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

Befreindly

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?

Palesa2018

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

TB90

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.

Beesie

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.

thisiknow

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

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.

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MinusTwo

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.

Beesie

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.

MinusTwo

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...

Beesie

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.

Missmcbth

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!

Ingerp

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.)

Jojo0388

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

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!

Moderators

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

MCBaker

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.

Kkubsky

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.

SUPer52

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!

Palesa2018

I am also interested in this topic. Same story with me, it was the dcis that was extensive, grade 3 with comedo necrosis. Keen to hear about the significance of that. Also had a re-excision to clear margins post mastectomy and rads.

AmusingSoprano

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.

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?

Beesie

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").

thisiknow

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!

Lindabirdd

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

thisiknow

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.

Beesie

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.

thisiknow

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

Hope you have a great day!

Beesie

Glad I could help!

thisiknow

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!

Curlykat

Nuclear grade 3 w/necrosis. Cribiform & macropapilliary. Focal comedonecrosis present. Extensive intraductal component positive. 2.1cm maximum area involved (tested specimen after going back in during the initial lumpectomy: 1.x9.7x3cm) ER/PR+

BRCA negitive, no genetic predispisition.

I did 37 radiation treatments with the last 8 being "boosts." No major skin damage.

Took Tamoxifen for 2.5 years.

I'm having annual 3D mammograms. The surgeon initially ordered every 6 months, but Rad Onc didn't want them that often.

I will celebrate 5 years since diagnosis this St. Patrick's day. I have not had any further problems or scares on mammograms.

Best wishes!

ps0705

Today I had a mammogram for several lumps that have developed in the affected breast (DCIS grade 3, ER/PR-. 1.5 cm) and now have 2 areas scheduled for biopsy. One along my chest wall for ultrasound biopsy since the "cyst" is not round and instead looks like a rorschach test and another for stereotactic biopsy for newly developed microcalcifications. This is such a effing nightmare. I had a double mastectomy to give me the best odds, yet here I am.....