High Grade Ductal Carcinoma

Carriek30
Carriek30 Member Posts: 80
edited January 2015 in Just Diagnosed

Hi. I'm 44 yrs and was just told by my primary dr that I have high grade ductal carcinoma. i meet with the surgeon on Tuesday this week. I'm nervous and scared. Not sure what this means. Is it cancerous? Path report says Negative for invasive carcinoma in available tissue. Will they test more to see if the tissue is invaded? What should I expect with the breast surgeon on Tuesday? Path report also says "consists of multiple fibrotatty cores ranging from 0.8 to 4.0 cm"


Any help on insight is extremely appreciated.

Carrie

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2014

    HI Carriek! We wanted to welcome you to Breastcancer.org and tell you that while we're sorry for what brings you here, we're glad you found our community.

    In our main site you'll find reliable information on DCIS — Ductal Carcinoma In Situ (in situ this means non invasive) that will help you better understand your diagnosis.

    Here in the discussion boards, there is also advice and personal experiences from other community members, like in the topic called: A layperson's guide to DCIS

    Hope this helps!

    The Mods


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  • Bippy625
    Bippy625 Member Posts: 890
    edited December 2014
    • hi Carrie,

    I'm sorry that you've been diagnosed but I'm glad that you're here. It's awful at first, and overwhelming. As you go along it will get better. What you need right now is information. it is very good that your meeting with your surgeon tomorrow, he should be able to provide some answers. Easy for me to say, but try not to be terrified about the words high-grade. My general doctor told me that my cancer was invasive and aggressive and I almost threw up in his face. Turns out even though I do have an aggressive form, it responds very well to treatment.

    Next steps are to meet with the oncologist, and determine what, if any, chemo you may need. Some girls get surgery before chemo and some after. Some girls don't need chemo. I've completed chemo and just had a bilateral mastectomy Wednesday. Your breast surgeon may or may not talk to you about inserting a port for chemo.I had a port installed and was happy with my decision to do it.

    Do you know your HER status? That's very important to determine whether your candidate for chemo. Do your research with the links provided here, not anywhere else. It's up to date here and a lot of places on the Internet will just scare you with an accurate an outdated information. This breast-cancer thing has a language all its own, and you'll get very familiar with all the terms soon. This forum save me from going crazy during this process. I can't recommend it enough! Wonderful women will be along soon

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  • Ariom
    Ariom Member Posts: 6,197
    edited December 2014

    Hello Carrie, sorry, it is quiet here at the moment, but I wanted to say hello. You are in the worst place right now, the waiting is really brutal, we all understand how you're feeling, It is just awful.

    I was diagnosed with grade 3, or high grade DCIS, which is Ductal Carcinoma In Situ, . Your pathology from the biopsy, is saying there is no invasive component in the core samples, which is a good thing! DCIS is non invasive, pre cancer, which is confined to the milk ducts.

    What happens now, is you see the surgeon for the area to be removed and then you'll get a final pathology report. They will be looking for any invasive component or any other changes. The surgeon will talk to you about your options, at your appointment on Tuesday, Can you take someone with you to the appointment? If you have to go alone, either record or take notes, so you can remember as much as possible. It can be a bit overwhelming. Write down any questions you may have for the surgeon, it's easy to go blank when you are in the appointment and only remember what you wanted to ask after you've left the office.

    The link the Mods have given you to the DCIS information is really worth looking at. I actually printed it out and gave copies to my friends and family so they would all understand, what was going on with me.

    Try to take it easy and not over stress, easier said than done, I know, but the worry won't change the outcome. Stay away from Dr Google.it can scare you with outdated information. if you want to get information, read it here and ask questions.

    I am so sorry you've found yourself here, it is tough at holiday time because you have to wait even longer, to get everything going. I had my surgery right before Christmas, 2 years ago and had to wait well into the New Year for my final Pathology results.

    Take some deep breaths and let us know how you're getting on..

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  • Ariom
    Ariom Member Posts: 6,197
    edited December 2014

    Carrie and Bippy, just thought I would jump in here to say, if your diagnosis remains as Pure DCIS, even high grade, you won't have to be concerned about Chemo, it isn't ever indicated, for Pure DCIS.

    Check the link supplied by the Mods for more information.

    Bippy has a very different Dx which required her to have chemo.

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  • Carriek30
    Carriek30 Member Posts: 80
    edited December 2014

    Thank you ladies. I really appreciate your comments. I'm worried, however not too much. Just take it as it is and take care of it. My worry is that they will continue to find more wrong with my breasts. All along the way it was suppose to be "normal" "routine" to have another mammogram. Not DCIS. Which I'm thankful it is only that and not much worse. However, I'm afraid it is worse and they will tell me Tuesday. I'll check out the links. thank you. What type of questions should I be asking the Breast Surgeon tommorrow?

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  • Ariom
    Ariom Member Posts: 6,197
    edited December 2014

    Hi, Carrie, that's what we all fear when we are at the point you are now, that there is going to be more, but the truth is, very often, sfter surgery, nothing changes from the biopsy result. I was terrified of invasion because I knew my DCIS was missed at my previous Mammogram, mine was small, but it was high grade.

    You will get information about your surgical options a this appointment, usually the standard is lumpectomy and radiotherapy for DCIS that isn't small and low grade. Some, like me, decide to have a Mastectomy, for various reasons, but unless the DCIS is extensive, that is not something you really need to consider. You may want to ask about recovery times, if you'll need much time off work, things along those lines. This appointment will be more about what will happen next for you.

    As I mentioned, try to take someone with you if possible. I wish you all the very best, let us know how you get on. ((((((hugs)))))

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  • Carriek30
    Carriek30 Member Posts: 80
    edited December 2014

    Hi, I met with the surgeon yesterday. He said DCIS Stage 0. Very good news. I will be having an MRI on 1/14 and Genetic testing on 1/16. Due to my age they are testing for genetic markers. Surgery scheduled for 1/27. At that time he will know if it's farther along. Right now we are going with what we know. Will do a lumpectomy with 30 rounds of radiation. If there is more cancer or Genetic Testing comes back positive we will look at other options. Merry Christmas and thanks for your support. ((((hugs to you all)))


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  • Ariom
    Ariom Member Posts: 6,197
    edited December 2014

    Carrie, that's such great news for you! Merry Christmas!

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  • muzakmom1
    muzakmom1 Member Posts: 41
    edited January 2015

    Carriek30

    Sorry about your diagnosis. I can tell you the DCIS boars is the best place for you. DCIS...is a unique pre-cancer treated differently than other bc. I found it calming to find a group of people who could identify with my diagnosis.

    I'm grateful for this group....i survived my DMX and will have my exchange surgery on 1/28.

    Please take someone with you. My husband went with me everywhere except to get the MRI. ...no need to I'll in the waiting room. We made it a point to stop by Chick Fila or Starbucks and debrief after most appointments.

    I also found my case manager at BCBS to be helpful with anything. And the Breast Cancer Navigators at our hospital are on call 24/7. They were medical angels.

    Prayers of peace and comfort


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  • Carriek30
    Carriek30 Member Posts: 80
    edited January 2015

    Thank you muzakmom1. I'm doing ok right now. Just a wait and see. MRI on the 14th and Genetic Counseling on the 16th. I just so torn on what treatment to do. Lumpectomy with Radiation is what I'm scheduled for right now on the 27th. I say if the MRI and Genetic come back different I'll do the DMX. However, that scares the hell out of me too. I need to know percentages of recurrence, am I making the right decisions. IDK. I feel like I am.


    I just read my earlier posts... hahaha same exact things. Can you tell what I'm always thinking about. hahah Dear hubby will go with me to counseling and surgery. I agree about no the MRI. I did go by myself to give blood for genetic test and I just about cried. I was expecting a lab, but no, it was an oncology room. It freaked me out a bit inside.


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  • nmh35
    nmh35 Member Posts: 96
    edited January 2015

    Hi Carrie-I'm 35 and was also diagnosed with high grade DCIS 3 weeks ago. Once I met with my surgeon he told me it was my decision for treatment but he thought I would be ok with lumpectomy and radiation. I had the genetic testing and that definitely would have been a big decision maker for me, but it actually came back negative. Besides the found DCIS, there was also an area of calcifications they were watching and I asked them if we could have that biopsied also and as it turned out, that was DCIS too. So now I am no longer a candidate for a lumpectomy because the 2 areas are far apart. I'm scheduled for a bilateral mastectomy in February. I know how scary this is and its such s hard time of year. I'm here to talk if I you need to!

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  • Carriek30
    Carriek30 Member Posts: 80
    edited January 2015

    Hi Nicole. Sounds like my story. I'm just waiting for the test results. I'm amazed at all the same stories on this board. We are definitely not alone. Did you have an MRI?

    Side Note: I LOVE Long Island. I always say I should have been born on the East Coast instead of the West. ;-)

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  • nmh35
    nmh35 Member Posts: 96
    edited January 2015

    Last year I had atypical Ductal hyperplasia and this year the DCIS, and both were actually only found by MRI. Luckily MRI was recommended by my radiologist for regular screenings because I have such dense breasts. Otherwise I would have never known.

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  • Carriek30
    Carriek30 Member Posts: 80
    edited January 2015

    Ladies, I'm suppose to be getting my mothly cycle right now. I think with all my anxiousness - it's going to be late. Hubby and I have a fun wedding to attend on Saturday. Talk about being bummed! Sorry if thats TMI. Just another bummer in January. lol

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  • Akitagirl
    Akitagirl Member Posts: 142
    edited January 2015

    Hi Carrie,

    Just think positive...maybe it will start on Sunday! :-)

    I am so very sorry you have to join this discussion board, but you will not find a better, more loving group of understanding ladies anywhere! Let us know how things turn out.

    All my best,

    Akitagirl

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  • trailrose
    trailrose Member Posts: 219
    edited January 2015

    Carriek30- Best of luck today with your MRI. I am 43 yrs old and diagnosed with High grade DCIS. Went through genetic testing (which came back neg. except for a variant in the MSH2 gene) they told me to keep this variant in the back of my mind as it doesn't necessarily mean I have it. Found out yesterday they will test both sides of Sentinel nodes because of it when I have my BMX on Jan. 20th. Thought I would only have to have the DCIS affected side tested! Yesterday was pre-op and now it's the countdown until surgery. Hang in there and try to keep your routines as normal as possible. I'll send positive thoughts your way on Jan. 27th!

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  • Carriek30
    Carriek30 Member Posts: 80
    edited January 2015

    Trailrose - thank you so much. I didn't realize this would be such a big deal to me today. I've been teary eyed all morning. I'm tired of being a big girl. hahaha

    My test also came back negative (received the news and my cycle in the same day. Woo Hoo) I've never heard of MSH2. hhmmm

    good luck on your bmx.

    positive thoughts your way as well!

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  • trailrose
    trailrose Member Posts: 219
    edited January 2015

    Carriek30- Thank you for the positive thoughts! I totally understand the trying to be a big girl about all of this. Most of the time I'm super positive but then oh my the crying comes on and it's a sob fest! Keep me posted on your results.

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  • Carriek30
    Carriek30 Member Posts: 80
    edited January 2015

    Still Waiting for MRI results.... Waiting sucks.

    I had a crying fit this morning. A pitty party for the breaks in my car, the plumbing in our home, the ants in the kitchen, and the waiting. I'm good now. Hubby is the best. Just taking one thing at a time. Plumber is coming, car in the shop, and the ants have been sprayed.

    Happy Friday!!

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  • Ariom
    Ariom Member Posts: 6,197
    edited January 2015

    Oh Carriek, hugs to you! The waiting is just so brutal and frustrating and it does make everything else feel so much worse. I am so sorry you're going through this. I hope you get your results today!

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  • trailrose
    trailrose Member Posts: 219
    edited January 2015

    Carriek- It's so hard to wait! You just don't know what to expect and the emotions are so strong. Good to hear you have a sweet and supportive husband. We are hear for you and understand.

    Ariom- I love to hear your comments! You have a presence and wisdom that can't be described. Like a fairy godmother!

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  • Ariom
    Ariom Member Posts: 6,197
    edited January 2015

    Aww Trailrose.. thank you! Wow, I wish I had a fairy wand I could wave over all of us and whoosh this all away!

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  • Carriek30
    Carriek30 Member Posts: 80
    edited January 2015

    Update: MRI shows no new growth in original DCIS spot. and no abnormal findings in other breast. So good news.

    Lumpectomy here I come. 1/27

    Trailrose - hope you are feelilng good right now.

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  • Ariom
    Ariom Member Posts: 6,197
    edited January 2015

    All the very best to you Carriek, not too much longer now and you'll be on this side of the surgery and moving forward!

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