DCIS Treatment Plan: A New Standard of Care!
Comments
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DF, why in the world would you fear retribution? I realize that small towns offer less options but goodness I have no idea as to why you would think doctors would in any way get back at you~~
I have changed docs in the past that I did not care for but no one got back at me?
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Marijan,
While I applauded Genomic Health (the diagnostic company that has developed the Oncotype and Oncotype Dx for DCIS tests) - none of the abstracts that you embedded has been published yet. I raise this point because publication means the studies have gone through some level of peer-review that abstracts/talks at conferences have not. The TailorDx trials for the Oncotype panel (http://www.genomichealth.com/en-US/Publications/Cl... ) for ER-positive invasive breast cancer won't be ready for publication until 2016-17, the OncotypeDx for DCIS has not been validated in a published peer-reviewed manner yet.
I hope we all can have some objective, validated, method for making decisions soon. But for now, there are no well described methods and we all have to make decisions based on the level of risk we are willing to live with.
Best wishes for peace and health!
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I...Truly would like to know what hospital you had this done at.....Liz
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Well thank you BLinthe desert. Good to know, guess I'm one step ahead. But I really only meant to post the link to show where the information can be found and I did say I hadn't read it yet. But then glad I didn't ask the Dr. about something that's not available. Thanks again.
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I fear retribution because of events that have convinced me that it is wise to be careful. I lived and worked in a major city as a public relations executive and health writer and I never felt this way. Maybe the difference was that I had a high level job with powerful connections. My most powerful connection now is a spiritual one. Not going to push my religious beliefs on this board.
BTW, everyone I met at the American Cancer Society Hope Lodge talked about the positive role of religious belief in coping with their cancer. Just sayin.
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DecisionFreak:
I am glad to hear that you were able to work with your new doctors to arrive at an individualized treatment plan that you are pleased with. Thanks also for sharing your experience about the flight and ACS assistance, and kudos for finding the resources you needed. This clearly works very well at least for a second opinion consultation at a center of excellence and/or treatments that do not entail multiple repeat visits.
BarredOwl
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Thank you for the caveats about the genetic studies. I will keep a lookout for peer reviewed studies on this topic as I conduct my own literature review. Again, it is hard for me to cut and paste citations on a small phone, and my Dell compute is out of commission.
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So I did not mean to post "studies". I meant to post a link to the website and a link to the chart that shows how money can be saved with more people taking the tests. It does include discussion on radiation - there are a lot of links. No in the beginning I had DCIS which was cut out last week (going back for re-incision to clear a margin). No primary has ever been found. Only one lymph node found positive with a "few cancer cells". I believe I do qualify but I would have to search again for that information. Will try to get back on that later.
FYI sometimes I just post things that others might make use of..... not necessarily because they apply to me. Should I delete?
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Hi Marijen:
You should certainly not ever hesitate to inquire about your eligibility for any test regardless of my thoughts on the subject! I defer to the advice you receive from professionals on the question. However, at the same time, please be sure to remind them of and discuss the significance of the initial pathology node classification of "N2" and finding of "3A right breast cancer (due to matted lymph nodes in axilla)" which you mentioned here:
https://community.breastcancer.org/forum/68/topics...
BarredOwl
[Edited to add: By the way, on the right I had extensive ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes. The presence of even that very small amount of IDC controlled the stage determination (Stage IA), increased the risk of recurrence (both local and distant), and determined the recommended treatment.]
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It can work well for repeat visits too. Some people stay up to three months at the ACS Hope Lodges at no charge or fly or drive back and forth. Hope Lodges have big kitchens and private food storage areas so people can cook. Patients can bring caregivers to ACS Hope Lodges free of charge. ACS also has partnerships with hotel or Extended Stay facilities that provide deep discounts for accommodations. The Hope Lodges have shuttles that take patients free to treatment facilities nearly all day. For short trips, patients are sent to Mercy Flights known in some states as Angel Flights. I did not go for a second opinion. I went for an eval and to meet with my medical team. Granted, I am on disability and don't have to report to a job or take of a family. Social workers can help in many cases help women secure various kinds of assistance and churches and friends will also help out if a woman has to be away from family. Many companies are required to offer short and long-term disability, so a working woman with breast cancer may be able to get paid leave on short-term disability if she has to be absent from work to travel back and forth to a distant facility. I think there may also be organizations in addition to ACS that provide assistance including financial help for cancer patients who need prolonged treatment or intermittent treatment and who have to travel to get the care they need. Some people join clinical trials that often pay for travel and lodging expenses. Shelley Hwang is conducting clinical trials on DCIS at Duke University. ACS has a database of clinical trials and they can do a search for interested patients.
BTW, ACS has a donated miles program for people undergoing treatments at distant facilities. People donate unwanted airline miles. These miles are not given for second opinion travel only for such treatments as surgery, chemotherapy, and radiation.
I plan to have all my treatment and follow up care at the Comprehensive Cancer Care Center. As long as I step on the wing of a small plane, I am good to go.
So, does this community need guide on locating and accessing resources for high quality cancer care?
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Thanks for that additional information!
BarredOwl
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I am following al the posts here cause of my dx. Unfortunately, Decision Fre my mother-in-law ate 3 times as much broccoli as me and still died of invasive mets. She was treated at an nci hospital and traveled from ca to tx to access even more treatment. She was one of the earliest students studying nutrition in sf 60 years ago. I so wish a good diet and physical fitness would change those little cells but I personally don't believe they do. I have been treated at an nci center and locally in my area. Keep posting and good luck.
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It can work well for repeat visits too. Some people stay up to three months at the ACS Hope Lodges at no charge or fly or drive back and forth. Hope Lodges have big kitchens and private food storage areas so people can cook. Patients can bring caregivers to ACS Hope Lodges free of charge. ACS also has partnerships with hotel or Extended Stay facilities that provide deep discounts for accommodations. The Hope Lodges have shuttles that take patients free to treatment facilities nearly all day. For short trips, patients are sent to Mercy Flights known in some states as Angel Flights. I did not go for a second opinion. I went for an eval and to meet with my medical team. Granted, I am on disability and don't have to report to a job or take of a family. Social workers can help in many cases help women secure various kinds of assistance and churches and friends will also help out if a woman has to be away from family. Many companies are required to offer short and long-term disability, so a working woman with breast cancer may be able to get paid leave on short-term disability if she has to be absent from work to travel back and forth to a distant facility. I think there may also be organizations in addition to ACS that provide assistance including financial help for cancer patients who need prolonged treatment or intermittent treatment and who have to travel to get the care they need. Some people join clinical trials that often pay for travel and lodging expenses. Shelley Hwang is conducting clinical trials on DCIS at Duke University. ACS has a database of clinical trials and they can do a search for interested patients.
BTW, ACS has a donated miles program for people undergoing treatments at distant facilities. People donate unwanted airline miles. These miles are not given for second opinion travel only for such treatments as surgery, chemotherapy, and radiation.
I plan to have all my treatment and follow up care at the Comprehensive Cancer Care Center. As long as I step on the wing of a small plane, I am good to go.
So, does this community need guide on locating and accessing resources for high quality cancer care?
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Determining Your Patient's Eligibility
The Oncotype DX Breast Cancer Assay provides comprehensive and actionable direction across the spectrum of ER-positive, invasive breast cancer biology, predicting the likelihood of adjuvant therapy benefit as well as your patient's 10-year risk of distant recurrence. This information will help to guide your recommendation to personalize treatment for each of your patients.
The Oncotype DX Breast Cancer Assay is intended for use in all newly diagnosed patients with invasive breast cancer who are:
- Node-negative or node-positive (1-3)
- ER-positive
- HER2-negative
FOR ALL EARLY-STAGE, ER-POSITIVE, HER2-NEGATIVE,
NODE-NEGATIVE, AND NODE-POSITIVE (1–3) PATIENTS
WITH INVASIVE BREAST CANCERBy testing every eligible patient after surgery but before you discuss her treatment
plan, you can make recommendations with increased insight and confidence.0 -
Only one node in the surgery pathology report Barred Owl, no matted.
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Marijen:
I believe we were talking about radiation and OncotypeDX for DCIS. My personal view as a layman, is that the OncotypeDX test for DCIS would not likely be recommended to you, but you should confirm it with your providers.
Unlike the test for DCIS, OncotypeDX for invasive disease is mainly used for deciding chemotherapy. Again, in general, not all patients are eligible. Among node-positive patients, those eligible for the test may have 1 to 3 positive nodes. Those with more than three positive nodes would not formally be eligible based on the information you posted and elsewhere. If you scroll down on the page you just copied from to the eligibility chart, you will see that there may be additional limits on eligibility among ER+ HER2- node-positive patients. For example, among Stage IIIA patients, this TNM status is not listed: T0 N2 M0. However, it seems to be "p" stage or surgical pathology.
http://breast-cancer.oncotypedx.com/en-US/Professi...
Due to your having received neoadjuvant endocrine therapy, I would not be confident in saying whether or not you are personally eligible for the test for invasive disease. Anyone interested in these tests should always seek advice from their medical oncologist regarding their eligibility for the test.
BarredOwl
[Edited to add: As far as the invasive test goes, my understanding is that a tissue sample of the invasive cancer is used to conduct the test. If the disease is occult (i.e., no invasive tumor has been found, T0), it is unclear to me what invasive tumor tissue could be used for performing the invasive test.]
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This one references a predictive value for radiation treatment
http://www.breastcancer.org/symptoms/testing/types/oncotype_dxThe oncotype dx was first used for invasive
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Hi, I made it my life's work as a professional writer to study food and nutrition. I was struck by the complexity of metabolic processes! So, I know what you are saying in questioning the role of diet and nutrition. I do think it is fairly well established the body fat produces estrogen. However, if body fat and a poor diet cause cancer then my 84 year old aunt would have lost both breasts by now. I don't think she knows what fresh broccoli looks like. On the other hand, large population studies seem to point to the Mediterranean diet as protective against many chronic diseases including breast cancer. It is not just the food that is consumed. It is also how it is prepared, apparently. For instance, carrots are rich in beta carotene, a protective antioxidant, but you have to cook the carrots sufficiently to break down the cellulose wall to allow the body access to beta carotene. I don't have anything against raw food proponents, but cooking vegetables often is key to releasing nutrients unless you have a very good juicer. Tomatoes have some health benefits from lycopene but you have to cook them to release lycopene. Some nutrients require oil in order to be properly absorbed and lycopene may be one of those nutrients that need to be cooked and require oil for absorption. Broccoli, cabbage, Brussels sprouts contain phyto nutrients believed to be cancer preventive but it may matter how you cook these vegetables. Same goes for onions and garlic. Then, there may be genetic factors that influence the way our bodies process and use food.
I personally believe that even modest exercise may help the body's immune system and help control body fat.
At the crux of the matter is that most diseases that plague modern man (and man has always has to fight disease and pestilence to survive) appear to be exacerbated by processes that create chronic inflammation. Certain diets encourage inflammatory processes and thus may assault the body with so many challenges that the person's ability to protect itself against real challenges may be diminished. Certain diets discourage inflammatory processes so that the body has the ability to detect and respond to real threats. I am not a nutrition scientist but I would put my money down on a diet rich in cruciferous vegetables, cooked fruit, certain nuts such as walnuts, legumes and beans. Almonds are a fruit, and I think they are a fabulous, healthy snack. My doctor said no meat, but my body says modest quantities of chicken or fish are required for me to maintain strength.
There is also the happiness factor. We know from exhaustive research that dietary changes are the hardest behavior change to make. I say that qualify of life counts. If eating broccoli and brussel sprouts on a constant basis takes away your joy, then do some research and find out how to sneak some of these nutrient rich foods into your diet slowly. Cooked vegetables can be put into a blender and used as a delicious base for soups. If it is all too much for you to eat a diet rich in the the foods I mention, then eat them as you are able. Almonds are prohibitively expensive but a handful of almonds in a bowl of quick cooking steel cut posts and a little maple syrup will go a long way. While these foods may or may not protect against cancer, as population studies suggest they do, they can help with stamina and over all well being as you cope with your cancer. Cooking can be a grand adventure especially if you find someone to shop and cook with you.
Now, my diet has gone downhill since my DCIS diagnosis. I am going to turn to modest exercise and a diet rich in fiber and nutrients to fight body fat because I know it can feed estrogen positive tumor growth. I will still eat chocolate and other less healthy foods I love. I think depriving yourself of foods you love is unhealthy. I do not have any studies in hand to support my hypothesis!
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Marijen:
The article should be revised to clarify that the test is used for different purposes in each group:
- [FOR PATIENTS WITH INVASIVE DISEASE]: to help doctors figure out a woman's risk of early-stage, estrogen-receptor-positive [invasive] breast cancer coming back (recurrence), as well as how likely she is to benefit from chemotherapy after breast cancer surgery
- [FOR PATIENTS WITH PURE DCIS]: to help doctors figure out a woman's risk of DCIS (ductal carcinoma in situ) coming back (recurrence) and/or the risk of a new invasive cancer developing in the same breast, as well as how likely she is to benefit from radiation therapy after DCIS surgery
As far as the invasive test goes, my understanding is that a tissue sample of the invasive cancer is used to conduct the test. If the disease is occult (i.e., no invasive tumor has been found, T0), it is unclear to me what invasive tumor tissue could be used for performing the invasive test.
For definitive answers, please just discuss the tests with your providers to be certain in your own mind about eligibility and uses.
BarredOwl
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yeah, I remember asking my MO about the test when I was first diagnosed and was told that my DCIS was not for the onco test, course that was 2008 before the DX version was out
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Well since I have no evidence of invasive..... like IDC, but I do have evidence of pure DCIS in my breast - who is to say? It would benefit the insurance company to have a look... And remember some people have more than one kind of cancer, it's called multi-focal right?
I have discussed it with BS but I may bring it up again since my case is a gray area. I don't know why you want to discourage progressive thinking.. ; ))
They can say it is only used for this or that but things may change or maybe they have. Still looking into it. Or I could just find another genetic test like Color Gen, which I may do on my own.
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PubMed Citation
JAMA Surg. 2015 Aug; 150(8): 739-45. doi: 10.1001/jamasurg. 2015. 0876
Survival Benefit of Breast Surgery for Low-Grade Ductal Carcinoma In Situ: A Population-Based Cohort Study.
Sagara Y, Mallory MA, Wong S, Aydogan F, De Santis S, Barry WT, Golshan M
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DecisionFreak, good for you for taking charge of your health care and doing what is best for you. I know that most of us really are thrown when diagnosed and feel we must do whatever the doctor tells us to. I am not one of those and researched ad nauseum. My concern was not so much the "Survival Rate" between having rads and not having rads or taking my AI.
It is the recurrence rate that worried me. I know that about half the time, if you recur, it will be invasive. That is the driver for me. I had a second opinion and it was very borderline on whether to go with rads or not. I chose a clinical study that was available to me and had partial breast rads over a one week period and am still satisfied with my decision. We all have such different diagnosis and risk aversion. I was blessed with living near an NCI center so I went with my doctors recommendation and feel satisfied.
I am so happy for you that you can forgo the radiation. Anything we can do to minimize our exposure to tough treatments works for me!
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By the way, a study will be starting up this year (or it already has) to see who can just use active surveillance but it is not being done in the USA.
EORTC 1401 / BOOG 2014-04 (LORD) is a phase III non-inferiority trial that will assess the safety of active surveillance in women with low-risk DCIS. The primary objective of this study will be to determine whether low-grade DCIS can safely be managed by an active surveillance strategy or that conventional treatment, being either WLE alone, WLE + RT, or mastectomy, and possibly HT, followed by active surveillance, will remain standard of care. Safety will be measured by ipsilateral invasive breast cancer-free percentage at 10 years. A total of 1,240 low-grade DCIS patients will be randomized and followed-up for 10 years. The study is expected to start in 2015 and will involve a large international collaboration.
Edited to add the active study information in UK - http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-comparing-surgery-with-active-monitoring-for-low-risk-dcis-loris
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Hi, thank you for your comments. I don't think anyone knows yet the rate of invasive cancer for women with cancer recurrence who previously underwent surgery to remove low grade DCIS cells and who took cancer drugs such as Tamoxifen or aromatase inhibitors for an extended period post-surgery. If I can get my hands on the recent studies cited by the radiation oncologist then I may have a better idea of the risk than I do now. It is critical to remember that women who have estrogen positive tumor growth are at risk for cancer recurrence even if they have undergone lumpectomy plus radiation or a mastectomy. Survival rates may be an alternative way to evaluate long-term risk. If I am not mistaken, a medical facility designated as a comprehensive cancer care center such as the teaching hospital where I went is part of the NCI network of cancer treatment centers. Somebody please correct me if I am wrong.
If my re-excision shows pure DCIS, I will be placed on deferred radiation status. That means that I may still need radiation if there are significant changes in my breast tissue that lead to a finding of high grade DCIS or invasive cancer.
At this point, I am not having radiation because I have low grade DCIS. Apparently, there is data showing that women with low grade DCIS who had the cells excised and who took Tamoxifen probably for five years had a very low rate of recurrence. Since the pathology report found that I have a high percentage of estrogen positive cells in the DCIS tumor removed, I face the risk of recurrence regardless of which treatment plan I chose.
I have decided to ask for an evaluation of whether or not I am a candidate for genetic testing. I will meet with a counselor who review my case and decide whether or not genetic testing is advisable. Given that I am having very conservative treatment, I think it is important to identify risk factors for invasive cancer.
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Less is more for radiotherapy in Breast Cancer
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This is all new, even in the last two years. I had a low-grade DCIS and a very non-aggressive microinvasion (defined as an invasive cancer less than one millimeter). With a micro, there is basically not much more chance of anything than with just DCIS. I was SO on the fence about rads, but, as I said even two years ago, I just could not get away from the numbers (rads cut recurrence in half). I was wary because of future rads problems, such as a tripling of lung cancer on the part of the lung the breast rads touched on, lung fibrosis in the future, and spontaneous rib-fracture in older age. All just possibly. I am totally fine about the lumpectomy, but I am still not great about the rads. I did consult with Dr. Lagios, and he concurred that I needed rads (he often flies in the face of this) because my margins were clear but close. I am not sure I would have chosen just AIs against prevention, as I read about all the possible (probable) SE's, which were ALREADY happening to me, and were not small. The possible side-effects of THOSE are so great. All of this new info resonates with me. Still; I had a clear feeling, at the time, that the standard of care, then, was going to change, rapidly. Oh well. For me, now, it's done. Still; I am interested in all.
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Hi, percy4,
It sounds to as if you made a sound decision based on a significant effort to look at all of your risk factors and to obtain an independent review from one of the top pathologists. I think should be at peace and sleep soundly. And, you confirmed that the SE's from,the AIs were a deterrent against your use of them for prevention. The cancer doctors I saw were very concerned that the AIs might tip my fibromyalgia pain levels with significant impacts on my health. They characterized me as a young woman at 60 with many years ahead of me, and they said many people get joint pain and related problems from the AIs that make them feel old. I may be on the cusp of a unique cure or a significant novel treatment for my fibromyalgia, and I am glad that the waters won't be muddied by the AIs.
Perhaps I need to clarify that the doctors said they think I am a good candidate for deferred radiation status. That means the doctors are still on the fence and may determine or recommend at some point that I should undergo radiation. The jury is still out, but my DCIS was low grade and my new imaging studies last week nearly two months after the first excision were great. I have lollygagged on purpose to buy myself as much time as possible to gather as much evidence as I can for informed decision making in my treatment plan.
Tamoxifen was shown in the studies cited to me to reduce risk of breast cancer recurrence significantly. However, I don't think that everyone with low grade DCIS is a candidate for Tamoxifen. I am five years out from the menopause, so I am without a doubt post-menopausal. I have been taking Tamoxifen since I got home last Friday. I have not had a hint of the hot flashes the MO was concerned about. I read that Tamoxifen is contraindicated for some or many breast cancer patients. This whole mess in regards to treatment of DCIS stems from the fact that we have the technology to find the malignancies, but we have little understanding of DCIS itself because DCIS is not one disease but a range of malignant conditions under one umbrella. The radiation oncologist told me nobody even knows if DCIS will turn into invasive breast cancer. In the absence of strong evidence based models for predicting invasive breast cancer after DCIS detection and treatment, the medical treatment will have to procede on a standard dominated by the preponderance of the evidence from what I can see along with a very thorough review of each individual case. If I had the measles, nobody would say I was a good candidate for deferred treatment.
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I have edited my introductory post to provide some new perspectives on what I thought I heard from the radiation oncologist and the medical team during my recent visit to a comprehensive cancer care center. I am making a painstaking effort to ensure that I report on mid-course corrections in my knowledge base and understanding. It is the least I can do for those of you who may feel they might have been dealt a different treatment card if the standard for DCIS treatment has changed. I rarely misunderstand verbal communications about fairly complex medical issues, but I may be relying on conclusions extrapolated by the medical team by patching data that could be relevant to my case but may come from various research studies.
I spoke with the medical oncologist for nearly an hour by phone yesterday. After that discussion, I am really unsure that what I said in my original post is entirely correct. I am trying to get my hands on the published studies or abstracts presented at conferences with data on DCIS treatment without radiation along with prolonged use of Tamoxifen or aromatase inhibitors. If the standard of care for DCIS has or is changing, I am very unsure at this point that I understand HOW it is changing. I am asking for the medical team to provide me with the data. So far, they have sent me one study on the rate of recurrence of DCIS with specific treatments. I will read it and provide a brief summary along with the citation.
As I have said before, I am on deferred radiation status. This may have been a sound psychological approach to dealing with the need for re-excision that is actually a lumpectomy with a less threatening name, before addressing the radiation issue that the team knows is emotionally charged for me. I don't know enough about the risks or benefits of having radiation or foregoing radiation for low-grade DCIS. I have the feeling that I am slated for more information and education about radiation therapy. In the end, it is my decision but I may be incorrect in concluding that the risk of recurrence for DCIS is roughly the same for excision of DCIS cells coupled with prolonged use of Tamoxifen or aromatase inhibitors, as it is for lumpectomy plus radiation or mastectomy.
I am basing what I say partly on an email I received from the radiation oncologist today saying that I appear to be a good candidate for short-term radiation therapy! So, we have moved from deferred radiation status to short-term radiation status, maybe 16 to 20 sessions of radiation therapy.
I will add a new post later on the study sent to me and anything I can recall from my discussion with the MO yesterday. I wish I had a tape of the conversation.
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Well DecisionFreak, your original post was good for me. It sent me off on my own little adventure to figure out once and for all if I need radiation and with a little help from my friends I believe I do. My case is a bit unusual - they found DCIS but no primary giving off invasive cells. So there you go. Thanks again!
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