lymph nodes are on that side  that they are taking out. They said all (and pointed there.)

    Kinda confused and sad this morning. Yesterday was much better...waah! 

  • wrmbrownie
    wrmbrownie Member Posts: 114
    edited January 2015

    My, what a difference a couple of days make? Today, I saw my radiation oncologist who said that he put me at Stage III and that my tumor wasn't as concerning to them as the much larger cluster of lymph nodes. He'll consult with another oncologist and my surgeon and my surgery date will probably be cancelled (in order to start chemo.)

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited January 2015

    wrmbrownie -- I had five months of neoadjuvant chemo, then a lumpectomy and removal of 20 lymph nodes. The good news is that the chemo took care of all of the invasive cancer, including the cancer they detected prior to chemo in the lymph nodes. The other good news is that you can see the chemo working and clearing out the cancer. As for lymphdema, if I get it, I'll find a way of coping with it. I'd rather have lymphedema than cancer.

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited January 2015

    holy smokes Elaine they took out 20 lymph nodes? How are you feeling.

    Brownie I am sorry you've found yourself here. It sounds like you're in good hands. I did not have neoadjuvant chemo, but I think it's a plus that if you do it you get to find out how well the cancer is responding to treatment. For me I will never know. Thinking of you

    Nancy

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited January 2015

    Ha ha, Nancy! Yes TWENTY. All of the Levels 1 and 2 nodes! We all differ in the number of nodes we have; I just happen to be blessed with many nodes. The nurse navigator tried to make me feel better -- "they're the size of green peas, sweetie." Great! So I've had 20 green peas removed from my right arm pit. I'm feeling OK, but one of my sons had a paradoxical reaction to Risperdal and we're in the process of shifting him to Abilify. He's been a BEAST.

  • CarolynAnne
    CarolynAnne Member Posts: 57
    edited January 2015

    Hi ElaineTherese - I am newly diagnosed (1/5/15) and new to the forum. I have IDC, ER +and PR + HER -. I have two swollen axillary LN (seen on ultrasound) just confirmed positive by needle biopsy. I haven't even met with my MO and RO yet to discuss treatment, just with my SO.

    I saw your post and was wondering, if you had chemo and the it took care of the cancer in the lymph nodes, were they able to remove fewer nodes than if you hadn't had neoadjuvant chemo? This LE thing is freaking me out and I was wondering if they can kill the cancer in the lymph nodes, prior to surgery, then why do they still have to do the ALND? Couldn't they just do the SLNB to see to confirm the cancer is gone? I know that getting rid of the cancer is the most important thing, I am so worried about quality of life afterwards with a possible LE arm if they still remove the whole cluster of LN. I know you may not be able to help, but I was wondering if it was a discussion you had with your docs. Thanks!

  • mariag71
    mariag71 Member Posts: 2
    edited February 2015

    I'm new to this, but also was diagnosed with IDC poorly differentiated grade 3 her2+  10/2013 left breast lumpectomy 12/2013 genetic testing negative, was on adromycin, and on my last round added herceptin which weakened my heart, waited about a month once my heart was strong again, and started tamoxifen with herceptin, finished chemo 8/2014 had 39 rounds of radiation, and finished 1/2/2015 will continue with herceptin infusion until may (full year) started very positive but was so afraid, did good, was on zofran for nausea but was bad for me, then compazine which worked a lil better but ativan for me worked the best, helped me with nausea, sleeping,  and anxiety, my treatment has been long, but keeping hopeful. .

  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited February 2015

    Good afternoon Ladies, sounds like treatment plans are getting in place and you are getting ready to stomp all those cancer cells! I am so glad you are all here, lots of great info and it really helps to vent with all of us that get it. I got it, so I get it! I have already done chemo, surgery, and now rads. If I can answer any questions, please ask.

    Game On, have a great week!

  • mariag71
    mariag71 Member Posts: 2
    edited February 2015

    this information is great, wish I would of known about this website since the beginning, thanks for sharing..

  • bw49
    bw49 Member Posts: 36
    edited March 2015

    I am newly diagnosed with idc estrogen pos- they say the tumor is small about 6mm but on mri it says 1.2 cm of up to that- schedualed to have lumpetomy in 2 weeks- I am scared because I dont want chemo-

  • farmerjo
    farmerjo Member Posts: 518
    edited March 2015

    Bw49...welcome! You will find lots of support here. Size of your tumor doesn't mean too much. You have to take it one day at a time. You may be eligible for the Oncotype test... That helps determine if you need chemo or not. You have to be not only ER+ but HER negative. As you can see in my signature block, my tumor was 2.5 and I didn't need chemo. When I was first diagnosed, I made plans for my waist-length hair. I worrried unnecessarily. 

    Just hang in there! 

  • bw49
    bw49 Member Posts: 36
    edited March 2015

    how do you find out if you are her negative what is that?

  • farmerjo
    farmerjo Member Posts: 518
    edited March 2015

    Bw49... You are entitled to your records.  Ask for copies of all reports, especially pathology. The pathology report will tell you ER, PR and HER, in addition to the type and grade of your cancer. Go from there! 

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2015

    Welcome to BCO Bw49, we're glad you found this caring community to help you through this process.

    Read here for steps you can take to feel more in control of the process:

    Test Results and Medical Records, including what to do when you get your results, and how to keep track of your records.

    Getting your test results

    Besides sharing your experiences and learning from other members here at the boards, you may also want to take a look at the Breast Cancer 101 section from the main site, which is designed to help you sort through all of the information on our site to find what is more relevant to you right now.

    Also it relevant to read from our main site reliable information on IDC — Invasive Ductal Carcinoma where you'll learn about symptoms, diagnosis, treatment, etc.

    Possibly of interest too is the Oncotype DX Test

    We hope this helps!

    The Mods

  • bw49
    bw49 Member Posts: 36
    edited March 2015

    did you have a choice for chemo since yours was small and no lymph nodes-

  • farmerjo
    farmerjo Member Posts: 518
    edited March 2015

    Bw49- I was close to the no chemo cut-off. My score showed that getting chemo added a 3.5% benefit to my 10 year survival (that's in addition to the hormonal therapy they prescribe). They would have given it to me if I wanted but they were also ok with me not doing it. The Oncotype score is a kinda personalized cancer recurrence score, if you're eligible. Does that make sense? It can be overwhelming. Your first BS visit will explain everything. The BS usually has a nurse navigator and she's extremely helpful. 

  • bw49
    bw49 Member Posts: 36
    edited March 2015

    thanks- I guess I have to wait until after surgery to see- thanks for your help-

  • bw49
    bw49 Member Posts: 36
    edited March 2015

    Had lumpetomy on Thurs- was not so bad- got a call from the surgeon today, it was 6mm and not in my lymph nodes- good news definately need radiation and a pill will send out for ocno test- I am hoping and praying that it is low and that I dont need chemo- and thoughts!

  • farmerjo
    farmerjo Member Posts: 518
    edited March 2015

    Bw49...good to see you! So far, good news for you! 6mm is pretty small although my BS said size doesn't really matter much anymore.  It was SO hard not to laugh when he said that. Lol. It will be about 2 weeks before you get pathology and Oncotype results. I know it's hard but try and relax...:)

    Go to your profile and fill in your stats so it will show in your signature bar... Also, where you're from. It's really helpful to everyone here! 

    Good luck! 



  • Nash54
    Nash54 Member Posts: 837
    edited March 2015

    bw49....hoping you get a very low oncotype score so your decision is clear cut and not more guessing! Mine was in the dreaded intermediate (24) but I did not have chemo based on the recommendation of my BS.

    Glad the lx is behind you and you can get on with it. Things get so much better once you know what you're dealing with.


    (((hugs)))

Categories