DCIS facts and misconceptions

Anonymous

Hello everyone,

THANKS!! for such a great topic. I learned more here than from my doctor.

Norah

Mooleen

I agree, this information is terrific. When I was diagnosised I didn't even know what it was. I have learned a lot in the last five months.

cinnamonsmiles

bump for infobabe

LAstar

This is an interesting research article about breast density and later risk of cancer after treatment for DCIS.  

http://www.ncbi.nlm.nih.gov/pubmed/20929881 

Beesie

lastar, I'm not sure why they did that study specific to DCIS and I suspect that the results are not unique to those who have DCIS but more likely apply to anyone who's been diagnosed one time with BC.

It's well established that extreme breast density is a high risk factor for breast cancer - either DCIS or IDC.  Most breast cancer starts as DCIS and evolves to become IDC.  So for those who are diagnosed, whether they have DCIS or IDC is often just a question of timing; was the cancer found early, while it was still DCIS, or was it found after it had already evolved to become IDC?

It's also well established that anyone diagnosed with breast cancer one time, whether it was DCIS or IDC, is at greater risk (than the average woman) to be diagnosed again, in either breast.

So to me the conclusions of the study seem rather obvious.  High breast density leads to more diagnoses of BC, either DCIS or IDC.  A diagnosis of BC increases the risk that one might be diagnosed again.  Therefore those who have high breast density and who have been diagnosed with BC one time have a greater risk of being diagnosed with BC again vs. those who do not have breasts that are as dense. This added risk is greatest when compared against those who have the lowest level of breast density.

I wish that they'd put the research money into a study on one of the many things that we don't understand well about DCIS.  Or am I missing something here? 

LAstar

I'm still catching up on the lit!  This is the first I've seen of the link with breast density.  I wonder if there is something about the breast density itself or if the detection is just lower in dense breast tissue so that smaller cancer is missed until it has progressed.  

Beesie

lastar, that's a great question.  It used to be believed that breast density was a problem only in that it made BC harder to detect and as a result, women who had dense breasts often were diagnosed with more advanced BC than they otherwise would have been if the cancer had been easier to spot sooner.

But this all changed just a few years ago when studies started to come out that showed that breast density itself is a significant risk factor for breast cancer. Each study has somewhat different results but overall it appears that women with extremely dense breasts (at least 75% density) have anywhere from a 3-fold to 6-fold increase in risk vs. those who have the lowest density (0% density to something like a 10% or 20% density).  

Lots of women hear about this and really panic. There are a couple of important things to understand. First is that this increase in risk compares women with the most density to those with the least density. So it's not as though women with extremely dense breasts have as much as 6 times the BC risk of the average women.  The average woman has a lifetime BC risk of 12.1%. Someone with extremely dense breasts does not have a 72% risk of breast cancer!  All these studies measure the BC risk for those with extremely dense breasts against the risk of those who have the lowest possible density.  I don't the risk level of someone with very low density but I've read that women with no major risk factors generally start with a BC risk of about 3% - 5% (i.e. that's the risk we have just for being women).  So that would put the risk level of someone with extremely dense breasts somewhere in the range of at 18% to 30%.

The second thing to keep in mind is that it's those who have extreme breast density (75% density or higher) who have the greatest risk. Many women are told that they have dense breasts but it doesn't mean that their density is at the highest level.  A large percentage of women have some degree of density but only around 10% to 20% (if I recall correctly) have extremely dense breasts.  

Lastly, breast density is not something that came be felt.  Many women with fibrocystic breasts (about 60% of women have fibrocystic breasts) have breasts that feel thick and dense.  But that doesn't mean that they have high breast density.  Breast density can only be measured by what shows on the mammogram - it's not how your breasts feel.  

Breast density is a major risk factor that all women should understand.  Unfortunately I don't think it's well understood.  Too many women aren't aware that breast density is a risk factor, and too many women overreact when they hear that they have "dense breasts".  Most younger women do have breasts that are more dense, but for younger women that's normal and unless they have much greater density than other young women, their risk might not be increased by much at all.

What everyone should do is find out their breast density from the radiologist who reads their mammogram.  I know that I have extremely dense breasts because the radiologist who reads my mammo has noted it on my mammogram report.  And because of how dense my breasts are, she recommended that I get annual MRIs in addition to mammograms. MRIs are not affected by breast density.  Although there are issues with using MRIs as a screening tool (too many false positives), they can be a very important part of the screening program for women with extremely dense breasts. And if it's not possible to get an MRI, those with dense breasts should ensure that they have digital (rather than film) mammograms.

Some picture of breasts at different degrees of density: http://www.halls.md/breast/density.htm 

Of course none of this is specific to DCIS.  If you search the High Risk forum on this board, you'll find lots of information about breast density. 

GreenMonkey

I was diagnosed with DCIS in right after an annual mammogram.  The year before, the technician didn't get a clear enough picture and they asked me to come back but I said no. I received 4 phone calls from various people (my obgyn, the radiologist, and 2 nurses) and I told all of them no. I had no family history, I was still menstruating and because I was healthy, in shape, on zero medication, I felt I was somehow excluded.  

My DCIS was small (5mm) but it was high grade with dead cells outside the ducts (comedo something?). My obgyn suggested I get a second opinion and when I did (at MSK) I was told my left breast also had a suspicious area that was never reported by the initial radiologist.  So, another mammo, then another biopsy, with a diagnosis of ADH (pre DCIS). At that point I was happy, thinking, okay, now off with both of my breasts and be done with it.

My final pathology report showed LCIS which was not picked up in both sets of mammo's and in an MRI as well as ADH and ALH (pre lobal cancer). 

At this point, I feel like the luckiest person on the planet! and I know I made the right decision (but picked the wrong plastic surgeon).

Today, I have two even mounds and I think they're cute! and I'm looking forward to watching them grow, exchanging them to "squishies" and decorating them in nipples, or maybe gems, and tattoo's that look like areola's or maybe lotus flowers... decisions, decisions, decisions....!!!

Oh... one more ramble... regarding lympedema.  I INSIST they do the blood pressure and the IV and blood work on the foot.  I have had to fight everytime to get my way and I'm seriously thinking I'm just going to say I had auxillary nodes taken out so they don't give me such a hard time.  Even my (new) PS challenged me and she is incredibly compassionate.

Thank you again for this GREAT thread Beesie! You and Whippet are earning all sorts of gold stars in my book of Good, Smart, Women, 

Catherine

A very informative post.  I had DCIS nine years ago and everything is fine now.  All of us need to be our own advocates.  It's important to listen to the doctors but make your own informed decisions too.

akmom

I only know I have dense breast tissue because the surgeon who performed my lumpectomy remarked that I was so dense that my tissue was dulling her blade. She went through five blades for my 6 x 3 x 1.5 cm section (said her 'record' was 8 blades).

I am still angry at the first surgeon I saw who told me "you have atypical cells, follow up in 6 months with a mammogram". I specifically asked if it mattered whether it was digital and he said no, it doesn't make any difference. This guy must have known that my breast tissue was dense from my file. LUCKILY for me, the other surgeon at the clinic came back from vacation, reviewed my pathology and scheduled a lumpectomy for what turned out to be DCIS.

Up to this point (just finished rads) nobody has mentioned MRIs or digital mammograms. I see my oncologist in 6 weeks and I will certainly be asking a lot of questions about the followup plan. Thank you again, Beesie, as always you are an absolute gold mine of information!!

CandDsMom

BUMP

P0000368

Hi Beesie

Would you be open to an email rather than a post. I have just had a mastecomy for DCis and they found multi-micro-invasions or spec of invasion. I have been reading the posts and your posts interest me alot.

Thx

Dooley45

Thank you Beesie  - your info is always so good,clear and understandable fo all of us who are going through this new adventure in our lives.

Dianne

painterly

Hi All,

So much to learn so much to read. I am very grateful to Beesie for her research and summary.

I have been recently diagnosed with a new primary in the left breast after 3 1/2 years since my IDC in the other breast. I feel I have been hit by a truck and can't get up of the floor! Just as I was beginning to put breast cancer behind me, they find something on my mammo a few weeks ago which is only 6 months since I had my last mammos done which were clear. I decided to change my fall mammos to the spring because in the fall we are preparing to go away for 6 months and the waiting for the result (same day) at the last minute was giving me extreme anxiety. So, as I said, I moved my annual mammos to the spring and bingo they now find something after just 6 months. I have totally freaked out. The ultrasound technican made me very nervous when she said I had dense breasts and asked if I was on hormones. I said no not now. But yes, I was up until my last diagnosis but promptly stopped. (I got talked into the hormones, by the way, because of my low estrogen. I was never on birth control pills except for a few months, I couldn't tolerate them for some reason or other that I forget now).

Last time I had 4 rounds of chemo because they found an isolated tumour cell in the node. BS had called the node technically clear but onc. called the ITC positive. Actually, the node was tested twice and remained inclusive.  I have since learned BS and onc. don't agree on treatment for early stage breast cancer, mine was 7mm. I now agree with BS, it seems chemo did nothing to prevent this new primary.

BS said my new cancer is non life-threatening and contained in the ducts, and will be about 3 - 5 years before it moves out of the ducts and becomes a threat.  He is sceduling an MRI to learn more.

Have I got it right that unless the sentinel node lights up during surgery they won't remove a node? I am hoping for no node removal as the one node that was removed on the other breast is still a problem in that I have to keep re arranging my arm because something feels like it is getting stuck all the time LOL.

And what do I do about blood pressure and blood taking now that I have both breasts involved. I see one gal offers her foot. What is the common practice? Just to alternate arms each time?

Wish I could have had DCIS the first time. From what I am reading here it seems it may be a lot simpler and the healing a lot faster (almost a walk in the park so to speak) especially, if there is no node removal. I have told my kids that it is pre invasive cancer and no treatment is required but that the MRI will tell more.

Have I also got it correct that DCIS cancer coming in contact with breast tissue cannot grow and flourish because these DCIS need a change in the cell structure to  do so? The microscopic hole where I had the needle biopsy is now very itchy and I thought OMG is some of the cells that are coming into the surface going to cause IBC? So again, I am grateful for this thread. Perhaps the itch is just the healing process.

Here is a question that I often ponder. What exactly is the role of radiation? Is it to zap away any escaped cells? But then if the above info about DCIS cell structure is correct based on current thinking, why would we need radiation outside the duct area of the breast, unless IDC is found. I am not planning on radiation since it is on the left side, and I hope wide margins will be okay and this will do until the day comes when I may have to say "off with their heads". (I am 67 - so no spring chicken which is also a factor when deciding on treatment).

Thank you.

LAstar

What grade is your DCIS?  If it is low to intermediate, you might be okay taking a watch-and-wait approach.  That is rarely recommended with high-grade DCIS.  I wish my experience had been more of a "walk in the park," but I am having a BMX in 2 weeks because my DCIS is extensive and high grade.  Someone called it "not life-threatening but breast-threatening." I feel like it took me too long to fully understand that DCIS is cancer and it is serious. Because it is not invasive, you will probably not need chemo.  That is your only free pass.  SNB are often done, and given your history, might be highly recommended by your BS.  I don't want to freak you out!    I just want you to realize that, in some cases, there is a need to act quickly.  I'm glad you are getting an MRI.  It was very helpful in my case to see how much more extensive it was compared to the results of the mammo.  

LRC_SF

Thank you for putting this together.  Having been diagnosed recently, I'm trying to find out all I can so I can decide my best options going forward.  

CherylinOhio

Wow, that is some good info!!  I was originally dx with stage 0 DCIS BUT after surgery there were many pos nodes and now I don't know what I am.  I am pretty sure it's not IBC, I need to ask my onc and see what they put down. 

SelenaWolf

Question... is it possible to by-pass DCIS completely and go right to IDC?  Or does all IDC start out as DCIS?

BLinthedesert

Selena, no one truly knows the answer to this.  DCIS is called a 'nonobligate' precurser to IDC -- meaning that not all DCIS progresses to IDC, but IDC does "better" in an environment with DCIS.   There is a large amout of variabilty in the types of cancer (both invasive and not), some share the same genetic material (in a person) and some don't -- this would suggest that some IDC is arising directly from DCIS, and yet, there are many instances where the IDC is arising independent from DCIS.  

Beesie

Selena, I agree with BLinthedesert that I don't think anyone really knows.  

I have read that about 80% - 90% of IDC starts as DCIS but I don't understand this. I know that BC can start in the ducts or in the lobules or in the breast tissue in-between.  So I realize that BC can start out as being invasive right from the start, if the cancer develops initially in the open breast tissue.  What I don't understand is how "Invasive DUCTAL Carcinoma" can start anywhere but the ducts.  If the cancer didn't start in the ducts (as DCIS), then how is it IDC?  

What I also don't understand - and what I think is the big medical mystery - is why some cases of DCIS remain DCIS for a long time, expanding and spreading throughout the ductal system before finally breaking through the duct in one or two spots, while other cases of DCIS immediately or almost immediately break through the duct and expand as invasive cancer.  There are cases like mine - over 7cm of very aggressive DCIS with just 1mm of IDC - and cases where the tumor is almost entirely IDC with just one or two tiny areas of DCIS. I've tried to find studies or articles that talk about this but so far I haven't had any luck.

Infobabe

Catherine 

Your DCIS was 9 years ago.  What treatment did you have? 

Infobabe

Beesie

What would you think of my situation?  Age 76.  Total hysterectomy 33 years ago.   DCIS Stage 0, Grade 1, hormone high positive.  No HER test done, left breast.  

Lumectomy May 1, resection May 15.  Tomoxifen a few weeks after rads done.  Simulation for rads June 11, Monday.  

Neither RO or MO will order Oncotype.  I don't want to do rads.  Is this reasonable?  I have a call in but not yet arranged to go to The University of Michgan where I may get the Oncotype test.  I live about 70 miles away so did not pursue this sooner.

I would very much like your opinion. 

Beesie

Infobabe, from your signature line I take it that the size of your DCIS was about 1cm? Do you know what the size of the margins were after the resection?  Did you end up with reasonable margins, at least 3mm? 

Based on the Van Nuys index, with DCIS that is Grade 1 and is less than 1.5cm in size and with margins that are at least 1mm in size, you have a 5-year recurrence risk of 3.8% and a 93% chance of being disease free (i.e. no recurrence) for at least 8 years.  http://www.breastdiseases.com/dcispath.htm  

The info on the following website, although quite old (it's from 1998) is the best I've found with specifics about DCIS recurrence rates based on the size of margins and pathology of DCIS.  They state that a grade 1 DCIS with margins of 1mm - 9mm will have a recurrence rate of 7% without radiation, over 8 years. So it's pretty much the same projection as the Van Nuys. http://theoncologist.alphamedpress.org/content/3/2/94/T2.expansion

The problem with both of these sites is that the margin range they use is quite large - 1mm to 9mm.  From all I've read, I think that a 1mm margin will lead to a significantly higher recurrence rate than a 9mm margin.  So that's something to consider - the 7% recurrence rate over 8 years is an average and your risk will be higher or lower depending on where you fall in the 1mm to 9mm range.  

Many studies have confirmed that radiation reduces recurrence rates by approx. 50%. So if you have radiation you can cut that average 8-year recurrence rate from 7% to approx. 3.5%.  For many women, that amount of risk reduction is worth it.  And if your recurrence risk is higher because your margins are on the low side of the 1mm - 9mm range, then your benefit from rads will be greater.

All that said, if it were me and I was 76 and I had a 1cm Grade 1 DCIS lesion, provided that my margins were at least 3mm (that's just my personal line in the sand), I'd skip radiation. If my margins were smaller, I'm not sure what I'd do. 

Infobabe

That is about the best explanation I have had.  Thank you.

 

It is a little hard to read the path.  It appears to me that there were several margins on different sides of the tissue.  It also appears to me that the margins aren't that big.  The resection indicates no pathology of any sort.  So it makes me think the margins were too small and the resection just took out more tissue.  I am not interpreting the reports that well.

I am so back and forth on the Oncotype.  My RO is reportedly very good.  I hope this means no burns, no lung and heart involvement and no cellulites.  I should probably try to get that second opinion from the University.  Time is fleeting.

Infobabe

Sorry.  I cannot get the message processor to drop all the garbage it picks up not even when using the edit function.

1boob

This is a wonderful thread. Thank you For the information which I have copied and saved. I am about to see my breast surgeon next week. I had comedo DCIS, 2 or 3 focal points, and a lot of it, no sign of invasive cancer, a total mastectomy with 5 lymph node removed (all cancer free). I don't really understand why he took away 5 of them but I guess he was convinced that lymph node removal was necessary as he expected to find IDC in the pathology report. I wish I was having phantom breast pleasure... no such luck. Stabs and fizzes. But these are getting better since my op 9 months ago. What I do have is surface pain/sensitivity above the scar making any prosthesis extremely uncomfortable. The pathology report did not test for hormone receptor involvement. What I would like to know (surgeons don't give much info in the UK) is the following:

1. I was told there is a tiny bit of breast tissue left in the dog end of the mastectomy. I have 8 mm margins. The oncologist said radiotherapy was unnecessary. Does that sound OK to the rest of you? Maybe it is too late anyway to have radiotherapy on the dog end.

2. How often should I have a mammo on the remaining breast. Once a year? More often? What about  ultrasound as an alternative? Is it reliable? Here in the UK, where i am having private treatment, I am not sure if I can get a mammo privately. On the NHS mammograms are every 3 years. What would be the best way of catching cancer early in the remaining breast? There was absolutely no physical sign of my DCIS in the other breast - not even thickening.

Beesie

1boob, I was about to 'bump' this thread for newbies when I saw your post. I had missed it previously; sorry for not responding sooner. 

The reason that your surgeon took 5 nodes might be because 5 nodes "lit up" with the dye or isotopes.  If the dye/isotopes moved so quickly through 5 nodes, that would mean that any cancer cells that might have entered the nodes could have moved just as quickly from the first node to the 5th.  So all the nodes that lit up would need to be removed and checked.  Glad to hear that they were all clear!

8mm margins are great!  Most surgeons are happy with 2mm or 3mm and "ideal" margins are 10mm.  So at 8mm, your margins are close to ideal and a far way from being concerning.

How often you should get your remaining breast checked depends on your risk level and how difficult it is to screen your breast. My remaining breast is extremely dense and my risk level is moderately high (my own history of BC plus my mother and aunt, plus 4 previous biopsies on my remaining breast making mammos more difficult to read) so I get alternating mammos and MRIs every 6 months.  The original plan was just for a mammo every year but it was the radiologist reading my mammo films who suggested that more frequent screening would be good because of the density of my breast.  In your case, if you have no high risk factors, if your other breast has never presented with any problems and if it's easy to read with a mammo, then an annual mammo probably is sufficient.  What does your doctor say?  And what are you comfortable with?

maize

Beesie,

Thank you, thank you for making things so much clearer!  This is what I needed--the facts spelled out.

Shayne

sometimes talking in percentages just confuses me more.  Im on the fence about doing hormonal therapy.  ER/PR 100%.   Not sure if it lowers it enough to put up with possible SEs of hormones.  My MO was not pushing me, said if my SEs are bad, I can just not take them.  She said I had a great prognosis, but did not give me percentages for recurrence.

Infobabe

 Shayne

What grade are you?  We are about the same.  I started big T a couple of days ago.  I am only taking one every other day for a couple of weeks and then I will go on to one a day.  My oncologist has the same attitude as yours.  

But then, I still have to have the MX.