We are 224,930 members in 82 forums discussing 158,020 topics.

Help with Abbreviations

Topic: Who had Dcis High Grade and don't have reccurence?

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Nov 11, 2019 01:42PM

Befreindly wrote:

Hi to everyone

I had my lumpectomy on Dcis at 2016.It was Grade 3 with Comedo necrosis,Pr+,Er+ .I took Radiation therapy and I am taking Tamoxifen now.Who had dcis Grade 3 and still don't have reccurence?




Log in to post a reply

Page 1 of 1 (28 results)

Posts 1 - 28 (28 total)

Log in to post a reply

Nov 11, 2019 02:01PM Palesa2018 wrote:

Looking forward to seeing responses. While I had 8mm IDC, I had extensive DCIS Grade 3 with Comedo necrosis so I often wonder if they got everything with the mastectomy.

All the best

Dx 6/7/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 6/12/2018 Lymph node removal: Sentinel Surgery 7/9/2018 Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 8/9/2018 Hormonal Therapy 9/12/2018 Zoladex (goserelin) Radiation Therapy 9/16/2018 Whole-breast: Breast, Chest wall Hormonal Therapy 11/4/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Nov 11, 2019 02:39PM TB90 wrote:

Palesa2018: Your pathology report following your Mx will report all margins. If they are all clean, then you can feel pretty assured that everything was surgically removed. As for responses to the original post, there should be lots of posts as the vast majority never recur.

Dx 11/28/2013, DCIS, Grade 2 Surgery 12/18/2013 Mastectomy: Left Radiation Therapy 2/20/2014 Breast
Log in to post a reply

Nov 11, 2019 03:13PM Beesie wrote:

Befreindly, I had a MX so it's not the same as your situation. I had over 7cm of mostly grade 3 DCIS (a bit of grade 2 was thrown into the mix) with comedonecrosis, and I also had a 1mm microinvasion of IDC. I had one narrow margin of 1mm at the skin. No rads, no Tamox, just the MX. That was 14 years ago. No recurrence.

TB90 is right that most people do not recur, however I suspect you may not get a lot of answers because most people leave the discussion board once their treatment is done and we never hear from them again - which usually means that they are doing fine and have not had a recurrence. I don't think there are a lot of DCIS old-timers hanging around here these days.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Nov 11, 2019 03:20PM thisiknow wrote:

Can anyone explain what 'High Grade' means in regard to DCIS?



Age 72 @dx - Oncotype 4 Dx 8/2019, DCIS/IDC, Both breasts, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Radiation Therapy 10/28/2019 Whole-breast: Breast Surgery Lumpectomy: Left, Right; Lymph node removal: Sentinel
Log in to post a reply

Nov 11, 2019 03:24PM - edited Nov 19, 2019 07:22AM by Moderators

Dear Befriendly,

Welcome to the BCO community. We are sorry for your diagnosis but glad that you reached out. It looks like you have already received a number of responses. We hope that you will find the support and help that you need here. Let us know if we can be of help.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
Log in to post a reply

Nov 11, 2019 04:01PM MinusTwo wrote:

Like Beesie, my stats don't exactly fit. I had a BMX for DCIS with clear margins & clean sentinal nodes. No other treatment deemed necessary. Two years later I had a local recurrence to a lymph node. You didn't specify, but I was HER2+, though ER/PR negative, so that may have driven the bus.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
Log in to post a reply

Nov 11, 2019 04:40PM Beesie wrote:

thisiknow, high grade for DCIS means grade 3.

MinusTwo, when you had the recurrence, was invasive cancer found in the breast area (i.e. it was a local recurrence that developed into IDC and spread into a node) or was it only the node that was affected, which would be more unusual? Of course after a BMX for DCIS, either of those situations would be rare.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Nov 11, 2019 05:32PM MinusTwo wrote:

No the breasts were gone and I'd had implants in place for two years. I found a lump just under my collar bone the week before my two year MO visit. The docs were all incredulous, but hypothesized that it must have been a rogue cell that escaped in spite of all the clean results. The new biopsy showed IDC and HER2+, but only one node ended up positive when they did the ALND. Unfortunately when I had my original BMX, it wasn't common to test DCIS for HER2. Maybe they still don't, but I would have pushed if I'd have known. And of course oncotype testing wasn't approved at that time either outside of the trial. Que Sera...

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
Log in to post a reply

Nov 11, 2019 06:17PM Beesie wrote:

Interesting. And thanks for the info. Even with breasts gone, 1%-2% still get a local recurrence, either against the chest wall or against the skin. There's always some small amount of breast tissue left somewhere.

I wonder if there might have been an occult invasive cancer at the time of your original diagnosis? With all the breast tissue that has to be analysed after a BMX, it would be possible to miss something really tiny. That's usually what's thought to have happened when someone with DCIS is found to have a positive node. Well, either that or a misplaced cell from a surgical instrument, but wouldn't explain your case. Your situation is certainly rare but there is no accounting for some of the strange things that cancer cells can do.

Neither my DCIS nor my microinvasion were tested for HER2 either.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Nov 14, 2019 11:32PM Missmcbth wrote:

Hi Befreindly,

I'm not sure if my situation fits yours but I thought about what Beesie said about there not being too many DCIS old timers around and wanted to share. I was diagnosed with DCIS back in October 2009 and just passed my 10 year anniversary. Scanxiety is still a thing but I now can go back to regular, non-diagnostic mammograms after all these years (not sure how I feel about that! ). I did have a lumpectomy (4mm dcis that was apparently all removed during the biopsy) and 6 weeks of radiation and no tamox (ER/PR+). My mom passed away 6 years ago of endometrial cancer so that risk with the tamox didn't seem too insignificant to me. Anyway, at the time of my diagnosis I hadn't found this amazing group so didn't know to document the grade and other details and at this point, I don't know if I want to dig into that but I did want to respond in case any part of my story might be helpful. And also a huge thank you to Beesie as your incredible depth of knowledge and information has been a great resource and comfort to myself and to many others on this board!

Log in to post a reply

Nov 15, 2019 09:38AM Ingerp wrote:

Keep in mind that lots of people with DCIS and no recurrence aren't on BCO any more. (FWIW--my 2018 IDC was not a recurrence--other breast and different tumor type.)

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
Log in to post a reply

Nov 19, 2019 04:03AM Jojo0388 wrote:

hi all

I have just joined

I was diagnosed with DCIS in April high grade and extensive around my breast

First surgery was in May no clear margins i have a mastectomy in July this year

So far no more treatment

But I was wondering who else had mixed mesaages when first diagnosed

I was told small amount remove lump all good

I had had screens every year for the past 10 due to cancer being in the family

TIL day I have a meeting with breast screen

I was told they notices changes in 2016 but they didn’t think it was significant enough to contact me so theee years later here I am

I am so angry

And interest in know how many other are there like me

Log in to post a reply

Nov 19, 2019 06:16AM - edited Nov 19, 2019 06:17AM by Jelson

Diagnosed in March 2009 - Grade 3 DCIS 1.7cm? lumpectomy, closest margin skin 1.5mm , 6 weeks radiation including boosts. 4.5 years tamoxifen - came off early due to endometrial cancer - stage 1a. I see my MO and RO annually. Only followed by GO for 3 years, Doing fine!

Dx 4/17/2009, DCIS, <1cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR+
Log in to post a reply

Nov 19, 2019 07:26AM Moderators wrote:

Missmcbth and Jojo0388, we wanted to welcome you to our wonderful Community. We're so sorry for the circumstances that bring you here, but we're so very glad you've found us! If you need any help navigating the boards or the main site, please don't hesitate to reach out to us. We're always here!

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
Log in to post a reply

Nov 19, 2019 07:57AM MCBaker wrote:

No, they still don't look at HER2 for DCIS. I wish they had, because they might have pushed up the mastectomy date for me. Despite the massive size of my DCIS tissue, they analyzed it with computerized equipment, so human error in finding IDC is eliminated. After the next Herceptin, treatment phase ends, then watchful waiting begins.

Mary Dx 10/3/2018, DCIS, Right, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 11/15/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 11/16/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/5 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 12/18/2018 Herceptin (trastuzumab) Chemotherapy 12/19/2018 Taxol (paclitaxel) Surgery 6/27/2019 Reconstruction (right): Fat grafting, Saline implant
Log in to post a reply

Nov 23, 2019 05:42PM Kkubsky wrote:

It will be 4 years in January since my dx of DCIS ER/PR negative high grade. Had lumpectomy and rads. So far so good.

Dx 1/28/2016, DCIS, Left, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 2/24/2016 Lumpectomy: Left Radiation Therapy 3/20/2016 Whole-breast: Breast
Log in to post a reply

Nov 23, 2019 09:04PM SUPer52 wrote:

Befriendly, I am also glad you started this thread. I was diagnosed with both DCIS and IDC, and I know the IDC was really what drove my treatment plan. However, when my margins did not come back clear after my lumpectomy, it was the DCIS that was still present; the margins around the area with IDC were clear. The re-excision did come back with clear margins thankfully. I have always wondered about the significance of the fact that my DCIS was also grade 3 with comedonecrosis, but it was never mentioned to me at all. It shows in my pathology report, but the surgeon, MO, and RO all focused on the IDC. I have an upcoming appointment with my MO, so I am going to ask about that. Thanks for starting this thread; I'll be checking in for other responses. And thank you to everyone else who responded!

"My mission in life is not merely to survive, but to thrive; and to do so with some passion, compassion, some humor, and some style." -Maya Angelou Dx 1/15/2019, DCIS/IDC, Right, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 1/23/2019 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 2/25/2019 Lumpectomy: Right Radiation Therapy 4/7/2019 Whole-breast: Breast, Chest wall Hormonal Therapy 5/10/2019 Arimidex (anastrozole)
Log in to post a reply

Nov 26, 2019 10:18PM - edited Nov 26, 2019 10:18PM by Palesa2018

This Post was deleted by Palesa2018.
Dx 6/7/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 6/12/2018 Lymph node removal: Sentinel Surgery 7/9/2018 Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 8/9/2018 Hormonal Therapy 9/12/2018 Zoladex (goserelin) Radiation Therapy 9/16/2018 Whole-breast: Breast, Chest wall Hormonal Therapy 11/4/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Nov 27, 2019 03:11AM AmusingSoprano wrote:

Befriendly I had 2.8cm of DCIS Grade 3 with comedonecrosis. I had 2 lumpectomies (one margin was too close the first time, 0.01mm) and then rads. That was in 2016. No hormone therapy as here in NZ they don't test DCIS for hormonal status. The odds are well and truly in our favour, but I guess someone has to be in that very small percentage that have a reccurance.

Dx: 08/04/16, DCIS Grade 3, comedonecrosis. Lumpectomy (left) 08/16/16, Re-excision 09/06/16 Dx 8/4/2016, DCIS, Left, 3cm, Stage 0, Grade 3, 0/1 nodes Surgery 8/16/2016 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 9/6/2016 Lumpectomy: Left Radiation Therapy 10/25/2016
Log in to post a reply

Dec 3, 2019 02:52PM - edited Dec 3, 2019 02:56PM by thisiknow

Beesie ...this was a while back but you said above that Highgrade means Grade 3 but my surgical path report says the .8mm mass is both IDC and DCIS and is Nuclear Grade 1 of 3 (Nottingham histologic) w/necrosis present. I enjoy and respect your knowledgable posts so do tell what am I missing here?



Age 72 @dx - Oncotype 4 Dx 8/2019, DCIS/IDC, Both breasts, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Radiation Therapy 10/28/2019 Whole-breast: Breast Surgery Lumpectomy: Left, Right; Lymph node removal: Sentinel
Log in to post a reply

Dec 3, 2019 04:24PM Beesie wrote:

thisiknow, did the pathology report not break out the invasive vs DCIS components? The grade could be different for the IDC vs. the DCIS.

And the words you provided to describe the grade sound like they are mixing together the IDC and DCIS - which makes no sense.

Nottingham grade is used for invasive cancer, and is based on an assessment of 3 variables - nuclear grade, tubular formation and mitosis. The individual scores for each of the 3 variables are added together, with score totals of 3-5 being Grade 1, 6-7 being Grade 2, and 8-9 being Grade 3.

DCIS is graded based on an assessment of the nuclei of the cells (how different the cells look versus normal cells), and the presence of necrosis. DCIS grades are 1 (Low Grade), 2 (Intermediate Grade) and 3 (High Grade). With the presence of necrosis, I believe that usually even a very "normal" looking cancer cell that would otherwise be a Grade 1, will be upgraded to a Grade 2. But I'm not certain on that.

Your report appears to mention both Nottingham and necrosis together in one sentence, which is why I say that it seems to be mixing the IDC with the DCIS.

DCIS grading: http://surgpathcriteria.stanford.edu/breast/dcis/

IDC grading: (This is Bloom-Richardson but Nottingham is just a variation of the same thing): http://surgpathcriteria.stanford.edu/breast/infductcabr/grading.html

All that said, "Nuclear Grade 1 of 3 w/ necrosis present" would definitely not be high grade, and would be either low grade (the "1 of 3") or intermediate grade (the necrosis, combined with the "1").

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Dec 3, 2019 08:52PM thisiknow wrote:

Beesie ...well if that isn't an education. And I really appreciate it. Thanks for the links too!

I will re-examine my surgical path report and be more specific and come back and post again. Give me a little time and thanks so much for your very comprehensive answer!


Age 72 @dx - Oncotype 4 Dx 8/2019, DCIS/IDC, Both breasts, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Radiation Therapy 10/28/2019 Whole-breast: Breast Surgery Lumpectomy: Left, Right; Lymph node removal: Sentinel
Log in to post a reply

Dec 4, 2019 08:20PM Lindabirdd wrote:

My DCIS was diagnosed in February 2016. High grade ER- PR- and no recurrence or scares. All my mammos have been normal. I check this forum occasionally and try to keep up to date on anything new regarding DCIS

Dx 2/12/2016, DCIS, Left, <1cm, Stage 0, Grade 3, ER-/PR- Surgery 3/3/2016 Lumpectomy Radiation Therapy 4/11/2016 Whole-breast: Breast
Log in to post a reply

Dec 5, 2019 01:39PM - edited Dec 5, 2019 01:46PM by Moderators

Beesie ...here's what my "Final Pathologic Diagnosis" (summarized) says....

L Breast --- (IDC) Invasive ductal carcinoma

Estimated Nottingham histologic grade 1

(DCIS) Ductal carcinoma in situ

Nuclear Grade: Highgrade

Necrosis present

So it looks like IDC grade 1 and Highgrade for DCIS are two different things?


P.S. I don't know why it's skipping lines.


Age 72 @dx - Oncotype 4 Dx 8/2019, DCIS/IDC, Both breasts, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Radiation Therapy 10/28/2019 Whole-breast: Breast Surgery Lumpectomy: Left, Right; Lymph node removal: Sentinel
Log in to post a reply

Dec 5, 2019 02:20PM Beesie wrote:

thisiknow, yes, it appears you have Grade 1 / low grade IDC and Grade 3 / high grade DCIS.

I've read that usually the grade is the same when a tumor includes both IDC and DCIS, but my pathology was the same as yours - a Grade 1 microinvasion of IDC, mixed in the middle of a whole lot of Grade 3 DCIS. I've seen others on this site who've had the same or similar.

The good news is that the IDC is the more serious condition and it's low grade.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Dec 5, 2019 02:26PM thisiknow wrote:

Thanks Beesie ...I've been confused about this for a couple of months.

Hope you have a great day!


Age 72 @dx - Oncotype 4 Dx 8/2019, DCIS/IDC, Both breasts, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Radiation Therapy 10/28/2019 Whole-breast: Breast Surgery Lumpectomy: Left, Right; Lymph node removal: Sentinel
Log in to post a reply

Dec 5, 2019 06:56PM Beesie wrote:

Glad I could help! Nerdy

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Dec 5, 2019 09:08PM thisiknow wrote:

Beesie ...I respect your posts and am learning a lot from them. I'm sure many others are too. So big thanks for that because you are helping people!

Age 72 @dx - Oncotype 4 Dx 8/2019, DCIS/IDC, Both breasts, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Radiation Therapy 10/28/2019 Whole-breast: Breast Surgery Lumpectomy: Left, Right; Lymph node removal: Sentinel

Page 1 of 1 (28 results)