DCIS to invasive statistics?

TheQu33n

I understand that currently there is no way to know whose DCIS will become invasive, but is there data out there that indicates the odds of  DCIS becoming an invasive cancer?  Thanks in advance - karen

Beesie

The statistics are all over the map on this.  I've looked into this extensively over the years and last time I checked, there still wasn't anything clear about it.  The problem is that there simply haven't been any really good studies, which is understandable since most women who have DCIS have their DCIS surgically removed.  Once it's removed, there is no way to know if it ever would have become invasive, and if so, in what time frame. 

This question has come up before so let me dig up some of my previous answers.  I'll copy and post them below.

Beesie

Here's one post that I made after doing some research on this back in September of 2007:

As for what % of DCIS will become invasive, if not treated, there are lots of different opinions on that; this is so much up in the air that most DCIS articles don't even venture a guess.  They just say that not all DCIS will develop into IDC and because we don't know which will and which won't, all DCIS has to be treated.  But here are a couple of quotes from articles that did say something more specific:

- "It would not be unreasonable to estimate the 10-year risk at 15%-that is, 15% of women with DCIS would develop invasive breast cancer within 10 years of diagnosis."  http://www.breastcancer.realage.com/content.aspx/topic/11

- "High-grade DCIS almost always becomes invasive and does so after a short time, Kuhl explained. "When it becomes invasive, it is biologically aggressive -- that means it kills," she said.

In contrast, low-grade DCIS usually remains within the duct and poses no threat. In fact, women can have low-grade DCIS for a lifetime with no ill effects, Kuhl said."  http://www.healthcentral.com/breast-cancer/news-152810-31.html

Personally I think the number is higher than 50%.  That's just my own guess, based on the fact that when there is a recurrence after a diagnosis of DCIS, in 50% of cases, the recurrence will be in the form of IDC.  Add to this the fact that the most aggressive cases of DCIS are usually treated most aggressively - often with mastectomies, such as in my case - and that cuts the recurrence risk so low that most of these cases will never be included in the recurrence stats. 

Beesie

And another post and more research, this one from July of this year:

I've read as much as I can find about DCIS to IDC progression estimates and it doesn't seem as if there is much science behind it.  In fact, almost every reliable source says we really don't know what the % progression is, although it's often estimated to be in the range of 25% - 50%.

-  DCIS can progress to become invasive cancer, but estimates of the likelihood of this vary widely.    http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page5

-  Some DCIS cells can change genetically and become true cancers, and women should not be lulled into thinking that a DCIS diagnosis can be ignored or dismissed. We still do not know for sure which DCIS cells will change and become invasive and which will remain DCIS. It is probably most useful to view a diagnosis of DCIS as an indication that a woman has a greater risk of developing breast cancer, especially if she receives no treatment for the DCIS.

Data suggests that ductal carcinoma in situ represents a stage in the development of breast cancer in which most of the changes that characterize invasive breast cancer are already present.     http://www.dcis.info/dcis.html

-  Overall, it's estimated that about 20 to 30 percent of women with untreated, low grade DCIS go on to develop invasive cancer. It's not currently known how common it is for higher grade DCIS to turn into invasive disease.  http://cms.komen.org/komen/AboutBreastCancer/Treatment/s_002844?ssSourceNodeId=298&ssSourceSiteId=Komen

-  Although this cancer stays inside the milk ducts, it raises the risk of getting an invasive cancer in the future. About 25% to 50% of women whose DCIS is treated by surgery ONLY (without radiation) eventually develop an invasive cancer. Most of those cancers (recurrences) happen within the first 5 to 10 years after a DCIS diagnosis.

But a new cancer may turn up 25 years later-or longer. This usually happens in the same area of the breast where the DCIS was. The new cancer can be either non-invasive (not life-threatening) or invasive (potentially serious). The main goal of treating DCIS is to reduce the risk of an invasive cancer later on.    http://www.breastcancer.org/symptoms/dcis/basics.jsp

- ...the use of screening mammography has led to a marked increase in the detection of DCIS, a tumor that is poorly understood. At present, clinicians are unable to predict which lesions will become invasive or to estimate the time to recurrence or invasion...  "We urgently need better predictors of biological behavior, including progression to invasive cancer and local recurrence.."   http://www.cancerline.com/cancerlinehcp/9370_26405___.aspx

Also interesting:   http://www.tripdatabase.com/spider.html?itemid=282587   and   http://www.thedoctorsdoctor.com/diseases/dcis.htm

From what I've found, most information on DCIS progression to IDC seems to come from one of 3 sources:

1)  Through autopsies it's been found that a certain % of women have undiagnosed DCIS at the time of their death.  This has led to the conclusions that in many women DCIS will never progress to become IDC.  However what's not known is how long those DCIS cells were in the breast and whether they would ever have become IDC. 

2)  Situations where a biopsy was misread as being benign but eventually it was determined that DCIS was present.  In approx. 25% of these cases, the DCIS is not found until it has already progressed to become IDC.  Almost exclusively, these are cases where is there only a very small amount of low grade DCIS (hence the Komen quote above).  Of course what's not known is whether more might have progressed to IDC over a longer period of time.

3)  Situations where the DCIS is treated but IDC eventually forms through a recurrence. The BC.org quote above uses data from this type of source.  Yet if 25% to 50% of women whose DCIS is surgically removed (but they have no additional treatments) still end up with invasive cancer, wouldn't that suggest that if the DCIS was not removed, the % progression would be much higher?

Obviously each of these measures of DCIS progression to IDC is very flawed, getting back to the reason why most websites simply don't state a definitive percentage.

Beesie

One last one, this one from February of this year.  You can see that you hit on one of my hot buttons!  This response was written in response to an article about DCIS that someone posted from the Washington Post:  http://www.washingtonpost.com/wp-dyn/content/article/2008/02/12/AR2008021201809.html

Because DCIS is becoming so common, I can't help but wonder if there is an unintentional conspiracy on the part of the breast cancer experts to downplay DCIS.  If 20% of all new BCs are DCIS but DCIS isn't really BC (or at least, a serious BC), then the breast cancer medical community are winning the battle and the rate of BC is going down significantly, right? 

I find the data that's quoted to be pretty confusing and puzzling. 

• When talking about the seriousness of DCIS, what's often quoted is the mortality rate.  Yes, it's certainly true that the mortality rate is extremely low - only about 1% and only for women who have a recurrence in the form of IDC.  For DCIS alone, the mortality rate is 0.  100% survival.  Does that mean that DCIS isn't serious?  Or does it just mean that the objective should be catch all BC when it's still DCIS because that's the only form of BC that is curable?  Isn't it counterproductive to suggest that smaller amounts of DCIS don't need to be treated?  Wouldn't some of these untreated cases evolve into IDC, thereby increasing the overall mortality rate?
• Another thing that confuses me is when these articles talk about the % of cases of DCIS that will develop into IDC within 5 years.  What's so special about 5 years?  Don't we all know that BC can take years to develop?  I'm not surprised that a relatively small percentage of DCIS cases don't turn into IDC within 5 years.  5 years is a short time in the development cycle of breast cancer.  But what about 10 years?  Or 20 years?  Will 90% of DCIS cases develop into IDC within 20 years?  I was 49 when diagnosed and I sure plan to be around for at least 20 more years.  So the 5 year window is irrelevant to me, as it is to most DCIS patients. 
• Then there's the question of who and what is being included in these studies.  Although I consider myself to be a "DCIS patient", in fact because I had a microinvasion I'm officially considered Stage 1. So my case isn't included in the DCIS stats.  This is true for anyone with a microinvasion.  What this means that all the cases of DCIS that have already developed into IDC at the time of surgery are not included in the stats when discussing what percent of DCIS will become IDC.  Doesn't that significantly downplay the risk that DCIS will become invasive?  Mine already had become invasive but I don't count.  And that's true for about 20% of DCIS cases.  (I believe that about 10% of DCIS cases include a microinvasion and from what I've read, it's assumed that a microinvasion is missed in the diagnosis of about another 10% of cases.)
• On top of that, when these experts talk about the % of DCIS cases that develop into IDC, the only cases that they have to study are DCIS cases that were missed at biopsy, and ones that were found in autopsies.  Well, if the DCIS was missed at biopsy, doesn't that likely mean that it was very small and not aggressive?  So it's no surprise that it didn't become invasive within 5 years, is it?  And when DCIS is found in an autopsy, do they know how long it was there?  Just because it wasn't invasive when found doesn't mean that it may not have become invasive given more time.  
• Lastly, I've often seen the statement that less than 10% of women who had DCIS removed developed a subsequent invasive cancer within the next 5 years.  The implication is that less than 10% of DCIS cases would have become invasive over the next 5 years.  But in fact, this statistic talks to the recurrence rate after DCIS surgery; it's got nothing to do with whether the original DCIS, if not removed and properly treated, would have developed into IDC.  If the original DCIS had not been removed, the rate of invasive cancer within 5 years likely would have be through much higher.   

As you can tell, I'm very frustrated by what I believe to be a lack of proper research about DCIS.  But to end back where I started, I think it's in the interest of the medical community to continue to downplay and mislead about DCIS.  JMO.

Farrah

Wow, fascinating stuff Beesie! Makes me feel better about my decision to do bm ASAP for my extensive high grade DCIS. I didn't even have regrets or second thoughts when told the unaffected breast showed no abnormality when tested post mastectomy. I kind of wonder how much of the unaffected breast is tested post mastectomy. If it's assumed to be okay anyway, maybe they do less frozen sections that what they'd normally on the affected breast when they're really looking for IDC among the DCIS. Maybe there was smaller areas of  low grade DCIS that were simply missed by pre-surgery MRI and post mastectomy frozen sections.

I so appreciate that you've already done all this research and you explain it so clearly. Have you written any articles yourself? If not,I think you should. You're a great advocate for a womans right to make her own choice based on best available (and understandable!) data.

Thanks again! 

TheQu33n

Thank you very much Beesie - I knew you'd come through for me. I'm very grateful that you were able to pull all of these out from earlier discussions, they were all before my time. I'm about to go through each link but really want to emphasize my appreciation that you've done the homework for me.

You have no idea how much you've empowered me today- thank you

Karen 

Beesie

I'm glad that I was able to help.  It is an interesting topic and one that I've never seen adequately addressed (in my humble, non-medical opinion) in any study or article.  And as I mentioned in the earlier post, it's one of my hot buttons.      

Karen, I hope that all the links are still valid.  Some might not be, since these are articles that I pulled anytime from a few months ago to almost a year ago. But hopefully most will be.

Farrah, no, I've never written any articles.  I'm just a layperson who happens to be good at weeding through research and articles.  All I do is pull together some of the generally accepted facts and stats (occasionally adding my own opinion, which I try to remember to always note as just being my opinion).  I'd like to think that this provides a good base of information for the women here who are interested, but in the end everyone needs to work with their doctors to understand the unique aspects of their own situation in order to determine what's best for them.  

TheQu33n

Beesie, they were all valid except for one, don't recall which one, but that's ok. It was actually a valid site still, I just would have had to navigate around to find what I was looking for.

I've spent the last 4 hours going through all of the links and was quite intrigued. The komen article pissed me off because they are still advocating that DCIS is not cancer and is a pre cancerous condition. Now I'm generally not a person that puts a whole lot of emphasis on labels and such, but I'm losing a breast. A breast that I happen to adore. And, I get to go through a SNB as well. I'm one of those DCIS gals that doesn't have the opportunity to choose my treatment.  Well, that's not entirely true, I could choose to do nothing, but then I wouldn't be a very smart girl would I..... So for my own peace of mind, and quite frankly my sanity and self preservation, I need to believe that I'm eradicating my cancer and I would smack the hell out of anyone who negated my DCIS and LCIS!!! I'm having a rough struggle with this as it is. It's not straight forward and it's very complicated.

Whew!! Glad I got that off my chest, no pun intended

Beesie

As another who had a mastectomy not by choice but out of necessity (simply too much DCIS in a small breast), boy do I know how you feel!!!

Did you find anything new in any of the links?  I'd wondered if any of them may have been updated.  Any new perspectives or updates on the data? 

murphmort

Beesie - thank you for the information.  I appreciate your posting and your editorial comments.

To thequ33 - good luck with your surgery. 

Fammy5

I need some advice/comfort, please. I have been recently diagnosed with DCIS with microinvasion.. my tumor is about 3cm.  Another lump was found in the same breast, but we don't know what it is as of yet.  The second "lump" is a little under 2cm and not far away from the first lump.  My husband and I decided to have a mastectomy and the surgery is on tuesday, God willing.  I am also having a sentinel lymph node biopsy done as well.  My surgeon said that she doesn't think anything has spread to the lymph nodes, but she wants to make sure by doing the biopsy.  I have already had my MRI and CAT SCAN... and thank God according to the doctor, the rest of my body is fine. 

To be honest with you, I am extremely nervous and scared.  I just turned 32 years old yesterday and I have three beautiful children. 

It's hard enough for me dealing with losing one breast...  I am trying to think as positively as I can.. but it's hard.. I have a great support system... and I can't ask for anything more.. but hearing from people who have been in my shoes, I think, will make things a bit easier for me. 

 My surgeon said that she can probably do a lumpectomy with clear margins and remove both lumps.. but of course my breast will be smaller than the other breast significantly.  We decided for a mastectomy...

One of my biggest fears is chemotherapy.  I haven't met with my oncologist yet.  My breast surgeon said that because of my age, we need to keep chemotherapy "on surface"... that it shouldn't be completely eliminated from my thoughts.   But if this is dcis with microinvasion, and i'm getting a mastectomy, aren't the chances of needing radiation or chemotherapy minimized?

How long is the recovery from a mastectomy? (if everything, God willing, goes well) ...

 please help... I need some comfort and i'm hoping someone here will make me feel better...

waiting to hear from you....    

TheQu33n

Beesie - No new news, or updates, but for the most part these are fairly recent docs.  I think you captured it all very well. It's enough to hurt your head but I think the bottom line is that there is just a lot that is unknown and there is definitely a need for more studies. I'm just going to cheat and keep an eye on your posts for new information .

Fammy - I am so sorry that you're faced with all this. First of all, HAPPY belated BIRTHDAY!!! I know it had to kind of suck - (mine was on the 2nd).

I'm sending positive thoughts your way, lots of cyber hugs,  and you'll definitely be in my prayers. The only point I would really stress is to arm yourself with information. This site is a great place to start. Hopefully some of the younger gals can provide some words of wisdom (I'm 46), I've not paid much attention to any of the age factors..

Please keep us posted - Your surgery is the 26th?

karen 

mginger

DCIS as Predictor of Future Breast Disease: Presented at ASBD

By Arushi Sinha

SAN FRANCISCO, CA -- April 19, 2007 -- Researchers have found a link between ductal carcinoma in situ (DCIS) and increased risk of future invasive breast disease, according to data presented here at the 31^st Annual Symposium of the American Society of Breast Disease (ASBD).

DCIS accounts for 20% to 30% of breast cancers. When treated appropriately, DCIS has been shown to have a high 10-year cancer specific survival (more than 97%). However, the risk of local recurrence following surgery and radiation for this condition is about 16% at 12 years. There are several factors that may predict the risk of tumour recurrence, including size of the tumour, margin width following resection, nuclear grade, and age of the patient at presentation.

"Our goals in this study were to describe the incidence and development of new cancers in patients with previously diagnosed DCIS, as well as to describe long-term outcomes of these patients," explained Shaheenah Dawood, MD, breast fellow, Breast Center, M. D. Anderson Cancer Center, Houston, Texas, United States.

The researchers reviewed the records of 799 patients with a primary diagnosis of DCIS. Patients who had a prior history of invasive carcinoma were excluded. The researchers also reviewed any reports of a second event, defined as recurrence of disease in the same or the opposite breast. The median age of the study cohort was 54 years, with a median follow up of 2.9 years.

In this study, 45 patients (5.6%) were found to have experienced a second event, 14 (31%) of whom had in situ disease and the other 31 (69%) patients had invasive disease. In addition, the researchers found that the majority of second events occurred in the contralateral breasts (27 patients, 60%). The risk of a second event was calculated to be 6.6% after 5 years and 26.5% after 10 years.

Based upon these findings, Dr. Dawood and her colleagues concluded that the incidence of a second event following a primary DCIS increases with time, and that a second event often occurs in the second breast, with a majority of them being invasive events. "In our study, the second events have a negative impact on survival," said Dr. Dawood.

Anonymous

Well, I'm also not sure on the exact numbers.  But, my first breast cancer was invasive, and on the right breast.  The second was DCIS and on the left breast.  That one was found was calcifications on a routine mammogram.  I have learned, however, not only from reading on this board but elsewhere that it's in my best interest to stay away from the numbers game...caused me alot of undue panic.

Liz08

I agree, it is in my best interest to stay away from the numbers but usually curiousity gets the best of me and I think that goes for many of us.  What's difficult when initially diagnosed it's important to get educated in order to make an informed decision about treament but sometimes the info on the web can be inaccuarte, quite scarry, overwhelming and may not even pertain to our particular case. The members on this forum have helped me to decipher what I have learned.   

Beesie, you again out did yourself.  You are beyond a weath of information. Infact, I think that you can teach a few things to some doctors who po po DCIS w/micro and never mind plain DCIS. In my book cancer is cancer and needs to be taken seriously.     

Jo_Ann_K

Someone guided me to this excellent article on DCIS. It points out statistics in regard to treatment and type. http://theoncologist.alphamedpress.org/cgi/reprint/12/11/1276.  It is listed as valid information as of today.

With warm regards,

Jo Ann from Maryland

Beesie

Jo Ann, great article.  Thanks for posting.  This article provides a really good summary of most of the current knowledge about DCIS progression and DCIS treatment and includes interesting information about research that's underway now.  What I find interesting is that although this is a very comprehensive article (or maybe because it's such a comprehensive article?) it contains all the inconsistencies that I noted in my earlier posts.  For example:

- Talking about untreated DCIS, the article says "These rates of IBC after untreated DCIS are generally in agreement with those reported in other studies (Table 1), in which 47%-86% of women did not develop IBC, even at 20 or more years of follow-up."   So this says that even if left untreated, only 14% - 53% of DCIS cases will turn into invasive cancer, even after 20 years. 

- Later it says "Although DCIS itself is noninvasive, approximately 40% of patients with DCIS treated with biopsy alone, without complete excision or further therapy, develop invasive carcinoma".   Okay, is it 47% - 86% that don't become invasive, or 40% that do?  I know that these stats are not inconsistent with each other, but the intent of each statement seems to be quite different. 

- The statement "The critical aspects of the diagnosis and treatment of DCIS, respectively, aim to rule out concurrent IBC (present in 10%-25%) and prevent development of invasive carcinoma by means of early diagnosis and management of the DCIS" seems to suggests that 10% to 25% of all cases of DCIS already include an invasive component (IBC - invasive breast cancer), which I assume can be either a microinvasion or a larger area of IDC.  This is confirmed later in the article with discussion about the results of a specific study:  "Yen and colleagues evaluated 398 patients with an initial diagnosis of DCIS [42]. Eighty (20%) were found to have IBC in the final pathology analysis"

- On the other hand, just a page or two later, it says "Breast cancer that is diagnosed by detecting incidental calcifications on mammography is pure DCIS in 65% of cases, DCIS with a focus of invasion in 32%, and IBC in 4% [21]."  It further states that 90% -95% of all cases of DCIS are found as calcifications.  Therefore this would suggest a significantly higher rate of microinvasion.  Unless I'm interpreting this wrong and doing the math wrong, this seems to be saying that 30% - 33% of all DCIS cases include a microinvasion.  Hmmm...

- In the conclusion of the article a very familiar statement is made:  "Recurrences after treatment of DCIS are invasive 50% of the time. This underscores the importance of effective therapy and careful monitoring." 

So let's look at all of this information together:

1. Even if left untreated (except by biopsy), only 14% - 53% of women with DCIS will develop invasive cancer. 

2. Anywhere from 10% - 33% of cases of DCIS already include an invasive component. 

3. Even when removed & treated, if there is a recurrence after a diagnosis of DCIS, in 50% of cases, it will be invasive.  (Note that this includes only cases of pure DCIS, not cases where a microinvasion was found at the time of the original diagnosis.)

Wouldn't the 2nd and 3rd data points suggest that if left untreated, the rate of invasion would be significantly higher than what the first data point indicates?  Although not noted, I would expect that the only cases of DCIS that will be left untreated would be small amounts of low grade DCIS.  Why is this assumed to be representative of all DCIS? And why is it that the first data point seems to be used most often when doctors and researchers talk about the progression of DCIS to invasive cancer?  Anywhere you look, if a number is quoted, it's in the range of 25% - 50%. 

I don't mean to tangle people up in knots on this (and I hope that only those interested in this are reading), but I'm fascinated by the whole thing.  This article really is excellent and yet it still has all those same inconsistencies that no one seems to be addressing.  

PhyllisCC

Beesie,

 I appreciate you digesting manyof these articles...I tend to get lost.  I guess the one thing I've learned here is that DCIS is a very inconsistent diagnosis.  The best dx you can get, but most confusing.  Thanks, again, for sharing your expertise.  Phyllis

Karen56

Thanks Jo Ann for a great link.  My husband thinks I'm nuts for continuing to research this stuff.

I just had my 6 month rad check up.  I go back in a year.  Yahoo!  Had negative MRI in August and am scheduled for annaul Mammo in 3 weeks, but rad onc says no good...I need 6 months in between.  I have to call my dr. tomorrow to see why the difference of opinion.

Beesie

Bumping to the top of the list because of relevance to other current threads.

cp418

For what it's worth, my 1.8 cm IDC had a center bulls eye of 0.5 cm DCIS.  Maybe the source?

ghety

 I found this little tidbit about grades of DCIS. Not sure if it fits here but as I sit here with grade 3 dcis wondering how quickly its spreading, waiting impatiently for my bilat mx, I found it interesting. -"Remember, the lower the grade, the more normal the cell. While high-grade DCIS is more likely to become an invasive cancer, it is also the easiest to contain. It tends to grow in a continuous pattern within the duct and is more localized within the breast. Low grade lesions tend to have more gaps and can be more widespread."

http://www.dcis.info/biopsy-examination.html

Beesie

cp418,

That's quite likely, since it's believed that most IDC starts as DCIS. 

AnnW

Hello, I am new to this area.  I am 44,  married with 3 children- 8,10 and 12, and was just diagnosed thru an ultrasound biopsy with dcis, high grade 3 in my left breast.  It was found on mammo and ultrasound.  I then had an mri and something was found on the right breast.  The report said that "nothing on the mri looked particularly suspicious,  however it does resemble the same pattern as the known dcis, high grade on the left breast"   They followed the mri with an ultrasound of that right breast and did see something on ultrasound.  I am now scheduled for an mri guided biopsy.  I am er and pr negative.  I have visited the surgeon who has given me my options and also the oncologist, who told me that I will be fine.  This was my first mammo (I know, I should have started at age 40 but you know how busy life gets!!)  The surgeon wants to see the right breast biopsy before we make any decisions.  Would you know why I would need an mri guided biopsy rather than an ultrasound biopsy again  (they did see it on ultrasound too).   My surgeon told me There is a 1% chance of recurrence with a mast.  and 12% chance with lumpectomy.  In my mind I am going for the bilateral mast. regardless of what this second bx shows.  Someone said to me "don't you think that's overkill, like shooting a mouse with a torpedo?"  And honestly, I don't feel that way.  I have 3 children to see grow up--and honestly  when do they know that magic moment that high grade dcis becomes invasive, well I don't think anyone does, really.  I am so confused.  Thank you all, reading your posts makes me see I am not alone.  Any advice you can give would be appreciated. 

Hindsfeet

This is a very informative and helpful thread.

Rubybuttons, high grade dcis can be wide spread and have gaps between them. The linear lesion in my right breast was the one that showed up on the mammogram and the mri. But my final pathology report showed a 100% high grade dcis in the almost quantrant breast removed with .03mm between each lesion or infected duct. The multifocal did not show up on the mri or mammogramn.

In regard to recurrence...I had a recurrence after my one year lumpectomy. The doctor said my recent high grade dcis was probably there last year...and although the last year surgery had wide margins that high grade can have gaps between lesions. And my microcalifications last year were scattered and this year linear. Both high grade. 

Adding this because I believe dcis aren't all the same. bbarry 

Dora783

I know this is an old thread, but it is very relevant to my current situation.  I had a lump approx 6cm x 5cm by 3.5 cm removed and in it was a 2cm mass of ADH and in that a .8cm mass of DCIS (solid and cririform, intermediate nuclear grade, no necrosis present).  Around that, the surgeon removed  2 x 1.2 x .5cm of tissue for margin that had no atypia or malignancy identified.  

 I am seriously considering skipping radiation.  The margins seem huge to me, the tumor fairly small.  I am 41 yrs old.  I wish I could make better sense out of these statistics to know 1) what is my risk of reoccurance with and without rads, 2) what are my chances of getting a new cancer even if I do take rads?   

 I am leaning towards don't do rads now but faithfully go for my mammograms and biopsy/lumpectomy anything that comes up.  I didn't find the biopsies or the lumpectomy all that bad and I think I would rather weather that than radiation.  . . . unless the stats are really sayingthat my next tumor would likely be invasive leading to chemo or death.  

I know this is a topic to discuss with my radiatin oncologist- but it is almost 2 weeks till my appointment!!!!  Anyone who can weigh in on this decision in the meantime would be appreciated.

Eldub

I'm so glad this thread got bumped - there is one ton of useful information here (thank you, Bessie!)

Dora - to respond to your queston - it's really going to be a "what is right for YOU" decision.  Some stats I've seen lately put the risk of a high-grade DCIS recurrence being invasive as closer to 70%, rather than 50%.  That's for high-grade.  But other recent things I've read say that intermediate grade DCIS is more similar to low grade than high grade in terms of recurrance risk.  If that turns out to be correct, then that is in your favor.  And big margins and small lesions are both very favorable prognostic indicators.  Was your DCIS ER+?  If so, Tamoxifen would be another option that would reduce your recurrence risk.  But if the DCIS was ER-/PR-, then some studies say that your risk of recurrence is higher - as is the risk of it being invasive if it recurred.

I'd suggest talking with both a Radiation Oncologist and a Medical Oncologist before making a final decision about radiation.  The Medical Oncologist is in the best position to look at the "big picture" of your situation and advise you about ALL of your treatment options.

Good luck to you, whatever you decide to do!

Linda

Hindsfeet

Dora, I don't know. I skipped rads and tx...and I had a recurrence. I still am not comfortable with fighting fire with fire, or want the side affects of tx. If I knew what I know now, I would had first gotten a mx with reconstruction. I hate losing my breast, but the likely hood of another recurrece is less if there are no ducts.

Beesie

Bumping this to the top of the list, given current discussions about DCIS and the risk of invasiveness.

Beesie

Bumping again, as this might be informational to those who are newly diagnosed.