Do you call DCIS "breast cancer"?

VG - did your docs offer you genetic testing?  Mine did not - prob because I had no family history.  However, I found out after the mx that insurance would cover cost because of my age at diagnosis.  If I had been BRCA positive I would have gone bmx instead of unimx.  I was actually quite upset with docs for not offering me opportunity (no matter how slim) to get the testing done before surgery!  I only figured out what BRCA means by reading these boards.  I had it done after  the fact and was negative.  If I had been positive I would have been pissed!  BMX vs Uni is a very personal decision.  My breast surgeon told me that my odds of getting it on the other side were no greater just because I had DCIS in the other.  Part of me wishes I went for it so I dont have to worry, but the other part of me said don't do more harm to your body than absolutely necessary.  I could have cancer in any number of places, but I'm not going to cut them out just in case.  I also believe my recovery was easier because I had full use of my non-cancer side pretty quickly.  Range of motion is a bear with mx.  If I was as limited with both as I was with the one, I would have been much more uncomfortable.  

I chose to educate myself as best as possible about prevention instead.  Read quite a few books and came to the conclusion that imflammation is the root and cause of most disease.  What caused mine?  Partly anyway - a terrible addiction to sugar!  Sugar=evil I'm so sad to say.  I stopped sugar in Sept after my dx and have never felt better.  Used to have chronic sinus infections (4-5x per year) and since no sugar - not even a sniffle.  Unbelievable.  I still eat dark chocolate and will nibble on my kids candy a bit, but never more than 8g of sugar at a time.  I also started adopting a paleo lifestyle of eating - contrary to my previous more vegan type lifestyle.  Once I read about it, the theory just made sense to me.  I'm ranting now...I'll stop now. 

I don't much like Dr. Love's book.  I think it's good for those who have more advanced breast cancer and who will be needing a bunch of different treatments for I don't think it's particularly useful for someone with DCIS.  

Among my concerns, she considers DCIS to be a pre-cancer.  She's also very negative on prophylactic mastectomies and mastectomies in general (I somewhat see her point on that - I think that BMXs have a place and are the right decision for a lot of women but I see too many women rush into them too quickly out of fear). And for someone with an early stage breast cancer, I think the book can lead to a unnecessary level of concern because it covers so much about later stage cancers.

Thank you Bessie . . . very interesting comments regarding the book . . . do you have any good/better suggestions? I am a big "reader" . . . the more I read the better I feel . . .

Gumshoe,

This is an interesting question.  I'll come at this from a different perspectivfe - my primary diagnosis was stage III IDC, although I did also have a lot of DCIS.  

I don't think the answer is simply one of medical terminology, but a complicated one that has ramifications for people diagnosed with other types of breast cancer.

When I was first diagnosed,  physician friend of mine said flippantly, "Well, it's probably just DCIS."  I choked out that it was not, and I haven't spoken to her since then.  That comment still bothers me.  Yes, overall DCIS has a great prognosis, much better than mine.  But you all still go through the horrors of treatment and losing pieces of your body.  I don't know if the fear is proportionally greater if diagnosed at stage III IDC versus DCIS, but I am sure I would have been fearful and had my own mortality thrown into my face had I been diagnosed with DCIS.  It would not have been "just DCIS" to me.

On the other hand, the great prognosis of DCIS muddies the picture for those of us diagnosed with invasive disease.  We do have a significant risk of dying of this disease.  Treatment is really rough, and it brings nothing close to a guarantee.  What bothers me is when people hear stories of women with DCIS and believe "breast cancer" is a very treatable disease.  "Breast cancer" is really a lot of different diseases, and we're not all the same.  

I really appreciate it when I hear people explain a little more about their DCIS diagnosis.  I agree that "stage 0" is a useful way to convey that yes you have a serious diagnosis but also that you are in a stage with a good prognosis.  

Outfield, you've provided a very interesting perspective.  And cinnamonsmiles, I agree with you that what muddies the water is not just DCIS but a general belief in the media that all breast cancer is curable.  Maybe it's all the celebrities who've been diagnosed with early stage BC (whether DCIS or early stage invasive) who have their treatment and then come out and say that they are "cured" or they "never have to worry about breast cancer again".  The simple fact is that even someone who's had DCIS and who's had a BMX could be diagnosed with BC again, either a recurrence or a new BC - and if that happens, it could be DCIS again or it could be invasive.  And the other simple fact is that anyone who's had invasive breast cancer faces the risk of recurrence/mets, or a new breast cancer (even after a BMX) for the rest of her life. Certainly the risk of recurrence will be quite low after 10 years or 15 years, but it never quite goes away completely. 

Having said that, just as I think it's a problem that there is this perception out in the world that breast cancer is curable, I also think that it's a problem among women diagnosed with early stage BC that so many believe that their future risk - of either a recurrence, a new BC, or of dying from BC - is much higher than it really is.  I recall reading the results of a study a few years ago that showed that women with DCIS and early stage invasive cancer thought that they were just as likely to die of BC as women who were diagnosed with later stage disease.  That is simply not true.  Similarly, we read on this board all the time that the risk of recurrence and mets is the same regardless of stage.  That too is simply not true.   

Pure DCIS is 100% survivable.  This doesn't mean that every woman diagnosed with DCIS will survive but those who don't first must have a recurrence that is not discovered until it is already invasive cancer.  Additionally, before this invasive cancer is found and removed from the breast, some of the cancer cells must have spread from the breast into the body.  Breast cancer in the breast never killed anyone.  The threat from breast cancer is when the BC cells move through the nodes or the bloodstream into the body and take hold in a vital organ.  Because DCIS cancer cells are confined to the milk ducts, it is not possible for DCIS cells to move outside of the breast. But if left untreated, DCIS cells can evolve to become invasive cancer.  Invasive cancer cells do have the ability to move into the nodes or the bloodstream, so that's the point at which the risk of metastisis arises - once the cancer is no longer DCIS.  The same can happen if some rogue DCIS cells remain after surgery that are not killed off by radiation and/or hormone therapy and over time these cells evolve to become invasive cancer.

This can happen, but it usually doesn't (the development of mets after a diagnosis of DCIS, that is).  All in all, the long-term survival rate for those diagnosed with DCIS is very high.  I've seen one study with a survival rate of 95% but overall 98% - 99% seems to be the average from most studies. This is why DCIS is different from invasive breast cancer and why DCIS is "the best diagnosis" to get (not that any diagnosis of breast cancer is good to get!).   

I agree with Outfield that when first diagnosed, our emotions and reactions are probably pretty much the same, whatever the diagnosis.  We are faced with a diagnosis of breast cancer, we are faced with our bodies failing us, we are faced with our mortality and we are faced with having to make choices that no one should ever have to make with regard to surgery and treatments.  And then we have to deal with the surgery and treatments.  But after the initial shock has worn off, those who are diagnosed with DCIS (or very early Stage I BC, as I was, thanks to the microinvasion that came along with my DCIS) should come to realize that their diagnosis is different and that their risks are not the same as someone diagnosed with a more extensive invasive cancer.  The risk of mets is not the same.  The risk of dying is not the same.  I think it's unfortunate and sad that so many with DCIS and DCIS-Mi don't ever come to this realization, or at least don't come to this realization for a very long time, and as a result they make decisions out of fear and continue to live in fear for a long time.  Sure, anything can happen.  But do you really want to make decisions and live in fear because of a 1% - 2% risk?  

VeganGal, to your question, I've found that there is so much great information available on the internet.  The key is to ensure that you read reliable websites.  BC.org is a great place to start. Some hospitals have great websites about breast cancer.  The NCCN treatment guidelines provide information about current treatment standards - the patient version has a lot of handy information for patients and the physician version provides detailed information about treatment options. Searching through PubMed can also provide a lot of interesting information.  If you find one article or study that interests you, usually there is a list of related articles that you can also click on so you can quickly learn a lot about a topic.   

VeganGal: I read the book "From Zero to Mastectomy," by Jckie Fox.  The author writes about her personal experience with DCIS.  She shares her cancer journey with humor and honesty.  Loved the book.  I had to order it through Amazon because I couldn't find it at any bookstore. 

Send you positive thougths your way!

tucker,

I can't tell from what you've written whether the IDC was also grade 3.  I've seen a couple of studies that suggest that usually DCIS and IDC that are found together are the same grade, but mine wasn't and I know of others here who also had different grades for their DCIS and IDC.  So unless your pathology report specifically said that both the DCIS and the IDC were high grade, there's no way to know if it was or not.

As for the size of your tumor, I'm surprised that the pathology report wasn't more specific in stating the actual dimensions of the invasive component.  Volume and dimension are different things and the size is usually based on the largest single dimension.  But with what you've said, given that your tumor was 50% DCIS volumetrically, I conclude that the IDC probably was smaller than the total dimension of 2.1 cm.   

Did your oncologist or surgeon tell you that you are Stage II?  Or did you come to that conclusion based on the size of the tumor?  When a tumor includes both DCIS and IDC, it's only the size of the IDC component that is considered in staging.  So if your doctors put you at Stage II, then maybe the largest dimension of the IDC was 2.1cm - that's unlikely but still possible even if half the tumor was DCIS. 

Ah, yes, your IDC was grade 3.  It's there in the line that says "poorly differentiated infiltrating ductal carcinoma compatible with 8/9 points according to the SBR grading sysstem (tubule formation 2, nuclear grade 3, mitotic rate 2)"  Both "poorly differentiated" and "8/9" mean grade 3.

And yes, your DCIS was grade 3 too.  That's the part where it says "high grade ductal carcinoma in situ". High grade is grade 3. 

DCIS cancer cells are confined to the milk ducts but they are cancer cells and they can be grade 1, grade 2 or grade 3, just like other cancer cells.  The grade is based on how similar, or dissimilar, the cancer cells look and act compared to other cells.  Grade 1 cells are the least aggressive and the most similar to normal cells; grade 3 cells are the most aggressive and the least similar to normal cells.

DCIS and invasive cancer (IDC) are often found together because most IDC develops from DCIS. The cancer cells start to develop in the milk ducts and then at some point, they break through the duct wall and enter the open breast tissue.  When that happens, part of the tumor will still be in the ducts and part will be outside of the ducts, therefore it's a combination of DCIS (in the ducts) and IDC(outside of the ducts).

Take a look at the diagrams on this page:  http://www.breastcancer.org/pictures/types/dcis/dcis_range.jsp

The example at the bottom, where it says "Invasive ductal cancer" actually shows a combination of DCIS and IDC.  It's very common.  

Edited:  I just added the image here.

 

I had 3 spots on my breast- invasive ductal on one, invasive lobular on the other, and a later biospsy (after 1st 2 lumpectomies done) found DCIS in the right breast, so a subsequent lumpectomy was done.  So yep, I would call DCIS cancer - its just in the early stage!  (Still, I was lucky- all were caught early, and had not gone to nodes.  Guess I won't be skipping any more annual mammograms!)

Gumshoe,

I am in Canada and had to fight for my hormone receptors to be tested. It seems that the provincial cancer care guidelines do not recommend the use of tamoxifen, as there is too little evidence that it reduces recurrence or increases longevity. So surgeons do not necessarily have to order the hormone receptors to be tested to determine if tamoxifen is a good idea.

I now know I am ER+ and PR+ and will get an appointment with a medical oncologist, but there is not a ton of evidence thatI would be better off with tamoxifen.

So, had routine checkup with my onc today.  Had UMX in March for DCIS. Same breast as previous bc 8 years ago which was stage 2A IDC, ER-/PR- Her2+, 1/11 nodes. Onc told me the DCIS is precancer and in fact not really cancer at all! I was pretty surprised by that, and felt like saying (as someone said in an earlier post, and much better than I can manage here)...so why is my left boob now missing! What I did say was, yes certainly pre-invasive, she corrected me and pressed on the not cancer theme. I know all the reasons for the mx of course (couldn't do lump and rads again in same breast, high grade DCIS more likely to tip over into invasive etc.), and it may have been her idea of being reassuring, but somehow it came across as dismissive. Not that any of this is a competition (!?) Still and all, I am very happy I don't have to do any additional treatment this time around, whatever we are calling this bad behavior of my boob.

Ductal Carcinoma In Situ, means from the Latin "In place" it is a cancer that is in one place, not invaded,  It is also called Stage 0.

 But cancer cells are multiplying fast, there is no way to know if the cancer will progress and how fast.

Most people diagnosed are treated because there were too many that later had invasive or infiltrating cancer.