DCIS - or NOT is the ? today

hondagirl Member Posts: 2
edited March 2014 in Breast Cancer #1
Well, first I want to thank you all for the kind thoughts after I made my first post-Newly Diagnosed with DCIS. I have since had my MRI, and talked with a radiologist. She told me it was DCIS, gave me the basic options of surgery w/ radiation, lypmh nodes testing and so on. Today I went to another hospital in my area, Robert Packer in Sayre PA, and spoke with another surgeon for a 2nd opinion. I took all my mammogram pics w/ me, along with ultrasound pics, MRI results and my actual pathology slides. After talking with the surgeon, he gave me his treatment suggestions, and set me up with 3 other appointments this week, and a tentative surgery date next Wed 10/3. A few hours later, I got a call back from him, telling me after their pathology dept looked at my slides, they are not so sure I have cancer. They said it may be Atypia, but they're not sure. Now I'm going to see the doctor on Thursday to talk about this, and possibly having another biopsy on Friday, where he would prefer to remove the whole lesion so they can test it, basically a lumpectomy w/out the lymph node testing. Although this comes as possibly good news, I have still found myself in somewhat of a cloud today. Now instead of being completely overjoyed, I am feeling cautious, nervous about the testing whether it was good or bad, which place was right and which one wrong...I'm nervous about knowing for sure what I'm dealing with, and if the further teting is correct. The first pathology report came back as the DCIS being ER+/PR+, but if I hve this Atypia, is that ER+/PR+ effected as well, and if not where did that diagnoses come from ?! Anyways, I am going to remain cautiously happy, but prepared for anything else that may come of this. Thank you for listening to me again ! My thoughts and prayers are with everyone else here.


  • KathiM
    KathiM Member Posts: 8,028 Member
    Good for you for following thru! My BC didn't present as cancer, either. 11 years I had that lump, mammo'ed every year. PLEASE, if there is a chance AT ALL...have it REMOVED! I was given that option 2 years before my diagnosis, and I was more concerned about the scar than my health, so I left it. Who knows? If I would have had it removed then, it maybe would only have been in the lump, and I could have avoided chemo!

    My nodes did not present as being involved, until the lumpectomy surgery, and the frozen section. There was no one more surprised than the breast cancer specialist...unlike you, at this point, my invasive ductal carcinoma had already been dx'd for sure...interesting on that, tho...75% of the biopsy was DCIS, 25% invasive...humm....could it be that part of the stuff biopsied was like this for you?...

    For me, I regret that I didn't listen 2 years earlier..."If in doubt, cut it out...". Not that I am not grateful for the recovery I have had, but my left lung is permanently scarred from the radiation, my left arm is less that 100% because of the secondary set of nodes mandatorily removed, after the sentinel nodes were found to be involved.

    Sorry, this may be TMI...but that is my story....

    Hugs, kathi
  • jackiemanz
    jackiemanz Member Posts: 85
    I hate to this but I agree with KathiM when in doubt take it out.

    When I was first disnosed with my LCIS at first they were saying it was Stage 1 then the surgeon got others to look at my records and came back with it being precancer. So they gave me the option of waiting or going ahead with having a bilateral mastectomy. I opt with the bilateral cause I don't think I could have handled knowing that I still had it in me but you are the one that needs to make the best decision for you.

    Thinking of ya.
  • seof
    seof Member Posts: 819 Member
    Decisions, decisions, decisions! You will have to be the one to make them, but I lean toward the same opinion as K and J before me...take it out. It is unsettling to get different information, though. Keep after the doctors and keep on asking questions till you feel as comfortable as it is possible to feel with the decision you make.

    Stay in touch, seof
  • Susan956
    Susan956 Member Posts: 510
    Hey Honda Girl,
    I found the time before I could get a clear diagnosis and pathforward plan to be the most anxious time for me... After I had a clear path the battle was on and the beast was on the run. So try to take it easy on yourself but keep probing until you get consistent answers. The lumpectomy to get the whole lesion out doesn't seem like a bad answer. I had a lumpectomy.and those scars are really not too bad and if it can help you avoid future Chemo & radiation you will be way ahead of the game.

    Take care... and know that you have many prayers hoping for great results as you go forward...

    God Bless...

  • ladybluepgh
    ladybluepgh Member Posts: 76
    Hi hondagirl...I have to agree with the others who gave their opinion here...get it out of there..i had what they called a precancer 9 years ago...lumpectomy and rad...now its back in the same breast close to the same spot...had a mastectomy sept 13..wondering if i should have had both removed...I believe you should follow your heart ..God will guide you...take care
  • cabbott
    cabbott Member Posts: 1,039 Member

    Hi hondagirl...I have to agree with the others who gave their opinion here...get it out of there..i had what they called a precancer 9 years ago...lumpectomy and rad...now its back in the same breast close to the same spot...had a mastectomy sept 13..wondering if i should have had both removed...I believe you should follow your heart ..God will guide you...take care

    Yipes! Your case sounds almost like what happened to me about 5 years ago. The path reports didn't quite agree that I had or didn't have cancer and I found myself having to make a lot of decisions without really understanding the subject. Fortunately my general surgeon was well-read and eventually we ended up with a definitive diagnosis. At one point, like you, the path reports said DCIS but other pathologists said Atypia hyperplasia. My surgeon pressed me to consider a lumpectomy just to be sure. It seemed like overkill to me at the time to have a major operation--a cancer operation--when the path reports said I didn't have anything invasive but I wanted to be sure since cancer is serious stuff. (My husband told me that the doctors just wanted to go on vacation and get me to pay for it. He was not very supportive at the time, but it was his way of coping.) Unfortunately, the lumpectomy (and an excisional biopsy done at the same time) were definitive for the invasive stuff. It was only much later that I learned that in over 60% of biopsies where atypical hyperplasia shows up, invasive cancer IS hiding nearby. Plain atypica is not as ominous. A bigger tissue sample like a lumpectomy often finds the nasty stuff that was missed during the biopsy in cases of atypica hyperplasia and that's what I had. I ended up with two spots of cancer, but both were caught early. My cancer was ER+ and PR+ and so small that only hormone control (tamoxifen followed by exemestane) was necessary. Your story may be different than mine, but you will have to remove the spot to look at it under a microscope. It is scary to get a diagnosis of cancer, but it is much worse to miss it. If the path report says atypical hyperplasia, remove the lesion and let them explore what it is thoroughly. At the worst you will have a line on your breast proving that you don't take chances with your life. But if there is a problem, you will catch it as early as possible. And if it just atypical cells, see the best breast oncological center you can travel to and ask their opinion on what those cells are. They have the most experience and sometimes those cells are hard to read. Good luck!