Stanford long-term DCIS study

Baywatcher:  I have to say much of what you have written I totally agree with except I don't think that DCIS is overtreated in the sense you are relaying...  Doc's use scare tactics and THAT is definately overdone.  I have said this before but I too felt that my DCIS could be handled by removing the lesion (I also didn't feel sick and the lesion could only be found on breast MRI) and doing "watchful waiting"... I was prepared to do just that along with some alternative med different supplements, exercice etc...  But my doc's started calling one after the other telling me what a bad idea that was... all had a stake in my decision with the exception of my primary care doc - who also made a call telling me I was "waiting too long to decide".  I had already relayed my decision to him AND I only found out weeks later that at exactly the same time as I was dx'ed his wife was and so he had been steeped in the local doc's (the ones who did have a stake in my having surgeries) fear mongering and so he could not be an objective advisor for me at that time..

The very big question here is what is inside your breast before surgery. There is no way to tell for sure what is lurking in all that tissue. The MRI may have exposed a spot, the FNB may have exposed some DCIS, but there is a lot of breast tissue there. They have absolutely no way of telling what is in the rest of that breast. Even if they do a lumpectomy and margins. My BS drove that home with me yesterday as I argued and argued, I do not want my axillary nodes removed,

 I do not want Lymph edema and don't puncture my nerve because this is my right arm that I do absolutely everything with. And she could not promise one of those. What do I get? An empty spot where my perfect little A cup breast was (my husband loved them). No guarantee that my right arm won't blow up like a balloon and live with that awful Lymph edema for the rest of my life??? No promise that there is not many more cm of IDC or DCIS in there. This stinks. And we found it early and that's a good thing? I work with a lady who told me she will never get a mammogram. I replied you would be willing to die a painful death with breast cancer? She said that' what those wonderful pain meds are for...

Here is a question, and I am especially interested in your answer. (Bessie I hope you will chime in.)

I ocassionaly write to journalists when they get stuff wrong on BC stories.

I was looking at a network's version of this story, and it made me see red.

They did not differentiate between DCIS and the general term "breast cancer" and it made it seem like this study applied to everyone with "early-stage breast cancer". 

(Which is through 3a or 3b I think.)

Since DCIS and LCIS are not terms used by the general public what is the best wording?

I know a lot of you are not thrilled with "Pre-Cancer", although I have a doctor who refers to it that way.

Would "non-invasive" cancer be better. Or just Stage 0 breast cancer?

It may need to be longer, like Stage 0 breast cancer that has not broken out of the ducts?

Pre-invasive is what I use and believe to be the best response... for me that means the cells are cancer cells BUT they are contained within the duct.  This is exactly what the medical community is struggling with Cookiegal.  There are many in the medical community that would like to take "carcinoma" out of the title "Ductal Carcinoma In-Situ" becase of the concern about "over--treating".  I am very concerned about this because then DCIS  will be lost in the discussions about breast cancer (IMO) and that is a dangerous thing to happen..  Then we could be looking at more under treatment of the disease..  It's a slippery slope IMO...

(sorry didn't see Beesie's answer looks like we repeated each other a bit!)

Please post for everyone to Google DCIS and Her2/neu. If your path report doesn't TELL you where you are NEGATIVE or POSITIVE, request that this test be done. It could save your life. ALL DCIS IS NOT THE SAME. Her2/Neu positive women are SIX TIMES more likely to develop INVASIVE BREAST CANCER. DR. BRIAN CZERNIECKI-look up his publishings on PUBMED. He also develped a VACCINE now in clinical trial at PENN MEDICINE. I GOT this vaccine, had no side effects and IT TOTALLY ate up my DCIS. Check out my website, www.shelleydodt.com if you are interested. 

If one had one small area of DCIS that was fairly small, why not at least go for the lumpectomy?

I mean they are not fun and can have some lingering pain, but I don't really know anyone who has had their QOL ruined by a simple lumpectomy.

Hi XmasDx,

I am so amaze by your information posted on 3/17/11 and want to know if you are able to help me on my diagnosis. Per Biopsy report I have DCIS, grade 1, tumor size .37cm in greatest linear extent 6 tissue core, ER/PR+. Before the surgery my BS told me that my turmor size is 4CM (which I cannot fine in the pathology report but  I was able to confirm with my BS Dr. and he recommended Mastectomy).  I follow his recommendation and had simple mastectomy.  Now I rec'd the Final Pathology report everything's else is still the same expect the tumor size is now 7 mm and my cancer has not metastasis including my Lymph Nodes.  I have a 0.7 cm from deep margin.  After I read more on the DCIS and this discussion board I feel that I had been cheated on my decision for Mastectomy.  I feel that I lost my right breast for nothing.  I could have save my breast and not have the big surgery when I tumor size is only 7mm.  My BS Dr. never discuss in details of the final pathology reports and when I tried to get the details from him it seen that he tried to avoid the questions and rather told me that my pathology report is good and no cancer is spread further.  Am I crazy to feel this way and keep on wanting to find out details from my BS Dr?  I'm confused right now.  2^nd I met with the Oncology Dr and not conformable with his recommendation either. After I met with my Oncology Dr. he made me worried and don't feel confident that he know what is he doing.  He asked me questions in regards to my treatment that I should be the one asking him and was told by my PS and BS that the Oncology Dr will answer my questions when I get to meet him then when I finally got to meet this Onco Dr he did not know a single thing about diagnosis(he did not take time to read up on my file before we met)  So I left his office feeling sad and upset and concluded that I would never see him again and I need to do research on my own more before I request the 2^nd opinion Dr for my treatment.  So far I have not rec'd any concreted information in regards to my treatment?  So I was hoping you could help me on any suggestion of treatment or point me to right directions so I can do my research further. tried to do research online and read books in regards to the option treatments for my DCIS but have not come close to any supporting documents that will help answer some of my questions and concern. 

Your help is greatly appreciated.

If not already mentioned, I want to point out that this debate - whether to remove surgically or 'watch and wait" is ongoing with regards to prostate cancer. I am pasting three articles - a newspaper, a prof journal and an AMA abstract. The issues are very similar - an iffy screening test - the PSA which may result in false positives, current practice is surgery, gradual realization that some prostate cancer grows slowly and they will die from something else long before they die from prostate cancer, but inability to identify these cancers. And yet, few men are taking the watch and wait option - they hear the word cancer and want it removed, I wonder why???  I also wonder if the men who continue to choose surgery are made to feel that they are over-reacting?

http://jama.ama-assn.org/content/304/21/2373.abstract

http://articles.chicagotribune.com/2010-03-28/health/sc-fam-0325-senior-health-prostate-20100328_1_prostate-cancer-aggressive-cancer-diagnosed

http://lansing.injuryboard.com/miscellaneous/doctors-find-watch-and-wait-approach-to-lowrisk-prostate-cancer-is-as-effective-as-aggressive-treatments.aspx?googleid=270460

Julie E

and LMEN - you have a right to copies of all of your pathology reports and screenings.  

LMEN,

First off, I have to say that I am far from a DCIS expert... you are Beesie's territory there!  She knows A LOT about DCIS!  But I will chime in, since you asked, with my experience; keep in mind please this is just MY experience/opinions...and I get a little wordy (a little?)!

Second, as Jelson pointed out, you have the right to copies of your medical records including path reports and screenings.  Obtaining them isn't always easy.  (My surg onc's office always makes me a copy of path reports for my files, but I have not ever been able to get deeper info - YET - such as mammo reports or operative reports, slides, etc)  Perhaps contacting Medical Records at the place you had the procedures performed will get you somewhere if the doctor's staff does not give you a copy.  Or you could ask the receptionist/scheduler on your way out if you can get a copy.

Third, what procedure gave the bs the impression that the DCIS area was 4cm?  Did you have an MRI?   In my case it was an MRI that made the DCIS area look 6.3x2.7cm.  Pathology then found .8cm. I feel you absolutely have the right to know exactly what gave the doctor the impression that the area was 4cm.  I would push back on this until I had an answer.  You made a big decision based on that dimension, you have a right to know where it came from.

Fourth, in my case (and maybe yours too?) PATHOLOGY was wrong!  I pressed the doctor on why there was such a discrepancy, they RECHECKED my tissue and found multiple foci of DCIS and 3mm of IDC.  The first time they did the path they had not been comparing my tissue to my MRI and did not hone in on where to look, the 2nd time they did.  Only because I questioned it though.  Now I feel I can never trust that they really looked at everything.  My opinion, a sloppy rushed job by the pathology team, no excuse.  But that's just my take on it, maybe they did really look at everything now.

Fifth, you have a right to find doctors that you are comfortable with, that answer your questions, and that you trust.  That goes for your bs, your med onc, and all of your treatment team.  Keep shopping if you don't like them.   Doctors and nurses are busy people, patients are pushed through, in my experience (not just bc dr's) it is HARD or impossible to find a doctor who can really take the time they would like to step back and evaluate our entire situations, which improves treatment and reduces errors.  I thought maybe that's what the nurse navigator was for, but no, that's not what she does either.  WE need to look at our reports, question, compare, research, and get 2nd opinions.  I'm curious, what was the recommendation of the oncologist that you did not like?  I would think if they got all the DCIS, and the margins are clear, that you are done for now except perhaps Tamoxifen and annual or bi-annual follow-up mammos' and perhaps MRI's?  Are they recommending something additional for you at this time?

Lastly for now, okay so let's say you had the right breast removed for 7mm of grade 1 DCIS.  If the doctor thought there was 4cm of DCIS there, you really didn't have much choice but to have it removed - 4cm is a lot.  There may have been some that pathology missed.  And if not, before I got my revised path report back, it helped me to understand that the doctors need to make decisions based on what appears to be there.  If MRI shows over 4cm of DCIS, that means mx.   They can't really just keep biopsying little sections and safely tell you that you DON'T have anything to worry about and don't need an mx.  So they recommend mx.  So that is what you did.  I went into my decision for mx knowing that some day, perhaps in less than 10 years, a lab would be able to tell me if MY type of DCIS would have been likely to turn invasive.  Likely being a key word.  Breast cancer is sneaky, DCIS is sneaky.  It's unpredictable.  We just don't have all the answers we wish we had...yet.  And you needed to make a decision.  In addition (in my case) I wanted to avoid radiation if possible.  If the bs would have done a lumpectomy, I would have needed rads.  Now I realize many people get thru radiation therapy just fine, but I did not want to do it.  At all.  Tamoxifen would have been pushed more as well, and I did not want to do that either.  So in actuality, I wanted a mastectomy, because it meant (probably) no rads, no Tamoxifen in my case.  

Not to scare you, but what I do when I get worried that perhaps I had the mx (or was going to have the mx) "for nothing" I would lurk on the Stage IV forum.  It always scared me and upset me, threads about DCIS coming back Stage IV and things like that, but it was/is a reality check for me that ALL bc needs to be taken seriously, and that if the worst thing I did was have a mx "for nothing" that's a heck of a lot better than not treating it and having it progress.   The Stage IV ladies are tough as nails and have to endure so much, seeing what they go through ensures I won't let myself wallow in my uni-mx misery.  Since my first diagnosis on 12/13/10, this board has always shown me not to spend one second feeling sorry for myself because I could easily see that almost anyone here would trade places with me in a second.  It's ok to mourn your breast, mourn the decision you had to make, perhaps mourn and get angry about sub-standard medical treatment, but then we have to move on and accept that what is done is done.  

Have I even begun to answer your questions or been helpful at all?  I hope so.  I wish you peace with your decision, and a cancer-free future!

Hi all,

I just discovered this thread of heated debate today: this is quite a discussion. My story is that from 2004 to 2007 I had been dxed as having ADH in both breasts, and each time there was a surgical removal. After 2007, I had been problem free for two years but then in Dec 2010, they find DCIS on my left side.

This tells me even though I have multiple surgical removals of problem areas, things still evolve into a more advanced level. In 2005 my bs actually already suggested MX, but I didn't want to do it.

Now with the DCIS in the size of 4cm, it seems to me that the reasonable solution is to do a MX. I think for some people, the alternative method or natural healing may work, but you really need to believe it works. To me, this "watch-n-see" approach does not work well with my psyche, because I have been waiting to go through different tests/biopsys in order to determine the type of surgery I will do. I was dxed in January and my surgery will take place in mid April. This three months is already a torture to me, and I can't imagine waiting for every six months for results. Also once the DCIS turns into IDC, then your risks of being metastatic are higher. Although with a different philosophy, the level and stage of cancer may be viewed as something that does not matter.

 I agree with all Beesie has said. I also think it is a personal choice, you have to be comfortable with your choice of the treatments. Just because you choose to do an alternative method, doesn't mean others choosing the surgery route are crazy or philosophically inferior.

Take care,

Bella  

evebarry wrote:

"Last...I don't think there are a lot studies done on women dx with dcis with lumpectomy only and recurrance. More and more dcis women lately seem to be choosing lumpectomy only."

The topic of this thread is a paper reporting results of two randomized clinical trials (RCT) on DCIS run by NSABP.  B-17 now has 17 year median follow-up testing lumpectomy alone vs. lumpectomy + radiation therapy.  The results have been discussed earlier in this thread.  There are also 3 other clinical trials making the same comparison with results pretty consistent with this one -- radiation reduces the recurrence rate by about 50%.

In addition to the RCTs there are other studies looking at results from different treatment approaches. 

 That's a pretty high number of studies.