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Topic: A layperson's guide to DCIS

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Jul 23, 2012 03:31PM - edited Apr 26, 2016 02:26PM by Beesie

Beesie wrote:

This is a reposting and updating of my "DCIS facts and misconceptions" thread. In setting up that thread, I wanted to share basic information about DCIS that I'd learned from my research and in my years on this board. I also wanted to provide links to reliable websites that have good general information about DCIS - there is a lot on the internet but much of it isn't vetted or reliable, or it may be just one person's (possibly biased) opinion. Lately my original thread has moved on to other important discussions and it's become a bit difficult to find the information and website links in among all the discussion. Therefore I WOULD REQUEST THAT THIS NEW THREAD BE LEFT AS A GENERAL DCIS INFORMATION THREAD, a place to discuss general information and general questions about DCIS.

***IF YOU HAVE QUESTIONS ABOUT YOUR OWN DIAGNOSIS, IT'S BEST TO START YOUR OWN THREAD IN THE DCIS FORUM.*** Every DCIS diagnosis is different. Some present little risk while others are much more concerning. If we start talking here about individual diagnoses and specific concerns, the discussion could misinform or misdirect someone who has a different type of DCIS diagnosis. That's why I'd like to keep this thread as a general information thread only.

A very important point about everything that follows: I'm not a doctor and I'm not an expert on DCIS. I'm just a former patient who happens to like digging through research. What's written here is what I've learned about DCIS in the 6 ½ years (updated: now 10 years!) since my diagnosis by weeding through research and from spending time on this board. I present this information not to tell anyone what to do but simply to help those who are newly diagnosed and have general questions about DCIS. My hope is that this information prompts those who are newly diagnosed to have better and more meaningful discussions with their doctors.

. **Okay, so what is DCIS? And what isn't DCIS?**

- DCIS is Stage 0 breast cancer - whatever the grade, whatever the size. DCIS is the earliest stage of breast cancer, with the best possible prognosis. DCIS is never invasive; there is no such thing as "invasive DCIS". DCIS can evolve to become invasive cancer but when that happens the diagnosis changes and becomes IDC and the stage changes to Stage I or higher.

- There is much debate these days as to whether DCIS is a cancer or a pre-cancer. What is agreed is that DCIS cells have most of the characteristics of cancer cells. The difference is that DCIS cells are contained within the milk ducts of the breast and do not have the capability to break through the ducts. Therefore DCIS cells cannot move into the open breast tissue, the lymph nodes or vascular system, or invade into the body - in other words, DCIS cannot metastasize. Most definitions of cancer include 3 criteria: 1) abnormal cells; 2) uncontrollable cell growth; and 3) the ability of the cells to move to a different location in the body and metastasize. Therefore it is because DCIS cannot metastasize that some medical experts choose to call DCIS a pre-cancer (DCIS does meet the first two criteria). Since DCIS doesn't fit the strict scientific/medical definition of cancer, there is some validity to that argument. And in fact the National Institute of Health (U.S.) no longer calls DCIS a "cancer". Instead, the NIH defines DCIS as "A noninvasive condition in which abnormal cells are found in the lining of a breast duct." That said, from the standpoint of understanding and treating DCIS, personally I believe the most appropriate definition of DCIS is that it is a "pre-invasive breast cancer". This is because while DCIS cells are not invasive in their current state, if DCIS cells remain in the breast, at any time one (or more) of those DCIS cells might undergo the biological change that gives the cell the ability to break through the milk duct and become an invasive cancer. When that happens, it's the very same cell that started as DCIS that has evolved to become an IDC cancer cell. 80% - 90% of IDC is believed to have evolved from DCIS. Therefore I feel that "pre-invasive breast cancer" is the best definition of DCIS because it explains the current state of the DCIS cell (non-invasive, by some definitions pre-cancer) while acknowledging the future potential to become an invasive breast cancer.

- Nobody knows what % of DCIS will eventually evolve to become invasive cancer and nobody can predict which cases of DCIS will become invasive and over what period of time, despite what you may read from some 'experts' on the internet. Some studies of low grade DCIS not removed surgically have suggested that perhaps 20 % - 40% will become invasive over 5 to 10 years but other studies have shown that low grade DCIS, left untreated, can evolve to become invasive cancer even after 25 or 30 years. For those with high grade DCIS and DCIS with comedonecrosis, it is believed that the percentage that will become invasive is very high. However because these types of DCIS are almost always removed and treated, there is no way to know what percentage will become invasive if allowed to progress naturally. It is known that after treatment (i.e. when the DCIS is surgically removed), if there is a recurrence, in approx. 50% of cases the recurrence will not be found until the DCIS has progressed to become IDC. Currently there's a lot of research underway to better understand the biological factors that determine which cases of DCIS will evolve to become invasive and which are likely to remain DCIS (and therefore remain harmless). Unfortunately at this point in time medical science simply doesn't have the answer yet, but stay tuned.

- It is very common to have DCIS and IDC together. As explained above, most IDC evolves from DCIS. Therefore it's not unusual to find DCIS and IDC together in the same area of cancer. When that happens, the diagnosis, staging and treatment plan is based on the size and pathology of the invasive cancer. If you have any IDC in addition to DCIS, your diagnosis is NOT considered to be Stage 0 DCIS. The DCIS will need to be surgically removed but other than that, the rest of the treatment will focus on the invasive cancer. The DCIS will be adequately treated by whatever treatments are given to address the IDC.

- Until you have your final surgery, you don't know your final diagnosis and whether or not it is Stage 0 DCIS. A needle biopsy only retrieves a small number of samples therefore any diagnosis based on a needle biopsy is not a final diagnosis. Because DCIS and IDC are so often found together, it can happen that a needle biopsy shows only DCIS cells but IDC is also present in the area of cancer. Approximately 20% of women who are diagnosed with DCIS via a needle biopsy are ultimately found to have invasive cancer once all the surgery is done and the entire area with cancer is removed from the breast. Most of the women in this 20% have just one or a few microinvasions but approx. 5% are found to have larger areas of IDC and/or nodal involvement.

- "DCIS with a microinvasion" is a fairly common diagnosis. Although usually grouped in with DCIS, this diagnosis is actually a subset of IDC; DCIS with a microinvasion, called "DCIS-Mi", is Stage I - it is the earliest possible diagnosis of invasive cancer. By definition a microinvasion is an invasive tumor that is no larger than 1mm in size; it is called a T1mic tumor. An invasive tumor any larger than 1mm in size moves on to be a T1a tumor (or T1b, etc.) and the diagnosis is no longer DCIS-Mi but is IDC.

- If you have lymph node invasion, your diagnosis is not DCIS (with the exception noted below). DCIS cancer cells cannot travel to the nodes or move into the bloodstream. A DCIS cancer cell must evolve to become IDC before that can happen. It can sometimes (rarely) happen that a tiny amount of invasive cancer is hidden in the middle of an area of DCIS and isn't discovered when the breast tissue is analyzed; if this invasive cancer results in lymph node invasion, it might appear that the diagnosis is "DCIS with lymph node invasion" but it will be assumed that there was invasive cancer present but just not found. This is called an occult invasion.

- If isolated tumor cells (ITC) are found in your nodes, your diagnosis can still be DCIS. Isolated tumor cells are defined as single tumor cells or small cell clusters not greater than 0.2 mm. The area of invasion into the nodes is so tiny that those who have ITC are considered to be node negative. Therefore if the breast tumor is pure DCIS with no invasions present and if ITC are found, the diagnosis will remain Stage 0 DCIS. The assumption made in these cases is that the tiny number of cancer cells found in the lymph nodes were likely deposited there accidentally by a surgical instrument.

. **So you have DCIS... what does this mean and what's to come?**

- DCIS is heterogeneous disease; there are many different types of DCIS and many different diagnoses. A diagnosis of 3mm of grade 1 papillary DCIS is very different from a diagnosis of 7cm of grade 3 DCIS with comedonecrosis... and there are lots of variations in between. Different diagnoses present different risks. That's why even a small difference in diagnosis can lead to a different treatment recommendation for one person vs. another.

- There is no one single treatment option that is appropriate for all cases of DCIS. Based on current guidelines, treatment can range from a lumpectomy alone to surgery (lumpectomy or mastectomy with an SNB) with radiation and hormone therapy. The specifics of the diagnosis determines the treatment recommendation from the medical team. The decision on treatment is ultimately up to the patient, however. Each of us reacts to our diagnosis in our own way; our feelings, emotions and fears, as well as how we deal with risk and uncertainty, all need to be factored into our treatment decisions - it's much more than a medical decision. Some women choose to have more treatment than what's recommended by their doctors while other women decide to pass on treatments recommended by their doctors. There is no right or wrong so don't feel pressured or concerned because of what someone else did. Decide what's right for you and then don't look back.

- Those diagnosed with DCIS (or early stage invasive cancer) usually will not get a CT scan or PET scan. These scans are quite common among those who have more advanced BC. However because the risk of metastasis is virtually negligible with DCIS and is so low with early stage invasive cancer (such as DCIS-Mi), these scans are not considered necessary because it is so unlikely that they will find anything and because the scans themselves expose the patient to radiation (particularly PET scans).

- If you have pure DCIS, you will not need chemo. Chemo is a systemic treatment - it is given to address the risk that cancer cells may have moved into the body (i.e. distant recurrence/mets). Chemo is not given to treat cancer that is only in the breast and DCIS, by definition, is confined to the breast - that's why chemo isn't necessary. If it's found that you have a small amount of invasive cancer (a microinvasion or just slightly larger) along with your DCIS, according to current treatment guidelines you still likely won't be given chemo. This is because the risk of distant recurrence is considered to be too low to warrant such a toxic treatment. If however it's found that you have a larger amount of invasive cancer, then chemo might be required, depending on the size and pathology of the invasive cancer.

- If you have pure DCIS and are having a lumpectomy, you may benefit from the new Oncotype test for DCIS. The original Oncotype test was used to determine distant recurrence risk and the need for / benefit from chemo. Since chemo is not given for DCIS (see above), that version of the Oncotype test wasn't used on women who had pure DCIS. In December 2011 a new version of the Oncotype test was made available, specifically for women with DCIS. This Oncotype test provides an estimate of the 10-year risk of an invasive recurrence after lumpectomy surgery; test results may be helpful in determining whether or not to have radiation after surgery. Note however that all the patients in the trial had low or intermediate grade DCIS that was ≤2.5 cm in size or high-grade DCIS that was ≤1 cm. The other criteria in the trial was that surgical margins had to be 3mm or greater. Therefore this test may not be worthwhile for those who have larger areas of DCIS or smaller margins, cases where it's more clear that radiation can provide a significant reduction in recurrence risk. Note as well that the Oncotype for DCIS is new and doesn't yet have a lot of testing behind it. Even Genomic Health, the company that sells/markets the Oncotype tests, says that the test provides "additional information" that doctors and patients can use in addition to "the traditional measurements such as margin width, tumor size and tumor grade". Given the cost of the test (approx. $4000), this may put into question the value of the Oncotype test for current DCIS patients, at least until more testing is done on the test itself.

- At this time, based on current medical knowledge, there is no relevance to HER2 status for those who have pure DCIS. While HER2+ invasive breast cancer is known to be very aggressive, there is little understanding of what HER2+ status means for those with DCIS. Several small studies have been undertaken to determine how HER2+ DCIS differs from HER2- DCIS; the results of some of the studies have shown that HER2+ DCIS might be more aggressive but the results of other studies have shown the opposite. The most recent study, in 2013, actually suggested that HER2+ DCIS might be less likely to recur as invasive cancer. So there's no clear answer yet. There also are no special/different treatments for those who have HER2+ DCIS, although several clinical trials currently underway. What is known is that a large percentage of DCIS is HER2+ (a much higher percentage than for IDC) which may suggest that as DCIS evolves to become invasive, in some cases HER2 overexpression might decrease, with the cancer changing from being HER2+ (as DCIS) to HER2- (as IDC). HER2+ DCIS is an evolving area, so stay tuned. But for now, don't worry if your DCIS wasn't tested for HER2 status - some doctors/hospitals do this testing, others don't. And DON'T WORRY IF YOUR DCIS IS HER2+. That doesn't necessarily mean that your DCIS is more aggressive - nobody knows.

- Checking the lymph nodes, i.e. a sentinel node biopsy, is not required for those who have pure DCIS. However women who have high grade DCIS have a reasonable risk that some invasive cancer might be found in the final pathology; because of this, sometimes an SNB will be recommended (note that it is current practice to check the nodes if any amount of invasive cancer is found). An SNB is really not necessary when someone is having an lumpectomy, because an SNB can always be done later if any invasive cancer is found, but is more important for women having a mastectomy because an SNB cannot effectively be done after a mastectomy. Current treatment guidelines suggest that women with DCIS who have a low risk that invasive cancer may be found (i.e. those who appear to have a small amount of lower grade DCIS), do not require an SNB even if they are having a mastectomy. Current treatment guidelines also do not suggest having an SNB for anyone with DCIS having a lumpectomy or on the prophylactic side for anyone with DCIS who is having a BMX.

NEW! For women having a MX for low-risk DCIS who are looking to avoid node removal, a new option may be to identify the sentinel node(s) prior to the MX surgery, mark the node(s) with blue dye or a titanium marker, and then proceed with the MX surgery, without actually doing the SNB and removing any nodes. If any invasive cancer is found in the post-surgical pathology work, at that point another operation can be scheduled to remove the highlighted nodes to check for cancer. Although the procedure was specifically developed to address the risks faced by women having prophylactic mastectomies, women with low-risk DCIS (i.e. cases where it's unlikely that invasive will be found in the MX pathology) might benefit as well. Because this procedure is so new, it's unlikely that many doctors are doing it yet, but it's certainly worth the discussion with your breast surgeon.

- Lymphedema is possible, even after an SNB. Approx. 3% - 7% of women who have SNBs develop lymphedema (and this may be under-reported). Lymphedema can develop anytime in your life after you have nodes removed and once it develops, you will have lymphedema for life. This is an important consideration for anyone having an SNB for DCIS (particularly lower grade DCIS). Note that the fewer the number of nodes removed, the lower the risk that you may develop lymphedema - but there is always a risk.

- The number of nodes removed during an SNB varies by individual based on our lymphatic systems. Sometimes only one node is removed, sometimes as many as 4 or 5 nodes will be removed. Prior to the SNB procedure, isotopes and/or dye is injected into the breast. The isotopes/dye flow towards the nodes. The nodes that "light up" are the ones that are removed. The flow of the isotopes/dye into the nodes is meant to simulate how cancer cells from the breast would flow into the nodes. For this reason, if only one node lights up, only one node needs to be removed but if several nodes light up, all should be removed.

- Recurrence risk after a lumpectomy for DCIS is based on your personal pathology and can't be known until after surgery. Don't assume that what your risk will be the same as anyone else's. The key factors that go into the determination of recurrence risk are size of the surgical margins, size of the tumor/area of DCIS, grade of tumor, presence (or lack of presence) of comedonecrosis, hormone status and age of patient at time of diagnosis. Someone who is older who has a small, low grade DCIS tumor and good surgical margins might have a recurrence risk that is as low as 3% - 4% (even without radiaton) whereas someone who is younger who has a larger, high grade tumor and poor surgical margins could have a recurrence rate that is as high as 60% (prior to radiation). Because the size of the margins and the size of the tumor aren't known until after surgery, it's impossible to know for sure what your recurrence risk will be until after the final pathology report is available, although many doctors speculate or estimate. Don't let your doctor give you "averages" when it comes to recurrence risk; insist on knowing your specific risk level.

- Radiation is usually recommended after a lumpectomy for DCIS but in some cases radiation may provide little benefit and might not be necessary. How much benefit you will get from radiation, in terms of a reduction in recurrence risk, all depends on what your risk was to begin with. Generally it's believed that radiation reduces recurrence by approx. 50%. However if your recurrence risk is only 4% to begin with, your recurrence risk reduction will be only 2% (50% of 4%). On the other hand, if your recurrence risk after surgery alone is 60%, your recurrence risk reduction from radiation will be 30% (50% of 60%). The Van Nuys Prognostic Index (VNPI), developed specifically for DCIS, is commonly used to determine recurrence risk and whether or not radiation should be recommended. The VNPI calculates a 'score' based on margin size, tumor size, and tumor grade/aggressiveness. A low score corresponds with a very low recurrence risk. Therefore women with a low VNPI score may be able to forgo radiation with little risk. Another tool available for those with DCIS who are unsure about whether or not to have radiation after a lumpectomy is the new Oncotype test (see above for more information).

- Tamoxifen is usually recommended to those who have ER+ DCIS (except for those who've had a bilateral mastectomy) however the benefit from Tamoxifen varies by individual so it's best to assess your risk & benefit before deciding whether or not Tamoxifen is for you. As with radiation, how much benefit you get from Tamoxifen depends on what your risk was to begin with. Tamoxifen provides 3 benefits: 1) It reduces the risk of local recurrence by approx. 45%. For those who have a high risk of recurrence following a lumpectomy, this benefit can be quite significant. However for those with a low risk of recurrence after a lumpectomy and those who've had a mastectomy, this benefit might be quite low. 2) It reduces the risk of the development of a new breast cancer in either breast. If you've had a bilateral mastectomy, your risk to get a new BC is only 1% - 2% over your lifetime, so the benefit from Tamoxifen is minimal. But if you still have one or both breasts, your risk is higher and the benefit is greater. However it's important to remember that your risk to develop a new BC spans your entire lifetime whereas Tamoxifen, even if taken for the full 5 years, will provide risk reduction only for approx. 10 - 15 years. If you are 50 and your lifetime risk to develop a new BC (over 40 years to age 90) is 20%, this means your risk over the next 15 years is probably around 7%. Tamoxifen can reduce this risk by approx. 45%, taking it down to 4%. As a result, your lifetime risk would go from 20% to 17%. 3) It reduces the risk of a distant recurrence. This benefit isn't a factor for women who have DCIS, since by definition DCIS cannot move beyond the breast and develop into a distant recurrence (mets). The net of all this is that taking or not taking Tamoxifen is your choice, based on how you feel about your risk level and the benefits you'll get from Tamoxifen. Some women will get a significant risk reduction benefit from Tamoxifen whereas other women will get minimal benefit.

UPDATED - Tamoxifen is currently the only endocrine therapy approved for women who've had DCIS. For women with invasive cancer, while Tamoxifen is given to pre-menopausal women, post-menopausal women often are prescribed an Aromatase Inhibitor (either Arimidex or Aromasin or Femara). Aromatase Inhibitors (AIs) are not yet approved for women who've had DCIS. Recent studies have however shown that the AIs may be more effective than Tamoxifen at reducing recurrence. Based on this, and in anticipation of the approval of AIs for women with DCIS, the 2016 NCCN Guidelines now indicate that post-menopausal women with DCIS may choose to take either Tamoxifen or an AI. The guidelines note that there may be some advantage for aromatase inhibitor therapy in patients <60 years old or those who have concerns about thromboembolism.

- For those who have pure DCIS, the recurrence rate after a mastectomy is generally in the range of 1% - 2%. There have been many studies over many years that have confirmed this recurrence rate after a mastectomy. In recent years a couple of studies have shown however that for those who have negative or very small surgical margins after a mastectomy (1mm or smaller), the recurrence rate might be higher. This is why it's becoming more common for women who have mastectomies for DCIS to also get radiation, if they have close surgical margins. So don't assume that if you have a mastectomy for DCIS, you will not require radiation. Radiation might still be recommended.

- If you have a mastectomy, you will lose all feeling in your breast. If you have a skin sparing mastectomy, you may regain some feeling on your skin but this is not the same as having feeling in your breast. Think of what you would feel if you had a baseball inserted under a layer of your skin - the only feeling you'd have is a surface feeling. While all the natural breast sensation is gone once the breast tissue is removed and the nerves are cut, there have been studies that show that a percentage of women develop phantom feelings that seem like real breast sensation. Those types of phantom sensations can be pleasant however with a mastectomy there is also a risk that you may develop real or phantom pains. While not often discussed this way, from a physical standpoint a mastectomy is similar to an amputation and it comes with all the possible side effects of any amputation. And a reconstructed breast cannot develop real sensations. This is not to discourage anyone who is thinking about having a mastectomy in order to lower recurrence risk; this is just to lay out the facts. Note that there are new reconstruction techniques that may result in more natural feeling being regained however at this time these methods of reconstruction are not widely available.

- DCIS cancer cells, if moved out of the milk duct, will not become invasive and start to spread. DCIS cancer cells are pre-invasive. They have most of the characteristics of invasive cancer cells but based on current scientific understanding, they require one final molecular change to the myoepithelial layer of the cell to become invasive cancer. What this means is that if you have a biopsy or surgery that releases some DCIS cancer cells into the open breast tissue, you don't have to worry that these cells will become invasive cancer. As DCIS cancer cells they will not be able to thrive and grow and multiply in the open breast tissue.

- DCIS cannot recur in the contralateral (opposite) breast so a diagnosis of DCIS does not put you at risk of a "recurrence" in the other breast. It is in fact very unusual for any breast cancer to recur in the other breast. For breast cancer to recur in any location outside of the originating breast, what happens is that some invasive (not DCIS) cancer cells leave the breast, either through the lymphatic system or through the bloodstream, and then settle elsewhere in the body. When the breast cancer cells take hold somewhere other than the breast, this is considered metastasis (i.e. mets). Some of the more common places that breast cancer cells move to are the bones or the liver. It is very unusual for cancer cells to move from one breast through the lymphatic system or bloodstream and then land in the other breast. This just doesn't happen very often. So even invasive cancer rarely recurs in the contralateral breast. As for DCIS, DCIS cancer cells are confined to the milk ducts; they cannot move into the lymphatic system or the bloodstream. While DCIS can spread out and fill the ductal system of the originating breast, DCIS cancer cells will remain within that breast.

- A diagnosis of DCIS, like any diagnosis of breast cancer, increases the future risk that you might be diagnosed with a new primary breast cancer, in either breast. While DCIS cannot recur in the contralateral breast, any diagnosis of breast cancer, even DCIS, is believed to increase the future risk that you might be diagnosed again. This second diagnosis is not a recurrence, but is a new primary breast cancer, unrelated to your first diagnosis. How much your risk goes up vs. the average women (who hasn't been diagnosed with BC) depends on your personal health history, your family history of breast cancer, and your age. So it is important to talk to your oncologist to understand your risk of being diagnosed again - it is different for each of us and it might be higher than you expect or it also could be lower than you expect. Understanding your risk in this area can impact your decisions on hormone therapy and whether or not to have a mastectomy or bilateral mastectomy.

That's it for now! I will include a list of website links with good information about DCIS in a follow-up post in this thread.

If anything is confusing or isn't clear, please ask. Or if there are topics about DCIS that haven't been covered and you think should be included, please ask (it will give me an excuse to do more research!). Questions are very welcome.

However as requested at the beginning, LET'S PLEASE KEEP THIS THREAD FOCUSED ON GENERAL INFORMATION ABOUT DCIS, RATHER THAN GETTING INTO THE SPECIFICS OF INDIVIDUAL DIAGNOSES AND DECISIONS. Those discussions are better served in their own threads, where they can get the focus and attention they deserve. Thank you!

Edited to expand/clarify the discussion on whether DCIS is a cancer or pre-cancer.

Edited to update the information about the use of Aromatase Inhibitors.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 23, 2012 03:35PM Beesie wrote:

Here are a number of links to websites and articles that have excellent general information about DCIS.  There's lots of information out on the internet about DCIS but much of it isn't vetted or reliable - these sites are.

DCIS - Ductal Carcinoma In Situ  http://www.breastcancer.org/symptoms/types/dcis/

Ductal Carcinoma in Situ  www.dcis.info/index.html

NCCN Guidelines for Patients - Breast Cancer  http://www.nccn.com/images/patient-guidelines/pdf/breast.pdf  Not specific to DCIS, this report, which is updated annually, discusses in detail current treatment standards for all types of breast cancer. These are the treatment guidelines used by most breast cancer specialists in North America.  The Physician's Guide version of this report is even more detailed but requires registration to be able to access. http://www.nccn.org/professionals/physician_gls/f_guidelines.asp

Diagnosis and Management of Ductal Carcinoma in Situ (DCIS)  http://www.ahrq.gov/downloads/pub/evidence/pdf/dcis/dcis.pdf   From 2009, this is a very long and thorough examination of DCIS and DCIS treatment.   Here's another link with the same data - I think this one might be easier to wade through: http://www.ncbi.nlm.nih.gov/books/NBK32576/

Current Treatment and Clinical Trial Developments for Ductal Carcinoma In Situ of the Breast    theoncologist.alphamedpress.or...   This one is from 2007 so it's not completely up-to-date on the research but the explanations of DCIS and DCIS treatment are good - and it's not as long as the previous article!

Ductal Carcinoma In Situ of the Breast  moffitt.usf.edu/moffittapps/cc...

Selecting Individualized Treatment for Patients With Ductal Carcinoma in Situ of the  Breast: The Search Continues   http://jco.ascopubs.org/content/30/6/577.full

Because my focus with this thread is to provide general information about DCIS, I've only included websites and articles that provide a broad and full perspective on DCIS - I have intentionally not included any of the dozens (or hundreds, actually) of articles or studies that talk to specific issues such as the need for radiation, the Oncotype test, etc., etc.  I hope that these websites are helpful and provide answers to those of you who are newly diagnosed and have questions about your diagnosis and treatment options.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 23, 2012 04:25PM marie5890 wrote:

(PERFECT!!..Thanks Beesie for the update, and thanks Mods for the pinning)

Jan '11 Biopsy Dx-ed a PASH tumor (rare, but benign tumor)....All I ask is for peace and serenity to the depths of my soul. Makes the rest of life more live-able.
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Jul 23, 2012 07:39PM maize wrote:

Thanks again, Beesie.  It's wonderful of you to do this, to make it much clearer for us newbies.  Each woman has to make her own decisions based on the information she receives and this information makes it much easier.

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Jul 23, 2012 09:43PM Beesie wrote:

Thanks!  It had been over 6 months since I'd input any updates so I added quite a few this time, much of it related to the discussions that have been going on in the DCIS forum recently. And to Infobabe's suggestion, I also just added the point about the AIs not yet being approved for women who've had DCIS. 

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 24, 2012 03:48PM Infobabe wrote:

 Beesie 

Here is an article about how DCIS progresses to IDC.  Has to do with particular genes as this change does not take place in all cases.  It needs more interpretation.

  http://cancerres.aacrjournals.org/content/early/2012/06/30/0008-5472.CAN-12-0636.abstract 

Dx 3/15/2012, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 5/1/2012 Lumpectomy: Left
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Jul 24, 2012 06:42PM Beesie wrote:

Thanks!  I hadn't seen this one yet.

It is interesting.  This is a hot topic among medical researchers so it's a fairly well studied area. Little bits of interesting information keep popping up. Unfortunately nobody yet has had the big "I GOT IT!" moment that everyone else agrees with, in order to settle the issue of exactly what it is that triggers DCIS to evolve to become IDC.  But each new piece of research or study hopefully gets us closer. 

Some other articles/studies on this topic:

Loss of Protective Barrier May Link DCIS to Invasive Breast Cancer

Breakthrough Method Predicts Risk of Invasive Breast Cancer 

Evidence that molecular changes in cells occur before morphological alterations during the progression of breast ductal carcinoma

I had 4 other articles/studies on this topic bookmarked, each with their own theory on what triggers the progression from DCIS to IDC, but the bookmarks aren't working anymore which means that the articles have been moved or aren't available on line anymore. 

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 24, 2012 08:03PM Infobabe wrote:

Beesie 

Kind of the Holy Grail for DCIS.

Dx 3/15/2012, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 5/1/2012 Lumpectomy: Left
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Jul 24, 2012 10:51PM Beesie wrote:

Exactly!  Whenever it is that they finally figure this one out, it will make all the difference in the world to women who are diagnosed with DCIS.  Wouldn't it be great to know, right when you are diagnosed and before your make your treatment decisions, whether or not your DCIS is going to become invasive?

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 25, 2012 10:22AM Omeggo wrote:

Beesie,

Thanks for your thread!  Very helpful information.  Takes out a little  of the worry about everything.

Dx 6/15/2012, DCIS, Stage 0, Grade 3, ER+/PR+, HER2+ Surgery 8/15/2012 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left); Reconstruction (right) Dx 8/23/2012, IDC, <1cm, Stage IA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 8/23/2012 Arimidex (anastrozole) Chemotherapy 10/23/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/6/2013 Reconstruction (right): Tissue expander placement Surgery 5/15/2013 Reconstruction (right) Surgery 5/15/2013 Prophylactic ovary removal
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Jul 25, 2012 10:35AM - edited Jul 25, 2012 10:38AM by Infobabe

Beesie 

In reading over those articles it seems to me that a lot of progress has been accomplished.  I wonder how come it has not been put into practice for all of DCIS patients.  

Do you think the Oncotype test is using it?  I don't really understand the methods of the Oncotype test.  Do you think it would make any difference for people like me whereby all the DCIS was removed with big margins? 

The research seems to be the study of the natural progression of DCIS without treatment. 

Dx 3/15/2012, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 5/1/2012 Lumpectomy: Left
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Jul 25, 2012 12:04PM - edited Jul 25, 2012 12:08PM by BLinthedesert

The oncotype DCIS test uses a little different technology than the most recent paper and they use different "outcomes.  They both look at expression levels of genes.  The oncotype test looked at differences in expression levels of a set of genes between women with DCIS that recurred and did not.  They came up with a list of genes that they said can predict recurrence - but results from their study (which was performed using a banked sample of tissue from a larger ECOG - Eastern Cooperative Group Trial - on a sample size of 327) has not been published in any peer-reviewed journals (despite the results being given at a talk over a year ago).  After they publish their results - these results will need to be tested in a randomized trial to validate (the Oncotype test for invasive cancer is being tested right now in a National Cancer Institute trial).  Since they are a private company, and these types of tests don't have to undergo any FDA oversite - they have made their test available before any scientific validation is performed.  It is not clear, yet, how much impact this test will have, obviously, if it works it would be tremendous - but the results of their original trial has not been evaluted by the scientific community - nor the FDA or any regulatory body at this time.

The paper that you cited (that came out last week) compared a set of banked samples from women with DCIS and Invasive disease, as well as tissue from these tumors and normal tissue from the same woman.  They took these samples and amplified different types of cells (meaning they did not just examine differences between the two sets, but modified the abnormal cells found within them) - to see how these modified cells responded to media that would make the tumor environment more comfortable/likely to invade surrounding tissue.  They also did mouse experiments and cell line experiments.  They then took the list of genes that differentiated the DCIS and IDC and compared it to other lists of genes that have been found in various experiments in other labs (and have been published in other journals).  This paper is more concerned with understanding the biologic mechanisms of DCIS and if these are different than IDC.  None of their results will have clinical impact in the short term.

Dx 3/15/2012, DCIS, 1cm, Stage 0, Grade 2, ER-/PR- Surgery 4/19/2012 Lumpectomy: Right Radiation Therapy 5/20/2012
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Jul 25, 2012 03:16PM - edited Jul 25, 2012 03:18PM by Beesie

Wow, Blinthedesert, thank you!  Very interesting and helpful.... I couldn't have answered Infobabe's question about the Oncotype test! 

Infobabe, I agree with you that there is progress being made. I know that many of the group here who've been recently diagnosed are frustrated with how difficult and confusing it is to make treatment decisions about DCIS. I agree that it is difficult and confusing, but I see it differently. Having been around for 6+ years, what I see is progress.  

When I was diagnosed, it was accepted that anyone who had DCIS had to have either a lumpectomy with radiation or a mastectomy.  It was pretty rare that anyone would suggest that it might be possible to pass on radiation after a lumpectomy.  There also was virtually never any consideration given to whether radiation might be beneficial after a mastectomy. And there certainly was no discussion as to whether some diagnoses of DCIS might be okay to leave in the breast, and possibly treat with hormone therapy rather than surgery.

Today it's recognized that women who have low risk cases of DCIS and good surgical margins may be able to pass on radiation with little additional risk.  It's also now understood that if someone with DCIS has positive or very close margins after a mastectomy, her recurrence risk may be considerably higher than what's normally expected after a mastectomy (usually the risk is only 1% - 2%). Because of this, doctors are taking a closer look at the surgical margins after a mastectomy for DCIS and it's often now being recommended to women with close margins that they consider having radiation.  Then there is the question as to whether someone with a low risk diagnosis might consider not having surgery at all.  At this point we don't yet know enough about the biology of DCIS to understand which diagnoses are truly low risk and which aren't, so the "watchful waiting" approach has not yet entered the mainstream.  But whereas the question was never even asked before, today the question is front and center and is being addressed in a clinical trials and in a lot of research, such as this recent study, that is striving to get the answers.

All this progress is great, but there's an impact to those who are newly diagnosed. The new learning from the past few years has made more treatment options available to DCIS patients. However, because we have only pieces of the puzzle but not yet the whole picture, in some ways it's made the treatment choices more difficult.

I've seen a lot of progress over 6 years. I suspect however that when it comes to the biology of DCIS, there is still a lot more that we don't know than what we do know. While one group of scientists is looking at it one way, another group of scientists is off looking at it another way. Both approaches may have shown initial promise, but one or both could hit a dead-end. Or may one is "the answer", but which one? Or perhaps something new will be reported next week, setting other scientists off in a different direction all together. There appears to be a tremendous amount of work being done on understanding the biological mechanisms of DCIS and what it is that triggers a DCIS cell to become invasive. There have been quite a few significant findings. But it's all still a work in progress. Much of what's been discovered isn't usable yet, when it comes to making decisions about individual DCIS diagnoses and choices of treatment.  

So in the end we each have to make our treatment decisions based on the information that is known and available to us at the time we are diagnosed. And we can hope that it gets easier and clearer for those diagnosed in the future.   

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 25, 2012 06:17PM LAstar wrote:

Great thread and great discussion!

Dx 3/5/2012, DCIS, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR- Surgery 4/5/2012 Lumpectomy: Left Surgery 5/3/2012 Lumpectomy: Left Surgery 6/18/2012 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 10/4/2012 Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 1/25/2015 Reconstruction (left): DIEP flap
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Jul 26, 2012 05:09PM Sher7 wrote:

Thank You Beesie! I am in process of trying to understand my diagnoses and begin treatment. One of my questions was...do I even have breast cancer? You answered this in the most understandable way as well as giving so much craved for info and avenues to find more info. It sounds like a biopsy is not your true diagnoses, only points to it as possible. The pathology report after a lumpectomy will give the true picture...?

Dx 7/16/2012, DCIS, Stage 0, Grade 2 Surgery 8/6/2012 Lumpectomy: Right
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Jul 26, 2012 09:09PM Beesie wrote:

Sher, I'm glad the information is helpful.  And yes, you are exactly right.  The biopsy provides a preliminary diagnosis but it's only after you have your final surgery, once all the cancer in the breast is removed, that you'll know your exact diagnosis.  There are actually terms to describe both types of diagnosis. The first, based on the imaging tests and biopsy, is called the Clinical Staging.  The second, based on the pathology of the cancer that's removed during surgery, is called the Pathological Staging.

Types of staging

All staging is done at the time of diagnosis, before any treatment is given. There are 2 major types of staging.

Clinical staging

This is an estimate of how much cancer there is based on the physical exam, imaging tests (x-rays, CT scans, etc.), and tumor biopsies. For some cancers, the results of other tests, such as blood tests, are also used in staging. The clinical stage is a key part of deciding the best treatment to use. It's also the baseline used for comparison when looking at the cancer's response to treatment.

Pathologic staging

Pathological staging (also called surgical staging) relies on what is learned about the cancer during surgery. Often this is surgery to remove the cancer and nearby lymph nodes, but sometimes surgery may be done to just look at how much cancer is in the body and take out tissue samples.

In some cases, the pathologic stage may be different from the clinical stage (for instance, if the surgery shows the cancer has spread more than it was thought to have spread before surgery). The pathological stage gives the health care team more precise information that can be used to predict treatment response and outcomes (prognosis).

www.cancer.org/Treatment/Under... 

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 27, 2012 12:54PM frangeo wrote:

This was very helpful.  Is ADH pre-DCIS?

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Jul 27, 2012 02:34PM Beesie wrote:

frangeo, yes, AHD is pre-DCIS.  The following graphic from BC.org shows this really well. 

Range of Ductal Carcinoma in situ

http://www.breastcancer.org/pictures/types/dcis/dcis_range.jsp

.

"Atypical Ductal Hyperplasia of the Breast  Definition:  A proliferative ductal lesion that demonstrates some but not all features of low or intermediate grade ductal carcinoma in situ  "   http://surgpathcriteria.stanford.edu/breast/adh/printable.html

ADH is generally thought to increase the risk of breast cancer to about 4 to 5 times that of the general population. The important thing to understand is that this increase in risk is as compared to "base" risk, not "average" risk.  Base risk refers to someone who has no personal risk factors, i.e. a woman who's only breast cancer risk factor is that she's a women.  From everything I've been able to find, this base level of risk falls in the range of 4% - 6%.  So this means that a diagnosis of ADH might increase risk to anywhere from 16% to 30%, depending on the woman and what other risk factors she might have.  This compares to the "average" woman who has a risk of about 12%.  The "average woman's" risk is higher than the base level because the "average" includes everyone, including women who are very high risk because of personal or family health history.  So what this means is that if you don't have many other risk factors, a diagnosis of ADH might in fact increase your risk to only just a bit more than "average" risk.  Hope this makes sense!

An interesting article:  The diagnosis and management of pre-invasive breast disease: Ductal carcinoma in situ (DCIS) and atypical ductal hyperplasia (ADH) - current definitions and classification   http://www.ncbi.nlm.nih.gov/pmc/articles/PMC314427/

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 29, 2012 03:46PM Kd6blk wrote:

Wow, thank you so much or this thread. It gave me a lot of information. In my case, I am an agressive type of DCIS, but I had ITC in two of three lymph nodes that I have been trying to understand. I am still not sure if I am stage 0, but I guess after my mastectomy next week, they will see if I have more stuff going on. MY Oncologist has been talking hormone pills but I did not react well to birth control pills years ago so she said something about how Tomoxifan may not work for me and mentioned another pill-- I am post menapausal...so my treatment is not yet determined.

Lisa

Surgery 6/15/2012 Lumpectomy: Left, Right Dx 6/21/2012, DCIS, 3cm, Stage 0, Grade 2, ER+/PR+ Surgery 7/6/2012 Lumpectomy: Right; Lymph node removal: Left, Sentinel Surgery 8/1/2012 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 12/11/2012 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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Aug 1, 2012 05:36PM - edited Aug 4, 2012 09:21PM by Beesie

I just edited my main post to add information about the Van Nuys Prognostic Index (VNPI) in the paragraph about radiation.  Thanks to Sandie for the suggestion!

While I was at it, I clarified/updated the paragraph on the Oncotype test.  There is a lot of discussion about the Oncotype test on this board these days so I thought it would be helpful to put in the reminder that this test is very new.  Testing to-date on the Oncotype for DCIS has been very limited, to the point where even Genomic Health don't recommend that the Oncotype be used on it's own to make the radiation decision. That's an important consideration for anyone who is thinking about having the test done. The VNPI has been around a whole lot longer, and there is a lot more data behind it. 

Edited for typos only. 

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 4, 2012 07:53AM - edited Aug 4, 2012 07:57AM by redsox

The Oncotype DCIS Score is the first specific biomarker test for DCIS, but there is a great deal of ongoing work on biomarkers.  This may validate (or not) the results for this test.  Other researchers may show evidence for the prognostic value of other combinations of biomarkers.  Being able to identify the genomic profile of an individual's DCIS gives hope of individualized treatment for patients in the near future.  For those diagnosed right now it is one more piece of information to help guide decisions, but it is not a definitive guide. 

The Van Nuys Prognostic Index (VNPI) is a different type of measure based on clinical and pathological factors.  Although it has been revised through multiple versions, it includes age in addition to margin size, tumor size, and tumor grade/aggressiveness. All oncologists use clinical and pathological factors in forming their recommendations for treatment for a patient and all of them would probably use the factors that are included in VNPI, but how they view them in combination varies.  Putting the four factors into an index implies that each factor is equal and a "bad" result in one factor can be offset by "good" scores on the others.  The data from other studies does not support that.  Margin size is probably the most important and the doctor who has led development of VNPI is a strong advocate of surgical methods leading to very large margins.  Young age is also regarded as a very troubling factor more important than other factors.  In addition, there are other clinical and pathological factors that have not shown up in the VNPI database and are not included in the index, but that have shown up repeatedly in other studies.  The most common is probably "not detected by mammography but by symptoms".   

Dx 2009, DCIS, Stage 0, ER+/PR+, HER2-
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Aug 4, 2012 08:22PM BLinthedesert wrote:

I just feel compelled to note that the VNPI has not been validated either - and there have been outside institutions who have tried.  I think the problem is that the level of pathology that is used by the VNPI folks is much more intensive than most clinical labs - many labs don't even have breast pathologists on staff, the pathologists are general pathologists and see all tissue coming through the door.  For most things that are seen every day things are great, but there are many borderline and subtypes of cancers that are just not common - and these can get different readings depending on pathology lab.  Also, "margins" are defined differently from study to study.  The NCCN guidelines are a good indication of how difficult it is to find replication between studies, they describe "reccurence rates" based on all the studies (up until the time they redid the guidelines - and I think this was 2011, but maybe 2009) and recurrence rates were "9-40%"!!!  This just describes the amount of variation that is seen in the studies, likely in part due to pathology, study design, and sample size issues.

Dx 3/15/2012, DCIS, 1cm, Stage 0, Grade 2, ER-/PR- Surgery 4/19/2012 Lumpectomy: Right Radiation Therapy 5/20/2012
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Aug 4, 2012 11:22PM - edited Aug 4, 2012 11:23PM by Beesie

redsox and BLinthedesert, thank you both for the additional information and for adding to the discussion. 

I believe that the work on biomarkers is the way of the future. The DCIS Oncotype is the first step in that direction but with the Oncotype being so new, there simply isn't a lot of data to validate it yet.  Hopefully it will be validated, but that remains to be seen. Whatever happens, however, the good news is that there is a ton of research going on with biomarkers and I'm confident that it will lead to new learning that will eventually impact how we treat individual cases of DCIS.  

In the meantime, while the Oncotype can be used as an additional tool to help with our treatment decisions, for the most part we still have to rely on the traditional measures. The VNPI is a standardized and systematic way to look at these traditional measures. redsox, although points for each of the four factors (margin size, tumor size, tumor grade/aggressiveness and age) are added together to determine the VNPI score, as I look at the VNPI scoring system, I'm not sure I agree that the VNPI assumes an equal weighting for each of the factors. The criteria for determining whether a factor gets a favorable 1 point, an intermediate 2 points or an unfavorable 3 points seems to put more weight on some factors and less on others.  For example, margin size, which is probably the most significant factor in the determination of recurrence risk, gets the best score (a low 1 point) only if the margin is 10 mm or greater - something that is very rarely achieved. On the other hand, tumor size, which is possibly the least significant in terms of recurrence risk, gets the best 1 point score for all tumors up to 1.5 cm in size and gets 3 points only for tumors that are greater than 4cm in size. Therefore, whereas not many women will get a favorable "1" score on margin size, many will get a "1" on tumor size. Similarly, young age, which you suggest as being a particularly troubling factor, gets an automatic 3 points (for anyone less than 40 years old). So to me this suggests that the VNPI is not putting equal weight on all the factors.

I do agree that the VNPI is not the only way to look at these factors and I agree too that what's most important is that these factors be considered, one way or another, in the radiation decision. Unfortunately I don't think it's true that all oncologists look at these factors. Too often I see radiation recommended whenever someone has a lumpectomy for DCIS, regardless of the margin, tumor size/grade/aggressiveness, the patient's age, etc.. I've seen many situations where the benefit from radiation really seems questionable and yet when women here have questioned their doctors, they've been totally rebuffed. That's one reason why I added into my post the point about the VNPI. Whether it's actually the VNPI that an oncologist uses, or some other way that he or she prefers to evaluate these (and possibly other) factors, it is important that the radiation recommendation be made based on some objective (or relatively objective) criteria that measures the need for and benefit from radiation.  

The other reason I mentioned the VNPI is because I've seen women come to this board determined not to have radiation. I appreciate that many women don't want to have radiation, but before making that decision I hope that they will look objectively at their diagnosis and pathology. The VNPI is one way to do that. It's easy to understand and can help someone put the pieces together on why radiation might really be necessary, or not.

BLinthedesert, have you seen this study?  The significance of the Van Nuys prognostic index in the management of ductal carcinoma in situ   What are your thoughts on it?  There's also this article, The Value of the Van Nuys Prognostic Index in Ductal Carcinoma In Situ of the Breast: A Retrospective Analysis which concludes that the VNPI can be "a useful tool in the treatment of DCIS" while stating that the validity needs to be confirmed with large numbers of DCIS patients. I've found a couple of other small studies that also seem to validate the VNPI, if not statistically significantly, at least with a strong directional result. From my reading of the literature on the VNPI, there seems to be overall agreement (with one or two exceptions) about the usefulness of the VNPI, even though it has yet to be statistically significantly validated in a large study.  That's pretty much how I see it too.  

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 5, 2012 03:08PM - edited Aug 5, 2012 04:46PM by BLinthedesert

Hi Beesie!

There is a difference between replication of studies and validation.  The two studies that you have referenced that discuss the VNPI are actually trying to "replicate" the VNPI study (and they have not been able to even do this yet).  A study that would "validate" this as a biomarker would be a prospective, likely randomized, trial.  Study designs for biomarker trials are of themselves an area of research since they are so prevalent these days.  There are two papers that discuss the types of designs that are used in biomarkers: jnci.oxfordjournals.org/conten... and jnci.oxfordjournals.org/conten...  

In 1999 the National Cancer Institute (NCI) created the Early Detection Research Network (EDRN - edrn.nci.nih.gov/) which was designed to help research in early detection of cancers of all organ sites.  All studies through this network (that are funded through NCI) follow strict guidelines through the phases of biomarker trials that are described in the papers I linked.  These are all trials that are trying to develop biomarkers for early detection - which are a slightly different context than optimizing treatment decisions (like the Oncotype test or VNPI) - and even a little different than the Her2 biomarker that is used as a "companion" diagnostic biomarker that is used to optimize therapy.  But all biomarkers need to use some combination of these biomarker trial designs, and the validation phase is always a prospective, randomized trial -- and these ALL take time.  The EDRN website shows how many biomarkers have been actually been moved to practice (very very few) even after 13 years of funding - it just takes a long time to properly validate these potential biomarkers (note that a biomarker is not just genetic/protein tests but is often defined as "A biomarker is a characteristic that can be objectively measured and evaluated as an indicator of normal biological processes, pathogenic processes or pharmacological responses to a therapeutic intervention".) 

The most "successful" (farthest along in the biomarker study progression) prognostic biomarker study in breast cancer is the Oncotype test for early stage invasive cancer, again funded by NCI, called the Tailorx trial (www.cancer.gov/clinicaltrials/...  The low and high scores are treated with treatment as usual (by the way these scores seem correlate very well with what would be used in the decision process even without the oncotype test for the highest and low risk groups) - either surgery+rads+hormone therapy and surgery+chemo+rads+hormone therapy, respectively.  Those women who score in the intermediate range are then randomized into two groups: surgery+rads+hormone therapy and surgery+chemo+rads+hormone therapy.  So, this is a test to "validate" the use of the gene expression to direct therapy - focusing on the intermediate group, which is the "grey" area of treatment for early stage invasive breast cancer.

In order to successfully validate the VNPI one could design a trial that prospectively followed women with low stage DCIS for 10 years - one group would be randomized to treatment based on VNPI and the other group to current theraputic guidelines.  The comparison would be % recurrence between these two groups.  But, it would have to be adequately powered (statistically) since absence of statistical difference does not mean that the results are "the same" (because you can have insignificant results because of too small of sample size).  If the recurrence rates were significantly different in the VNPI group then it would imply that this index is appropriately grouping individuals.  The problem with this trial would be that many women (and their health providers) don't want to take the chance of this index not working properly - so, right now, all studies are done on banked samples (retrospective in nature).  

It is a tough thing - we still don't know the natural course of DCIS (there have been mechnistic studies that refute the ADH -> DCIS claim), so we don't know what to target. There was a sample of misdiagnosed tissues from the Vanderbilt group (they were misdiagnosed as benign biopsies) and it was a very very high group of these low grade DCIS samples did in fact develop IDC between 10-30 years later.  So, it is not just about grade -- but of course these misdiagnosed cases didn't even have lumpectomy.

Dx 3/15/2012, DCIS, 1cm, Stage 0, Grade 2, ER-/PR- Surgery 4/19/2012 Lumpectomy: Right Radiation Therapy 5/20/2012
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Aug 6, 2012 07:38AM redsox wrote:

The VNPI does not include weights ( other than all=1) in the index. The score on each factor can take a value from 1 to 3 but the scores from each factor is simply added together, meaning the weighting structure of the index has no weighting differential for the factors. The important point is that this is just one way to summarize the clinical and pathological factors for a particular patient. All oncologists should take a thorough history and physical and use all clinical and pathological factors to form their treatment decisions but most will use summary methods other than the VNPI, such as the NCCN decision trees or calculators based on a broad range of research findings.

If a patient looks at her path reports and calculates a score for the VNPI that tells her she does not need radiation but then goes to doctors who recommend radiation that does not mean the doctor is not looking at the clinical and pathological factors! It does mean a good two-way discussion is needed to clarify the reasons for the recommendations. Those reasons might include unfavorable results for that patient on factors not included in the index, subtleties of the pathology that are not captured in the index, greater emphasis on the more important factors within the index, or differences in risk tolerance.

Most papers on the VNPI use a recurrence rate of 20% as the threshold of acceptability while many other researchers use 10%, thus leading to different recommendations by doctors facing the same case information. The important risk tolerance should be the patient's but finding a good estimate of your recurrence risk with both a point estimate and a reasonable confidence interval around the estimate requires much more detailed assessment of your results than just these four factors.

Dx 2009, DCIS, Stage 0, ER+/PR+, HER2-
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Aug 6, 2012 09:15AM Omeggo wrote:

Hey Beesie, BL, Redsox, (and any others):  Have you thought about creating your own website or a blog where all your information can be found?  Or a link here on the BCO site?  I find it super helpful and it is very comprehensive.  Of course, maybe this is it, and no other venue is required.

You are in the front lines here and your collective brainpower is impressive.  Thank you for your work, your willingess to share here, and all the time spent creating posts which make it understandable for a Newby like me!

Please keep it up.  You are amazing and I admire you.  Thanks again.

Dx 6/15/2012, DCIS, Stage 0, Grade 3, ER+/PR+, HER2+ Surgery 8/15/2012 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left); Reconstruction (right) Dx 8/23/2012, IDC, <1cm, Stage IA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 8/23/2012 Arimidex (anastrozole) Chemotherapy 10/23/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/6/2013 Reconstruction (right): Tissue expander placement Surgery 5/15/2013 Reconstruction (right) Surgery 5/15/2013 Prophylactic ovary removal
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Aug 6, 2012 09:50AM Beesie wrote:

redsox, when I said that I don't think that the VNPI is putting equal weight on all the factors, I wasn't suggesting that there was a weighting score built into the index, but just that I think that the way that 1, 2 or 3 points are assigned to each factor assumes a different level of significance for one factor versus another. I appreciate your perspective on this and what's most important is that those reading this get as much information as possible to make their decisions. Having two perspectives is better than having just one. I think we agree on the most important point, which is that all patients need to talk to have a good discussion with their doctors about their recurrence risk and their risk factors. Smile  

Blinthedesert, thank you so much for that explanation of biomarker trials and the difference between a replication study and a validation study.  As someone with a non-medical research background, while I'm able to interpret the results of research studies, the information that you are able to provide on this is way outside my area of knowledge and is greatly appreciated! 

Omeggo, thank you! I'm actually happy to stay here and post rather than set up my own website or blog. What I write is just one person's opinion based on the research and studies that I find and how I interpret them. As much as I dig around for research, I don't find every new (or old) study and my interpretation, while aided by some understanding of research technique, is limited and subjective. I don't want what I say to ever be in a place where it's the only viewpoint provided. That's what I like about posting here. I'm glad that redsox is here to provide more information and offer a different - and just as valid - perspective. I'm glad the BLinthedesert is here to share her expertise and educate me about cancer research. What I think is unfortunate is that a lot of the DCIS old-timers seem have to disappeared from the board lately. With their absence we are missing a lot of accumulated knowledge that could be really beneficial both on this thread and across the forum. 

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 6, 2012 07:11PM SJW1 wrote:

One study by Lorie Hughes etal that validated the VNPI was published in JCO in 2009:  http://jco.ascopubs.org/content/27/32/5319.full

Sandie

Dx 6/22/2007, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+
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Aug 6, 2012 07:46PM - edited Aug 6, 2012 07:46PM by BLinthedesert

They did not use the VNPI score in that study ... and, they have not finished the follow-up, it was only 5-year follow-up:

"The increase in IBE rates beyond 5 years (Figs 2 and 3) warrants caution regarding the clinical implications of our results. This increase and the shapes of the curves are similar to the findings in a study of 268 patients treated with lumpectomy and radiation.24 Patients with high-risk histology (presence of nuclear grade 3 plus comedo-type necrosis) in that study had a 5-year failure rate of 12%, compared with 3% for patients with lower-risk DCIS; however, at 10 years the respective rates were 18% and 15% Thus, substantially longer observation is warranted to determine whether omission of radiation treatment is appropriate for some patients with DCIS. "

Dx 3/15/2012, DCIS, 1cm, Stage 0, Grade 2, ER-/PR- Surgery 4/19/2012 Lumpectomy: Right Radiation Therapy 5/20/2012
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Aug 6, 2012 08:23PM Moderators wrote:

Beesie, we're happy (VERY happy) to have you posting here too, and bringing such a thoughtful and informative discussion to such a large audience.

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Aug 6, 2012 09:01PM - edited Jun 25, 2014 09:06AM by sandpiper1

This Post was deleted by sandpiper1.
'They laugh at me because I am different; I laugh at them because they're all the same' DCIS > than 7cm with extensive comedonecrosis. Dx 4/26/2012, DCIS, 6cm+, Stage 0, Grade 2, 0/1 nodes, ER+/PR+

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