Doctor just called with my results

My situation was different but I wanted to give you some advise. I was 33 years old at DX. They found IDC on left breast and DCIS on rt breast. There is no family history of cancer but I am positive for brca 2. I orginally had a lumpectomy then I scheduled to do rads after. For me personally, I did not want radiation and because I was brca 2+ I chose to have a BMX after lumpectomy. For me it was a peace of mind knowing that most of my breast tissue was gone. I am still NED and I have 2 great foobs. I am so sorry for the loss of your mother.

Oh One more thing, I like you, did not want to have more mammo's, MRI's, etc for the rest of my life so the BMX just made sense to me. Again, I'm sorry you have to deal with this. I hope you find some women on here who can give you comfort with your decision.

Take Care,

Julie

ILuv2knit....WOW.  My mom came to me in dreams too for weeks telling me to get a mammo. I had a large b9 tumor removed about 25 years ago and started having mammos every year after that...at first I was told I had to do them for 5 years and then could stop until I hit 40.  Well, 4.5 years out, my mom was dx'd with bc and so my doc said to go another 5 years with mammos.  When those 5 years were almost done, two of my aunts (mom's side and dad's side) were dx'd with bc....so, I continued to have mammos every year. I always had them in December, but in late fall 2008, I fell and broke my collarbone and couldn't have my yearly mammo. And, I figured "what the heck, nothing came back after 21 years, I'll just skip this one and do one again in December 2009".  Well, my mom, who had died in 2006 from bc recurrance, started showing up in my dreams in spring 2009. Kept telling me to get my mammo and not to wait. At first I ignored her but she just kept coming back so finally I broke down and got my mammo in August. SURPRISE for me:  DCIS, grade 3! Moral of this story:  Listen to your Mom.

Dear iLUV2knit - As you know since you posted to my thread a few days ago, my wife just received her diagnosis and we have our first meeting with the BC surgeon Thursday 9/15 once I get home from China.  I am not a woman so I can't advise you on this very difficult and personal decision that you and for that matter my wife will have to make.  However, my plan to is learn, research, and gather as much information as possible and then ask as many questions to the doctor as necessary.  I plan to ask the doctor detailed questions on recurrence risk and statistics and maybe you should ask your doctor about how much each option would lower the risk of recurrence.  I was thinking that I may write down on a large piece of paper the pros and cons of each option and give it to my wife to consider.  This may or may not take some of the emotion out of the decision.  I think being alive and healthy is more important than appearance.  Your post helped me.  I hope my post helps you in return.  And I will continue reading to see how you are doing over time and will continue to post about my wife's status.  BlairK

Before I do anything, I would ask for a mri. If nothing shows up, I would have the biopsy rechecked. More people than you think have been given a wrong dx. If your dx is dcis grade one its slow growing. You have time. Last...don't let anyone make the decision for you....doctor or friends. You have to live with your decision.

I wouldn't say that it's an Angel or Devil decision. It's a choice between two very imperfect options, a choice nobody ever wants to have to make.  But that's where you are.  That's where we've all been. So you have to decide.  You have to weigh the pros and cons of each option and decide what's best for you.  

In your position, with a diagnosis of low grade DCIS in one breast, and something going on in the other, it's natural to consider having a bilateral mastectomy.  After thinking it through, you might decide that this is the best decision for you.  No one can or should argue with that.  What's most important however is that you understand the full impact and implications of each option, before you make this decision.

So I want to comment on one thing that you said:  "Gone with a whisk of a scapel and replaced with nice clean foobs. The thought of more mamms, MRIs, biopsies, long term medicine...is daunting to me."

If only it were that simple!  Mastectomy + reconstruction is a complicated process that usually involves at least a couple of surgeries over a period of anywhere from 3-4 months to over a year. In about 40% of cases, the results are not satisfactory and there are additional surgery/surgeries - or the patient chooses to live with unsatisfactory results. For some, the surgery and reconstruction process is easy and not very painful; for others, it's difficult and very painful - you can't know which group you'll be in until you're there.  For some (not the majority but not an insignificant percentage either), there is on-going pain and discomfort. Even if reconstructed breasts are fine for years, problems can develop years later, as implants shift or scar tissue builds/hardens.  And reconstructed breasts still need to be checked.  While the risk of breast cancer is reduced substantially, a recurrence or a new breast cancer can still develop in the small amount of breast tissue that remains (there always will be about 1% - 3% of breast tissue left even after a bilateral mastectomy).

So please don't think that having a BMX will end all your concerns, your tests, your surgeries, your risks.  It will significantly reduce your risk of having a recurrence or developing BC again, but it will also open you up to a whole new set of potential concerns and problems.  There are life long implications. 

I don't say any of this to discourage you from having the BMX.  That very well might be the best choice for you - only you can decide that.  I simply hope that you (and every woman making this decision) makes the decision with your eyes open, understanding the risks and implications. If you know what to expect, it will be easier to deal with anything that might happen. I think in my years on this board the posts that upset me the most are those that say "If only I had known before I decided...." or "Nobody told me that this might happen."  And of course there are also risks and implications when you choose a lumpectomy and/or radiation and/or Tamoxifen. I'm not covering those off here because I think those are a whole lot more obvious, and because I wanted to specifically address the comment that you made about having a BMX (which, by the way, is exactly the same as how most people think about a BMX until they start digging into the details of what's involved and what really happens).

Good luck with your decision.   

iLUV2knit,  unfortunately, any time DCIS is found in a biopsy, there is a possibility that some invasive cancer will be found once the all the surgery is done.  Generally about 20% of women who have have a DCIS diagnosis after a biopsy will end up having something more serious once the final pathology report is available.  Most will just have a microinvasion - as I did - but some will be found to have larger amounts of invasive cancer and a very small percent will have nodal involvement.  The greatest risk is faced by those who have grade 3 DCIS and/or comedo type DCIS and/or where necrosis is present (comedonecrosis) and/or where there is a large amount of DCIS (particularly if one of those other factors is also present).  Grade 1 micropapillary DCIS presents a very small risk.  

So while I absolutely understand your worries about invasive cancer - it's a perfectly normal and I would be more concerned if you weren't aware of this risk - the good news for you is that with your type of DCIS, your risk of being found to have invasive cancer is much lower than most who are initially diagnosed with DCIS via a biopsy.

By the way, my 7+cm area of DCIS had every one of those high risk factors that I mentioned in the earlier paragraph.  And it turns out that I did have some invasive cancer, but just a single microinvasion, one tiny 1mm area of invasive cancer.  Because of the presence of the invasive cells, I needed to have the sentinel node biopsy (otherwise it would have been optional). But other than that, it's had no impact on my treatment and virtually no impact on my prognosis. So as scary as it is to think that one might have some invasive cancer, if there's just a small amount and the diagnosis is early stage, the impact might be much less than you fear.   

Just to make sure you understand....there is a very big distinction in papillary and micro papillary. The micro is the type that grows quite aggressively and is usually caught at a later stage.

geewhiz, are you refering to micropapillary DCIS, or is your comment about micropapillary invasive cancer? 

I know that micropapillary invasive cancer is very aggressive but I don't know that the same can be said for micropapillary DCIS, at least not based on current scientific knowledge.  Because of it's significance to invasive cancer, the micropapillary subtype of DCIS has been separated out and studied quite a bit.  It has been found to be different from other subtypes of DCIS.  To my understanding, micropapillary DCIS,  particularly if it is high grade, presents a greater risk that the DCIS may be wide-spread and therefore a mastectomy is more likely to be required/recommended.  But from what I've been able to find, there doesn't seem to be any connection between micropapillary DCIS and the likelihood of invasion.

A couple of references (ones I've found that are concise and easy to understand):

First, from the pathology page about DCIS on the University of Virginia Med School website.  

"The tumor is divided into two histologic types: comedo and cribriform/micropapillary carcinoma.....Cribriform/Micropapillary carcinoma  These tumors are differentiated by their growth patterns as they form papillary structures and small, regular fenestrations (giving a sieve-like appearance, hence the name cribriform). The tumor cells are smaller and more uniform compared to comedocarcinoma and lack necrosis. However, this variant of DCIS is often admixed with the comedo type.....Clinical behavior  The two types of DCIS differ markedly in their risk of subsequent invasive carcinoma. Comedocarcinoma has essentially a 100% chance of becoming invasive if left untreated. Pure cribriform/micropapillary carries only a 30% chance of invasive carcinoma."      http://www.med-ed.virginia.edu/courses/path/gyn/breast6.cfm

This second article, from August 2011, explains that micropapillary DCIS often is extensive, necessitating a mastectomy, but makes no mention about micropapillary DCIS being more likely to lead to invasive cancer, or to a recurrence.  The size of the surgical margin is highlighted to be the critical factor affecting recurrence risk.  High nuclear grade and the presence or necrosis are noted to be factors that are predictive of local recurrence and missed invasion.   http://www.cancernetwork.com/breast-cancer/content/article/10165/1921883

Lastly, here is the page from BC.org that talks about the subtypes of DCIS:  http://www.breastcancer.org/symptoms/types/dcis/diagnosis.jsp 

iLUV2knit, I hope that this information is helpful, and not confusing! 

iLUV2knit,

I came across that website too.  The problem is that they make a statement, "Micro-papillary DCIS is now thought to be a highly malignant, dangerous presentation of DCIS" but don't provide any data to support the statement.  In trying to find data to support the statement, what I found is information that shows that micropapillary DCIS, intermediate and high grade (low grade seems to be excluded), is highly likely to be extensive and therefore usually a mastectomy is required. This supports the part of the statement that says that "Micropapillary DCIS is often multifocal and multicentric. When the presentation is pure, it is often considered grounds for mastectomy".  But there is nothing that I found to suggest that micropapillary DCIS is more likely to lead to invasive cancer.  I found no studies that show a correlation between micropapillary DCIS and IDC.  Instead, when talking about which types of DCIS are highest risk to become invasive, all the articles and studies I found, including the most recent ones (the August 2011 article) specify grade (grade 3), size of tumor, comedo type DCIS and the presence of necrosis.  If anyone has new and/or different information on this, please share!

One thing to always keep in mind is that our knowledge of breast cancer and DCIS continues to progress as each new study is released.  Because the number of cases of DCIS keeps growing, DCIS is an area that is being studied extensively.  So everything is subject to change. We have to recognize this and make our decisions based the knowledge that is available today.

Your question that "It seems to me like that don't know as much as they think about all the forms of DCIS until surgery is actually performed and the tissue is examined further??" is absolutely right. And this is an important point.  If there is any extra concern about micropapillary DCIS, it seems to be specific to cases that are pure micropapillary DCIS, either intermediate or high grade  Those are pretty rare cases; to my understanding, most cases of DCIS include more than one subtype of DCIS.  My DCIS included comedo type, solid, papillary, micropapillary and cribiform; I had mostly grade 3 cells but also some grade 2 cells.  Plus I had a microinvasion of IDC, some cells that were still ADH and a whole bunch of different benign conditions.  All mixed together. Not all DCIS is that complicated but I believe that most do include more than one subtype.

In your case, with a biopsy that revealed low grade micropapillary DCIS, it's too early to conclude that you have pure micropapillary DCIS.  My initial stereotactic biopsy only showed the ADH; most of the other conditions were only discovered when I had an excisional (surgical) biopsy and a couple more showed up only with my mastectomy.  If it turns out that you have other subtypes of DCIS along with the micropapillary, then the relevance of the presence of the micropapillary disappears. 

All that is to say "Try not to get caught up worrying about things that you don't yet know or things that 'might be'!"  Sometimes those worries do come true, but most often it turns out that all the worrying was for nothing.   

Hope that helps. 

evebarry, Hi!  It's nice to 'see' you! 

To your question, micropapillary is one of the subtypes of DCIS.  It's usually grouped in with the less aggressive forms of DCIS such as cribiform, solid and papillary but lately it seems to be getting more attention, mostly I suspect because micropapillary IDC is considered to be very aggressive so there is interest in seeing if the same applies to micropapillary DCIS.  Although pure micropapillary DCIS tends to be multi-focal, this doesn't mean that everyone who has multi-focal DCIS will have micropapillary cells. So if your pathology report doesn't mention micropapillary, then your DCIS probably didn't include this subtype.

Looking at my pathology report, it's interesting to see that both my areas of DCIS removed during my excisional biopsy had micropapillary cells (in addition to cribiform, solid, papillary and comedonecrosis) but the pathology report from my mastectomy mentions only cribiform, solid and papillary. So I guess my micropapillary DCIS cells weren't as widespread throughout my breast as some of my other types of DCIS cells.

Following is info from BC.org about the subtypes of DCIS.  You can see that micropapillary barely rates a mention - it's included in with papillary.  

.           http://www.breastcancer.org/symptoms/types/dcis/diagnosis.jsp

Grade I (low grade) or Grade II (moderate grade)

Grade I or low-grade DCIS cells look very similar to normal cells or atypical ductal hyperplasia cells. Grade II or moderate-grade DCIS cells grow faster than normal cells and look less like them. Grade I and Grade II DCIS tend to grow slowly and are sometimes described as "non-comedo" DCIS. The term non-comedo means that there are not many dead cancer cells in the tumor. This shows that the cancer is growing slowly, because there is enough nourishment to feed all of the cells. When a tumor grows quickly, some of its cells begin to die off.

People with low-grade DCIS are at increased risk of developing invasive breast cancer in the future (after 5 years), compared to people without DCIS. Compared to people with high-grade DCIS, however, people with low-grade DCIS are less likely to have the cancer return or have a new cancer develop. If more cancer does develop, it typically takes longer for this to happen in cases of low-grade DCIS versus high-grade.

There are different patterns of low-grade and moderate-grade DCIS:

Papillary

Papillary DCIS: The cancer cells are arranged in a finger-like pattern within the ducts. If the cells are very small, they are called micropapillary.

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Cribriform

Cribriform DCIS: There are gaps between cancer cells in the affected breast ducts (like the pattern of holes in Swiss cheese).

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Solid

Solid DCIS: Cancer cells completely fill the affected breast ducts.

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Grade III (high-grade) DCIS

In the high-grade pattern, DCIS cells tend to grow more quickly and look much different from normal, healthy breast cells. People with high-grade DCIS have a higher risk of invasive cancer, either when the DCIS is diagnosed or at some point in the future. They also have an increased risk of the cancer coming back earlier - within the first 5 years rather than after 5 years.

Comedo