Is DCIS cancer?

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  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited April 2010

    Sure am glad I had routine mammogram even though i'm < 50 and no risk factors, sure am glad my dr. didn't take the watch and wait approach when my biopsy came back as grade 2 DCIS, sure didn't expect that final pathology report said that lumpectomy contained 1.7 mm of invasive -- Surprise!

    I'm obviously so very thankful that it was caught early. No insurance company's going to convince me otherwise.

  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited April 2010

    Should add that by all measurements I was termed "low risk."  Post lumpectomy, I'm now getting rads. and would have certainly needed chemo. had my dr. decided to wait until I "progressed to high risk." What a bunch of bull#$%^.

    I can LIVE with overtreatment. I'm not sure I would be ALIVE with undertreatment.

  • Ina
    Ina Member Posts: 45
    edited April 2010

    Coolbreeze, you are not being very sensitive or sensible, in my view. I am not quite sure why you are posting here if you didn't have DCIS. Those of us who had this difficult diagnosis don't really need any more grief. Waiting for DCIS to be invasive, at which time it acquires another name and stage, is a huge risk. When the cells break out of the duct, you don't know where they have gone, or how fast. You could have mets in no time. Like many others who have posted on this topic, I am tired of people who act like DCIS is not cancer. Do we really need to compete over whose cancer is worst?  Beesie always says it well--there are stages of DCIS, some much closer to invasive cancer than others. I also had grade 3 DCIS, the grade before invasive carcinoma.

    And watchful waiting is not easy--biopsies, MRIs, other painful and invasive tests, all involving scheduling, waiting, etc. etc. etc. Life is on hold in the meantime. Imagine the panic the day you see the radiologist or other doc and he she says, well, it's become invasive--time to act! Too late to catch it before you are certain it hasn't spread.

    My breast surgeon finally recommended mastectomy to me after the first lumpectomy didn't get clear margins., and I "only" had DCIS. I am glad I pursued that option, though I never dreamed I would. I believed in the standard of care--lumpectomy plus radiation, but I would have had a deformed breast after the second lumpectomy and radiation. I chose a single mastectomy and immediate reconstruction. Certainly I wish the whole thing had never happened, but taking carcinoma,  the cancer word, out of DCIS will not make it stop being a danger.

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited April 2010

    I've had 2 dx of high grade dcis (como type) in the right breast, last dx multifocal. I chose  a simple lumpectomy with watchful waiting. Since I am closely monitored the doctor says that if it is found that it would be stage 0 and easily removed. I realized I am high risk for a recurrence. I am hoping that with supplements, diets and exercise I will not have another recurrence. I am not a worrier type of person. Although being dx is a wakeup call to take better care of myself, and to make sure that I am watchful by getting a yearly mri and mammo. But, the problem with watchful waiting, you never quite feel that it's gone. I don't think about it a lot, but at times you wonder if its still there. It's like your journey isn't quite over.

     I am very interested in what is coming out about dcis ... taking the cancer out of dcis. Like someone said, if dcis is not considered cancer then the insurance doesn't have to pay. I wonder how much of taking the word cancer out of dcis is movtivated by $$$ and if it happens, will it eventually change treatment protocol. High grade cancer cells are disorganized, very aggressive with neurosis. If it looks and acts like cancer, its cancer. When my first final pathology came in (after lumpectomy) the nurse said, congraduations, it's the good cancer. Stage 0 is the curiable cancer. I wondered then if it wasn't invasive then why be concerned. Thanks to Beesie, I've learned a lot since then.

  • hellome
    hellome Member Posts: 41
    edited April 2010

    I am definitely having an issue with this. I was recently biopsied, sample showing DCIS. I don't know about grade or any of that, but I do know it is Estrogen and Progesterone positive based on my history of DCIS. This was in 2001 where I had lumpectomy/partial mastectomy and radiation. I opted not to take Tamoxifen because at that point there was no testing for estrogen receptors.

    So now it's back. My options seem to be primarily mastectomy, because I've already had radiation and shouldn't get it again. Also it seems to be a recurrence (i.e. in the same spot as the last time) so the radiation oncologist seems to think it is resistant to radiation anyway. So my only other option (and if I totally refused to have a mastectomy against doctors advice, - surgeons words) would be to have another lumpectomy, where the surgeon said she would try to get sufficient margins, take tamoxifen, and then play the watch and wait game. Or of course I could do nothing as the OP suggests and watch and wait. 

    My problem is my family (kids and husband) are insisting I have the mastectomy, since that is the safest in terms of recurrence. But in a recent twist I found out my mother doesn't think I should have it, and basically said that it wasn't "real cancer." If it has been up to her I wouldn't have gotten the first procedures done in 2001. She insisted on coming to my doctors appointments and even yelled at my then surgeon all but accusing him of being a liar when he said that I may have cancer and I should have surgery (had surgery and biopsy at same time.)

     So now I am torn. I often regretted having the prior surgery because I became convinced over time that it was unnecessary since the cancer/DCIS never came back, and believed maybe my mother was right all along. That they were just trying to make money from me, that this was a made up diagnosis, etc. Then when it came back again she insisted on coming with me to appointments and even though she heard all the information (supposedly to the point of being overwhelmed) and supposedly trusted all the doctors, somehow she still feels like its an overreaction and wouldn't do it if she were me. 

    I'm still pretty young (50) so there are probably quite a few years there that things could happen. Also my kids are still fairly young, my youngest just turned 13.  Who do I listen to? Is my mother the crazy one, or am I?  I guess my fear is that I'm going to have this surgery and in 2 years time there is going to be some kind of breakthrough that said I didn't need to. But I am also afraid that this will become invasive and then I'll regret not doing it.  

  • hellome
    hellome Member Posts: 41
    edited April 2010

    Oh yes, I also have a family history. Interestingly enough my mother's sister died of breast cancer. I think she was first diagnosed when she was about the age I was at first, around 40. I just wish I (she) had known if she had had DCIS first.

  • hellome
    hellome Member Posts: 41
    edited April 2010

    More to the OP (and thanks because this has got me thinking about this more intellectually and logically.)  I'm remembering that where this "it may turn invasive it may not" theory came from a study involving the autopsy of X number of women who died from causes other than breast cancer. And what they found was that 10% of them had evidence of DCIS. From that they theorized that women could live with DCIS and that treating it similarly to invasive cancer was overtreatment.

     But here is the thing. I just looked up the statistics on the National Cancer Institute's website, and it says a woman's lifetime risk of being diagnosed with breast cancer  in 2001-2003 was 12.7%. This is down from 13.4 in 1997-1999.  So I am thinking that just because these women had DCIS that hadn't turned invasive, doesn't mean that it might not have had they lived longer. Since the rate they found it seems fairly consistent with the rate that BC has been diagnosed the last 15 years..

    As far as I know, this is the only reason there is this theory that DCIS might not turn invasive. I have looked and looked (believe me lol) to see if there are any studies that followed women who chose not to treat their DCIS. There probably are none I assume because it would be deemed unethical. I know that I was trying to find rates of recurrence for excision alone without radiation to try to weigh my own options if I had the lumpectomy vs. mastectomy. And the only one I could find had to close early because the recurrence rates were sufficiently high without radiation that it seemed irresponsible to continue.   

    I recently read that, despite some criticism that early detection and treatment is over treatment, that many feel that it is early treatment that has brought the mortality rate for BC down. So I don't know. Maybe listening to the docs vs. the conspiracy theorists is best? 

     

  • desdemona222b
    desdemona222b Member Posts: 776
    edited April 2010

    When I was in radiation therapy, a fellow patient told me she chose "watch and wait" on the radiation therapy because she had DCIS and had a recurrence within a year.  No thanks.

  • sweatyspice
    sweatyspice Member Posts: 922
    edited April 2010

    hellome - My rad onc, rebel that she is, said she's radiated people twice.  Since I'm in round one of this I didn't press for details - but it might be something you'd want to investigate.

  • robinlbe
    robinlbe Member Posts: 585
    edited April 2010

    Hellome, I am also 50.  I was diagnosed for the first time in November.  My left breast was full of DCIS, grade 3.  I had two surgeries, and still couldn't get clean margins.  I was stage 0, as it hadn't become invasive yet.  I, too, researched.  I did not want to take the chance.  My youngest is 12, and I have three kiddos (oldest is a freshman in college).  I opted for a BMX.  I really didn't want to go so extreme, but radiation was not an option for me.  My breasts were too small to take any more breast tissue, so the entire left breast had to go.  I was 90%ER and 60%PR, and I'm premenopausal.  I did NOT want to take tamoxofen.  I had researched that drug and did NOT want to put myself (or my family) through those side effects.  There is a lot of cancer in my family, although not a lot of BC (not many women)....I have gone through genetic counseling/testing (and will be getting my results soon - the counselor called and left a message today asking me to make an appt to discuss the results.) 

    I did not want to put my family (or myself, for that matter) through the time, the emotions, or the finances of going through all of this again - which was another reason to go for the BMX.  To me, sitting with DCIS in my breast was like playing Russian Roullette (sp??).  Maybe it would turn invasive, maybe it wouldn't.  Having lost my dad to an aggressive form of lymphoma, watching him take chemo, I did NOT want to have to go through that - so if I could keep myself from going through that and keep my family from watching me go through that, then I would do whatever it took.  And I did.

    Of course, that's just MY take on it. 

    I think that we're blessed to live in the days and times we are, where the mammograms are so sophisicated where they can see these tiny calcifications, which are the indicators/by-products of the cancer.  Last year (2008), they didn't show up on my annual mammo.  This yea (2009), they did.  Ten years ago, this probably wouldn't have been caught, and I might not have known until I felt a lump....and by then, it could have been invasive....and my battle might have looked totally different.

    In a few days, it will be three months since my BMX.  I wish I had never had the DCIS in the first place, but since I did, I'm glad it was caught early, and I'm also glad I've done everything in my power to keep from having a reoccurance.

    blessings....robin 

  • ms_marsh
    ms_marsh Member Posts: 2
    edited April 2010

    Everytime I read about this issue I think about the conversation I had with my breast surgeon when she gave the results from my biopsy.  She told me about the debate within the medical community regarding DCIS being cancer or not being cancer.  I asked her if that wasn't the same kind of thing as being a "little bit pregnant"...you either are are you aren't.

  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited April 2010

    So many interesting posts on this thread. Just wanted to clarify for those that may be taking a watch and wait approach because they only have grade 1 or 2 DCIS, or for those that are feeling regrets because they may have overreacted and had surgery when they just had grade 1 or 2 DCIS, DCIS DOESN'T HAVE TO FIRST BE GRADE 3 BEFORE THERE'S IDC.

    My stereo. biopsy resulting after my routine mammo. (at age 44) saw a few small calcs that might be clustered had all the signs of nice innocent DCIS -- good shape, low grade 1 and 2, blah blah blah, everything peachy. I have no family history, genetic testing was negative for BRCA1 and BRCA2, no other warning signs or known risk factors, normal mammo. the year before, I take zero medications, sister and mom never had irregular mammo., etc.

    Surgeon didn't take any sentinel nodes during lumpectomy, why should he, odds were it would be just plain old low to medium grade DCIS.

    BAM! Lumpectomy pathology lists 1.75 mm microinvasion. Now I'm stage 1. Referred to an oncologist because surgeon thought might need chemo. and have second surgery to check nodes. I am very very thankful that no nodes were involved YET and at < 1 cm, no chemo was prescribed. BUT CHEMO WOULD HAVE BEEN PRESCRIBED HAD I CHOSEN WATCH AND WAIT, BECAUSE 1.75 MM OF INVASIVE DOESN'T TYPICALLY STAY THAT WAY.  

    Do not think for a moment that DCIS isn't cancer. Fight it like you'd fight cancer, and have no regrets that you fought it. Later today I will have my 23rd rad. treatment (of 30), with minimal/manageable side effects to date, and I'm VERY glad to irradiate any stray cells that may have eluded the lumpectomy.

  • dreaming
    dreaming Member Posts: 473
    edited April 2010

    It is cancer that is contained, had not invaded other areas.  First I was diagnosed with  DCIS with biopsy, I wanted the most agressive treatment no matter what, changed doctors and hot the mastectomy I felt I needed, thank God I did that, a second cancer was found that was invasive and different,  None showed in mamography and ultrasound. I did not have lumps neither.

  • MarieKelly
    MarieKelly Member Posts: 591
    edited April 2010

    CTMOM1234 wrote"...So many interesting posts on this thread. Just wanted to clarify for those that may be taking a watch and wait approach because they only have grade 1 or 2 DCIS, or for those that are feeling regrets because they may have overreacted and had surgery when they just had grade 1 or 2 DCIS, DCIS DOESN'T HAVE TO FIRST BE GRADE 3 BEFORE THERE'S IDC...."

    That's all very true, CTMOM - it's definately not just high grade DCIS that becomes IDC. Mine was both IDC and DCIS and both of those components were grade 1 and very non-aggressive (Ki-67 just 5%). My grade 1 DCIS turned invasive sometime during the 7 to 8 year interval between a negative mammogram I had in 1997 and the very next one I had at diagnosis in 2004. 

    However, as I was just explaining to someone else in an e-mail earlier today, there's a VERY big difference in the metastatic potential of a low grade IDC as opposed to those that are high grade.  So for example, having a well differentiated, grade 1 DCIS become invasive isn't nearly as big of a concern as having a DCIS that is highly aggressive become invasive. They're two completely different entities.

    The word "invasive" scares the hell out of people and in some cases it definately should, but not everyone needs to be absolutely terrified of their DCIS becoming invasive someday. Even if it does, the chances that it will result in metastatic disease (which is the only thing about breast cancer that ever kills anyone) is relatively low. My DCIS became invasive - 60% of my tumor was IDC and the remainding 40% was DCIS at diagnosis - yet I'm alive and well with no problems  6 years later after no treatment at all other than a lumpectomy. I refused all other treatment because I was reasonably sure (and still am) that I didn't really need it  The standards of care, be it breast cancer or anything else, are all designed to treat the most aggressive case scenarios and those standards results in the least worrisome cancers (small and low grade) being overtreated in order to ensure that none of those with the more aggressive and high risk disease slip through the cracks with undertreated. 

    To those of you out there with well-differentiated, low grade DCIS, especially older ladies for whom it's more prevalent - don't let your fears dictate treatment that might be unnecessary for you. While I would never advocate the watch and wait approach (i.e. no surgery), not everyone needs radiation and/or anti-hormonal treatment.  First educate yourself and take all the time you need to really think through your treatment options, even if that's many months.  Don't let the medical professionals put a time limit on your decisions because there is absolutely no urgency with low grade DCIS.  A small, invasive cancer that's low grade isn't a disaster in any sense of the word either and it's not something that's very likely to eventually lead to your demise, so don't let your mind wrap itself too solidly around that "invasive" word.  It's just a descriptive word - not a prognosis.

  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited April 2010

    To MarieKelly - You wrote " . . .there's a VERY big difference in the metastatic potential of a low grade IDC as opposed to those that are high grade."

    Nothing on my pathology report refers to the IDC grade. Does yours? I would love to find comfort in knowing that my IDC isn't as scary as it sounds, because truthfully, when I hear invasive, my mind goes to "this is going to kill me unless I zap the heck out of it."

    I also do not understand how you know the percentage of DCIS v. IDC. Is it that you had a lump/tumor and they listed all of this on your pathology report? I had extensive DCIS with I guess a piece of IDC that escaped the duct but at 1.75 mm, not a lump.

    It is wonderful news that you are doing so well! I'm in my 40s now and certainly hope I've beaten this thing, although there are days when I let the fear take over.


    Diagnosis: 11/1/2009, IDC, <1cm, Stage Ia, 0/3 nodes, ER+/PR+

  • MarieKelly
    MarieKelly Member Posts: 591
    edited April 2010

    Yes, my path reports (biopsy and surgical) give both the DCIS portion and IDC portion of my tumor a grade. They further call the IDC portion "NOS with tubular features" and grade it I/III which is grade 1 and the DCIS is called "cribriform'' and also graded I/III. Neither report actually says  that 60% of the tumor was IDC, but they do say that 40% was DCIS which would logically leave the remainng 60 % as the IDC since there was no mention of any other type of abnormality or cancer.

    If you've had some IDC identified in your pathology, then it should have a grade.  Look it over again and see if it's there somewhere..

  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited April 2010

    MarieKelly - Thank you and how right you are. The pathology report contained so much that I didn't initially fully grasp, but now I do comprehend that both the DCIS and the IDC are reported as grade 2.

    Don't really find comfort in the fact that my DCIS is grade 2 -- a lot of good that did, skipped right over grade 3 and into micro-invasive -- and I know that folks say that grade 2 is slower growing than grade 3, but none of this showed up on the previous year's routine mammogram so to heck with the grades. DCIS is cancer.

  • MarieKelly
    MarieKelly Member Posts: 591
    edited April 2010

    CTMOM1234 wrote: Don't really find comfort in the fact that my DCIS is grade 2 -- a lot of good that did, skipped right over grade 3 and into micro-invasive...

    ________________________________________________________________________________ 

    I got the impression in reading the above statement that your understanding of breast cancer grade is that it is a step wise progression from lower to higher grade which eventually results in invasion when it reaches grade 3. And that invasion can be expected only when it reaches stage 3. Neither is true. 

    Many years ago, a popular theory was that there is grade progression in breast cancer. More recently however, with the advent of genetic profiling, that theory has essentially been disproven although a few still steadfastly believe in it.  Molecular studies on breast cancer have shown that histological grade is an independent pathological entity and NOT a progression from one grade to another. So to put it simply, there are different subtypes of breast cancer that each have different chromosomal abnormalities which distinguish low grade from high grade. These differences are evident in the very earliest stages of disease - literally, from the moment it first forms. It's all genetically pre-programmed to be what it will be from the very begining.

    Low grade breast cancer starts out as low grade breast cancer and continues to be low grade breast cancer as it progresses through the various potential stages of disease - and the same goes for high grade breast cancer. The grade doesn't change or progress - only the stage progresses. The transformation from non-invasive to invasive disease can happen with any grade and at any time,  However, it's more likely to happen sooner with higher grade disease. So your cancer didn't "skip right over grade 3 and into micro-invasive". Your cancer was simply a grade 2 that had become invasive - and if by chance that particular cancer is still present lurking somewhere or reoccurs someday, it will very likely still be a grade 2 when re-discovered.

    And something else to be aware of regarding the assignment of a breast cancer to a histological intermediate grade of 2... some research is indicating that technically, there really is no grade 2 breast cancer. They're saying that when examined at the genetic level, almost all grade 2 BC can be divided into either low or high grade and prognostically can be expected to act accordingly.  Which of course, goes a long way in explaining why in just reading the oncotype results posted on this form, we sometimes see such extreme differences in scores for those with same grade tumors and otherwise similar statistics - some get surprisingly low scores while others are much higher. If those researchers are correct (and it appears thus far they are), some people who think they have an intermittent grade 2 tumor, actually have the equivalent of either a grade 1 or a grade 3 - which prognostically, is a major difference.

  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited April 2010

    To MarieKelly - Thank you yet again for the helpful information. I appreciate your taking the time and effort to post, and I continue to learn new things. Thank you.

    More importantly, I'm glad that we are keeping this string, "Is DCIS Cancer?" from falling off page as it is very important to take DCIS seriously.

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