DCIS facts and misconceptions

maize

In my experience, some doctors are impatient, irritable, rude, arrogant, think the patients are ignorant, and don't want to bother to answer questions, as if the patient is wasting their valuable time or would be too ignorant or stupid to understand if they did explain--they become exasperated or dodge the questions...and some doctors are empathetic, compassionate, get where you're coming from, know that you're scared, want you to understand what's going on, and keep themselves up to date on the latest treatments, etc., because they really want to be healers.  Some don't seem to realize that the patients usually didn't go to medical school, so they ask questions and need really clear, specific, and sometimes detailed, answers in plain English, are scared, and have many unanswered questions that they won't comprehend the answers to unless they are explained fully.  I think giving the patient hope is one of the most important things.  Knowledge is power, so they say, and ignorance can be deadly. Of course, they also say that ignorance is bliss...

terrikoala

Wow..thanks so much. I am having surgery+radiation for DCIS July 30 and have been educating myself and what you wrote helped me so much. I am large dense breasted, 65 and never missed a mammo  and this started with calcifications in 2011 and this year they multiplied and clustered in the milk duct.

Terri

Infobabe

tbenton 

Do you know the grade of DCIS?  The size lesion and are you hormone positive?  Do you have in your possession your path report? 

terrikoala

 I was not offered my path report and I was in a state of shock so did not ask for it. Can I get it from my surgeon now or should I wait until I see him at the hospital? He drew me pictures, told me it was small and non invasive and stage zero  and told me all about DCIS. I am 65 and very much post menopausal. I have little to no estrogen but only side effects from that are sweats and flashes forever and ever apparently.

CookieMonster

tbenton - You could call and ask for them to mail it to you, or ask to come by the office and pick one up. Until they do the full surgery they won't know the full detail on it anyway, but they might have done some tests. I don't think they tested my biopsy for hormone status, so they might not have done that anyway.

If you want a group of ladies to hang out with, there's a July surgery group that I started. There you can read, ask questions, and generally hang out with us who had or are having surgery in July. The subject is "Anyone having surgery in July 2012 - want to wait together?"

terrikoala

Cookiemonster.

Thanks so much. From your cancer  timeline you have really been through it all...bless you.

Is the July surgery waiting together group on this forum? I searched but can't find it. Point me please. My surgery is July30  and would love to wait together.

PS..changed my username from tbenton to terrikoala

CookieMonster

It's in the Surgery - before during and after forum.  Let me see if I can put in a link for you to use.

http://community.breastcancer.org/forum/91/topic/789155?page=1 

This isn't a link, but if you copy paste that should work.

In some ways I have been through the ringer, but in others I've been lucky - I haven't needed chemo or radiation, so in that way I'm lucky, but surgically, I've been through a lot. I'm also lucky in that my body seems to heal well and quickly. I've been ahead of the curve on all recovery times and haven't needed pain meds outside of the hospital. I should also credit my surgeons, I think they did a good job which probably helps on the pain end of things.

CLC

The healing power of cookies!!! 

Amazing the relativity of feeling lucky...I, personally, am grateful for it and embrace it.

terrikoala

Yep that took me right to where I wanted to be.  How very fortunate that you required neither chemo nor radiation but still a lot  of trauma has been done to you. I also heal quickly and follow orders well. My biopsy incision healed very quickly. I think they are going to use that incision to go back in....enlarged of course. Thank goodness for the 'clip' he put in there to mark the spot.

I will take the time to digest that section you sent me to. Have haircut soon today.

terrikoala

CLC..I see that you had stage 0 and grade 1 DCIS  which is what I am dealing with right now. Can you share with me why  a year from the lumpectomy you had the Mastectomy?

Thanks

CLC

Sure.  First, to clarify, my lumpectomy was really an excision of adh (the stage before dcis).

In April 2010, I had calcifications.  They watched those.  I had ADH in October 2010.  It was not DCIS.  The ADH was excised (similar to a lumpectomy) and I went to every 3 month surveillance.  My next mammo in April 2011 showed more calcifications, they changed by fall, and was dx as dcis.  I went at that point to mx.  I chose the mx over lumpectomy for a couple of reasons.  First,  I did not want to have radiation.  My dcis was low grade and unifocal, so lumpectomy would have been a reasonable option, but I was vehemently opposed to radiation.  I have a history of lung disease.  Also, I wanted to avoid systemic treatments.  Second, given that my left breast kept showing stuff (calcifications, then adh, then new growths, then dcis), I had been considering mx even if it wasn't dcis at that point.  The constant testing and worrying for the previous year and a half was straining.  It is easy for me to imagine that for someone else, lumpectomy would be the obvious choice.  It just didn't make sense for me. 

I hope this helps.  If you have more questions, fire away. 

These decisions are so personal and there is definitely no one size fits all answer.  Wishing you all the best as you move through this difficult process.

Claire

Shayne

Thanks for sharing your story Claire - its bound to help a lot of people trying to make decisions.....

Infobabe

CLC 

Well explained, Claire.  I totally get why you did what you did.  

I too am DCIS, grade 1.  Mine is more straight forward without your complications.  But like you, I cancelled rads even though I was already tatted up.  I also have left breast.  I thought I would have the MX but on a second opinion decided against it and no Tomoxifen either.  The mental and emotional strain is a lot to bear.

 terrikoala

I am 76 and age has a lot to do with how each of us go forward.  So, I had the lumectomy with big margins so I am just getting mammograms going forward. If I should ever get a recurrence, I will go straight to the mastectomy (MX).  

And do get that path report.  You won't understand it right away but you will.  It has evrything to do with how your case is treated.  As stated, we are all different but we have enough similarities to help each other.

terrikoala

CLC...Thanks so much. I have always had large dense breasts which required extra mammo tests and in June 2010 they found calcifications in both breasts. This June the ones in the left breast were more numerous and had clustered in one area; thus the biopsy and the small cancer found in the milk duct.  The MX option did not even cross my mind when he offered it as an option since the cancer is stage 0 and not invasive and small. I am not sure  if I really need the RADS but guess thats to get what he cannot get. He said 75% chancehe can get it all with clean margins because he does not  want to breach the duct walls as the cancer could then become invasive (if I am repeating myself I apologize). At this point I think the RADS concern me more than the surgery.

Infobabe...still not sure if the Path report they have from the biopsy has all I need to know so should I wait for the one after the surgery? 

Tick tick.....12 days to surgery

CookieMonster

Terri - regarding path reports, I'd get copies of both. I have copies of ALL my path reports. Also, if you have DCIS and the cells "get out" from the ducts, they still don't become invasive. There's apparently a molecular change that they have to go through to become invasive cancer - I think it was mentioned here fairly recently.

terrikoala

Cookie Monster, I will call today and see if they will fax me the biopsy paths. The hospital will be calling this afternoon to do my pre-op stuff and then Friday I go to Prim doc to get pre op tests and EKG. Just had them done in mid June but they are not 'new' enough....goodness gracious!

Beesie

When I first wrote this thread I was hoping that it would be a place where women who are newly diagnosed with DCIS could find some basic information about DCIS. I also was hoping to clear up some of the misunderstandings about DCIS that we see so often in the questions and posts in this forum.  On all the other threads throughout this forum we discuss our individual diagnoses and concerns; I had hoped that this thread would remain focused on information about DCIS. 

To that end, I am reposting here one of my earlier posts from this thread, in which I provided links to a number of websites and articles that have excellent general information about DCIS.  There's lots of information out on the internet about DCIS but much of it isn't vetted or reliable - these sites are.

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

Ductal Carcinoma in Situ  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   theoncologist.alphamedpress.or...   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  moffitt.usf.edu/moffittapps/cc...

Because my focus with this thread is to provide general information about DCIS, and because I don't want this to get too cluttered and confusing, I've only included websites and articles that provide a broad and full perspective on DCIS - I have intentionally not included any of the dozens (or hundreds, actually) of articles or studies that talk to specific issues such as the need for radiation, the Oncotype test, etc., etc..  Here again we have lots of other discussion threads in this forum that cover those topics in more detail.

I hope that these websites are helpful and provide answers to those of you who are newly diagnosed and have questions about your diagnosis and treatment options.

Infobabe

terrikoala

All path reports are important.  Get them all.  To explain:

My biopsy said DCIS, grade 1, scant necrosis, hormone +.  

Lumpectomy said, scant DCIS, no nacrosis, size .9mm by.4mm.  

Recission said no evidence of anything, all margin.

So you see the progression and how each report tells us something different. 

They inform us on what we should do next. 

GreenMonkey

Beesie, you are earning your wings here! Thank you for the ongoing clarificationS. You are doing so much for all of us. tHANK YOU, THANK YOU!!!

terrikoala

Beesie....Thanks for all the  new references. When I was diagnosed a week ago today the first place I found when I googled  DCIS was breastcancer.org. I had never heard of DCIS before. The site is so clear and thorough and wonderful complete with diagrams of the different types. I learned so much and that site is what I sent to my close friends so I didn't have to explain it to them. Let them digest what they wanted from the info.

I too hope for women with DCIS to be on this thread as I go take this journey. I am still in the 'HUH?' stage. No denial but so full of fear and questions so I will treasure the support I hope I will get here from now on.

terrikoala

You  ladies are so right and they mailed the biopsy paths yesterday. I will probably have to scan them in there so someone can explain them to me.

Infobabe

 terrikoala

I am really glad you are doing this.  I don't know if you can scan them in here but we will still go over them with you point by point.  

I know mine by heart now.  It is rally strange how our minds synthesize all this info leading us down the path to our decisions. 

terrikoala

Info babe...I am grateful you guys pushed me a bit to get the paths from the biopsy. I am good at reading our blood labs but have never seen a path report before so get ready to educate me ok. It may be here today...fast local PO service here. She practically could have made a airplane out of it and send it over here. His office and hospital are attached and 5 miles away.

optimist3

Beesie, your report was very helpful.

However, I have a question: I was diagnosed with IDC in situ with lobular features in my left breast.

I had a lumpectomy 2 weeks ago together with the removal of 2 sentinel lymph nodes. The nodes turned out to have a 1 mm and a 1.8 mm cancer in them. Now, the docotrs want to remove all the lymph nodes (about 15) next week.

I am VERY hesitant to agree to this. What do you think and what is your experience over all these years? 

Infobabe

optimist3

I so regret you are going through this but IDC is not in situ.  It is invasive.  

I am no expert but I think you need the node removal.  Your doctors seem cautious and are going through this one step at a time.  Each procedure informs and tells you what you must do next.

Shayne

Agree with infobabe.  Hope you have a good BS that you trust - and please talk to them about precautions and risks of lymphedemia.  

CookieMonster

Optimist3 - I respectfully disagree with Infobabe and Shayne. My BS told me that recent studies have shown that removing all the lymph nodes has not improved outcomes for patients, all other treatment being the same. And as we all know, removing lymph nodes can present their own problems. I'd recommend doing your own research and see what you can find from recent studies.

Infobabe

 CookieMonster

Exactly what you advise for a person already showing cancer in the two lymph nodes removed?  Let it all go?  Take one at a time?  I know this is serious business but so is not enough treatment. 

CookieMonster

My understanding is that chemo is advised once cancer is seen in any lymph nodes so taking out more nodes does not improve the outcome as chemo is supposed to take care of the cancer if there is any in additional lymph nodes.

That is what MY BS told me, but different BS's may have different ideas which is why I recommend doing one's own research if at all possible. I didn't end up needing to do my own as my lymph nodes showed clear.

Infobabe

CookieMonster 

OK, that might be an alternative.  This is getting complicated and those doctors need to come up with some answers.