DCIS to invasive statistics?

Here are some statistics for you.

http://www.jco.ascopubs.org/cgi/content/abstract/16/4/1367

35 out of 707 had invasive recurrence after DCIS. Approximately 18 out if 707 had stage IV invasive recurrence or distant metastasis.  

Bump.

Please read my story.  It's better to not try to predict.  Mine was diagnosed at Stage 0

3-5 years after it was already Stage I 

Katie, I haven't read your blog because I prefer to read this website, where over the years I have read the stories of hundreds of women who've had DCIS.  We all have our stories to tell.  And, while one individual's anecdotal information is interesting and can be helpful, anecdotes are representative of a single case only and often are not good examples of the experience that most women have and/or can expect to have.  So while I think it's great and can be very helpful when we share our stories on this board, I worry when someone tries to pass off their own story as a warning or example to others.  I worry even more when this information is available only away from this website.

As for it being "better to not try to predict", the question that started this post asked specifically about whether there is "data out there that indicates the odds of  DCIS becoming an invasive cancer".  I have a research background and a very strong interest in this topic, so over the years I've spent a lot of time trying to find the answer to this question. There is no clear answer, except to say that the risk of DCIS becoming invasive may be quite low for some types of DCIS (mostly those that are small and low grade) but is likely very high for other types of DCIS (mostly those that are larger and higher grade).  In my posts in this discussion thread, I've shared whatever I've found in my research so that others can read the same materials, come to their own conclusions and maybe even go further with the investigation.  Some of us here are very interested in this type of information while others are not.  I understand that completely, but if you are not interested in or disagree with the topic, then it might be better if you simply stay out of the discussion.

But, before you go, I do have a question about your diagnosis and the progression of your breast cancer.  You say that you had DCIS and then 3-5 years later you were Stage I.  Were you treated for DCIS and then did you have a recurrence that was invasive?   If so, this isn't particularly unusual, since approx. 50% of all recurrences after a diagnosis of DCIS are invasive.  Or was your DCIS initially not treated and then, by the time it was treated, it was Stage I?  That too would not be unusual.  Even at time of diagnosis, approx. 20% of women who are thought to have DCIS (from needle biopsy results) in fact turn out to have some amount of IDC, either a microinvasion (as I had) or more.  So DCIS evolving to become IDC is clearly not as unusual as some doctors pronouncing in the media lately would like us to believe.  That's what I've tried to show with the information provided in my posts.

Most studies - and there have been lots of them - show recurrence rates after a mastectomy for DCIS to be in the range of 1% to 2%. 

DCIS cannot recur in the other breast.  But anyone who is diagnosed with BC one time does face a higher than average risk of getting BC again - a new primary breat cancer, unrelated to the first cancer - either in the same breast (if she didn't have a mastectomy) or in the contralateral breast.  What the actual risk level is depends on the individual, their age, their breast health history, their family health history, etc.. but on average a lot of oncologists put the risk level to be at about 0.5% per year.

I think that in 5-10 years some of these questions will be answered.  I had breast reduction in 2007, was diagnosed with a large area of  DCIS grade 3 three weeks ago.  According to the plastic surgeon, the breasts removed from both sides were healthy.  I don't know how well they inspect everything. So to me this my have developed in less than 3 years.

The findings in that abstract don't surpise me too much (20 of 285 patients originally diagnosed with DCIS on biopsy turned out to have sentinel node involvement), other than the one woman who had no evidence of invasion on pathology of the excised breast tissue, but it was still found in the sentinel node.  Now I'm not gonna sleep tonight!

I would be grateful if anyone could reply to me to put my mind at rest.

Thanks

Shirley - 

I'd suggest making another appointment with your Dr just to discuss exactly what the abnormalities found were and what it all means.  Ask for a copy of your pathology report.

If you're still concerned after that, take your path report and your slides (I'm assuming that somewhere in the hospital's Pathology Dept are a bunch of slides of your tissue, you'll have to pick them up from Pathology, sign a release form, and sometimes you have to pay a fee for them)  to another Dr and get a second opinion.   Make sure you're seeing breast specialists.

That's really all I can think of. 

Thank you Beesie!  This is a wealth of information.  I'm so glad I've asked here. 

Beesie you are an angel from heaven. I have to copy your stuff and read it to my husband. He still thinks we're back in 1994 to ignore and go forward. These statistics are gold and all the articles in one place...priceless. I feel guilty for benefiting from all your hard work. Docs get $200/hr for this information...lol

I thought it might be useful to bump up this thread.  It is old but a couple of years back I looked for more/newer data and didn't come up with anything different.  I also rechecked all the web links that I included in my posts; at that time they were all still active.  

With this being such a hot topic these days among the medical profession focused on DCIS, it would be interesting to do a review of the data to see if there are any new studies (studies with real data, not opinions) that draw new or different conclusions.  I do check for this regularly but I haven't done a really deep dive exclusively on this topic for a while. Something to do in my spare time!

Marie,

There is histological and nuclear grade. Histological grade refers to how much the tumor cells resemble normal cells. The lower the grade the more they resemble normal cells. Lower grades grow relatively slowly. Higher grade in contrast appears less like normal cells and are thought to grow more rapidly. Therefore Grade 2 and 3 begin to look less and less like their normal counterparts. In my little bit of research and understanding from professionals, Low grade DCIS is associated with a lesser chance of recurrence or to develop new cancers.

Nuclear grade refers to the rate at which cells are dividing to form more cells. Lower grade is usually associated with slower division of cells. In contrast higher nuclear grade is associated with cells that are dividing more often, faster and more aggressive than those that divide less often.

Higher grades, esepcially grade 3 indicates a more rapid growth of abnormal cells.

You will often see the term comedonecrosis as well. This indicates plugging of the ducts with dead cells, the abnormal cells are growing more rapdily and do not have enough 'nourishment' to survive and is considered to be indicative of a high risk of escalation of the disease process.

Hope my words came out accurately, makes sense and answers your question.

Hello everyone-

I am new to this forum and new to breast cancer.  At the end of May I was diagnosed with DCIS in both my breasts.  I have not made a decision on my form of treatment and I am having a very difficult time deciding what will be best for me long term.  My dcis was picked up in my first mammogram, age 39, since then I have turned 40 in July. I have three locations of calcification's that have been biopsied, One in the left breast, dcis, micro-papillary and solid, grade 2-3 with comedonecrosis present, no invasion  present Right breast two spots-dcis cribiform, nuclear grade 2, comedonecrosis absent no invasion present, third spot shows atypia cells-close to chest wall. I have tested negative for the BRCA1 and 2 gene. Family history-paternal aunt diagnosed with 3rd stage ovarian cancer.My head as been spinning, I have met with four surgeons, 3 have suggested bilateral mastectomy, the fourth suggesting I will do well with either mastectomy or lumpectomies.  I am afraid and confused and paralyzed by my fear.  I'm thinking based om my age and grade that maybe the bilatteral mastectomy would be the right thing to do, then there is always the SLB to worry about and the cause of lymphodema, I am very healthy and active and do not want to loose the ability of my arms. Then the idea of reconstruction and what I would need to go through with expanders and what not. I didn't mention before but I just got married in July right in the middle of all of this.  I guess I'm looking for some thoughts on my situation and how others would go about moving forward given my situation and having made difficult decisions of their own when diagnosed with DCIS.  Any thoughts would be greatly appreciated, thank you-

4caseygirl-My case is extremely similar to cailindearg (right down to our old bra size,lol) except I am er+/pr+ . I finally decided on a BMX because it was slightly better as far as the recur risk goes. That and i'd only need half the rad treatments (before BMX rads were still a possibility). I know the recur risk is usually bigger w/lumpectomy/rads and then there are the possible s.e.'s like lung cancer or heart attack years later. And still a recur can happen and i've read many times about women who've had it happen. All of this factored in my decision to skip rads and Tamox. My M.O. and R.O. said studies(very little studies) show no real help for an early stager so I could skip these treatments and avoid the s.e.'s. I did have a VERY close margin,meaning my "dirty" tissue touched my chest wall like siamese twins. That's not great because I have a slightly higher risk of recur with that. Overall my risk is small they say. I finally found a PS and started T.E. expansion last month. It's not great but it's not too bad. I hurt for a few days after each fill,2nd fill especially. But nothing a Tylenol couldn't cure. I think it may get worse with each one but some girls never have any pain. I am thin skinned so that's an issue too. I really arm wrestled myself over every decision but I came to a conclusion one day-the doctors don't have enough data to be 100% sure about anything they tell us. Therefore I can't be 100% sure so I chose the lesser of two evils and hope it was the right choice,time will tell. Bottom line go with your instinct and don't have regrets because we can never know the best thing to do. We all have to live with our decisions. Good luck.