has anyone with dcis decided to wait

Yes, I have waited.  Trust you own instincts.  December 2010, I was told I had DCIS.  Had a lumpectomy a week later only to find out the surgeon took the wrong part of my breast. I went for second, third and fourth opinions.  The only opinion I got was surgery, however it varied from just a lumpectomy to a mastectomy to a bilateral mastectomy. If I could have gotten two doctors to agree on the same treatment, I might of done something.  I could not understand why with DCIS which is stage 0, the only answer is surgery. I would be the perfect candidate for a clinincal trial but I could not get a doctor to listen to me.  Why not have a mammogram done every three months and decide on the outcome of the results in order to save the breast.  Well, just to let you know.  I had a mammogram last week and now the same breast center that diagnosis the DCIS has come back with benign finding in both breasts. Recommendation: return in one year for annual mammogram.  If I had done what every doctor I have spoken with insisted, I would not have breasts right now.  Trust you own instincts!!!!!   Doctors can be wrong.

Christina, I'm not sure it's good to leave dcis in your breast. At least surgically have it removed via lumpectomy. If you have high grade 3 or multifocal you might even consider a mx. I wish I had. At first I didn't take dcis seriously thinking it was more of a pre-invasive cancer, not really cancer. I've not had 3 recurrences the last one being idc with the HER 2 positive factor. So...now I am doing what I should had done earlier...to remove a breast that wants to make cancer cells. Like someone said here earlier it's not a matter if it will happen its when.

sadie,  normally wth DCIS you do not need to rush in for surgery and have time to explore options.  I waited 2 months from diagnosis to surgery and the docs were ok with that.   But, mine was significntly smaller that yours...not sure what difference that might make.

Sadie

Look for post from Beesie.  She is the go to for DCIS

I also think it depends on how large your breast are. 6cm is a fairly large area.

good luck

Jo

Its your right to do what you feel is in your best interests. However, I can only tell you that I had LCIS which is lobular in situ,ok and many drs feel it will sit there and not do anything. However, the research states it should be treated. Research from US to Germany to China but I decided not to do anythng in 2002 but monitor with occasl mammograms. Ok I did not listen to my drs...now in Dec I was diagdx with invasive ductal carcinoma and its too late to get a nipple sparing mx so now I can get a uni or a bi and you know what. I am not playing with this bad boy anymore. I am gonna get a bmx and get rid of this problem. I dont wanna lumpectomy or uni. I am going to try my best to follow my drs advice and regain my health. However, thats only me,1 persons case and I respect all of the opinions of the people here whether I agree or not. I will defend their rights to state their ideas and I will listen. I hope you all fare well in this journey that we have not chosen but was thrust upon us by the br canr.

sadie-when i was diagnosed with stage 1, grade 3 tumor, I was initially told it was 4cm, only to get a call several days later that it was 11cm. I did not mess around, and in 16 days had a mastectomy. If I knew then what I know now, I would've had done the bi-lateral mastectomy, as my journey of reconstruction has been a disaster at best.

My experience....October 2007 mammogram showed califications that ended up being high grade dcis. Dec 2007 I had a lumpectomy with wide and clean margins. I was told most likely I would not have a recurrence. For that reason, I decided on the watch and wait approach. One year later exactly, the annual mammogram showed more calification about 2 C higher up from the previous lumpectomy. The mri showed another small tumor. The bc surgeon aggressively took out a quantrant of my breast. That final pathology report said the whole tissue removed was dotted with high grade 3 dcis that was not picked up by the mammogram or mri. I was self pay then so I again decided to watch and wait knowing in a few years I would be under Medicare and then do the mx. The next mri and mammogram were clean.

December 2010 I had a mri that showed a low grade idc in the good breast. The right dcis breast was still clean. . I am now insured, but felt since the right breast  showed no signs of dcis I had no reason to take off the right breast. I saw no reason to do more than a lumpectomy for the grade 1 idc in the left breast. It was a rare cancer that rarely if ever mets. I did not want to do a mx unless it was absolutely necessary, or rads. So far ... so good.

My recent annual mammogram, Sept 28, 2011 showed califications right under the first lumpectomy scar from the 2007 surgery. The biopsy and surgical biopsy as well idc, grade 3, HER 2+++ with 10% of it being high grade 3 DCIS. I was shocked. One year ago the mri showed nothing and now it's idc?

What I learned...just because they tell you your margins are wide and clean doesn't mean there arent' micro dcis cells that are not detected. I learned through the second dcis dx that dcis can jump over margins. I learned that high grade dcis is a lot more serious dx than I first thought. It's not a matter of if it will happen, but when it will happen. My opinion, high grade 3 comonec- should be staged higher than stage 0. It's a serious dx and at anytime it can become IDC. If I were to go back in time, I would had done the mx on the right high grade dcis breast the first time around. Because in time, you will probably have to do it anyway.

I do feel comfortable with the watch and wait for the low grade idc in the left breast. It is slow growing, and if it's found again I will do another lumpectomy as I've learned that a mastectomy is a lot harder to go through than I thought and the loss of a breast is emotionally hard...at least it was for me.  If a higher grade more aggressive is found in the left breast I will remove it as well.

Summary...grade 3 serious...the breast has got to go (unless you do rads, but even with rads recurrence can happen)  Low grade 1, lumpectomy and if you are comfortable with the watch and wait, why not?  

Lynda, you are saying that invasive cells were found both in your breast tissue and in your nodes? With the presence of any amount of invasive cancer, even a microinvasion, the diagnosis is no longer DCIS and instead becomes IDC. And with the presence of nodal invasion in a couple of nodes, I think that many oncologists would recommend chemo or at least present that as an option. Depending on the size of the invasive cells in your nodes, the presence of those cancer cells would change your staging from Stage 0 (pure DCIS with no microinvasions) to either Stage IB or Stage IIA.  If you have one or more nodal micrometastases that are >0.2 mm but not greater than 2.0 mm then you would be Stage IB.  But if the size of any of the nodal invasions is >2.0 mm then you would be Stage IIA.  Staging is explained here:  http://www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessional/page3   I know that you are in Australia but my understanding is that the same Staging standards are used.

It's interesting that you mention that your BS recommended all your treatment.  Did you not see an oncologist?  Normally an oncologist would be the one to discuss and recommend any treatment beyond surgery.  

Lynda, you're absolutely right.  Your situation is a perfect example of why someone diagnosed with DCIS shouldn't leave the DCIS untreated.  You really don't know what the actual diagnosis is until the surgery is done and the breast tissue is analysed under a microscope. 

In my case, my stereotactic biopsy showed only ADH - a pre-cancer.  If my surgeon has not been concerned and had not insisted that I have a surgical biopsy, my cancer would not have been discovered until at least 6 months later (assuming a 6 month follow-up and assuming that enough changes were visible on the mammo film to suggest another biopsy).  When I had the surgical biopsy, more ADH was found, along with lots of high grade DCIS and a microinvasion of IDC. I have no doubt that 6 months later, that single 1mm microinvasion would have been a larger area of IDC. 

As for your staging, it will be interesting to see what your doctors say.  My understanding is that because DCIS was your initial diagnosis before surgery, your "clinical staging" is DCIS. That doesn't change.  However after surgery we are staged a second time based on the pathology - that's called the "pathological staging".  Often the clinical staging and the pathological staging are the same but sometimes they are not.  Your pathological staging would probably be Stage IB, because of the microinvasions in the breast tissue and the nodal invasion (which you say was just a microinvasion so therefore was probably less than 2mm in size).  Since your pathological staging is more advanced than your clinical staging, that would normally be the staging that would be used in discussing your diagnosis, prognosis and treatment. That's my understanding of how it works. 

BTW, I don't think you are longwinded at all.  Have you ever seen any of my posts?  

Lynda, you're right.  You are not DCIS-MI.  But the good news is that the invasion to the nodes is really really tiny - so this means you are Stage IB and not Stage II.  In fact the invasion to the nodes is so small that it's almost the size of what's called "Isolated Tumour Cells" (ITC) - and technically that's considered node negative.  So you are just over the line in being considered node positive.  You are Stage IB but you are very close to Stage IA. 

Here's what I get from your pathology report:

• You have a combination of DCIS, IDC and a small nodal involvement.
• Starting with the least serious condition, you have 6.5 cm (65mm) of DCIS that is multifocal (there are 3 areas of DCIS although they are close together).  It is Grade 3 (high grade) with comedonecrosis (that's the most aggressive form of DCIS - I had a lot of that too).
• Your IDC is also multifocal; there are 2 areas of IDC, one being 1cm in size and one being 2mm in size.  Your IDC is Grade 2.  (This is interesting because a number of studies have shown that usually the grade of the DCIS and the IDC is the same, but mine wasn't and yours isn't.)
• Your nodal involvement is 0.3mm in size - a tiny micromets.  You had 7 nodes removed, two of which were sentinel nodes (the two blue nodes).  It was one of the sentinel nodes that had the micromets.  So this suggests that although some cancer entered the nodes, it appears to never have travelled farther than this first node.  That's good. 
• Hormone status:  Your cancer is ER+ (highly positive).The PR status is only 5% positive - that's very low so I don't know if that would be considered PR- or if it would be stated that you are weakly PR+. Someone else might know that. Your cancer is HER2-.

Staging is based on the most serious of the conditions that are found. This means that your 6.5mm of DCIS doesn't count in the staging; it's trumped by the IDC and the nodal involvement. Your staging is determined as follows:

• Your largest area of IDC is 1cm (10mm) in size - that's a pT1b tumour (tumor >5 mm but ≤10 mm in greatest dimension).  
• Your nodal involvement is one node with a 0.3mm tumour - that's pN1mi (micrometastases >0.2 mm and/or >200 cells but none >2.0 mm).
• There is no evidence of mets so you are considered to be M0.

Your TNM staging is therefore pT1b / pN1mi / M0.  That is Stage IB.  Note that the "p" in front of the T and N represent that fact that this is the pathological staging, i.e. it's based on what was actually found in the breast tissue and recorded on the pathology report. 

Overall, although obviously you would prefer a diagnosis of pure DCIS or DCIS-MI, this is a very favourable diagnosis.  You are three years cancer free and with the treatments you've had, the odds are very strongly stacked in your favour that this will continue for the next 50 years! 

What would you say to a woman who had Stage 0, grade 3 hormone negative?  She doesn't want to take any action except for watchful waiting.