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Topic: final pathology changed after surgery

Forum: IDC (Invasive Ductal Carcinoma) — Just diagnosed, in treatment, or finished treatment for IDC.

Posted on: Mar 10, 2010 07:27AM

zerp wrote:

I originally was diagnosed  with DCIS and Pagets of the nipple, same breast. I had a mastectomy and sentinel lymph node biopsy. Lymph nodes showed no sign of cancer. They found what they are calling infiltrating ductal carcinoma 1.4 cm in the tissue that was removed. Tomorrow I meet with an oncologist about what comes next. I am concerned because my ER and PR are negative, sounds like most women are positive. The report also said, MIB-1 fraction is approximately 30%??? Really don't know what that means! Anyone with a similar situation?  Thanks for reading.

Dx 3/9/2010, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2+
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Mar 10, 2010 08:15AM - edited Mar 10, 2010 08:16AM by irish47

Hi Zerp,

I had a 1.3 IDC tumour but was ER and PR positive.  Do you know your HER status?  If that is positive you will find lots of information on the tripple negative boards.  The best news though is that your lymph nodes are clear. Good luck with your meeting tomorrow!

Dx 1/13/2010, IDC, 1cm, Stage IB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 10, 2010 08:23AM - edited Feb 11, 2011 07:05PM by HeidiToo

delete

" It's not the years in your life, but the life in your years." (Abe Lincoln) Dx 8/11/2009, IDC, 2cm, Stage IIA, Grade 3, ER-/PR-, HER2- Surgery 9/9/2009 Lumpectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 10/26/2009 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/2/2010 Breast, Lymph nodes
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Mar 10, 2010 02:33PM Ezscriiibe wrote:

It's not unusual for the pathology to change after the surgery. Mine did.

Best of luck to you going forward.

Michele ~ mets to liver; biopsy revealed that the cancer has mutated from ER+/PR+ to ER/PR - Dx 1/7/2010, IDC, 2cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2-
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Mar 10, 2010 02:41PM navygirl wrote:

I think Irish means if your HER status is NEGATIVE you will find lots of information on the triple negative boards...

life is short, play hard
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Mar 10, 2010 02:49PM irish47 wrote:

Apologies, yes that is what i meant.

Dx 1/13/2010, IDC, 1cm, Stage IB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 11, 2010 05:29AM - edited Mar 11, 2010 05:29AM by Marion

Just like a lot of you, my lymph nodes pathology results changed as well.

It went from being negative (lymph nodes had no cancer) to positive (a 0.8 mm micro-met in one sentinel node). I had to go back for surgery, for an axillary lymph node dissection.

The hardest part was mentally. Going from feeling relieved (no cancer in lymph nodes) to realizing that lymph node involvement affected my survival rate. The worst part is that nobody had warned us that pathology results could change. The surgeon was sure there was no cancer in the lymph nodes.

Dx 7/23/2009, IDC, 1cm, Stage IIA, Grade 1, 1/14 nodes, ER+/PR+, HER2-
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Mar 12, 2010 04:47AM zerp wrote:

Well know now, chemo is in my future. With my er and pr negative, drugs were not a option. I worry about what I will  and won't be up for during chemo. I'm used to handling pretty much everything around the home, family, pets, yard and yes I have my own tools. So I'm not used to waiting for help if I can jump in and do it myself. This right now is probably the hardest thing to accept that I can't take care of my family the way I'm used to. I know they will survive but I still have guilt, this after all has been my job.

Dx 3/9/2010, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2+
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Apr 10, 2010 04:39PM lauriez wrote:

Hi Marion-I was dx with idc on 3/12. Since that time I have had an MRI guided biopsy, and more recently, a SNB. The MRI biopsy showed many areas of DCIS in addition to the idc, so it looks like I'll be having a mastectomy. I had the SNB on 4/7, which showed no CA-two were biopsied. I meet with my surgeon on Monday. I'm hoping she will have talked with the Onc. and rad onc to see what the plan is regarding chemo and rads. My cancer is grade 3. My question is regarding the change in pathology after surgery. I am already writing down my quesitons for the surgeon 1) how do you know if you got all of the sentinel nodes? 2) will you still take some axillary nodes at the time of the mastectomy? What was your experience with lumph node biospy? Thanks, Laurie

Laurie Age 48 left mx with TE 5/7/2010, port placed 6/2/2010, Dose Dense A/C every 2 weeks x4, then Taxol weekly x12. Tamoxifen x 5 years Dx 3/12/2010, IDC, 3cm, Stage II, Grade 2, 0/12 nodes, ER+/PR+, HER2-
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Apr 10, 2010 05:10PM - edited Apr 10, 2010 05:11PM by M360

Lauriez,  I'm sitting her full of stitches after two surgeries in two weeks.  I was originally diagnosed on 12/3 of IDC they said at that time it was only 1cm, so it was going to be take out the tumor and no lymph glands were involved there was a waiting list and I couldn't have my surgery until March.  No one seemed that it was a hurry.  Then in the end of February things changed.  I was told because the tumor was against my back wall I would have to have a mastectomy. I said fine. Then was told I couldn't have reconstruction because of autoimmune problems.  I was told I wouldn't be needing Chemo etc.  Well that was all wrong.  When they opened me up my tumor had grown to 3.9 and it had metastasized to my lymph glands. So they took out ten.  Then because so many had cancer they said auxiliary node dissection.  More had cancer.  Now they say Chemo etc needs to be started buy not until an infection that started in my chest heals.  I've been on IV antibiotics every three hours for two week and then 3,000 mg three times a week for two weeks starting this week.  What I found is that these procedures have to be done if you have positive lymph glands.  I read up all I could and studied the procedure.  However, they took out all my chest muscles and all muscle under my arm etc.  No one said they were going to take out that much, but surgeon said it was necessary.  I've realized that they really don't know the whole story til they take off the breast or cut out tumor, and how many lymph glands come back positive or path reports.   It's a step by step procedure to see how many and then how aggressive they need to be.  I've read printed out copies of each procedure but it doesn't really prepare you.  Each one of us is different and we all deal with it differently.  I'm wondering the same questions that you have.   How do they know they have them all.  Since surgeries I have  lymph glands on my other side the have grown to the size of quarters.  I worry that maybe some gene moved into other glands in my body.  That is why Chemo is so important, and also MRI and continued follow ups.  What I thought was going to be a couple of months is now going to be treatment for over a year.  So all you can do is be informed ask questions, but I don't think they always have the answers.  They take it a step at a time.  I'm someone who's pathology report changed so much in just three months.  Cancer is a crap shoot. It has a mind and works in it's own way, it's finding the right mixture and right treatment so that each one of us can survive.  Good luck to you.

Dx 12/3/2009, IDC, 3cm, Stage IIIB, Grade 3, 6/12 nodes, ER+/PR+ Surgery 3/25/2010 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Chemotherapy 4/13/2010 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 10/26/2010 Femara (letrozole) Dx 12/12/2012, IDC, Stage IV, Grade 3, mets, ER+/PR+ Dx 1/29/2013, IDC, 2cm, Stage IV, Grade 3, 6/9 nodes Dx 2/16/2013, IDC, Stage IV, Grade 3, mets, ER+/PR+ Hormonal Therapy 2/27/2013 Faslodex (fulvestrant) Chemotherapy 4/1/2013 Cytoxan (cyclophosphamide), Xeloda (capecitabine) Chemotherapy 6/18/2014 Doxil (doxorubicin) Chemotherapy 9/24/2014 Abraxane (albumin-bound or nab-paclitaxel)
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Apr 10, 2010 05:48PM lauriez wrote:

M360-thank you for sharing your story. I'm so sorry that things progressed so rapidly for you. It must be horrible to deal with all of the muscle loss you have described. I'm so sad for you and hope that you recover quickly from your surgery.

I've had a gut feeling all along since my diagnosis (not before), and I've not been wrong. I should be elated at the neg node status, but I'm not. I'm not a pessimistic or negative person, I just don't trust it. Well I'll listen to what they have to say on Monday and go from there. Thanks again for your response.

Laurie Age 48 left mx with TE 5/7/2010, port placed 6/2/2010, Dose Dense A/C every 2 weeks x4, then Taxol weekly x12. Tamoxifen x 5 years Dx 3/12/2010, IDC, 3cm, Stage II, Grade 2, 0/12 nodes, ER+/PR+, HER2-
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Apr 17, 2010 10:25AM - edited Apr 17, 2010 10:26AM by Marion

Hello,

I just found out yesterday, after asking questions about my "nuclear score", that in fact, my tumor was grade 2 and not grade 1. I was diagnosed in July 2009, finished chemo in Nov. 2009, and was only told NOW !! And only because I asked for my pathology reports, studied them, and asked questions!!!

My oncologist, who I like and has a good reputation, told me that the grade did not matter, that the Oncotype score was more important. He also said I should not worry, that the grade was an old way at looking at a tumor....

Has anyone gone from grade 1 to grade 2?

This is the 2nd time my pathology report changed, maybe that's why I am kind of distraught.

Dx 7/23/2009, IDC, 1cm, Stage IIA, Grade 1, 1/14 nodes, ER+/PR+, HER2-
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Apr 21, 2010 12:20PM - edited Apr 21, 2010 12:21PM by LINDAGARSIDE

Hi Marion, well, I'm certainly no doctor but my understanding of the significance of knowing the "Grade" of cancer is to know three important aspects of your particular tumor: 1) the frequency of cell mitosis (rate of cell division),  2) the tubule formation (percentage of cancer composed of tubular structures, and 3) the nuclear pleomorphism (change in the cell size and uniformity). 

Each of these features or categories is assigned a score ranging from 1 to 3 (a lower score is optimum). 

I scored a 2 in Tubule Formation, a 1 in Nuclear Pleomorphism and a 2 in Mitosis count.  My total therefore was a 5.  A tumor with a final sum of 3, 4 or 5 is considered a Grade 1 tumor (or "well-differentiated").  A sum of 6 or 7 is considered a Grade 2 tumor ( or "moderately-differentiated") and a sum of 8 or 9 is a Grade 3 tumor ( or "poorly-differentiated").  It sounds like your tumor showed a sum of 6 or 7.  It would be interesting to know the breakdown.  Do you have your pathology report?  It should show the breakdown for you.

Lower grade tumors have the best prognosis (generally speaking) and can be treated with a less aggressive surgery and medication.  Higher grade tumors are usually treated with more aggressive surgery, radiation and drugs with worse adverse effects.

As I said, I'm not a doctor and certainly don't know all that much...only what I've read and studied since being diagnosed with breast cancer myself, in November 2009.  I work as a policy analyst for the government so I think it is natural for me to like to get into the boring data/details though.  LOL.

I've not heard before that the ONC score is more important than the grade.  That is news to me...others???

Linda Dx 12/17/2009, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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May 5, 2010 01:40PM - edited May 5, 2010 01:43PM by yuchick

I was always jelous of US patients who were told everything after only initial core needly biopsy of the tumor.  Up here in Canada, they don't grade or stage or give hormone receptors until they take everything out and fine splice and dice a box full of your parts for 2 weeks.  Imagine the wait.  The lymph nodes can also throw you in the next stage, as far as I was explained.  I didn't know how many were effected exactly, like some of you, until they were all out, but also how they were effected seems to be important to grading of the cancer.  An International oncological fellow of from France, visiting and working with oncologist I was assigned to,  started my whole initial appoitment by telling me that the wrong lump was cancerous.  (I had double lumpectomy, wone was cancer, and smaller one wasn't)  I had to send him back to re-read my file to double check.  He also had something to say about the way the cellular wall of the third lymph node (the malignant node discovered positive for micro mets only after auxillary node biopsy) was broken by the cancer cells.  I also made him go back and double check (of course, not believing that he read everything right), because one would think that my surgeon would have mentioned something like that on the post-op consultation.  Bottom line, ask questions, don't leave, bring a friend with good concetration and capacity to remember things.  I personally am too "flegmatic" at these appoitments, and don't feel like probing in too much detail-- the "I want outta here syndrome".  Having said that, I will ask about that third node on my next appoitment, and for the complete pathology report.  Usually, partients are not given the report here.  We have to push for it.

Dx 2/25/2010, IDC, 1cm, Stage II, Grade 3, 3/19 nodes, ER-/PR-, HER2- Surgery 3/30/2010 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Chemotherapy 5/16/2010 Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Radiation Therapy 10/14/2010 Breast, Lymph nodes
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May 5, 2010 01:52PM - edited May 5, 2010 01:54PM by del15

yuchick 

Up here in Canada, they don't grade or stage or give hormone receptors until they take everything out and fine splice and dice a box full of your parts for 2 weeks.

Well... My wife was told everything (Grade, Stage, Hormones) after the needle biopsy, in PMH, Toronto, Canada. The grade changed after the mastectomy, though.

And she gets all the copies of the reports no problem.

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May 5, 2010 05:42PM msmpatty wrote:

Yuchick - Like many others, my experience with getting initial path reports is that things always seem to change.   The size estimate of my tumor from the biopsy was different from the actual tumor removed.   The first check of the SNB was negative, further analysis showed both SN were positive for cancer cells.  So I went from being told no chemo, to having the whole spectrum of treatment including 24-weeks of chemo!   My point?   Maybe it is best to endure the waiting for final path results rather than the roller coaster of ups and downs when you get bits and pieces along the way.  Either way...it's a drag!

Patty

Dx 5/13/2009, IDC, Right, 2cm, Stage IIB, Grade 1, 2/13 nodes, ER+/PR+, HER2- Surgery 6/18/2009 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 8/24/2009 AC + T (Taxol) Radiation Therapy 2/23/2010 Whole-breast: Breast Hormonal Therapy 4/5/2010 Femara (letrozole) Dx 10/8/2020, IDC, Left, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 10/22/2020 Lumpectomy: Left Radiation Therapy 12/17/2020 Whole-breast: Breast
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May 11, 2010 10:59AM koshka1 wrote:

Hi Yuchik!

I think Canada's protocol for giving the complete story after surgery is really important. 

I am Canadian too...and I had 3 biopsies and each one told a different story.  I had a needle biopsy that said b9, I had a stereotactic that said ADH or possible low grade DCIS...then I had a fine wire and a chunk taken out and lo and behold...DCIS and 2 tiny invasives.

It is really hard to establich a complete picture on just a biopsy as sometimes they just dont get enough tissue.

Waiting for all these answers is the worse part - seriously, i lost my mind (and probably still have not found it).

Anyway.....we should be greatful though that when they do find a hint of something that they keep pursuiting it...this is our best way of beating this darn thing!

Hugs to all...................KOSH

Dx 12/2007, IDC, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2-

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