Continuing the discussion... DCIS to Stage IV progression
Comments
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An article currently posted online as an "Article in Press" at the International Journal of Radiation Oncology Biology Physics addresses the question of true recurrence vs. new primary.
Int J Radiat Oncol Biol Phys. 2011 Feb 1. [Epub ahead of print]
True Recurrence versus New Primary: An Analysis of Ipsilateral Breast Tumor Recurrences After Breast-Conserving Therapy.
Panet-Raymond V, Truong PT, McDonald RE, Alexander C, Ross L, Ryhorchuk A, Watson PH.
Department of Radiation Oncology, British Columbia Cancer Agency, Vancouver Island Centre; Population Outcomes Unit, British Columbia Cancer Agency, Vancouver Island Centre.
http://www.ncbi.nlm.nih.gov/pubmed/21288654
The authors classified recurrences in the two categories based on a schema of histologic type, grade, ER status, and location. If the recurrence was the same type, grade, and ER status and within 3 cm of the original tumor, it was classified as a true recurrence. Otherwise, it was classified as a new primary. The rules of the schema are a little more complicated than that, but that is the basic approach. The rules are not universally agreed upon but most would use a similar definition.
They conclude that, "Further investigation of the hypothesis that TR and NP tumors are distinct entities with different survival prognoses will require standardized pathology review and molecular analyses."
To be called a true recurrence the second one has to be very similar in pathology to the original.
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I'm just lurking here, Beesie, but my understanding of BC "recurrence" is the same as yours.
A "recurrence" is the reappearance of a tumor that was thought to have been eliminated. It isn't a new tumor at all -- it's just regrowth of the original tumor because the malignant cells of that tumor were not completely removed. Sometimes the recurrence is in the same place as the original tumor (a "local recurrence"); sometimes the recurrence is near the original site -- perhaps in the regional lymph nodes draining that site (a "loco-regional recurrence"); and, sometimes the cancer comes back at a site that's far from the original location -- e.g., bones, liver, lungs, brain ("distant recurrence").
If the original tumor really was totally removed, and there were no stray cells from that tumor left anywhere in the body (at the original site, in regional nodes, or in distant sites), then the "new" tumor really would be a new tumor -- not a recurrence. It would be a new primary cancer, possibly with different histopathology (ILC instead of IDC), different grade, different Oncotype DX score, and entirely different markers (ER, PR, HER2).
The Mayo Clinic is among the places that agree with us: http://www.mayoclinic.com/health/recurrent-breast-cancer/DS01078
"Recurrent breast cancer is cancer that comes back following initial treatment. Although treatment is aimed at eliminating all cancer cells, a few may survive. These undetected cancer cells multiply, becoming recurrent breast cancer.
"Recurrent breast cancer may occur months or years after your initial treatment. The cancer may come back in the same place as the original tumor, known as local recurrence, or it may spread to other areas, typically your bones, liver or lungs."European oncologists also agree with your definition: http://www.gaeainitiative.eu/word_page/BC_Recurrence.htm
"Recurrence describes the return of breast cancer after primary treatment. There are three types of recurrent breast cancer…[local, regional, and distant]. ... A new cancer may occasionally occur years after the initial tumour, in a different area of the breast and with different pathology. Second cancers such as these are treated as new cancers, independent of the first cancer, and are not considered to constitute a recurrence."
At least, that's what "recurrence" means at the cancer center where I'm being treated; and that's what it meant in the pathology courses I took in my previous life.
otter (quietly tip-toeing out of sight)
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I never thought there was controversy about the distinction between a recurrence and a second cancer; what remains unclear is identifying which of the two a second event is - and someone correct me because I may be wrong about this.
Apparently, as with too many things cancer, science is not sure. You cannot even go by hormone/her2 receptor status, since a cancer can change its stripes upon "recurrence" and even following treatment, as a few stage IV sisters can attest to. It appears that we are merely dealing with hypotheses for now, and rather arbitrarily defining proximity to first event as one way to distinguish recurrence from not. Very frustrating.
Until we know for sure how to tell whether a second event is a recurrence or a second cancer, early stage treatment will remain as blind as it is, IMO. The question remains: did this patient become ill once with two "flare-ups", or twice?
(lions don't tiptoe :-) )
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JB, I've never heard the term "recurrence" used interchangeably with "new primary" so it's interesting that your breast center uses the term that way. That's why I was confused by your explanation of the difference between a recurrence and a residual cancer. Since the definition that you provided for a "recurrence" was foreign to me, it didn't help me understand the distinction that you were making between a recurrence and residual cancer. I have found this one report that seems to bridge the definitions of "recurrence" and "residual cancer". As I interpret it, the authors are saying that the presence of residual cancer is what leads to recurrence.
Prognostic factors for local recurrence in breast conservation therapy: Residual cancers after lumpectomy http://www.springerlink.com/content/q4m1333x7wv32712/
"...residual cancer rates were significantly higher in patients with: (1) tumor diameters of 3.1 cm or larger; (2) tumors beneath or in the vicinity of the nippleareola; (3) malignant calcifications noted in mammography findings; (4) serous or bloody nipple discharge, particularly with positive cytologic findings; (5) papillotubular carcinoma diagnosed by biopsy, (6) lymphatic invasion by tumor cells; or (7) a high degree (n4) of lymph node metastases. The above seven clinicopathologic factors are thus considered useful prognostic indicators for local recurrence in BCT with lumpectomy."
With all the other confusion about breast cancer, it would be nice if our doctors used consistent terminology, but I guess that's asking for too much!
Athena, otter and redsox, thanks for the information provided. The following two quotes, the first redsox's post and second one from otter's post, are interesting in light of Athena's comment that a cancer can change it's stripes when it recurs:
"If the recurrence was the same type, grade, and ER status and within 3 cm of the original tumor, it was classified as a true recurrence. Otherwise, it was classified as a new primary."
"It would be a new primary cancer, possibly with different histopathology (ILC instead of IDC), different grade, different Oncotype DX score, and entirely different markers (ER, PR, HER2)."
I had always been under the impression that a true recurrence would share the exact same histopathology as the original cancer. I was totally surprised when I learned sometime in the last 18 months, I think, that this isn't always the case. I had no idea that a cancer might change ER and PR status when it recurs. That is just so weird to me but it's been proven beyond any doubt. It shocks me that this isn't better communicated and understood. If someone has a recurrence, it's so important that all the markers be redone and yet I don't know that this always happens.
And yes, that really complicates things when it comes to identifying what is a true recurrence and what is a new primary.
Day, your comment about DCIS occurring as a new primary after a mastectomy is interesting and it gets me back to my question - how does that happen if all the milk ducts have been removed? So within that tiny amount of breast tissue that remains, are there remnants of the milk ducts? How else can a new DCIS develop? Interesting.....
Dejaboo, thanks for the info about how DIEPs, TRAMs and GAPs are done, with the reconstruction being over the muscle. This isn't to make anyone nervous, but if there were to be a chest wall recurrence, how would it be found? I'm off to finish making dinner now but I'm interested in reading the discussion in your new thread. I'll check that out soon.
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What an interesting discussion. Thank you to Beesie and all the others who have contributed. I had a unilateral mx in 2007 for extensive DCIS. I had SNB but the dye wouldn't move into the sentinel nodes so it was probably completely useless. For some months I worried that, because of the high grade and extensive nature of the DCIS, a micromet may have been missed in the sentinel node. My concern gradually faded though and now I am more likely to be slack than vigilant. I am due for my annual mammo next month and I haven't booked it yet. I figure that I'm more likely to be knocked over by a bus than be re-diagnosed with BC - particularly on the mx side.
However, I remember my surgeon informing me that I had a 1-2% chance of recurrence which seems so remote... but it is possible and, thanks to the information in these posts, I will make sure I make that appointment soon.
Jane
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In reply to Day and Beesie going back a little, I was also told that it is near impossible to remove all breast tissue with a MX as well. I have not had any recon and do have annual followups which consist mainly of mammos and US when needed to rule out suspicions. I have had this for the last two years following my MX. Impossible??? Thats what I thought!
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Well, my (own personal) understanding is that breast tissue has to be composed of milk ducts/lobes. Whatever is the rest of the breast tissue that is fat is not true breast tissue. So when they say that they cannot remove all the breast tissue, my understanding is that there might be residues of lobes.milk ducts. By what my BS told me, women's breasts are not all the same, with exactly similar numbers of milk ducts, lobes, lobules, etc. They are like the lymph nodes and the parathyroid glands, different women have different number of lobes/lobules, that are differntly positioned, etc.
On a drawing it looks obvious where the breast tissue ends, but in real life it doesn't. Think that the breast tissue looks very much like fat (not sure if any of you have seen an autopsy), and the lobules are embedded in the fat, so something that would look like fat along the pectoral muscle going all the way into the axilla, might not be fat, but breast tissue. I'm sure they take out as much as possible without doing damage to other tissues.
Example:
Drawing:
Real-life breast tissue:
and then you can have the exceptional 0.4-6% of women with abnormal breast tissue, that can be discrete or extreme like this lady:
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Beesie, does your surgeon order the MRI because you've had a single mastectomy? I'm just wondering if the same hospital is not approving mine because I've had a BMX. Or perhaps it's up to the surgeon as to what type of follow up they want and it's not the hospital who sets the guidelines. I do know that my original BS said she orders mammograms even on BMX patients. My BS at Princess Margaret said she does not order mammograms on BMX patients but she knows other Dr. who do. The different treatments makes me think that is all a coin toss and no one really knows the right answer . . . or maybe there is no definitive right or wrong.
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I'm also a uni with implant, and also scheduled for annual MRI and mammogram, alternating 6 months. But my oncologist said the MRI will stop when my breast density decreases enough for a mammogram to be more reliable. If the MRI was being used to monitor for recurrence in the mx breast, then they wouldn't stop the MRI since they can't mammogram that breast. So myunderstanding is that both the MRI and the mammogram are focusing on the remaining breast... if I had a bmx I think my doctors wouldn't recommend that do any MRIs.
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Thanks to all ladies who have contributed to this thread...
As for screening post BMX, my onc says we will start doing MRIs once I am about 6 months post my last reconstructive surgery (I had bilateral free TRAM - as Dejaboo said, above the muscle).
Makes me a bit nervous to wait so long post initial dx - I am coming up on my first cancerversary in March, but I guess if the horse is out of the barn, it is what it is.
I had multifocal multicentric ER PR (-) DCIS 9x8x5 cm with lots of small little foci of DCIS in a grossly abnormal nodular area (from the path report). Interestingly, only a 3mm and 7mm spot were seen via computer assisted imaging on the initial diagnostic mammo! I am another one that was told to expect invasive disease, and happily my final path report reads "DCIS" only but my NCI center didn't do the greatest job on my path (only 11 slides of my 4.4 lb breast that had an MRI that read "area with abnormal kinetics suspicious for invasion"
so I am just waiting and watching...and trying to hit age 40 without any adverse events! 0 -
I am one who had radiation after mastectomy, not because my IDC margins were close, but because my DCIS portion was "present at the margins" after the mastectomy. I still can't understand how DCIS could be present at the margins if DCIS is still enclosed within milk ducts. I gave up trying to figure this out a while ago, but this whole thread made me start wondering again.
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A couple of random points - my onc said my chances of mets and/or recurrence were "no more than 10%", while my BS put it at 3% and my reading says anywhere from 1 - 8%. Whatever! But does that change those percentages, Beesie? Just wondering.
I asked about PET scan as a just in case (with high grade DCIS and family history) but my BS said it's like 140 chest X-rays and it's not worth it unless you have symptoms of some sort - bloodwork, lump - which she said will be a discrete, hard, small lump under the skin - like a pea or bb, cough that won't go away (not with flu, rather), new aches that won't go away, etc. (like any middle-aged woman doesn't have aches and worry that they're symptoms of something else! - not terribly helpful) Not sure about MRI - I think for non-reconstruction they still want symptoms before ordering.
Do the docs know what precipitates the change of DCIS to IDC? A bio-chemical change brought about by any number of factors - hormones, stress, age? A physical insult to the tissues - surgery, rads, an injury? It would be intersting to know.
But overall, I'll reiterate what I said before. We can chose to spend our lives fretting and worrying, weighing our risks and obsessively checking for new symptoms and let cancer totally eat up our lives, or we can use good sense and some caution but go on as well as we can and LIVE our lives, regardless of how long we may have. I've had several friends around my age drop dead of aneurysms this past couple of years - one right in front of me, plus one teenager friend of my kids. Shook me out of my bc obsessiveness. I'm still doing my self-checks, still will see my docs, etc but I can't dwell on it, or the cancer wins. I refuse to give it the rest of my life.
Elaine
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Very interesting discussion. I was diagnosed with DCIS and LCIS at the same time. My BS said on my initial visit that makes it" more complicated". If I remember correctly he said that when female embryo's/Fetus' are being formed the tissue that becomes both breasts originates from the same cells. Therefore with LCIS being a marker for possible future cancer and then being diasnosed with DCIS at the same time of finding the first LCIS that he said it was my choice as to what to do, but because of this information I did chose to have a double MX.
I have always been extremely cautious about checking my breasts as I have always had "problems" starting with a large benign tumore removed when I was 23 and then continuing on with visits sometimes 10 a year having cysts aspirated or tumors being monitored. Another tumor removed when I was 31. Then later always having ultrasounds so these two cancers came up very quickly and doctors where all surprised.
However someone asks why someone might be at more risk than others? I feel I for one probably am at more risk as I have MS. My Gyn who first called to tell me the news about the cancers said if he had to chooses who among his patients might be at higher risk I'd be at the top of the list as my immune system is abnormal therefore opening me up to risks. Now being on an immune suppressent drug probably isn't helping me either. There fore chosing a more drastic surgery seemed to best option for myself.
My onc. did not recommend any other treatments purely based on quality of life. Still not sure if that was the best choice and will discuss further with my BS when I go back for my 1 year apt. As for any other cancer showing up in my breasts, ( I had the LD reconstruction- not flap) he said they cancer would be visible right under the skin and look like BB's under the skin. He said he removed all the tissue he could and thought everything was gone, but to be on the look out just the same as cells are tiny. I am unclear as to whether I have breast MRI's. I think so and I think they are once a year but no mammograms.
As to the vascular that is something that certainly makes sense and should have occured to me as my Mom had lung cancer and because that cancer doesn't "usually" respond well to chemo - none was given. To this day , I think that was a mistake as within 2 years she had mets to her brain which ultimately killed her - possibly chemo might have given her more time. She did have radiation. So yes I agree that is probably something to ask about.
Thanks to all for this discussion as with DCIS and many questions that it brings and its' many false impressions this is a well researched and informing place to gather more information. Thank you again.
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otter again.... Sorry I keep butting in, but crazydaisy said something that, um, ... makes me cringe:
"I have not had any recon and do have annual followups which consist mainly of mammos and US when needed to rule out suspicions. I have had this for the last two years following my MX. Impossible??? Thats what I thought!"
Do I understand that to mean you are having mammograms on a flat, boobless (sorry) chest? How in heck do they manage to do that to you? I've had 3 mammograms since my left mast/SNB 3 years ago, and no one has ever even hinted at trying to do the flat side. In fact, the rads tech usually says cheerfully, "This will be quick, 'cause we only have to do one side!".
I mean, seriously.... monitoring for recurrence is one thing, but geez. I've always been "small" even when I had breasts, so squeezing those puppies (sorry) between mammo plates was quite a project. What do they put in there, when you don't have breasts??? All I have is a thin layer of skin and pectoral muscle over ribs.
otter
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Oh gosh, I wanted to ask the same thing! My DH found a lump, was actually sent for a mammo and the tech said "No way, let's do Ultrasound". Turned out to be a lipoma (one of a few scattered here and there!).
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As I mentioned earlier, my first BC surgeon said all of her patients have mammograms; regardless of whether they've had a mastectomy or not. I questioned how it's possible and she said they just pull the skin and do it that way. Honestly, it made my knees weak just thinking about it. My new BC surgeon said she does not recommend mammograms after a MX however she said other doctors do and there really is no right answer. Personally, I wouldn't want a mammogram for fear of it causing lymphedema. I'm hoping the new "smart phone diagnostic testing" will one day be used and all of these other tests will become unnecessary.
For those of you who have MRI, it is a contrast MRI?
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Add me to the list of those cringing at the thought of having a mammo after a mastectomy, either with no reconstruction or with implant reconstruction. Yikes!
Day, thanks so much for those pics and your explanation. It's really helpful. I've heard the ductal system of our breasts described as being "like a bowl of spaghetti". I've used that description myself when explaining how the ducts are all intertwined (and that's why our doctors can't just remove a single 'affected duct'). I suppose that description applies as well in explaining how the milk ducts run throughout the breast, right up to the edge of the skin and the chest wall, just like spaghetti spreads out and touches all the sides of the bowl. So the answer to how DCIS can recur after a mastectomy, or how a new case of DCIS can develop after a mastectomy, is that there are fragments of milk ducts left in the tiny amounts of breast tissue that remain after the surgery.
Mantra, to your question, there's no question that I get my annual MRIs because I had the single mastectomy and my remaining breast is so dense. I think my situation is exactly as xtine described her's, which is that if my breast tissue loses density, I probably won't be approved for MRIs anymore. Since I'm already post-menopausal - and that had no impact on my density - and since my mother is in her 80s and still has extremely dense breast tissue (and gets annual MRIs), I suspect my breast density is going to change much. That's good news - I might be able to continue to MRIs - but bad news, since high breast density increases BC risk.
After looking at the Canadian Allergan 410 patient info guide yesterday, I decided to check the U.S. patient info guide to see if it's any different. I couldn't find a brochure that's specific to the 410, which makes sense since it's still in clinical trial in the U.S.. But the more generic Allergan patient info guide for silicone implants does have a very different message with regard to implants and MRIs in the section on follow-ups after surgery (page 56):
SCREENING FOR SILENT RUPTURE
Because most ruptures of silicone-fi lled breast implants re silent, in most cases neither you nor your surgeon will be able to find evidence of rupture. Therefore, valuation of your implants is needed to screen for implant rupture. The best method of screening is currently MRI at a center with a breast coil, with a magnet of at least 1.5 Tesla. The MRI should be read by a radiologist who is familiar with looking for implant rupture.
It is recommended that your first MRI evaluation take place starting at 3 years after implant surgery and then every 2 years, thereafter, even if you are experiencing no problems with your implant. If signs of rupture are seen on MRI, then you should have your implant removed,
with or without replacement. Your doctor should assist you in locating a radiology/screening center, as well as a radiologist who is familiar with the technique and equipment for proper MRI screening for silent rupture of your breast implant.http://www.allergan.com/assets/pdf/M1210-02_Silicone_Recon_Label.pdf
One approach might be to take this to your doctor (or PS) and ask why the Canadian follow-up guidelines for patients are different than the U.S. guidelines.
Jane, I'm glad that this thread is serving as a reminder that you should make your appointment for your annual mammo. I agree with everyone who's commented that we need to be informed and do our self-checks and get whatever tests our doctors recommend (or the ones that we can convince them to book us for, such as MRIs) but there's no point in being obsessed about any of this. 349 days of the year, I pretty much don't think about it all. 12 days, I do my BSE and think about it for a few minutes. And 4 days, the days that I have my annual MRI and my annual mammo and the days that I get my results, I get a bit nervous for 2-3 hours at most.
Thanks everyone for the great input into this discussion. In my 5+ years here, I've probably had 50 PMs or more from women who've wondered about the possibility of developing mets after a diagnosis of DCIS or DCIS-Mi. I've considered raising the topic on the public board before but I''ve always been nervous to do that. So I'm really grateful that this topic was brought out into the open as a result of the thread in the Stage IV forum.
Let's keep the discussion going. And while we're on a roll, are there any other taboo subjects that we want to tackle?
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Can I just throw this out there?
After having had twins and breast feeding them with no problems, proceeded to have 2 more babies 4 years apart. Both of my children refused to drink from the right breast. Each time that breast dried up. I was diagnosed in the right breast with invasive BC 3 years after my last baby was born. Is that just coincidence? Could there be a link?
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Wish I joined this thread earlier Beesie and others - on the topic of progressing from DCIS to stage IV - having myself the rogue DCIS that managed to mutate some of its offspring into IDC and metastasize (regionally, hopefully).
Since the beginning of this ordeal, the "not very likely" was happening to me a lot and I learned to be prepared for surprises:
First, ADH turned into a huge DCIS in 6 months, then DCIS* invaded the lymph nodes (DCIS confirmed by excisional) and then, on top of everything, the metastasis changed the hormonal markers ie. became ER/PR negative. My treatment plan was changed at the last moment. (ever since fixated on mutations in cancer cells - now I know they mutate frantically in order to adapt and sometimes even strike a wrong combination and die)
(DCIS* - DCIS-Mi)
So - yes, I think that, although rarely, the apparent DCIS can lead to stage IV in which case the DCIS would actually be misdiagnosed (with DCIS-Mi).
Also, I think that size and type matter, meaning that large DCIS with comedo necrosis more frequently present with microinvasions.
Not to create panic - most DCIS microinvasions do not mean that cancer has spread outside the breast. Also, my cancer could have been more aggressive because it was HER2+. But aren't half of DCIS HER2+ anyway?
Ang7 - interesting, I neglected the left breast in the last half year before weaning off the second child. Now it is gone.Jenna
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Beesie, I have the Allergan 410 and will get MRIs as part of the trial to check for rupture. But there is no contrast dye in the implant MRI, so hard to use that for BC screening.
As for breastfeeding, I also had trouble. My right breast would feel engorged but didn't produce. I could pump much more from my left. Turns out the ducts were completely filled with cancer. Found it 1 1/2 years later. Wish my doctor had thought of cancer when I asked for help breastfeeding
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Otter, Beesie and Linda
Well I was actually so stunned when the tech asked if she could do mammo on Mx side I think all I could do was comply being stuptified, already standing degowned in front of the machine. It's amazing how much skin/tissue they can still compress after lots of adjustments and acrobats with the tech, getting the right angles etc to get the most tissue, especially near the side up close to the underarm. Not fun but do-able. I have also had recalls both times since MX. The last re-call scared the bejeezes out of me as they spent a good half hour going over remaining breast with ultrasound. I could hardly sleep while waiting for results. I don't cringe as much now thinking of mammo on flat no boob side as I do cring way more at the thought of lefty acting up and possibly doing this again. Good grief, just let me get thru one check without a recall and I will feel lots better.
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I have been following this thread with much interest and wanted to share my experience. I was diagnosed with DCIS with microinvasion (1.9 mm) in Dec 2003. I had a masectomy in Jan 2004 with LD reconstruction. DCIS and MI were grade 3, er/pr-. In Aug 2010 I felt a small bump like a grain of rice around the time I have my annual breast mri. The mri also picked it up and doctors felt sure it was fat necrosis so we were all shocked when it was IDC. However, now grade 1, er+, her 2+ and completely surrounded by healthy breast tissue. I have received 2 opinions, one feels it is definitely new primary (first was comedo, second has low mitotic rate for low) the other feels that original mi was too small to grade and may have been a grade 1 even with high grade dcis. He does say that there is no way to tell for sure. However both do feel that it is still a "curable situation". I think it is safe to say that even though the risk is low a masectomy in no way guarantees that we will be safe from a recurrence or new primary.
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JB - I kept one breast so I have the MRI primarly for that purpose although it does pick up the other breast. I did have flap reconstruction so I would guess that I actually have very little breast tissue, but enough to still be malignant. My implant is behind my chest muscle so it made it very easy to feel the lump, which was 9 mm according to final pathology. I do get contrast with my mri and that is what helped to pick it up. I do think your chest mri would cover the area, the question may be more about the constrast being used.
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I'm really glad to see that I was not the only one perturbed by the DCIS to Stage IV posting in the other forum. I saw it a few weeks ago, and have found myself thinking about it too much. As most of us did, I knew there had to be a micro-invasion that went un-Dx in her cancer but nonetheless, I started worrying about if something went missing in mine. I had a bi-lateral Mx and narrow margins post-Mx. So I moved forward with Rx to complement the surgery. I get thorough ultrasounds every 6-9 months, and my BS said he is considering a mammogram at my next follow up. I don't know how I feel about having my implants pancaked?!? But it probably doesn't feel as bad as worrying about something lurking.
To all the women out there: you are heroes. And to Beesie, thanks.
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josirus, the problem I have with a lot of the DCIS to Stage IV discussions is that some of the women who join in and say "that happened to me too" actually didn't have that happen to them at all.
As we've been discussing here, it is possible for DCIS to progress to Stage IV without any steps in-between, if a microinvasion was missed or if an invasive recurrence was missed. This can happen, and in a couple of cases that have been mentioned on the board recently (one in the Stage IV forum, one here), it appears that this has happened. The problem is that if you read the threads where DCIS to Stage IV progression is discussed, you would think that this happens all the time. It doesn't. It can happen, but it is extremely rare.
The following are the two types of situations (that I am aware of ) where DCIS can appear to progress directly Stage IV:
1) There is a misdiagnosis. A microinvasion was missed in the original diagnosis and prior to removal of the cancer from the breast, invasive cells from the microinvasion had already moved into the body.
2) There is an invasive recurrence that is not found. So someone is diagnosed with DCIS and then is found to have mets. The mets developed from an invasive recurrence but the recurrence was not found prior to the discovery of the mets (and possibly is never found since the treatment at that point focuses on the mets).
The following are not examples of DCIS progressing directly to Stage IV:
3) When there is a microinvasion found in the initial diagnosis. A microinvasion is a tiny invasive cancer ("micro" = extremely small, "invasion" = invasion). A microinvasion can lead to mets; it doesn't happen often, but when it does, it's no mystery as to what happened and why. So if someone had DCIS-Mi (as I did) and then went on to develop mets, this is not a case of DCIS progressing to mets. It's a case of a small IDC progressing to mets.
4) When there is a invasive local (i.e. breast area) recurrence after the initial diagnosis of DCIS. Local recurrences can happen after a diagnosis of DCIS; it's possible whether one has a lumpectomy or a mastectomy. It's not unusual; it's not unexpected; it's not overly rare (even for those who have a mastectomy; 1% - 2% is not "rare" in the same way as DCIS seeming to progress directly to Stage IV is rare). 50% of recurrences after an initial diagnosis of DCIS are not found until they are invasive. Once DCIS has evolved to become invasive, it is no longer DCIS; it's now IDC. IDC can progress to Stage IV. So this type of situation is actually DCIS ---> local recurrence in the form of IDC ---> Stage IV. No mysteries here.
5) When the initial diagnosis of "DCIS" was not DCIS at all. One of my biggest frustrations on this board are the number of women who say that they have "DCIS" when in fact they had invasive cancer. I'm not blaming the women for the misunderstanding; I'm blaming their doctors, who obviously were not clear in explaining the diagnosis. For some reason the words "DCIS" tend to stick out in conversation and on a pathology report. Since most IDC also includes a component of DCIS (approx. 80% - 90% of IDC develops from DCIS), many doctors will mention both types of cancer and most pathology reports include both terms. If IDC is written out ("invasive ductal carcinoma" or "infiltrating ductal carcinoma" or even just "ductal carcinoma") it can get lost in a sea of words, whereas "DCIS" tends to be very noticeable. Here are some quotes from this website, pulled from older discussions about DCIS progression (I've removed words that might identify the individuals):
"I was initially diagnosed... with Stage I-II DCIS."
"I had DCIS, Stage 3"
"...had DCIS stage IIb"
"DCIS Grade IIIb 5 cm tumour and 5/17 nodes"
"I had DCIS... TCH chemo therapy... herceptin for 1 year due to Her2 positive diagnosis. "
"I was just diagnosed with DCIS. My doctor has prescribed.... Neo-Adjuvant Chemotherapy"
"... for bilateral invasive DCIS"
"I too had DCIS stage 1, Grade B, ER & PR pos.... I did chemo, and 31 rads."
"diagnosed with DCIS.... had a mastectomy... getting an year's dosage of Herceptin "
"I was diagnosed with DCIS...the sentinel lymphnode biopsy turned out to be positive "
"...diagnosed with DCIS...did adriamicin/cytox"
I found these over about 10 mintues using the "search" function. If I spent a bit longer, I'd find many more. All of these are examples of posters who honestly believe that they have "DCIS" and yet it's clear from their own descriptions of their diagnosis or treatment that all of these women actually had invasive cancer (no doubt with some DCIS thrown in). If any of these women were to develop mets (and some have), they would probably say that they went "straight from DCIS to Stage IV" but it wouldn't be true in any one of these cases.
So the problem with DCIS to Stage IV discussions on this board is that most of the women who believe that they are examples of this happening actually fit into categories 3, 4 or 5. But if someone diagnosed with DCIS is reading the thread, it sure sounds like DCIS to Stage IV progression happens a lot - look at all these women who experienced this! But they didn't.
There is nothing I hate more than having to correct someone on their diagnosis. I try to be as polite as I can be, but usually it gets me into trouble; it's hard not to offend someone in this type of situation. Often times the woman affected isn't offended at all (some appreciate the information) but there are sure to be others get offended on their behalf. It's a no-win situation. I absolutely hate to do it, and I usually don't, unless there is something in the post that might be particularly misleading or concerning to those who really do have pure DCIS and the post is located somewhere where those with DCIS will find it. A discussion about DCIS progression to Stage IV is one of those situations where I usually feel that I have to speak up, as much as I hate to do it.
It's much better to have an open discussion about this, and to have it in the DCIS forum.
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I am one of those people who havent moved on yet with a DCIS diagnosis.. The fear of cancer makes me think that this could be me.. irrational thoughts I know but each day it gets better.
but one question, many of the women in stage IV have had nodes removed and many of them with no sign of cancer.. did the cancer cells go through the blood rather than the lymph nodes?
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Ang7 - very interesting. I was dx with multifocal/multicentric DCIS about 4 months after I weaned my baby. My right breast would also engorge but not as much milk would come out with pumping. And, my right nipple was more "forward facing" - my left one pointed straight at the ground (LOL) after nursing and pumping for my 2 boys. And my little guy didn't like to nurse on that side... I think in retrospect all a sign that something was going on in the ductal system.
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