If you had DCIS with your IDC...
what was the final outcome after your surgery in regards to how much was IDC and how much was DCIS? I’m just curious. DCIS was found in both of my biopsy samples along with IDC.
Do they “stage” based on how much of a tumor was specifically IDC or do they do a total?
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Staging is based only on the size of the IDC. DCIS - no matter how much you have - doesn't count towards staging. Pure DCIS, with no associated IDC, is always Stage 0, whatever the size of the DCIS. But once you have IDC, even just 1mm, it's Stage I (or higher).
Because most IDC develops from DCIS, it's very common to find them together. I think about 85% of IDC cases include some DCIS.
What I've found really interesting as I've read posts here for years is that there seem to be two types of diagnoses. Some are largely DCIS with just a tiny amount of IDC. I had an extreme version of that, with over 7cm of high grade DCIS and just a microinvasion of IDC, 1mm. Others are mostly IDC, with just a small amount of DCIS (5mm or less).
It seems to me that in both these situations, the DCIS likely developed first, and then evolved to become IDC. In one case, the DCIS obviously kept growing and spreading as DCIS, while the IDC remained small and isolated or developed very late, after the area of DCIS was large. In the other case, the DCIS seems to have progressed to become IDC very early in the development process and then the cancer continued to grow only as IDC, with no further development of the DCIS. I've always thought that researchers should look at the genetic make up of the DCIS in both those different scenarios and compare, to see if they can figure out what is different that might cause one cancer to grow as DCIS and the other as IDC. I've seen dozens of studies where researchers try to get a handle on what causes DCIS to develop to become IDC, but I've never seen a study that compares these two very different IDC-DCIS diagnoses.
It will be interesting to see the answers you get. I'm sure there will be some where there may be a similar amount of IDC and DCIS, and I suppose that might be a 3rd scenario to add to this research, which unfortunately nobody seems to be doing.
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Thank you Beesie! Such good info.
So is it safe to say they don’t even try to stage until surgery is complete and everything is measured
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Well, there is Clinical Stage and Pathological Stage.
Clinical Stage is based on the biopsy results and tumor size / nodal involvement estimates from imaging. Pathological Stage is based on the summary of all biopsy and surgery findings, plus imaging such as CT scans and PETs (which are not usually done for early stagers).
Clinical Stage is important for those who will be undergoing neoadjuvant chemo, i.e. having chemo prior to surgery. Usually this will shrink the tumor and hopefully clear the nodes, so the pathology after surgery no longer represents the real diagnosis. But for those who have surgery prior to any systemic treatment, Pathological Stage will be much more accurate and in most cases doctors never even mention the Clinical Stage, except for some who may say something like "Well, at this point it looks like you will be Stage IIA but of course that can change with surgery".
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I had IDC, a bit of DCIS and also a bit of LCIS. I'm a mutt, or rather my left breast is a mutt!
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IsDCIS with IDC “extensive intraductal component” ?
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Usually the size of the area of DCIS is included in the pathology report, but "extensive intraductal component" means (I think?) that the total area of cancer includes at least 25% DCIS. It may be that the EIC terminology is used when the DCIS is fully mixed in with the IDC, so that it can't be counted and measured as a separate component... but I'm not sure about that.
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edj3, I think a lot of us are mutts. I've written here before that my pathology report read like a pathology textbook, there was so much stuff in there. IDC, DCIS, ADH and a very long list of fibrocystic conditions of various risk levels.
Mutts are cuter and more fun anyway, right?
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Beesie:
I found some interesting research on the role of the duct itself in preventing extraductile invasion of cancerous cells. I posted it here
How the body prevents DCIS from becoming IDC
Here is a repost below though.
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I'm sure there are various ways the body tries to control errant cells, but these researchers have found that one way the body stops DCIS from becoming IDC is that the duct lining, called the myoepthelial layer, actively pulls cells that break through it back in.
It's ability to do this effectively seems to hinge on the contractability of the myopepthelial cells and the ratio of the cells to cancerous cells.
How cells actively stop breast cancer from becoming invasive
Here is a video or animation of the layer pulling a cancerous cell back in.
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Thank you
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Beesie, I am counting on my muttness being a good thing!
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Hey edj3. You wanna talk mutts, I had five distinct kinds of cancer (including triple negative) in 7 tumors spread across both breasts. Or, as my breast surgeon put it: I win at cancer bingo. Gee, thanks, I guess.
Trish
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I know my IDC trumped the DCIS but always kept it in the back of my mind and wondered if my DCIS meant anything. I just pulled up my pathology after my BMX from 2017 and this is what it said about my DCIS:
- Ductal carcinoma in situ, intermediate the nuclear grade,
solid and cribriform
Ductal Carcinoma In Situ (DCIS): Present
Size (Extent) of DCIS: Largest focus 0.3 cm; involves 8 of
13 sections from the parenchyma of the breast
Architectural Patterns: Solid and cribriform
Nuclear Grade: Intermediate
Necrosis: Absent
I always wondered what the ‘involves 8 of 13 sections’ means. Does that mean most of my breast was full of DCIS? If anyone knows maybe they can enlighten me. I never bothered to ask as we always just focused on the IDC.
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Leesa, my interpretation is the same as yours, which is that some DCIS was found in 8 of the 13 sections of your breast. But if the largest focus was 3mm, that means that there were just tiny amounts of DCIS scattered in your breast.
WC3, that video is really cool. I recall reading your post and the article when you first posted it. It's very interesting. But what it doesn't explain is why, once some cells do escape through the myoepthelial layer and move into the open breast tissue as IDC, in some cases the DCIS seems to stop multiplying and the cancer grows only as IDC, whereas in other cases the DCIS continues to multiply and spread while the IDC doesn't grow.
Lots of us have a large amount of DCIS with just one or a few 1mm microinvasions. It can't be that in every case, the microinvasion broke through the duct just prior to diagnosis, and therefore never had a chance to grow larger before being surgically removed. In some cases, the microinvasion must have broken through earlier, and yet the IDC remained 1mm or smaller in size, while the DCIS continued to spread. Yet then there are diagnoses where someone has only 3mm of DCIS and a much larger IDC tumor. In those diagnoses, logically the IDC must have broken through the myoepthelial layer very early on in the development of the cancer and then the DCIS just stopped growing. What is different, genetically, between the DCIS & IDC cells in the first scenario and the DCIS & IDC cells in the second scenario? In both cases, the myoepthelial layer was not able to pull the IDC cells back in, but then the cancers developed differently after that point.
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Beesie:
All excellent questions. The more I learn about cancer the more interesting a beast it seems. I kind of wish I had more of a background in molecular cellular development biology. There seem to be a lot of parallels between cancer and cellular migration in fetal development.
My IDC was around 3cm at the start of neoadjuvant chemotherapy and I had 1mm of DCIS found in the surgery pathology. I imagine I probably had more DCIS at some point. I had microcalcifications outside the tumor area on the mammogram but my breasts were so dense I'm not sure any DCIS would have been visible.
I suspect my cancer developed between 5 to 3 years before it became palpable. I wish our bodies had a log of the development history. It would be interesting to know when, exactly, things went wrong and what the catalyst was.
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My final surgery pathology was 1.7cm IDC and 2.2cm DCIS. I’m guessing it all started out as DCIS and then came out of the ducts. I asked my MO how long I probably had it and he said at least a year. I felt the lump but is showed just 6mm on ultrasound.
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something interesting about my cancer was I only just had IDC. But with the stories on this forum....I’ve wondered could I have had some that was missed? I only had mammo (missed my cancer due to extreme dense tissue) and ultrasound. I am having my first breast MRI next month. I think mri and mammo are the only diagnostic that can see DCIS correct?
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I had huge fields of DCIS 11x6x4 cms and another one that was more like 5x4x3cms. 9 mm of IDC in my breast and 9 mm in 1 lymph node. 81 out of 88 sections had at least some DCIS and it was all comedo necrotic. Both my ducts and lobules were crammed with cancer so they had to do some extra staining to see if it was pleomorohic or DCIS. The doctors were all flabbergasted at the amount of DCIS I had at 30. They said they had only seen it like this in textbooks of 90 year olds. Um.... thanks?
But after everything I am doing really well! Bessie, you helped me so much in those first months of diagnosis way back in 2014 on the DCIS boards. Thank you for what you continue to contribute to this community!
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Jons_girl,
The reason most IDC is found with some DCIS is because usually IDC develops from DCIS. Therefore when DCIS and IDC are found together in one diagnosis, they are located together too. So whether your imaging 'saw' any DCIS or not doesn't matter - the pathology analysis under the microscope would have picked up any DCIS that was present. This is usually how people with IDC discover that they have some DCIS - it's not seen on imaging but reported in the pathology report.
In about 15% of cases, IDC is found without DCIS. Since by definition IDC is a ductal cancer, "invasive ductal carcinoma", it seem illogical that the IDC could have developed in any way other than starting in the ducts as DCIS. I remember reading somewhere how this can happen, but that was years ago and I don't remember the explanation. That said, I suspect in most cases where no DCIS is found, the IDC did in fact start as DCIS. But if there were only a handful of DCIS cells, and if they were all successful at breaking through the duct and moving into the breast tissue, thereby converting themselves to become IDC cells, then no DCIS would be left in the duct.
clarrn, nice to see you! Glad you are doing well!
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Thank you Beesie! That makes sense. I am hoping nothing shows up this year on my first breast MRI. I guess there is a little worry in the back of my mind because none was found at surgery. I guess I worry that it could have been missed.....since the tumor wasn't seen on mammo. Like a spot in the same breast or different breast could have been missed since they only took out the tumor at a certain spot of my Left breast. But maybe I am not understanding correctly how this works. With my extreme density in my breast tissue, I am glad I am getting a MRI done (my first breast MRI) in November.
I agree with clarrn, thank you Beesie for all your contributions on this forum! We appreciate you!!! Hope you all have a wonderful weekend!
Tami
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I also had both IDC and DCIS and other abnormalities in my left breast. There were 4 IDC masses (all tubular) between 9 mm and 3 mm in size. The largest one was adjacent to 12 mm of DCIS. I am convinced that had been going on since 2014 at least. I felt something unusual in that area when I was breastfeeding my second in 2013, but it was dismissed as a blocked duct by my GP. I didn't pay attention to how/if that developed over the years, as I had always had a lumpy breast , and the negative yearly mammos/US and breast exams by the gynecologists lulled me into a false sense of security. The last mammo+US picked a 1.3-1.5 cm nodule, MRI confirmed that and showed the other smaller masses. But as the largest IDC after surgery was found to be less than 1cm I assume that pre-surgery imaging had picked the DCIS, too? I had dense breasts. As for staging, they ignored the DCIS and focused on the largest IDC mass only.
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mountainlover: thank you for sharing your experience/journey! So I still wonder then if all or most IDC has DCIS too present. I realize IDC starts as DCIS or does most if not all of the time. Very interesting they never found any in my breast. I just hope it wasn’t missed. I’m small breasted so I’ve always thought if there was anything else in there that they’d have seen it. I’m hoping I’m right. I will be having a MRI next month so I guess will see if they see anything. Hoping all goes well. I’ve been having pain in the lumpectomy site
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Jons_girl, I just replied to your other post in the DCIS thread, here:
Topic: Can DCIS be felt?
As I wrote, "Approx. 15% of patients do not have any DCIS found with IDC - so while this isn't the norm, it's not unusual either. And your imaging and surgery found the IDC, which is the more serious condition. DCIS is harmless - the concern with DCIS is that it might develop to become IDC. If your diagnosis did start as DCIS and it did develop to become IDC (a lot of DCIS never progresses any further), well, the IDC was found. So what's the concern?"
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I originally was stage 0, DCIS, grade 3, found clearly on the 3D mammogram. The largest core biopsy was 6 mm. After lumpectomy, they found 3 mm of invasive IDC, so now I'm stage 1A. My pathology also noted EIC, which I asked about. The oncologist said it wasn't possible in my case to determine how much DCIS there had been. I must've had at least 6 mm of DCIS. I think it must have been mixed in. It seemed like mine was in the process of changing over to IDC fairly early. I was fortunate that it was caught so early. It's important to note that my DCIS was grade 3, cribriform with comedo necrosis, the worst grade of DCIS, and probably the most prone to becoming IDC. That is why I also had an MRI of both breasts before lumpectomy to see if anything else was in there. Thankfully not. I'm glad Jon's Girl, you'll get the MRI, that would be good just to make sure nothing was missed.
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thanks Bessie for posting that info on the other thread. No worries I’m fine my concern isn’t warranted
Kksmom3: I’m glad I’m having a mri I’ve been having only ultrasound but I should be having other diagnostics too as my doctor prefers that too and it’s a good idea! Thank you for sharing about your experience! I hope alls going well for you post surgery
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Jons-girl. two years out, I do have breast sensitivity, so my dr put me on gabapentin, which really helps. Wearing a bra really helps as well, but I'm being a couch potato today and don't have one on. What kind of lumpectomy pain are you having? My cancer was a centimeter under the nipple, no, I could not feel it at all, I tried once I knew it was there. I'm also very small busted, so I think if it had had a chance to grow, I would have felt it. That makes me cringe....... Anyway, I just sort of have a tingly sensation all the time, oncologist said there's a lot of nerves there.
I would love to have a breast MRI as follow up every few years, so I'm going to ask every year. Last year, MO said no. It kindof bums me, they preach early detection, but when you ask for it, they turn you down. I don't know if I'm being realistic, I do have category 3 dense breasts.
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Hi kksmom3: Thats wful what you've been going through That's good the medicine is helping
Yeah my lumpectomy site felt a bit strange too almost numb like sorta after surgery. But it's better now
The pain I'm having....isn't constant pain. So maybe it's nothing. When I sneeze under the lumpectomy site/chest wall/rib I have pretty significant pain. Also have had pain there other times too. It's probably nothing. Maybe it's all scar tissue nerve damage.
I'm having a mri at my next follow up appt in November. I'm participating in a clinical study too at the same time
If you live in the United States most states have breast density laws My state law gives those of us with density category 3 and 4 the right to have additional diagnostics other than just mammo it's the law You may already know if you have a breast density law where you live areyoudense.org has a map of the states and laws
I think your being realistic. Your doctor should be able to order you one for follow up with your density level I would think. I have breast cancer in my family so my percentage for something (I'm sorry I'm spacing on the name)was over 20% I think that makes me eligible for mri too
Sorry for writing a book
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Jons-girl.........I love when people write books..........yes, I have been informed due to the law. I'm in the Midwest. I now get ABUS along with my mammograms. I am really vigilant with self-checks also. I, of course, said I didn't want radiation, and I told them that, but my surgeon said I really needed it. So, I had it. Like everyone else on here, we just pray it never comes back. My IDC was grade 2, so I wasn't getting out of there with no radiation, I guess. Oh well, I did mostly ok with it. Now the hormone blocker.......ugh........but that's another story. Let us know how your MRI goes and the clinical study! Best of luck to us all!
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Hi All- I'm new to the forum.
I'm a two-time cancer survivor. First time, in 2011, Stage 1 Invasive Ductal Carcinoma in the right breast. I had a low chance of recurrence, so no chemo, just radiation and Tamoxifen. I was released from treatment in 2018. In Dec. 2019, I was blindsided by a DCIS diagnosis (high grade) in the left breast. I had a double mastectomy which went well, but reconstruction on the right side has been a nightmare (a story for another day).
Moving forward how will I be screened? I know I can't do mammograms, but I'm more worried the DCIS will come back...it was high grade. I had a hidden scar, nipple sparing double mastectomy, so I'm worried if I get cancer again, it will be too late by the time it's discovered.
Thanks,
B
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TenS4me,
Unfortunately after a diagnosis of breast cancer, all of us are higher risk (than the average woman) to be diagnosed again, not with a recurrence (although obviously that is a risk after any breast cancer diagnosis) but with an unrelated occurrence of breast cancer, in either a breast, i.e. a new primary breast cancer. Since your second diagnosis was in the other breast, it clearly was a new primary. Just the unfortunate luck of the draw that you were diagnosed twice. But not all that uncommon, when you read this board.
After a MX for DCIS, and frankly after any MX (even for invasive cancer), there is no imaging that's done, just than physical exams. That's the standard protocol. If you have implant reconstruction, you may be able to convince your doctor to schedule you for an MRI every 3 years or so, in order to check the integrity of the implant. If the gadolinium injection is done during the MRI, then it would also serve to check for breast cancer. This isn't commonly done, however.
After a MX for DCIS, unless the surgical margins are close, the recurrence risk is 1%-2%. This is true even with high grade DCIS. When I was diagnosed in 2005, I had over 7cm of high grade DCIS with comedonecrosis. I had a MX with subpectoral implant reconstruction. No screening, no recurrence.
Do you know the surgical margins after your MX? And what type of reconstruction did you have?
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kksmom3: Thats great your getting two different diagnostics. That's what my doctor prefers too. I've been having ultrasound but passing so far on having mammo's post dx. I'm glad I'm having a mri this year. Yeah I will post how it went.
I don't think people should do what I did. Everyone has a different dx and we need to do what's right for each of us. I'm not sure what I chose will be the best choice down the road. Time will tell. But it was the right choice for me. Yeah I hope and pray that if mine comes back it can be caught early. I was thankful it was caught early in 2017.
The study I’m participating in is: https://clinicaltrials.gov/ct2/show/NCT03607552?term=Dwi&cond=Breast&draw=2&rank=8
Have a wonderful week! Tami
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https://www.youtube.com/watch?v=5Yeb-IcWgmg
