Topic: If you had DCIS with your IDC...

Oct 21, 2020 04:27PM - edited Oct 21, 2020 04:28PM by Beesie

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.

Oct 21, 2020 05:01PM Beesie wrote:

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".

Oct 21, 2020 05:19PM barbaraprevost4 wrote:

IsDCIS with IDC “extensive intraductal component” ?

Oct 21, 2020 05:55PM Beesie wrote:

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?

Oct 21, 2020 06:24PM barbaraprevost4 wrote:

Thank you

Oct 21, 2020 07:01PM Trishyla wrote:

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

Oct 21, 2020 09:26PM Beesie wrote:

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.

Oct 22, 2020 10:57PM Ladyc2020 wrote:

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.

Oct 23, 2020 02:34AM clarrn wrote:

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!

Oct 23, 2020 11:09PM Jons_girl wrote:

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

Oct 24, 2020 10:33AM Jons_girl wrote:

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

Oct 24, 2020 03:36PM - edited Oct 24, 2020 03:37PM by kksmom3

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.

Oct 24, 2020 05:08PM kksmom3 wrote:

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.

Oct 24, 2020 11:30PM kksmom3 wrote:

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!

Oct 25, 2020 09:46AM Beesie wrote:

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?