Have I got cancer or haven't I? DCIS confusion...

maize

Have I got cancer or haven't I? Medical staff confuse women with ductal carcinoma in situ

http://www.sciencecodex.com/have_i_got_cancer_or_havent_i_medical_staff_confuse_women_with_ductal_carcinoma_in_situ-88223

lane4

Maize - Thanks for sharing this link. This article really hit home for me, as I have felt so conflicted about this diagnosis for a couple of years now. Some of those quotes sounded exactly like my thoughts.

I know that my doctors treated me according to NCCN guidelines, but now I question the wisdom of it all. And of course it's too late now because the damage is done. If my doctors had called DCIS pre-cancer I would have questioned the need for radiation. Although tamoxifen was recommended, I declined because I feel that the benefit would not outweigh the risks for me.

Wishing you the best!

AnnieBear

My breast surgeon told me DCIS is definitely cancer.  But, if I knew then what I know now ...........  I think I would have handled things very differently.  I probably would have waited longer to even have a lumpectomy.  Probably would not have had radiation.  But, I'm still happy I never took Tamoxifen.  I also don't think the benefit outweighs the risks for me.  But everyone is different.

akinto

I also think it depends on how aggressive the DCIS is.

 In my case, it was very aggressive. Just because it was only in my ducts didn't mean it wanted to stay there!

 I am glad to throw radiation at it. Really glad.

BLinthedesert

I am with akinto -- as much as I dreaded, and hated the idea of, radiation ... at the end of the day I am glad with how things turned out; and, I trusted my medical team and am glad I listened to them.  I feel at peace that I did everything I could to ensure I am done with DCIS and any subsequent (especially worse) prognosis in that breast -- all while keeping my breast! In my mind, I still feel lucky it wasn't invasive, and I want to do whatever I need to reduce my risk of ever having invasive cancer.

It was a painful process at the time -- emotionally, but in retrospect, it was a tiny bump in the road.  

3monstmama

another person with the aggressive DCIS here who is happy to have taken the steps I took in treatment.

Definitely an interesting article.  During the whole experience, one of the most difficult things was dealing with other women who were being treated by surgeons who didn't consider DCIS to be real cancer.  That was rough because they had a mind set of not really taking aggresive action and I felt unsupported in the decisions I was making about my own care.

Infobabe

maize

You need to state your grade and hormone status, positive or negative.  All DCIS is Stage 0.

Mine is very low grade.

But if a person is grade 3,  and if hormone negative, it's a different story and must be addressed.  

I did refuse rads  but a strong possibility is a mastectomy just to be done with it and quit worrying.  

Presently, my pathology from the lumpectomy is under review for a second opinion. 

maize

I was told it was a cancer, period.  I was also told it was a precancer (about a week and a half after surgery had been done).  I was not told that it was not life-threatening as it stood in situ.  Sometimes,  I imagined that it might have spread to the lymph nodes and throughout my body and was anxious for weeks through the wait until the final pathology report results were given to me. I also didn't know if there were other areas of DCIS or if there was some other type of cancer somewhere else in the body that caused the DCIS. Being told you have a cancer is one scary thing.

When I look at pictures of how cancer initiates and progresses, DCIS looks to me like a blob of abnormal cells growing weirdly that have not become a bona fide cancer, at least not yet, because the abnormal cells have not broken through the base membrane. Evidently, sometimes it breaks through the membrane and sometimes it doesn't.  That's my take on it.  It seems that the most frequent solution seems to be to "kill it before it grows" or "cut it out before it grows". For me, having surgery seemed to be absolutely necessary and as soon as possible. I didn't know that some women don't have surgery ASAP and that some even refuse surgery. 

There seems to be a great debate among the experts about whether it will ever become invasive, about whether or not, even with grading systems, it is possible to know if one woman who has DCIS will later get invasive disease or not. A strange thing is that some studies have found that women who have had DCIS treated may actually live longer than women in general (104%???)   Maybe they take much better care of themselves after being diagnosed with DCIS? And some deceased women have been autopsied who apparently had long-standing DCIS that never became invasive--they died of other causes.  Some doctors even think DCIS necrosis is from "cellular debris" from a battle going on within the body (in an attempt to correct the imbalance that may have caused the DCIS.)  If I understand what I read, even if it becomes microinvasive, the survival rate is still very good. 

I asked if estrogen (too much estrogen, an imbalance of hormones) caused it and was told: "No." But some forms of DCIS respond to anti-estrogens that reduce it's ability to feed on estrogen. Progesterone is important, too, but I don't know in what way and when asked did not really get a thorough explanation that I understood. There may even be other hormones involved.

I do not know much about the receptor negative types of it, but did read that if receptors are negative in cancers, the woman may have to have chemo.   I agree that everyone has to take their best guess as to what to do about it based on what they have been told about the type they have and what is known about the presence of receptors or lack of receptors and without knowing some things. If the specialists don't agree about what it is and each case in individualized, depending on many factors, then women don't know what to think.  Some women, too, feel more comfortable letting the doctors decide the best course of treatment because they are the experts, and some need to study the real risks and benefits of treatments for themselves that are offered before they undergo treatment and want more involvement in the decisions.  The oncologists, pathologists, surgeons aren't all in agreement about it at all--and I can understand why the women written about in that article were confused. I didn't understand it, either, and still don't, really.  Lane4, best to you too!

maize

One woman said she felt like she was being punished, in a way, being told that she had to have a mastectomy because the DCIS was in more than one area.  She felt like she was sort of being punished for being diligent about getting a mammogram and because the abnormal cells were discovered early, because if she'd had Stage 1 cancer, she might've have the option of a lumpectomy, if she chose that. 

The absolute benefits versus relative benefits are so confusing to me.  Evidently. what might reduce risk of recurrence for 100 women all together might help an individual woman by only 2% or 3%, but have side effects that are either bearable, unpleasant or intolerable.

There's also the concern that in addition to side effects, there is the possibility of getting other cancers as the result of some treatments.  How do you weigh the real world, individual woman's risk of getting cancers from treatment versus the risks of not getting those treatments?  One of the drugs, it is claimed, has a low rate of causing cancer, but from some of the comments I've seen, the rate of actual cancers may be higher than claimed.  Who wants to trade DCIS off for some other type of cancer?

Since the cases of DCIS have soared since the 1980s when they became "visible" through tests, but the rates of invasive cancers being discovered hasn't changed much, maybe there needs to be serious work done towards finding more options for adjuvant treatments for DCIS.

BLinthedesert

DCIS is a bonafide cancer.  It has not developed outside of the ducts, and some DCIS won't invade outside of the ducts.  But, even if it does not invade it is likely to continue to grow within the breast ducts - that is what cancer cells do, they multiply.  Some do it more slowly (grade 1) and some more quickly (grade 3), but they all multiply and spread.  Surgery is a first step in removing obvious cancer cells.  Radiation kills any cells that have already spread through the ducts, but are not large enough to be seen on any imaging modality yet.

By way of example, DCIS is not like non-melanoma skin cancer (basal cell) - because basal cell carcinoma won't ever become invasive -- however basal cell carcinoma will continue to grow and eventually push other tissues around.  However, DCIS *is* like melanoma in-situ -- a cancer that has not yet turned invasive, but has the machinery -- and propensity to -- turn invasive.  

Everyone in the medical community agrees that lumpectomy +radiation for all DCIS is overtreatment for some ... but no one (not onoctype DCIS, not VNPI, etc) has a validated test that differentiates between those who are likely to recur after lumpectomy alone (with either DCIS or invasive cancer).  And by validated I mean tested in an independent group - not just within the group that developed the test.  So, at the end of the day, it is about your personal risk tolerance.  

Cindyl

Yeah my DCIS was grade 1 but it still managed to grow into a robust IDC 3.5 cms with a couple of little friends.

BLinthedesert

Cindyl -- wow!  3 cm!   I think that the "background" of cancer (DCIS or IDC) matters -- meaning a small foci of DCIS in a "normal" background is different than a small foci in a background of ADH; as well as a small foci of IDC in a "normal" background is different from a small foci of IDC in a background of DCIS.   I have read a couple articles that suggest that when DCIS and IDC are found in the same breast they have the same grade -- which is, in part, why grade 3 DCIS is so dangerous (IF IDC does occur it is likely to be grade 3 as well). 

maize

I have heard before that a low grade DCIS can certainly become an invasive ductal carcinoma, but that it isn't as likely as it is with a high grade area of DCIS and that there can be more than one type and grade of DCIS in the same breast and that one may be estrogen receptor positive and the other area not.

Do some of the treatments ultimately (in the long run) do more harm than the good they do initially, resulting in an unacceptable amount of secondary cancers, etc.,  sometimes 5, 10, 20 years later--and if they do, then there needs to be research into developing safer treatments.  It is known that patients who had treatment to the chest area for Hodgkin's lymphoma later are at a significantly higher risk of breast cancer--maybe there is some way to further reduce the risk?  It may be that some people undergo treatments and never develop late effects from them.

 http://cancerhelp.cancerresearchuk.org/type/hodgkins-lymphoma/treatment/radiotherapy-for-hodgkins-lymphoma

Radiotherapy for Hodgkin lymphoma isn't exactly the same as treatment for breast cancer, but it is still radiotherapy to the chest area. There may be different doses of radiation, different amounts beamed at the chest for that type of cancer and different levels of risk.   I think one doctor who said it is right:  there needs to be a lot more research done regarding DCIS and research directed toward finding more treatment options.  There's no question, IMO, that people at higher risk need to do more to prevent recurrence or the development of infiltrating disease than they do if it's low grade DCIS.  I just wish there were more treatment options. It would help if there was a true consensus on what constitutes high risk of infiltration and what the best treatment options are, all things considered.

Stem Cells For Dummies

Lawrence S. B Goldstein, PhD

Director, University of California, San Diego Stem Cell Initiative

Meg Schneider

Award Winning Journalist

"The traditional treatments for cancer are surgery to remove as many cancer cells as possible, and chemotherapy and raditon to zap any cancer cells that remain in the body. But if cancer stem cells have the same kinds of defenses that normal cells do, they may be able to pump out chemicals designed to kill them and send out enzymes to get rid of the ROS (reactive oxygen species) generated by radiation treatments. "

"As it turns out, that may be exactly what happens in cancer stem cells-or at least in some kinds of them. Some researchers have discovered evidence that the cancer stem cells in some cancers, including breast cancer, repair DNA damage more readily after radiation treatment than other types of cancer cells do. Researchers have recorded similar results in tests on human head and neck cancers, too."

"These stem cell defense mechanisms may explain why traditional cancer therapies can knock down cancer but often can't knock it out. The therapies that are most effective at killing nonstem cancer cells apparently deal only glancing blows-if that-to cancer stem cells. It's like the archetypical alien invasion movie, where mankind's most powerful weapons can't penetrate the mother ship's force field."

mariannm

I am very thankful I had a bilateral masectomy.     When they originally performed the lumpectomy, they expected that to be 'end of story'.  The path results came back with five tumors in the right side, and positive results up to the margin.   When I got the path results back from my mastecomy, the cancer was all the way to the end of the breast tissue...the thin layer between the breast tissue (which they called saran wrap) was clear of cancer, but they could see changing cells.    My lymph nodes were clear.   i escaped radiation treatment, but it sounded like it was a matter of weeks before it had extended beyond my breast tissue.  In the beginning, the doctors kept saying it was non-invasive, and I finally asked if it would become invasive at some point.   The doctors suggested there was an 80% chance of this.   So, I am very very thankful that I got it as early as I did and feel good about my choices.

BLinthedesert

One of the few studies that was able to track the "natural history" of DCIS - they were 28 women who were misdiagnosed ... 11/28 developed IBC, 3 of them 40 years after their original misdiagnosis.  All were grade 1 - or low grade. 

http://www.ncbi.nlm.nih.gov/pubmed/15884091

maize

Mariannm,

I'm glad you are happy with your decision.  It's good the lymph nodes were clear!

BLinthedesert,

Thanks for the link!  40 years! Astonishing!   I have been looking for a study and only found reports that they didn't know the natural history yet.

"When women are diagnosed with DCIS, it is not a medical emergency," she says. "They should take the time they need to truly understand what they have and the risks they face and the treatments they are being offered. They should try to make as educated and as non-emotion-driven a decision as possible for their survivorship and care."

http://www.webmd.com/breast-cancer/news/20080212/patients-doctors-overrate-dcis-risk?page=2

"Until we know more, many experts believe the only option is to treat them all as if they're destined to break out of the milk ducts and into the remaining breast tissue. "Sometimes, with surgery, radiation and tamoxifen, we end up treating DCIS more aggressively than we do some invasive cancers," says Love. "It's a crime that we don't really know what to do."

http://www.more.com/dcis-breast-cancer-treatment?page=6

What Dr. Laura Esserman says: (from DCIS411)

http://dcis411.com/why-dcis-411/

There are so many professional opinions...One doctor said DCIS cannot be called a cancer because cancer is, by definition, invasive, and DCIS is in situ, but other specialists disagree with that.   There's always this fear that it could come back or come back as invasive.  I think that a lot of women automatically fear that it's a death sentence because they don't know what DCIS is.  It's also difficult because until your doctor actually has done the surgery and has the final pathology report, he or she can't give you a definitive diagnosis and prognosis, so in the meantime, you imagine all sorts of things. I didn't know that DCIS is not imminently life-threatening or that it doesn't invade via the bloodstream or lymph nodes because it is contained, at least for the time being.   I did know that abnormal cells could invade other tissues.  I didn't know how fast they could do that, until I read that some cancers double in 23 days and some take much, much longer to double.  I did understand that the doctor could not tell me in advance.  I didn't know whether mastectomy would be the smartest choice or lumpectomy and couldn't just say: "Give me a few months to think about this" or "This is too hard, so I am not going to deal with it."  There are so many unknowns.   I am grateful that it was discovered and could be removed.  Every day I thought about how many women out there don't know they have a growth of abnormal cells and so don't get treatment.

Though I guess it's a better type to have in some ways, this DCIS, I don't feel lucky, really. Lucky would be not having had it.  Some say that cancer is a "gift"...I'm glad for them that they can see it that way. I admire the strong women who fight the battle against cancer with such courage.

(Mine was 1.2 cm and intermediate to high grade, cribiform; 3 sentinel nodes were biopsied and there was no evidence of cancer cells in any of the nodes, and the margins were clear.  ER+, PR+, and they didn't test for HER2neu.  There was also infection around the area that complicated diagnosis. Two labs had somewhat different results.  My doc was wonderful, the best).

maize

"These terms are related since they represent the three steps of the progression toward cancer:

Dysplasia is the earliest form of pre-cancerous lesion recognizable in a biopsy by a pathologist. Dysplasia can be low grade or high grade (see CIS below). The risk of low-grade dysplasia transforming into cancer is low.

Carcinoma in situ is synonymous with high-grade dysplasia in most organs. The risk of transforming into cancer is high.

Invasive carcinoma, commonly called cancer, is the final step in this sequence. It is a disease that, if left untreated, will invade and spread to surrounding tissues and structures of the host (hence its name), and may eventually be lethal."

http://en.wikipedia.org/wiki/Carcinoma_in-situ

"Dysplasia vs. carcinoma in situ vs. invasive carcinoma

These terms are related since they represent the three steps in the progression of many malignant neoplasms (cancers) of epithelial tissues. The likelihood of developing carcinoma is related to the degree of dysplasia.[3]

Dysplasia is the earliest form of pre-cancerous lesion which pathologists can recognize in a pap smear or in a biopsy. Dysplasia can be low grade or high grade (see "Carcinoma in situ," below). The risk of low grade dysplasia transforming into high grade dysplasia, and eventually cancer, is low. Treatment is usually straightforward. High grade dysplasia represents a more advanced progression towards malignant transformation.

Carcinoma in situ, meaning "cancer in place", represents the transformation of a neoplastic lesion to one in which cells undergo essentially no maturation, and thus may be considered cancer-like. In this state, epithelial cells have lost their tissue identity and have reverted back to a primitive cell form that grows rapidly and with abnormal regulation for the tissue type. However, this form of cancer remains localized, and has not invaded past the basement membrane into tissues below the surface.

Invasive carcinoma is the final step in this sequence. It is a cancer which has invaded beyond the basement membrane and has potential to metastasize (spread to other parts of the body). Invasive carcinoma can usually be treated, but not always successfully. However, if it is left untreated, it is almost always fatal"

http://en.wikipedia.org/wiki/Carcinoma_in-situ

Beesie

Maize, there are many great sources of information about DCIS, but I wouldn't count Wikipedia as being one of them.  I'm not saying that the info posted there may not be correct, but in general Wikipedia is not a vetted site so anyone can put down anything and there is no way to know what is correct and what is not.  If you are interested in finding research on DCIS research, I'd suggest that you use PUBMED.  And for reliable information, I'd suggest that you look to websites such as breastcancer.org (their information pages, not the Discussion Board), the Mayo Clinic site, the NCCN site, the National Cancer Institute, etc..

As for Dr. Esserman, she is so full of c^@p that it's not funny.  She has an agenda and she is pushing hard on that agenda, putting herself in front of the media at every opportunity. Reading the article that you linked to, here are some of her very concerning and/or proven to be factually wrong, statements:

"Less than 5% of DCIS turns out to be something else, including invasive cancer."  Absolutely untrue.  Many studies have shown that approx. 20% of biopsies that show DCIS in the end turn out to be invasive cancer, once the surgery is done and all the affected area is analysed.  Approx. 15% of that 20% is DCIS-Mi, DCIS with a microinvasion, which was my diagnosis and is the earliest Stage I breast cancer; the other 5% represents a much more serious diagnosis. 

"Only high-grade DCIS is likely to progress to invasive breast cancer."  Absolutely untrue. Studies have shown that Grade 1 DCIS can and does evolve to become Grade 1 IDC, Grade 2 DCIS can and does evolve to become Grade 2 IDC, and Grade 3 DCIS can and does evolve to become Grade 3 IDC.  Grade 3 DCIS on average evolves to become IDC more quickly than Grade 1 DCIS (which can take 10 years or even 20 or 30 years to become invasive). Grade 3 DCIS, in becoming Grade 3 IDC (as it usually but not always does), it is also much more dangerous once it becomes invasive, but to suggest that lower grade DCIS is not likely to progress to become invasive breast cancer is a flat out lie.  

"If it doesn't look like high-grade DCIS, we should leave it alone. We would eliminate two thirds of all biopsies if we did."  How does one determine if it looks like high grade DCIS? It's impossible!  My calcs looked only moderately suspicious... but I was sent for a biopsy anyway.  My stereotactic biopsy showed only ADH... but my surgeon suggested that it would be prudent to have an excisional biopsy.  My excisional biopsy showed high grade DCIS with comedonecrosis and a microinvasion of IDC.  Stage I.  My mastectomy uncovered more high grade DCIS with comedonecrosis - all of which never showed up on my mammogram.  In total I had more than 7cm of high grade DCIS and 1mm of IDC.  If Dr. Esserman had been my doctor, she would not have even suggested a biopsy.  What would have happened then?  By the time my cancer was removed, there's no question that there would have been more invasive cancer.  Would I have had positive nodes by that time? Would I have needed chemo by that time?  Would I have developed mets as a result of the delay in diagnosis? 

"Is the purpose of mammography screening to look for DCIS? No"  Who decides this? The purpose of mammography screening is to look for breast cancer.  DCIS is the earliest stage of breast cancer, caught at a stage when the cancer cells are contained in the milk ducts and cannot metastasize. So the question is, is it better to remove the cancer at a point when it can do no harm and when only minimal treatment is necessary, or is it better to ignore the presence of cancer at that stage and wait until a more serious cancer develops, requiring more toxic treatments and putting the patient at risk of death? 

I think it's important to really understand DCIS and to determine what treatment is really necessary for each different diagnosis. I happen to agree with those who worry about over-treatment - I think there is a lot of over-treatment.  But what should never be lost in this discussion is the fact that DCIS is a very varied disease; some diagnoses present little risk while other diagnoses present much greater risk (note however that all diagnoses present some degree of risk).  I applaud the work that is being done within the medical and scientific industries to better understand the biological factors that make some cases of DCIS very threatening and make other cases more benign.  The problem with Dr. Esserman and others like her is that they are jumping the gun.  At some point, when we have more information, it may be possible to segregate DCIS into two different diagnoses, one that is a pre-cancer and is no longer classified as being "DCIS", and another that is an early stage breast cancer, and remains under the name "DCIS".  I believe we will get to that. But we are not there now, and everyone, even Dr. Esserman, knows that.  To suggest to patients today that some types of DCIS show be ignored and not diagnosed and/or not treated is irresponsible.  It's playing with patients health and well-being, and maybe even with their lives.  

Beesie

Maize, one other caution as you are searching for information.  While websites started by individuals (such as DCIS411) are usually well-intentioned, they generally are not the best place to expect to find unbiased information.  Individuals who set up their own sites usually do so for a reason, and it may be because they have a particular perspective that they want to share. This means that the information they include might only reflect what they can find that supports their personal perspective. The information might not be representative of the overall understanding or the medical consensus on a topic.  The content on these types of sites rarely is vetted by doctors so you need to be careful in drawing any conclusions from what you read there.

Beesie

Here is some information to support my earlier comment that Dr. Esserman's claim that only 5% of DCIS turns out to be "something else, including invasive cancer" is absolutely untrue.

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First, this article talks to the prevalence of DCIS-Mi (DCIS with microinvasion) among DCIS diagnoses, and discusses the likelihood of nodal involvement among patients with DCIS, DCIS-Mi and diagnoses that are primarily DCIS but have somewhat larger (than microinvasion) amounts of IDC.  Source: Ductal Carcinoma In Situ, Complexities and Challenges   http://jnci.oxfordjournals.org/content/96/12/906.full

"DCISM is seen in approximately 14% of DCIS cases"  

"Another study examined outcomes in a total of 1248 patients, including 722 patients with DCIS; 72 patients with DCISM type 1, i.e., with a few single infiltrating tumor cells; 171 patients with DCISM type 2, i.e., a cluster of infiltrating cells; and 283 patients with IDC-DCIS, i.e., a gradable infiltrating focus of carcinoma classified as infiltrating ductal carcinoma with a predominant DCIS component (62). Patients with DCIS and DCISM type 1 had better metastasis-free and overall survival than patients with DCISM type 2, and patients with DCISM type 2 had better metastasis-free and overall survival than patients with IDC-DCIS. Axillary lymph node metastases were observed in none of the patients with DCISM type 1, in 10% of the patients with DCISM type 2, and in 27.6% of patients with IDC-DCIS. Until prospective data are obtained incorporating the new definition of DCISM and comparing its outcome with those of DCIS and invasive carcinoma, it seems prudent to categorize DCISM as a small invasive tumor with a favorable outcome and to base prognostic and treatment decisions thereupon accordingly." 

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The following presentation is really interesting in it's discussion and comparison of ADH, LCIS, DCIS and DCIS-Mi.  Source: Problems in the Diagnosis of DuctalCarcinoma in Situ   http://appliedresearch.cancer.gov/dcis/workshop/DCIS_Schnitt.pdf

Page 10 references a study in which they compared the results from a local pathologist to that of a central pathology review for excisional biopsy samples that had been identified as DCIS (therefore those cases that had already been identified by the local pathologist to include microinvasions were not included). They note that the diagnosis changed from DCIS in 9.6% of cases; 5.9% of cases were upgraded to DCIS-Mi or IDC while 3.6% were downgraded to ADH or LCIS or something else.  

On page 53 is a list of 14 studies that looked at nodal involvement for those who had microinvasions.  The percent nodal involvement ranged from 0% to 20%. 

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Lastly, here's a study that specifically looks at the upgrading of DCIS and DCIS-Mi diagnoses to more advanced invasive cancer diagnoses. Source: An update of sentinel lymph node mapping in patients with ductal carcinoma in situ  http://health.usf.edu/nocms/medicine/breasthealth/PDFDocuments/SLN%20Update%20DCIS.pdf 

 "Because DCIS and DCISm are not usually palpable and are mammographically detected calcifications, the diagnosis is usually based on stereotactic core biopsy. There is a high degree of concordance between histopathology of specimens obtained at stereotactic core biopsy and surgical open biopsy, but in 20% of cases of DCIS diagnosed by stereotactic core biopsy, invasive cancer is found after definitive surgical resection"

 "Six hundred thirteen patients (91%) had a biopsy diagnosis of DCIS, and 62 (9%) had a biopsy diagnosis of DCISm. Overall, 66 out of 675 patients (10%) were upstaged to invasive carcinoma upon definitive surgical resection. Within the DCIS subgroup of 613 patients, 55 (9%) were upstaged, and 11 out of 62 (18%) of patients with a biopsy diagnosis of DCISm were upstaged. Analysis of invasive tumor size revealed that 58 patients had T1 lesions, 7 had T2 lesions, and 1 had a T3 lesion."

************************************  

I could provide many more examples but I think this supports my point that Dr. Esserman is full of c^@p when she says that only 5% of DCIS diagnoses turn out to be something more.  And I shouldn't just call out Dr. Esserman; I notice that in the WebMD article, Dr. Partridge says "About one in 100 women with DCIS actually has invasive cancer cells lurking in her breast ducts".  How scary that these two doctors are striving to become the leading voices on DCIS treatment. 

maize

It's scary, Beesie.  It's lucky you had a doctor who was willing to go further than the stereotactic biopsy.  Your doctor may have saved your life. 

Maybe some forms of atypical hyperplasia aren't so thoroughly investigated and could possibly be treated, maybe hormonally, before they become DCIS?  I'm obviously no expert--just guessing that hormonal treatment could potentially prevent the initial stages of hyperplasia from becoming frank DCIS, if the DCIS is even caused or triggered by over-stimulation by hormones.  I would very much like to know what caused the cells to go awry in the first place.  

Many apparently consider Dr. Love to be an expert in her field.  I can't really contradict the experts.  How can I?  I don't have the knowledge or experience.  They have the years of training and experience and have dealt with it first hand many times over.  I am not a pathologist or a breast surgeon or an oncologist or a researcher.  I am just a patient.  I have to make the best choices I can using all of the information I can gather.  I want to study differing viewpoints to try to look at the whole picture, from different perspectives. It's hard to be objective.  I think I naturally would gravitate toward the news I most want to hear, and that probably, most people cherish their own perspective.  It would be hard to find out that my choices were the wrong ones, after the fact, based on misinformation.  I think we all believe, and must believe, in the choices we make regarding this.

I do realize that some people may wish to cut costs by cutting treatment.  I do think some are sincerely hoping to achieve less invasive, less physically and emotionally rough means of treating DCIS, before it becomes infiltrating.  One of the teams is trying to use hormonal treatment to treat low grade DCIS while monitoring it and the patients carefully--the patients are apparently aware of the possibility that the hormonal treatment might fail and that they might still have to have surgeries.  Many say that because DCIS is almost always treated surgically, they don't have enough data on the natural history of it.  I agree that it is terrible if a patient is undertreated or neglected and the DCIS evolves into invasive cancer, and, of course, if that invasive cancer becomes metastatic.  Definitely, I think it's better to be safe than sorry.

Kayb, I thought the DCIS must've been caused by having too much estrogen circulating around, once I read that fat cells store estrogen.  I didn't even know that the adrenal glands and pituitary are sources of estrogen and that they used to remove those glands, sometimes when they removed the ovaries, in the past.  A lot of data indicates that being overweight contributes to getting breast cancer, that being fat causes breast cancer--maybe--but I've known a couple of athletic and skinny women who've been diagnosed, too...It's seems the whole subject is controversial.

Beesie

Maize, I have to head out so not much time to respond.  But yes, I understand your point that you are not an expert so you can't contradict an expert like Dr. Love. The thing to do however is to search out and read the opinions of many experts, not just those who choose to publicize themselves, such as Dr. Love and Dr. Esserman and Dr. Partridge.  It's through reading the opinions of many experts and digging through established, reliable websites on DCIS, and reading the research studies themselves, that I've come to realize that what Dr. Love says (picking her as an example) is not the consensus of most of those who specialize in this field. 

Cancer in general, and breast cancer in particular, is not black and white. So you will always find studies that contradict each other, and you will find experts who contradict each other. Those who have a particular point-of-view or agenda choose to highlight only those studies and those experts who are consistent with their perspective.  That's dangerous and very misleading. There are no clear answers but in reading as many studies as you can find and in reading the opinions of as many experts as possible, you get a much clearer picture of the current knowledge and understanding about DCIS.  

proudtospin

thanks for all the info on here, it is helping me figure out my questions as to what to do with my most recent mamo findings, hoping for the biopsy for next week, figure it will say if nasty again, or id B9 but if B9, then I have the decision to make if I get rid of the whole boobie or not

big choices, I was so over confident when I had 4 years of clean mamos that I am in a tizzy now

Beesie

Maize, you said "It's lucky you had a doctor who was willing to go further than the stereotactic biopsy. Your doctor may have saved your life."  But here's the thing. What my doctor did was consistent with standard practice.  Most doctors would have recommended the same thing.  I've been hanging around here for 6 1/2 years and I've seen hundreds of cases like mine.  I've seen lots where the ADH turned out to just be ADH but I've also seen lots of cases where the results were similar to mine - with the discovery of DCIS, or a small amount of invasive cancer, or sometimes a more serious diagnosis. I've seen enough cases to understand why it is standard practice to do a needle biopsy on all BIRADs 4 and BIRADs 5 calcs.  Sometimes the really suspicious looking calcs turn out to be benign but sometimes the less suspicious ones are hiding something really serious.  And I've seen enough cases to understand why it is standard practice to do an excisional biopsy after ADH is found.

The concern I have is with a number of high profile doctors who are suggesting that we move away from the standard practice - without being honest about the risk. I know that most biopsies of calcifiications turn out to be benign.  I know that most diagnoses of ADH aren't found to be hiding DCIS or IDC and in fact don't ever become DCIS or IDC. I appreciate and support the desire to reduce the number of unnecessary biopsies and surgeries. Finding a way to non-surgically treat ADH and DCIS is a great idea. Personally I'd prefer to have a quick lumpectomy rather than be on a drug for 5 years (or the rest of my life). Every drug has side effects; some impact quality of life and most come with some risk (usually very small) of life-threatening conditions. Still, I appreciate that for some women a non-surgical option is preferable and I wholeheartedly support all the research that is being done to find those options. 

Where I have a concern is with the number of doctors who aren't honest in presenting patients with the risks when they propose these types of solutions.  That's what infuriates me when I read articles with quotes from Dr. Esserman or Dr. Partridge, as examples.  They aren't honest about what we know and don't know about DCIS and how DCIS evolves to become IDC. They imply that we know a lot more than we do... and they carefully choose their words to suggest that the risk of non-treatment is low. They continually mis-state and underestimate the degree of risk when they speak publicly. If they do the same with their own patients, as they enroll them in studies to test non-surgical approaches to treatment for ADH or DCIS, then they are being unbelievably irresponsible.  What I do find interesting is that Dr. Love, although she calls DCIS a pre-cancer and states that only 30% of DCIS ever evolves to become invasive, still recommends that treatment follow standard of care guidelines. That's pretty telling to me. Dr. Love knows that we don't yet understand enough about DCIS to know which cases are high risk and which aren't. So for now, she recommends that they all be treated.

But speaking of Dr. Love, until a year or two ago, her position on DCIS, as stated on her website, was that only 30% of low grade DCIS ever evolves to become invasive but we don't know what percent of high grade DCIS will evolve to become invasive.  At some point over the past couple of years she's changed this statement.  Now she says that only 30% of DCIS ever evolves to become invasive, whatever the grade. Since discovering this change, what I have been looking for is the data that supports this. I know the studies that suggest that only 30% of low grade DCIS might become invasive (although there are also studies that put the percent at quite a bit higher) but I have yet to find any study that suggests that this is also true for high grade DCIS. If there is reliable data that tells us this about high grade DCIS, that's big news. Why hasn't it been in the news? Why have other experts not changed their positions about the risk of high grade DCIS? Why can I not find any research on this?  That's what scares me so much about this whole discussion. Too much of the data seems to be made up on the fly, just to support a position that someone takes. Too much speculation. Lots of wishful thinking.  

I think the questions being raised about DCIS and the possible over-treatment of many cases of DCIS (and AHD) are important and should be raised. I am thrilled about all the work that is underway to try to better understand which cases of DCIS need full treatment and which present a low risk with less (or no) treatment.  What I don't like is when women are being treated like idiots and lied to.  Lately, as the "DCIS is a pre-cancer and doesn't need to be treated" contingent has been getting more press, I'm reading more and more lies... or to be polite, more opinions that are being presented as fact or knowledge.  

Mooleen

I was very confused when I went to my BS for the results of my breast biopsy (via surgical lumpectomy) and the first thing he said was "you don't have cancer" and then he told me to have an MRI and see a medical oncologist and a radiation oncologist. HUH? I did not have clear margins and my DCIS was grade 3. It was the consensus of all the docs that I have a second excision because I have dense breasts and there was an area of suspicion. When he gave me the report from the 2nd surgery, to his surprise they found some grade 2 DCIS and still did not have clear margins. I chose the UMX option and was very happy that I didn't need any further treatment? I have no regrets and consider myself very lucky.

maize

This is what's so confusing and upsetting--being told it is a cancer and also being told it is not.  Some acting as if it's a grave diagnosis and possibly could become life-threatening and some acting like it's not life-threatening and then you're wondering if you're going to be "home-free" or if you will need to continually worry about a recurrence.  You need to see oncologists and may need somewhat toxic treatments and will have to be followed throughout your lifetime, but it was caught early.

I know that Dr. Love recommends the standard treatment for DCIS.  Apparently, she typically recommends mastectomy for high grade DCIS.

The links below and messages on those pages are concerning.  I don't put these here to scare the ##&@ out of anyone, but to let other women know about this who haven't read about it:

http://her2support.org/vbulletin/archive/index.php/t-41575.html
http://her2support.org/vbulletin/archive/index.php/t-23662.html
http://her2support.org/vbulletin/archive/index.php/t-51971.html

I am hoping that cases like these are very rare.

Confusion Over DCIS: What to Do About ‘Stage Zero' Breast Cancer

http://apps.komen.org/forums/tm.aspx?m=297506

Infobabe

 maize

But that's it, isn't it.  It is not life threatening and you have time to decide.  But if it is not addressed, it will become life threatening.

I am in a similar situation to you and have gone through all these mental exercises.  I cancelled rads but now am looking at, depending on the 2nd pathology report, constant surveillance like MRIs every 6 months, or mastectomy.  I think I am  heading toward mastectomy just to end the worry.  

It is a different situation for younger women.  Reconstruction is usually done for them, though  I do not want it. 

Have you told us what your diagnosis is?  Stage, Grade, hormone + or -?   Have you had a lumpectomy?  You don't know what you have until you do that.

maize

Infobabe,

I had a lumpectomy. The DCIS was ER+ and PR+, 1.2 cm., intermediate to high grade. 

I am hoping that while the specialists are searching for means to decrease the number of cases of DCIS treated invasively, they will not neglect to treat some patients who need treatment.  I am concerned about the idea of not treating women in their 70's for DCIS--because I'm sure many would like to live to be older, if they can, and not treating DCIS in them could be life-threatening if it became invasive.  I hope that the issue isn't just about "cost-effectiveness", but about saving lives.  Apparently, not enough is known to be able to tell a patient with any real degree of certainty that the form of DCIS she has will likely progress into invasiveness within such-and-such amount of time.  Maybe the Oncotype DX test will give practitioners a better ability to predict whose DCIS is likely to invade soon, or probably not so far off in the future,  and whose isn't. It would be wonderful if at least some cases of DCIS could be treated without surgery, and without the need for toxic treatments (radiation, hormonal treatments with potential serious side effects), or all of the anxiety involved.

Beesie

Maize, the Komen article you linked provides a good assessment of the confusion we have in communicating about DCIS.  It is just as infobabe said. DCIS is not life threatening. But if not treated while it is DCIS, it can become life threatening. So while not urgent and not something to be fearful of, DCIS does need to be addressed. Each diagnosis should be assessed and treated appropriately, based on the specifics of the diagnosis. If this small problem isn't addressed now, a larger problem may loom in the future. 

If you find one ant in your house and you kill it or remove it, you won't have an infestation. But if you ignore it, you might end up with an infestion. That's DCIS in a nutshell. 

The 3 other links you provided are personal anecdotes written on a website much like this one - they are not reliable and frankly all they are going to do is scare people unnecessarily.  So while your purpose may be to provide information and educate, by presenting these links without any explanation or context, all they can do is scare the ##&@ out of people. 

Here's the problem with personal anecdotes:

First, People get things wrong.  I have seen hundreds of women on this website who've misstated their diagnosis to be DCIS when in fact they've had a combination of DCIS and invasive cancer.  Sometimes it takes a while to figure out the real diagnosis but usually there are hints right from the start. Some say they have DCIS but also state that they are Stage I (or Stage II or Stage III) - and as we know, pure DCIS is always and only Stage 0.  Some say they have DCIS but then go on to talk about receiving chemo and/or Herceptin - drugs that are not given to patients with DCIS.  Some say they have DCIS but then talk about it being "invasive".  I've seen a lot of women on this site who've been diagnosed with "invasive DCIS" - except that's a diagnosis that doesn't exist.  Some say they have DCIS but also mention that they have positive nodes (positive nodes automatically changes the diagnosis to at least Stage I and usually Stage II).  

I've read many posts on this site from women who've said that they have progressed directly from Stage 0 to Stage IV. Posts just like those that you've linked from the HER2 support site. In my 6 1/2 years here, I am aware of only one case where the initial diagnosis truly was DCIS. The others had either a microinvasion or something more. No one intentionally misled or lied, but they did mislead. Note too that one of your links talks about a case that started with a microinvasion. This is not pure DCIS; it is Stage I and not Stage 0 and should not be lumped in with pure DCIS when talking about the possibility of progression to mets. I know that. I had a microinvasion. I am Stage I.  I have a risk of mets - fortunately a very small risk but that is the key difference between a diagnosis of DCIS and a diagnosis of DCIS-Mi. 

Second, $#!t happens.  Even if there is only a 1 in 10,000 chance that something will happen, someone is going to be that 1 person. And that might be the person who is sharing their personal anedcote on some website.  The other 9,999 people who didn't have anything terrible happen aren't going to be presenting their personal anecdotes because they have nothing to say.

Here are the facts (as we know them to be today): Pure DCIS cannot result in mets. But what can happen is that a microinvasion can be missed (this is called an occult invasion) and as a result, a diagnosis that is thought to be DCIS might in fact be Stage I (or higher) invasive cancer. And that could lead to mets. I wrote a post a while back where I figured out the odds of this happening.  Here's the progression of what has to happen:

First, a microinvasion is missed in the diagnosis. Second, the microinvasion leads to lymphatic or vascular invasion. Third, the lymphatic or vascular invasion is not caught either through an SNB or the pathology assessment of the tumor and surrounding tissue. Fourth, the undetected lymphatic or vascular invasion results in the eventual development of mets 

Using as much supportable data as I could find, I worked out the odds for all four things to happen to be about 0.01%, or 1 in 10,000. So yes it's possible that someone might progress from DCIS Stage 0 (or what they believe to be a diagnosis of DCIS Stage 0) directly to Stage IV but it's not something that should worry anyone who has DCIS.  But then why do we hear about these cases?  Why do we read about it in these personal anecdotes?  Well, there's the catch. In North America approx. 65,000 women are diagnosed with DCIS every year. Over 5 years (the possible time frame for the discovery of the mets), that's 325,000 women.  If 0.01% of these women develop mets, that's 32 women.  So it's not surprising that eventually we will come across a story from someone who had this happen. But should that scare other women into thinking that this will happen to them?  No, it shouldn't.  None of us should live our lives worrying about things that have a 1 in 10,000 chance of happening.  

Maize, it seems to me that you are trying to find all the answers to the questions that surround DCIS. I understand that as someone who is newly diagnosed, you want to understand why you got this disease and what it means. The problem however is that you are searching for answers and a level of certainty that simply doesn't exist yet. Think of DCIS as a puzzle. We have some of the puzzle pieces but we still are missing many of them. The ones we have are enough to give us an idea of what some parts of the picture look like but there are big chunks that are still empty and that we can't identify at all. So there is no answer to what whole puzzle shows.  And looking at only individual puzzle pieces - as the links you provided above do - sometimes presents a completely distorted view.  

For all the complexity and unknowns about DCIS (which truly interests me), when it comes to dealing with my own diagnosis of DCIS-Mi, I think about it very simply. "I am lucky that my breast cancer was caught at a very early stage and because it was appropriately (for the specifics of the diagnosis) treated at that time, the odds that it will do me any harm in the future are extremely low. For the future, it's important that I remain vigilant and get my screenings but the risk is so low that it's not something that I will think about or worry about."  I realize that it may seem easy to say something like this 6 1/2 years after a diagnosis, but honestly, when I was first diagnosed, after a couple of weeks of panic and worry and research and discussions with doctors, I realized that this was the truth and I had to start thinking about it this way.  

maize

Beesie,

Thanks, Beesie.  I read those accounts of DCIS becoming Stage IV within a short period of time and really got scared.  I did not know if this is known (by specialists) to occur in some cases of DCIS or not, regardless of the type of surgery chosen.  I wondered if there could be occult metastases somewhere else in the body that caused the DCIS.  I am glad to learn that the odds of this happening are so slim.

Beesie

By "occult metastases somewhere else in the body that caused the DCIS", do you mean that you wonder if the DCIS is not really breast cancer but another cancer from somewhere else in the body?  The answer to that is NO.  Breast cancer cells can be identified as being breast cancer cells.  When someone with breast cancer is found to have cancer cells in the liver, those cells are analysed to determine if the cancer is liver cancer or breast cancer metastases. Each type of cancer cell is different and can be identified. 

The breast is also not the place where cancer cells normally travel to. That's why invasive cancer in one breast very rarely moves to the other breast.  If cancer is discovered in the other breast, it's pretty much always assumed to be a completely separate diagnosis because the likelihood that it's the same cancer is so rare. When cancer cells travel, they move through the vascular system (the bloodstream) or the lymphatic system. Breast cancer cells that enter the nodes or the vascular system tend to travel to the bones, the liver, the brain.  It's pretty rare that a breast cancer cell would enter the nodes and travel through the nodal system simply to land in the other breast. I don't know the travel patterns of other types of cancer but I would guess that the breast is not where any of them head. 

As for whether the type of surgery makes a different with occult invasion (or any invasion), many studies have shown no difference in survival (for those with invasive cancer) between lumpectomy and mastectomy.  That's because the harm is usually done before the cancer is removed from the breast.  What usually happens is that before the cancer is even discovered, some cells break away and move into the body. They may take hold and develop into mets relatively quickly or they may lie dormant for years.  But the point is that these cancer cells broke away from the breast area before the rest of the cancer was surgically removed from the breast.  So whether one has a lumpectomy or mastectomy is irrelevant, since the cancer cells that will eventually develop into mets have escaped from the breast prior to surgery. And that's what chemo is for. Chemo's role is to track down those rogue escaped cancer cells, wherever in the body they may be, and kill them off.  And that's why chemo is given even to some women who are node negative and who show no signs of vascular invasion, if they present other risk factors that suggest that some cancer cells may have broken away and moved into the body before the cancer was removed from the breast.    

Not a pleasant topic so let's remember that this is the DCIS forum and DCIS cancer cells cannot enter the lymphatic or vascular systems and they cannot metastasize.