DCIS facts and misconceptions

Beesie

This post has been moved and updated.  

New Location:  Topic: A layperson's guide to DCIS

http://community.breastcancer.org/forum/68/topic/790992?page=1#idx_1

Sherryc

Bessie I did not have DCIS but my DIL's mother was just diag with it.  I found this very informative, thanks for taking the time to type it up.

Emaline

Thank you so much Beesie.  There have been so many of us newbies here recently and while we can find so many of the basic questions answered, this post everything into a nice neat post. 

weerah

Thanks Beesie. This helped me a lot!

Deirdre1

<thumbs up>  Once again you are a gem!  THIS should be printed out and handed to eVERY person who is dx'ed with DCIS.... Thanks!

AgathaFran

New here and have recently been given an intial diagnosis of DCIS. Beesie I found this summary really informative and easy to understand. Many thanks! 

sunshinegal

Wonderful - thank you Beesie!

tacichon

Beesie, thank you so much, I was just diagnosed June 8, saw a sugeon this past Thursday and he already said I could be looking at 6 weeks of radiation therapy and the anti cancer drug, I am very new to this disease and  very scared. Thank so so much for taking the time to  post, this is the most valuable information I have read..

 God bless

AmyD

bump

zanoza

bump for newbies like me

thanks a lot beesie!!!

marie5890

(I wonder if this could be made into a "sticky" post. I think it's invaluable for women who have the beginning questions on DCIS?)

Sherryc

Bessie I copied this and sent it to my DIL and she was so thankful.  It helped her to understand her mother's DCIS so much better.

Tildymom

WOW, you know your stuff.....I am consumed as of last week to find anything and everything out there is to know about DCIS, as I was told last week that that is what they are lookig for on me.  I had a sterotactic biopsy done last Thursday the 16th due to them finding a small cluster of microcalcifications, BIRADS4.  Everything you stated above, is exactly what I had found plus some!  Thank you so much for putting it all together.  I plan to copy and paste and print to refer back to it.  I am currently awaiting results and driving myself crazy.  OH, question to ask you.......should I be more concerned that they have seen all the calcifications....being that I have extremely large dense breasts?  That is my fear, that they cant see it all...........of course I am still in the waiting game phase to see what this small cluster is in the milk duct.  I do however have numerous other things going on such as cysts, fibroedenomas and a few masses that appear to be B9.  AGAIN, thank you Beesie for all your info.  YOU ROCK!!  HOW ARE YOU DOING????

Sherryc

Tildymom have you had a breast MRI.  If so all cancer would show on that.  I just learned this morning that Govenor Rick Perry signed into legistalation that all women have to be informed of their breast density.  they are also working on a bill that all Dr's have to tell us all of our treatment options.  I so hope that passes because I was not informed of all my options.  I had dense breast for 14 years and did not even know it until I got cancer and actually received copies of my mammo reports and every year it was noted on the mammo's but no one ever told me about it.

Tildymom

Sherryc,   I have had numerous mammos since August of 2010, shoing lots of different things...cysts, fibroednomas, masses etc....but when I went in the beginning of June (follow up) they found something new...small section of microcalcifications...saying this could very well be DCIS, so they did yet another US and then needle biopsy---but were unable to get to the spot needed, then another mammo, then sent me back another day for a stereotactic core biopsy.  They told me that I should know something within 2-3 working days.  This was Thursday June 16th, so hopefully by Tuesday?  Never mentioned anything abot CT scan or MRI to me.  I am at MDA in Houston as I live in Houston.  Thanks for caring!  I have had a lot of trouble trying to get anyone to talk to me about it.

CandDsMom

MRI will show a lot - but the only definitive way to know exactly what is in there is by surgical pathology. There are women on these boards with negative MRIs and occult disease that pops up on final pathology for sure. It is rare but it happens. just wanted to add a small point of clarification.

Beesie - great summary, thanks for sharing this.

Sherryc

Tidymom will be praying for B9

Allenan

Hello,

I just read the post by Bessie.  Thank you very much.

I had lumpectomy for IDC but also have DCIS.  All the IDC was taken out and BS went back in 2nd time to clear margins.  However margins did not clear as I have DCIS.

I am having another re-excsion and feeling disappointed.  My question is:

1) Do I need another SNB. From you post, it looks like I DO NOT need.   They took 9 nodes and it all came back negative.  That was on May 20th.   Anyone else had IDC and DCIS existing at the same time?  If so, did you have to have MORE THAN 1 re-excision. 

Would appreciate some feedback.  Thanks

Beesie

I'm popping back in to add some more information. 

My original post focused on addressing what seem to be the most common concerns of women who are diagnosed with DCIS - these are topics and questions that I've seen come up over and over again from women who are newly diagnosed or going through treatment. 

What I didn't address in that post are the basics about DCIS - how is it diagnosed? what are the different types of DCIS? what are the treatment options? etc., etc.. Rather than write something up that is sure to be incomplete - and that I'm certainly not qualifed to write - I prefer to direct people to the websites and articles that I've found to be reliable and comprehensive.  

So here's a list of  websites and articles that have great information about DCIS:

DCIS - Ductal Carcinoma In Situ  http://www.breastcancer.org/symptoms/types/dcis/

Ductal Carcinoma in Situ  http://www.dcis.info/index.html

NCCN Guidelines for Patients - Breast Cancer  http://www.nccn.com/images/patient-guidelines/pdf/breast.pdf  Not specific to DCIS, this report, which is updated annually, discusses in detail current treatment standards for all types of breast cancer. These are the treatment guidelines used by most breast cancer specialists in North America.  The Physician's Guide version of this report is even more detailed but requires registration to be able to access. http://www.nccn.org/professionals/physician_gls/f_guidelines.asp

Diagnosis and Management of Ductal Carcinoma in Situ (DCIS)  http://www.ahrq.gov/downloads/pub/evidence/pdf/dcis/dcis.pdf   From 2009, this is a very long and thorough examination of DCIS and DCIS treatment.   Here's another link with the same data - I think this one might be easier to wade through: http://www.ncbi.nlm.nih.gov/books/NBK32576/

Current Treatment and Clinical Trial Developments for Ductal Carcinoma In Situ of the Breast   http://theoncologist.alphamedpress.org/content/12/11/1276.full.pdf+html   This one is from 2007 so it's not completely up-to-date on the research but the explanations of DCIS and DCIS treatment are good - and it's not as long as the previous article!

Ductal Carcinoma In Situ of the Breast  http://moffitt.usf.edu/moffittapps/ccj/v6n3/article5.htm

kittymama

Beesie, just wanted to pop in to say hi..hope that you are well.

kathyob

Thank you so much for all this wonderful information Bessie. It has given me a lot of comfort.

mommyrnx2

What is your opinion with extensive DCIS (I had BMX 5/26) and the margins in the deep tissue were       1mm in one spot and 2mm in another, intermediate-high grade.  The doctor says radiation is not needed, but I just don't know what to do.

ProudMom_Wife

Thank you Beesie.  When I first found out I had breast cancer, but did not know the extent, I came to these boards and read some of your posts.  You were so informative and came across so confident that it motivated me to do as much research as I could for my particular situation.  Because of this I was not afraid to ask questions and I feel that I made the best decision for myself based on the information I got from researching, seeking out professional opinions and choosing the right team of doctors for me to help in my fight.

Thank you for sharing, it has made a difference in my life.

jammies

Bessie:  I know you've heard it many times, but let me reiterate and tell you...YOU ARE AN ANGEL...YOU ARE REALLY MAKING A DIFFERENCE IN PEOPLE'S LIVES.  THANK YOU!

Beesie

I thought I would bump this to the top again since I've noticed that there are a number of newly diagnosed women who've joined us here in the DCIS forum. We all tend to have many of the same questions when we are first diagnosed so hopefully this post addresses a number of them.  

More importantly, note the links to some great resources about DCIS in my post of June 20th. The best thing that anyone newly diagnosed can do is educate themselves so that they understand their diagnosis and treatment options and can ask the right questions of their doctors.   

And thanks to all for the "Thanks!".  

ConnieBall2

Hi and thanks for all your posts. I'm new. Just got diagnosed. Haven't met with surgeon yet.Would appreciate your take on pathology report....what it means. Here goes:

Clinical Diagnosis & History: Left breast 5mm new density with close cluster calcification

Specimen: Left breast far posterior mid-breast.

Gross description: labeled "left breast far posterior mid-breast" & consists of multiple core fragments of yellow to tan soft tissue aggregating 3x2.2x0.2cm in greatest dimension. All in one.

Microcropic: Sections reveal multiple foci of ductal carcinoma in situ, w/central necrosis, intermediate grade. The ducts are expanded & exhibit a cribriform pattern w/punched out secondary spaces & central necrosis. The ducts are lined by neoplastic cells, which have moderately large nuclei w/rare mitosis. The carcinoma in situ extends to the adjacent lobules. Extensive microcalcifications are identified. Additionally, there is papillary apocrine metaplasia identified.

Diagnosis: Ductal Carcinoma in situ, cribriform type w/central necrosis, intermediate grade; microcalcifications identitied.

cycle-path

Connie, that's almost identical to the pathology report I received after my biopsy, though I didn't have anything extending into the lobules, and I don't recall "papillary apocrine metaplasia." That sounds to me like a cousin of ADH. Maybe someone else will give you some info on that.

As I understand it, you have several areas of intermediate-grade DCIS. The grade refers to aggressiveness, and yours is moderately aggressive. Cribriform is one of the shapes the cancer cells take, and it's considered one of the "better" forms to have. It appears to me you also have some LCIS, which is considered more of a pre-cancer. If all you had was LCIS it would probably be left alone, but since you'll probably be having surgery they'll likely take that out too.

As I said I don't know what papillary apocrine metaplasia is, but it sounds similar to ADH (atypical ductal hyperplasia), which is a benign but suspicious cellular change. Assuming this is correct, it's another one of those things that they'd leave alone if it was the only thing they found, but they'll probably take it out just to be sure.

Probably the surgeon will want an MRI to be sure there's nothing elsewhere in your breasts that was undetected in the mammo, and there may be an ultrasound too.

If was going to bet, and if nothing else is found in MRI or ultrasound, I'd bet that it will be recommended that you have a lumpectomy and sentinel node biopsy. Assuming the nodes are clear, radiation will be recommended but no chemo. And, depending on some other stuff such as the estrogen receptor status of the tumor, Tamoxifen may be suggested or recommended.

If all the above turns out to be true, you're like me -- someone who got the "best" kind of breast cancer one can have. Easily treatable with few long-term consequences and a low recurrence rate.

I'm sure someone else will tell you more (and may even disagree with me), but the real answers will lie in further tests down the road. Keep us up to date, ok? 

ConnieBall2

Thanks for the reply.  What is LCIS?

What is a sentinel node biopsy? Where is it?

I'm really scared because I have to go through this clinic here in Santa Monica (Venice Family Clinic) on Medi-Cal.  I feel really vulnerable that I'm not going to really be monitored with oversight and get as good care as someone with insurance. Do you know anything about that?

Will I need reconstructive surgery and is it covered under Medi-Cal?

What is IORT in your description mean?

cycle-path

LCIS is lobular carcinoma in situ. Same as DCIS but in the milk lobes rather than the ducts. I don't know why it's considered less serious than DCIS, but apparently it is.

Sentinel node biopsy (SNB) is the removal of one or more lymph nodes under your arm to check to see if they have any cancer cells in them. They do this to see if there has been any spread of the cancer that wasn't otherwise detected. "Sentinel node" refers to the fact that they do something to figure out which nodes are the ones draining the breast area -- the closest ones are the "sentinel" nodes. Those are the ones that are removed and biopsied.

A lumpectomy is almost always a very minor surgery, but the SNB is slightly less minor. While I wouldn't say it's a big deal, there's more discomfort from it and more recovery time than from the lumpectomy.

Given the size of your tumor, 5 mm, I'd say there's very little reason to think you'll need reconstruction. Mine was twice that size and while my lumpectomy breast is now a little smaller than it was, the difference is very slight. I can't imagine being vain enough to care about the amount of size change I've experienced. Hardly noticable. 

Let me give you a page where you can read about IORT. It's available at USC, which might take Medi-Cal. http://www.breastcanceriort.org/

I'm afraid I don't know a lot about Medi-Cal and nothing about Venice Family Clinic. I think if I were you I'd contact the local Susan G. Komen affiliate to see what resources they have. http://www.komenlacounty.org. On one of their web pages they list the organizations to whom they have given grants, and I believe many of these organizations may be able to help someone like you. (Venice Family Clinic is one of the organizations listed there.) http://www.komenlacounty.org/grants/current-grant-recipients/ 

ConnieBall2

Thanks for your reply Cycle-gal.  I haven't even seen surgeon yet, not til 8/2. I'm afraid of this thing growing and that I will fall between cracks with Clinic and Medi-Cal.  I feel time is of the essence. I don't feel I can take the time to work through the maze at USC medical because of my fears of this thing and my limited time and resources.  The surgeon now has the biopsy images & pathology report.  I do not even know how I'm going to deal with post-op because I don't have insurance or help at home. I think the surgery will be at Santa Monica/UCLA across from doctor's office.  You can never reach anyone directly, at least I haven't been able to. I am truly alone and scared that I won't be overseen and monitored.  I had to call Venice to even get to come in & hear results.  I don't know that they would have even called me or when.  I had to stay on it. The results were also sent to Westside & they never called me back to come in. I've made a mess trying to deal with both clinics (I had been going to Westside Family Health Center - a dinky clinice for years - another revolving door place, rarely saw a dr. only practioners, so I went to Venice Family Clinic only recently). I don't even know how I would get another opinion on anything under my circumstances.  I am really scared & have been in acute anxiety for months even before this finding.  When I read stuff on this site & other boards, I see all of these different things people have done.....& I despair because they have insurance & have had personal doctors already. Don't feel I have any options, but to go to this one surgeon. Don't even know how I can take care of myself post-op. No one to help me at home.  I feel at such a loss and am scared for my life. I know my anxiety & manner puts people off, but I am so desparate.  Susan B. Komen only gave me 2 places for support groups...I've gone to one.  I didn't ask about places that take Medi-Cal (I just signed up for it....don't have card or info packet yet....& don't know how I'm going to work through government agency on phone to get any answers).

What is IORT?  I don't even know if I can get it...whatever it is. Don't even know how I could get a referral in my circumstances....having to go through Venice Family Clinic.

Now with this sentinel node thing..I don't know if they'll do it...before or during surgery. Don't know how I'll take care of it. Everything hurts my body....even biopsy.  Breast are tender anyway.

So scared and feel very hopeless and afraid for my life.

cycle-path

Connie, you don't need to worry a lot about time going by. August 2 should be fine. If what you have is pure DCIS it's not a major issue. As someone said on another thread, "You're not on the Titanic."

Although it's certainly possible you could get "substandard treatment" at Venice Family Clinic, what you're going through is very common, and doctors deal with it all the time. If you had a complicated case, concern about substandard care would be warranted, but I don't think your case sounds at all complicated. It's the most common kind of BC there is.

That being said, you DO need to advocate for yourself and stay on top of things. That's one thing that a family doctor will do that Venice Family Clinic probably will not do. You have to take more responsibility than a person with insurance would have to take.

Don't worry. You're going to be fine as long as you continue to follow up.