What to do, what to do.....

My first appt. with a BCS is tomorrow morning. I'm assuming my options are going to be lumpectomy or mastectomy. I'm a 34A and am wondering if going through a mastectomy and reconstruction is any easier for small-breasted women. I know it's going to be major surgery if I go that route. but I think the breast with the DCIS will probably end up looking pretty bad after a lumpectomy and radiation.

Lady Grey- This all sucks! You are so right. You won't catch too many of us on this site sharing any warm fuzzies about having BC @ any level. It sucks that it is what it is. It sucks there is no bottom line for most of us, just day to day, patience and hope, and with many the "Make everyday count", mentality.

It sucks dealing with various levels of professionalism, and the ever present lack of knowledge in ourselves, as well as others, where this particular subject enters in.  I especially love the look of those who have decided they need to be kind now - she's dying. LOL

Words like terminal, inoperable, chemo, radiation, and biopsy, all SUCK!

The majority of us fall somewhere in between all these nouns. I don't think there's one of us that would say we don't understand and truly feel for you.

We are in a fight with our own bodies, without a judge or jury to hear our case, and it's up to each of us as to how we chose to battle it. Some days are good - some days are bad- you're right about that too. We're listening and can support you but we don't have the power to change the dx of BC, or how the people in our lives including the Medical Pros deal with us. We all have the same battle. We can give you the strength to battle. We can share everything we learn or have learned, and be here to listen to you vent, cry, laugh or share. 

I'm so glad to hear you've fought to see another Doctor and you got that second opinion. I know you won't miss the old nurse. LOL. Apparently she couldn't feel good about herself unless she felt she could demean you somehow. You must have intimidated the hell out of her. LOL

You take care of yourself. Do something to get your mind off of this for a while. One thing I've learned, is, it's all going to be there when you get back, so it's okay to step away from it and enjoy something that takes the edge off.

I'm not New Age so I can't tell you to think positive or negative. I don't even have physic abilities to give you an idea of how all of this will turn out. 

It's obvious you're a fighter, and aren't going to settle with this, so I'm not @ all worried you won't make it through this. I personally think you can get  %^&**$   @ all this and still make it through. We'll be here for you.

Had my annual mammogram in April. Needed a repeat,and was told by radiologist that i had a "suspicious" area of calcifications,and I should see a surgeon.

Saw a surgeon 2 days later. She wasn't concerned with the calcifications,she was "deeply concerned" with a large hard area on left outer breast and another area on left nipple.

I had a stereotactic biopsy on calcification area which showed DCIS ER+/PR+.

One week later had biopsies of both hard areas.That showed stage 2 invasive ductal carcinoma in both,cruciform type,both are ER+/PP+. All tumors are HER2 neg.

I then had 2 MRI's,a PET/cat scan.an ultrasound of right breast for a mass that was gone by the time I had the US.

MRI showed suspicious area in left shoulder.

I went to Dana Farber breast cancer hospital in Boston for second opinions by surgeon and oncologist. Had a cat scan guided biopsy on shoulder 6/27,and got the diagnosis of stage 4 mets to bone on 7/6.

Started on letrozole 2.5 mg daily on 7/11 and it is working since my CA2729 dropped from 112 to 53.8 There will not be any surgery,radiation,or chemo now.Maybe down the line if and when the hormone suppressants stop working,I'll need chemo.

Through all this I have been somewhat removed.I'm upset,but that's it. However,I didn't realize how upset I was until I got the CA2729 results;if felt like a heavy weight was lifted off me.

You have to decide what is best for you. I was a nurse and I would not keep a doc who had someone so insensitive working for him.

My opinion, whatever happens, let it be your choice. Turn over every rock, and don't do anything unless you feel completely comfortable. Being willing to walk away if you don't see eye with a doctor...there are a lot of surgeons and oncologist. You are your best advocate...it's your life, not us, or your doctors.

It sounds like a nipple sparing mast might work, but you can have reconstruction after a lumpectomy. My PS says she does it all the time, it's a big part of her practice.

I don't know the specifics

An MRI does give you and the Doctor a baseline to start with when you have nothing else to go on. It may not seem important today but the future changes and possibilities have a reference point now. 

I had the same issue with my lungs and they did find a nodule in my right lung as well as the beginning of emphazema but the nodule proved to be just that and wasn't really an issue in the end.

http://www.breastcancer.org/symptoms/testing/
This info is written on site here under diagnois and testing section. I had a difficult time understanding what the PR and ER - etc., meant and why it is important but the management of your cancer may well be handled with the use of hormones if you prove positive in these areas. I am a Triple Negative meaning the only options are no treatments with the invasive cancer or chemo and radiation. I'm still debating with myself as to wheather it's worth it or not in the end. 

Beesie did a lot of homework on her specific cancer and I hope this helps with your questions regarding comedonecrosis, and the likes.

Via Beesie 2008:

Most of the breast cancer sites I went to use the terms "necrosis" and "comedonecrosis" interchangeably. I believe that "necrosis" is a generic term referring to dead cells, whereas "comedonecrosis" is a specific subtype of DCIS that includes necrosis.

Here are definitions from http://www.dcis.info/dictionary.html:

Necrosis - The death of living cells or tissues caused by a lack of blood flow.

Comedo (kuh-ME-do) - A subtype of DCIS indicating a high grade of disease, which translates to higher risk for development of invasive breast cancer. Comedo looks and acts differently from other in situ subtypes. The center of the duct is plugged with dead cellular debris, known as "necrosis". This is a sign of rapid and aggressive growth. Also called Comedocarcinoma when it is in an invasive form.

BC.org also explains this well: http://www.breastcancer.org/symptoms/dcis/type_grade.jsp

As for your question, "Can you have true comedo necrosis and not have a high nuclear grade?", from the following site, I think the answer is yes. http://www.breastdiseases.com/dcispath.htm If I understand this correctly, comedo is a type of DCIS architecture. It's usually associated with high nuclear grade, but not always. Ends Beesies explaination and references.

Invasive or non invasive do play a determining factor in what you need after surgery.  If it's invasive it requires agressive treatment. Non invasive less agressive treatments with more options.

This is my best stab at your questions. I'm certain there are others with much more concise info on the subjects in question. Hugs and Hope for you. 

jazz, thanks for finding the info from my old posts!  I was looking for that information recently and couldn't find it!

LadyGrey, indicators of a potentially aggressive DCIS are the size of the area of DCIS and/or if the DCIS is multi-focal or multi-centric (in more than one location in the breast), the grade of the DCIS (grade 3 is the most aggressive) and the presence of necrosis (i.e. DCIS with comedonecrosis). It sounds as though you have all those conditions.  So did I.  What this means is that there is 1) a greater risk that the DCIS may be widespread and 2) a greater risk that some invasive cancer might be found hiding in the middle of the DCIS.  

Addressing the first point, cancer cells by definition tend to multiply and spread. The more aggressive the cancer, the more likely it is that the cells have been multiplying and spreading. DCIS cancer cells are confined to the milk ducts so the only place that DCIS cells can expand into are other milk ducts in the breast. This is why aggressive DCIS often tends to cover large areas of the breast, more so than invasive cancer (where the aggressive cells might form an ever increasing lump or move into the nodes or the vascular system).  What this means for DCIS patients is that it may be harder to get clean margins with a lumpectomy and a mastectomy is more likely to be required. Although it seems counter-intuitive, this is why mastectomies are considered to be 'medically necessary' more often for DCIS patients than those with IDC.  For those having a mastectomy, having widespread DCIS could mean narrow margins near the chest wall, and that could lead to a recommendation of radiation.

As for the second point, on average anyone with a preliminary diagnosis of DCIS from a biopsy faces approx. a 20% risk that 'something more' will be found once all the affected breast tissue is examined.  Those who have aggressive DCIS obviously face the highest risk.  The 'something more' usually is just a microinvasion (1mm of IDC) or maybe a few microinvasions but in about 5% of cases, the diagnosis changes completely due to the discovery of a greater amount of IDC and/or nodal involvement (which is not possible with pure DCIS but can happen with any amount of IDC, even just a microinvasion).

So those are the implications of having grade 3 DCIS and the presence of comedonecrosis. Aggressive DCIS presents more risks. One of the most important things to keep in mind however is that pure DCIS (if no IDC is found) is always a pre-invasive cancer, no matter what the pathology. If all the DCIS cancer cells are surgically removed and/or killed off with radiation, then it really doesn't matter how aggressive the pathology was. DCIS that is removed can no longer hurt you, no matter how aggressive it was.  This is not true with invasive cancer.  If the pathology of an invasive cancer is aggressive, the long-term risk of mets is potentially higher. This is because there is a greater chance that some of the cancer cells might have moved outside of the breast before the cancer was surgically removed (and this is something that DCIS cancer cells can't do).  So with IDC, an aggressive pathology potentially has a long term implications; an aggressive IDC can hurt you even after the cancer in the breast has been completely removed. With DCIS an aggressive pathology presents immediate concerns but once the cancer is removed, it no longer matters.

What that all means is that it's important to get the aggressive DCIS out of your breast.  DCIS cells left in the breast can recur - a local recurrence is certainly possible and is more likely if the DCIS is aggressive.  In 50% of cases, local recurrences after a diagnosis of DCIS are not discovered until the cancer cells have already evolved to become invasive.  And then it's a whole different situation.  So if you have aggressive DCIS, what's most important is that you ensure that all those cancer cells are removed and/or killed off.

That leads to the question of radiation.  It used to be that radiation was virtually never given after a mastectomy for DCIS.  That was the case when I had my surgery 6 years ago.  Recent studies have shown however that local recurrence after a mastectomy for DCIS can increase substantially (from 1%-2% to 16% in one particular study) if the margins are narrow.  This is why it's more likely these days that radiation might be recommended after a mastectomy for DCIS.  It's still rare, but it's no longer off the table, as it used to be.

Chemo, on the other hand, has nothing to do with margins.  Chemo is a systemic treatment.  It's given when there is a risk that some cancer cells may have moved into the body prior to the removal of the cancer from the breast. The more aggressive the IDC, the greater the risk that some cancer cells may have escaped into thre body prior to surgery, and the more likely that chemo will be recommended.  Chemo is never required for DCIS because by definition DCIS cancer cells cannot leave the breast.  So no matter how close the margins, if the cancer is pure DCIS, chemo won't be required.  Where chemo does comes into play is if IDC is discovered in the middle of all that DCIS, and particularly, if some of those IDC cells made their way into the nodes.  But keep in mind that the presence of a small amount of IDC doesn't mean that chemo is sure to be recommended.  A small amount of IDC, or even a larger amount of a less aggressive IDC, presents a small enough risk of mets that usually chemo won't be recommended - the risks from chemo are considered to be greater than the risk of mets.  For most women who have DCIS as their preliminary diagnosis and who are then found to have some invasive cancer, the treatment doesn't actually change vs. what it would be for pure DCIS.  The lymph nodes need to be checked but if they are clear, often nothing else changes.  That was the case for me.

Lastly, the ER/PR status.  This relates to whether you might benefit from hormone therapy (Tamoxifen for those with DCIS), which is available to those who are ER+. Tamoxifen provides 3 benefits: 1) It reduces the risk of local recurrence; 2) It reduces the risk of a distant recurrence (i.e. mets); 3) it reduces the risk of the development of a new BC in either breast.  For someone who has a mastectomy for DCIS, the first two benefits are negligible because your risks in those areas are negligible (assuming adequate margins after the mastectomy).  Therefore the primary benefit of hormone therapy is protection of the remaining breast.  Even for those who are ER+, taking Tamoxifen is optional; I'm ER+/PR- and my oncologist recommended against Tamox for me (and I agreed with him). In your case, being ER- it's unlikely that Tamox would be recommended (although a new BC could be ER+ even though your current is ER-) but even if you were ER+, you might choose not to take it.    

Hope this all makes sense and helps! 

m4babies, to ease your mind, I don't think that dcis can have a vascular invasion, because it hasn't left the ducts. Beesie will correct me if I'm wrong. 

rn4babies, by definition DCIS is a pre-invasive cancer.  DCIS cancer cells are stuck inside the milk ducts of the breast, and from there they can't move into either the lymph nodes or the vascular system. When there is the presence of vascular or lymphatic invasion along with a diagnosis of DCIS, the assumption is that there was an occult invasion, i.e. there was invasive cancer present that was not found and therefore the true diagnosis was not DCIS.  So my guess is that in your case if vascular invasion had been found, your diagnosis would have changed and would no longer be DCIS.  Alternately, and probably more likely, a vascular invasion in the presence of pure DCIS is not a true invasion but is the result of a displacement of cancer cells during the initial biopsy. 

"Peritumoral vascular invasion is a very rare finding in association with DCIS alone. Additional sampling should be considered to attempt to identify an area of invasion. If  there has been prior surgery or needle biopsy, the possibility of artifactual displacement of epithelial cells into lymphatics should be considered."  Protocol for the Examination of Specimens from Patients with Ductal Carcinoma In Situ (DCIS) of the Breast  http://www.cap.org/apps/docs/committees/cancer/cancer_protocols/2009/dcis09.pdf

"EDLS (epithelial displacement into lymphovascular spaces) can occur at initial BCNB (Breast core needle biopsy), and, therefore, the presence of tumor cell clusters within lymphovascular spaces in a BCNB specimen with DCIS may not represent true lymphovascular invasion." Epithelial Displacement Into the Lymphovascular Space Can Be Seen in Breast Core Needle Biopsy Specimens  http://ajcp.ascpjournals.org/content/133/5/781.full

LadyGrey,

Is your doctor trying to just evade your questions?? What the heck??  It would just make me plain crazy too!!  Just when you think you have everything figured out, they throw a new curve ball?? I think though *if* I had triple negative, high grade DCIS, I would be flipping out already...I looked around in the TN forum out of curiousity and ignorance of what it was. 

I feel fairly calm with my DCIS at the moment because

1. mine is grade 1

2. I have my treatment decision made, surgery set

3. I love my doctor(s)

4. my DCIS is ER+ so should respond to Tamoxifen, although the thought of joint aches and MORE friggin hot flashes makes me insane!!

5. I saw a double rainbow two days in a row (an omen??)  LOL

If you take tea to your consult, make it green...green tea is supposed to have some cancer fighting super powers...but you might want to leave all sledge hammers in the car...just sayin!

TheGreyLady:  You're so welcome - but please the one cig and then out of your life forever right?  Take good care of yourself!!!!

Statistically, I have a 20% chance of having microinvasions (have no idea about actual invasive stats -- SURELY that doesn't actually happen). I'm probably on the high end of that given my comedonecrotic/ER-PR- status, but still.  From what I've read, the risk is about 15% for a microinvasion and about 5% for something more serious, either nodal involvement or a larger area of invasive cancer. 

As I understand it, if you are node positive, by definition you do not have DCIS seeing as how it has by definition left the duct.  Yes.

At that point you are looking at some level of invasive cancer. Yes.  But if could be something as small as a microinvasion.  My microinvasion was discovered during my excisional biopsy.  When I had my mastectomy, my surgeon told me I had a 10% chance of nodal invasion just because of that tiny 1mm microinvasion.  Since then I've read a few studies that confirm that approx. 10% of microinvasions result in nodal involvement.

If you have node(s) positive at some point they recommend chemo. Usually.  But with only one node, maybe not, for those who have ER+ breast cancer that can be treated with Tamoxifen or an AI.  Or possibly not if the amount of cancer in the node is very tiny. In your case though, being ER-, it's likely that a positive node would lead to a recommendation of chemo.

If you have invasions that are of a certain size, at some point they will recommend chemo.  Yes. The line in the sand for chemo depends on the pathology of the cancer and the Oncotype score. Some women with very aggressive 3mm invasive tumors are given chemo while other women with less aggressive 2cm invasive tumors don't get chemo. 

I don't see how the pathology report on the breast tissue doesn't cover what we need to know. The percentage of invasive cancers that are below the chemo thresholds size wise but node positive has bound to be statistically insiginificant.  Actually not so. To my point about the 10% possibility of nodal involvement from just a 1mm microinvasion, small invasive cancers - too small to warrant chemo (generally <5mm) - can lead to nodal involvement and that can change the treatment plan from 'no chemo' to 'chemo'.

On the other hand, the SNB involve (1) pain on a 6-8 scale with the injections, (2) long term soreness and problems in the area of the node removal, (3) a 5% of the dreaded lymphoderma, and (4) a lifetime of worrying about getting the dreaded lymphoderma.  Yes on all counts. 

I'm not seeing the risk/benefit playing out in favor of doing the biopsy. LOTS of downside and very little upside -- defined as learning something we would not otherwise learn.  It is a fine line. A problem will arise only if you have a microinvasion or a very small invasive tumor, one that doesn't warrant chemo, but you haven't had an SNB.  Then you either take the risk of not having chemo, or you have chemo even though the tumor itself doesn't warrant it, or you have an axillary dissection which removes more nodes and presents a greater risk of lymphedema.  The odds that you might find yourself in that situation are probably between 15% (the risk of just having a microinvasion) and 20% (the 5% who have something more serious than a microinvasion, a portion of whom will have invasive cancers that are large enough to warrant chemo without needing to know the nodal status).

Sorry, I know that's not what you want to hear.  It's a pretty crappy choice, I know! 

If you decide to stick with your decision, it is your decision and your surgeon should comply.  

cycle-path, the treatment plan under your #2 can change considerably depending on the nodal status. DCIS with just a small amount of IDC doesn't usually warrant chemo; DCIS with a small amount of IDC plus positive nodes usually does warrant chemo. If the invasive cancer is HER2+, Herceptin also comes into play in this scenerio.  With just a microinvasion or a tiny 2-3mm tumor, usually Herceptin wouldn't be recommended but if there is a positive node as well, then Herceptin is almost certain to be recommended.  Even radiation might come into play in this scenerio if there are positive nodes.

So knowing the nodal status can change the treatment plan under either scenerio #2 or scenerio #3.  Scenerio number 3 actually presents less of a risk because it's not that common to find cancer in the nodes when no invasive cancer is found in the breast.  It can happen - pathology does sometimes miss a tiny amount of invasive cancer in the breast if it's well hidden in with the DCIS (there had to be some invasive cancer in there somewhere in order to have the positive node).  But if the amount of invasive cancer was so small that it was missed, then the odds are good that if there is any nodal involvement, it's probably very small - most cases like this usually present with only isolated tumor cells (ITC) or micromets in the nodes.  And that usually doesn't warrant chemo. So scenerio #3 is rare and when it happens, it often doesn't end up leading to the recommendation of chemo.  

It's scenerio #2 that presents the greatest risk.