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DCIS Treatment Plan: A New Standard of Care!

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DecisionFreak
DecisionFreak Member Posts: 435

This thread is not intended to serve as guidance or provide any kind of recommendation for a woman trying to make a decision about DCIS treatment. I am not an expert on this topic, and I have only the most rudimentary grasp of the research being conducted on DCIS. This thread documents my recent visit to a comprehensive cancer care center, and it reports on my perception of what I was told. My postings refer only to my DCIS status, evaluation, and near-term treatment plan. I have no agenda to convince any woman to follow the course of treatment proposed by my medical team. Every woman is different, and DCIS comprises a spectrum of cellular malignancies and abnormalities. To my knowledge, there is not enough research data to provide conclusive recommendations for treating the broad array of conditions that fall under the DCIS umbrella.

Many of you kindly weighed in when I asked for help understanding my diagnosis and treatment options. I thought it was only fair to tell you what happened yesterday during a comprehensive evaluation of my case at a teaching hospital that has the distinction of being a comprehensive cancer care center. To protect my privacy, I am not going to name the medical facility. I ended up at this teaching hospital after asking a world famous cancer surgeon for help in finding a medical team that would tell me all of my treatment options. She located a remarkable team of cancer experts. To find a similar facility in your region, you can do an Internet search of comprehensive cancer care centers.

I flew back and forth to this treatment facility on a Mercy Flight flown by a volunteer pilot at no charge to me. I stayed at an American Cancer Society Hope Lodge free of charge, although I did write a small donation check in gratitude for the wonderful experience I had at the Hope Lodge. Both Mercy Flights and the ACS were integral in providing assistance to me, and I recommend ACS to any woman with a cancer diagnosis who needs assistance.

I took all of my images and path reports with me. The hospital had already sent my tissue slides out for a second opinion to a different pathologist. Yesterday morning, I checked in with radiology and I underwent mammograms and an ultrasound of my right breast and lymph nodes. The radiologist reviewed the new images and said they looked great. I had an excisional biopsy in September to remove abnormal cells in my right breast. I was diagnosed then with DCIS, Stage 0, Level 1. The radiologist said that the medical staff had reviewed the new path report, looked at all the images and path reports, and confirmed the diagnosis of non-invasive DCIS, Stage 0, Level 1.

After meeting with a cancer care nurse to go over my medical history and voice any concerns, I went to lunch. When I got finished it was time to meet with the world class medical team. I met first with the radiation oncologist. She said that she agreed with me that DCIS is being over-treated. I nearly fell over when she told me that the medical team felt the scientific evidence is now sufficient to predict with some confidence the risk of breast cancer recurrence for women with my diagnosis who have the low level, non- invasive DCIS cells excised without undergoing radiation or a masectomy. The rate of cancer recurrence in a Harvard study over 5 years for women who did nothing but have an excision of the malignant cells was roughly 12 percent. However, women in at least one other study, maybe two studies. who took tamoxifen after their surgical excision had the lowest cancer recurrence rate of all the women studied. I believe that well under six percent of the women who had the DCIS cells excised, and who had low level, non-invasive DCIS, and who also took tamoxifen had cancer recurrence, although I don't recall the exact percentage. I just know the rate of cancer recurrence in this group was low. The radiation oncologist said the standard of care is or has now changed for low level DCIS. The old model of lumpectomy and six weeks of radiation or a masectomy is being replaced by a new standard of care for early stage, low level, non-invasive DCIS. That standard of care will be removal of early stage malignant cells coupled with drug therapy, either Tamoxifen or aromatase inhibitors and deferred radiation.

The radiologist told me that with my diagnosis of low level, non-invasive DCIS that I was a good candidate for drug therapy to block estrogen from feeding breast cancer cell growth with deferred radiation after I had a second excision to remove the remaining DCIS cells. She discussed aromatase inhibitors and Tamoxifen as the options. In this scenario, I would take the drug therapy without radiation at this time. The risk of breast cancer recurrence with my diagnosis is very low if I take the tamoxifen. What she told me means I may never undergo six weeks of radiation or a mastectomy unless I get a new diagnosis of invasive cancer or some thing else changed dramatically to warrant these treatments. There is a risk of recurrence for all estrogen positive breast cancers, and I think the risk of cancer recurrence after surgical excision of DCIS cells at a very early stage coupled with drug therapy may be on par with the risk of recurrence from lumpectomy and six weeks of radiation or a mastectomy, but I don't have the exact numbers for the first option.

The radiation oncologist disappeared for a long time after we talked. When she came back, she was accompanied by the highly respected and very impressive cancer surgeon and a brilliant medical oncologist who specializes in drug interactions. First, the cancer surgeon offered me the option of genetic testing if I want it, an option I am not sure is necessary. Second, she said DCIS encompasses a number of malignant conditions, but agreed that all of the imaging studies and biopsies validate the diagnosis of early stage, low level, non-invasive DCIS. She said I need to have the rest of the DCIS cells surgically excised, but agreed that I could wait until anytime in January 2016. Third, she recommended that I start therapy with Tamoxifen immediately to stop the uptake of estrogen into the breast cancer cells allowing them to multiply. Fourth, she agreed that I am a good candidate for surgical excision to achieve clear margins coupled with Tamoxifen therapy with deferred radiation. Aromatase inhibitors are not recommended at this time because these cancer doctors do not want to risk my being in increased pain over and above the fibromyalgia pain that has disabled me. Some patients complain that aromatase inhibitors cause them to feel old and to experience arthritic pain.

I saw these doctors yesterday. I flew home from the teaching hospital this morning. After I got home, my brother went out to pick up my Tamoxifen. I took the first pill this afternoon. My mother took Tamoxifen for about three years and had no side effects. I am going back to the teaching hospital in January for a re-excision. Unless I get a new diagnosis, I am now headed for long-term Tamoxifen therapy with deferred radiation. My cancer is in the earliest stages, and I think that diet and exercise will also play a role in keeping the cancer from returning. There may be a new standard of care but it applies to cases that are caught very early. My breast cancer was discovered between mammograms. I had a normal set of mammograms in December 2014. DCIS is not palpable. Tell your friends and family members never to delay their mammograms. If they catch the cancer at its earliest stages, they may be able to forego the terrible stress and strain of lumpectomy and six weeks of radiation or a masectomy. In my case, I was on HRT, so the doctors say the female hormones on the drugs were feeding the tumor. It must have been growing rapidly to be detectable on imaging studies in August 2015 after a normal mammogram in December 2014.

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Comments

  • percy4
    percy4 Member Posts: 13
    edited November 2015
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    Thank you for all of this info. I agree strongly about not putting off mammograms, even though their cancer detection rate is not perfect. My HMO (the best in CA) had me, AFTER age 50, on an every-two-year mammogram schedule. I did not know that most BC organizations recommend every year after age 50. It was not for me to know. THEY knew it, and did not tell me the going recommendations. When my DCIS was discovered, there was already a (thankfully) small microinvasion. So my prognosis is good. I am, however, very angry that I was not told to have yearly mammos after 50. I will never know, but if I had had yearly mammos, the DCIS may well have been found before the small invasive cancer was there. Pissed off, but it's done.

  • percy4
    percy4 Member Posts: 13
    edited November 2015
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    Again; I applaud your thorough research and your choices.

  • chisandy
    chisandy Member Posts: 11,394
    edited November 2015
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    I'm very glad that because you were given access to a major cancer treatment center, your DCIS was caught so early that you are a candidate for the newer more conservative treatment protocols. I'm sure you must have read recent news articles featuring Dr. Laura Esserman’s contention that many cases of DCIS that will never progress are currently being over-treated--analogous to how early, nonaggressive prostate cancers were overtreated 15 years ago. ACS director Dr. Otis Brawley (author of the excellent “How We Do Harm”) concurs with Esserman in part.

    I say “in part" because in order to prove Esserman correct, he warns there will have to be enough doctors willing to recommend the more conservative protocols (even close surveillance rather than excision) and enough patients willing to accept them. I salute your courage--perhaps years from now you will have been instrumental in a revolution in DCIS treatment analogous to that of prostate cancer. For most of us here on BCO, the boat's sailed for us--either because most of us have or had invasive cancers, or those with DCIS chose to treat it as aggressively as possible. I hope there's no backlash here from those patients who opted for the most drastic treatments trying to justify their decisions by decrying yours. (I am particularly grateful that women here with smaller and earlier cancers than mine who opted for mastectomy, even prophylactic bilateral, are not disdainful of those of us who chose breast conservation instead).

    Everyone who is diagnosed is a cohort of one--every case is unique, and the decision must ultimately be the patient's. I hope (and have no reason not to believe) that you are proceeding in a manner best suited to you.

  • LisaAlissa
    LisaAlissa Member Posts: 34
    edited November 2015
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    For those who are looking for a more comprehensive view of possible treatments of DCIS (including those which are at a higher level than Grade 1), consider taking a look at this thread: A layperson's guide to DCIS.

    HTH,

    LisaAlissa


  • marijen
    marijen Member Posts: 2,181
    edited November 2015
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    Decision Freak, thanks for your experience up to date. There is a question that jumps out at me - DCIS is not palpable. You had a goodmammogram in December, how did you know you had cancer after that and then later you had imaging studies. It's all very interesting. I am on Femara and had a few sides in the beginning that are hardly noticeable now. I'm glad because Femara shrunk my axillary node tumor by half in the first three months and I might be taking it for years to come. I do have stiffness that I'm working on relieving, but its just not that bad. These drugs do have a tendancy to lose efficacy in the long term. Thankfully there is a new test study published this week where they can check. I posted at the Femara topic.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015
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    Actually, the DCIS was caught and diagnosed early at a local hospital. The surgeon's nurse called me and said I had DCIS and that it would definitely turn into cancer and that I needed to rush in for re-excision within three weeks. After communicating with many breast cancer care personnel both locally and nationally and having a surgical oncologist in Virginia Beach who is top notch weigh in on my case, it became clear to me that I had plenty of time to research my options. It was highly recommended to me that I go for evaluation and treatment to a comprehensive treatment care center. If you are ambulatory and healthy enough to fly in a small plane at 5000 to 7000 feet, and if your doctor will release you for flight, then you can take a Mercy Flight to a comprehensive cancer care center within about 800 nautical miles from your home if you cannot afford a commercial flight. If you cannot fly on a commercial flight for a health reason, then Mercy Flights also known as Angel Flights in some states may waive financial eligibility requirements. So, I traveled about 200 to 250 miles to a comprehensive cancer care center.

    I am going to add a note to the beginning of this posting to ensure that readers understand that I am talking only about early stage, low level, non-invasive cancer, nothing else. I am going to also point out that my diagnosis has now been supported and verified by three sets of mammograms, one pre-surgical MRI, and two ultrasounds recently including one ultrasound at the teaching hospital that included images of my lymph nodes along with a stereotactic biopsy and path report showing concerning atypical cell growth characteristics of DCIS, an excisional biopsy with a path report and a second pathology report that validated my diagnosis of DCIS, Stage 0, Level 1.

    Many women become frightened when they hear they have breast cancer. I certainly had an initial knee jerk reaction and thought maybe I should have a double masectomy. The patient care coordinator at the local hospital and the surgical oncologist in Virginia Beach both said the standard of care is a lumpectomy plus six weeks of radiation or a mastectomy. The prospective studies that are changing the standard of care are very recent. I will try to find the citations for the three studies that have been done on this thread.

    Now, as for women who made decisions before this information became available, they should be applauded for their courage in taking the steps known to help give them a strong 10-year survival rate. No woman should be made to feel that she acted in error. Women tend to be risk averse and throw the decision in their doctor's lap. Some women may still want to choose from the two most widely accepted and widely known options - limited lumpectomy plus six weeks of radiation with the caveat that some women may qualify for a shorter course of radiation or masectomy. We have a great deal of research showing now I believe that survival rates are similar for both options. A feeling of security and safety along with a high comfort level in the decision a woman makes will surely affect her ability to cope with the uncertainties of breast cancer.

    I cannot emphasize enough that choice of treatment is highly personal and unique to the individual. I am single with no children. I have lived an amazing life filled with great challenges and great rewards, not necessarily financial rewards, but status, respect, prestige, considerable travel arouns the U.S., wonderful jobs and until recent years, very fascinating friends. I live with chronic fibromyalgia pain, and I want the most conservative treatment possible unless there is evidence that I need invasive or powerful treatments.

    What I intended to do was to tell people on this site what happened to me at a comprehensive cancer care center with world class cancer doctors who are involved in the most research and who can crunch the numbers and give me some current information. I have said before that statistics apply to populations, not individual people. In my case, there are now a pile of images and pathology reports from multiple medical facilities that confirm I have early stage, low level, non-invasive DCIS along with three studies that I think show a fairly comparable cancer recurrence rate for women similar to me with surgical excision and Tamoxifen or aromatase inhibitors and lumpectomy and six weeks of radiation and masectomy. There are also individual risk factors that most likely affect cancer recurrence rate. I plan to research these risk factors, but I believe diet and exercise may affect the progression of early stage DCIS. Body fat after menopause or maybe body weight is a known risk factor for breast cancer. Body fat helps promote higher levels of estrogen production.

    This thread is not intended to provide guidance or recommendations for any woman faced with making decisions about treatment options for DCIS. The surgeon clearly stated that DCIS comprises a wide range of malignant conditions. What is right for me may be wrong for another woman.

    As for Dr. Laura Esserman, I think it is important to understand that the media selectively report what they perceive Dr. Esserman to be saying. I think that if any one of us sat down with Dr. Esserman we would find that she would present a highly analytical rationale for her attitudes towards DCIS treatment that would clearly explain that she is not generalizing about DCIS but attempting to keep a dialogue going to spur research into this little understood condition so that we gain the best scientific understanding possible about who will benefit from various types of therapeutic and treatment interventions. For this reason, I may step into the deep waters of genetic testing. Knowledge is power.

    Still, the radiation oncologist told me there is sufficient evidence to say that the standard of care is or has changed for early stage, low level, non-invasive DCIS. My caveat is that this is a discussion to have with the best medical specialists you can find. In addition, a decision to defer radiation in my case is based on a big pile of images and path reports. The jury is still out until my second surgical excision and the path report from the tissue samples.

    I don't view myself as brave. I view myself as a woman who wanted to know all of the options possible before doing anything that may affect the rest of my life. I will certainly want to know how these cancer experts will monitor my condition long-term.

    I have no agenda or position to defend. I know less than many of you about the research literature. The rest of you can duke it out!




  • Tresjoli2
    Tresjoli2 Member Posts: 579
    edited November 2015
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    what is your her2 status? Do you know

  • melissadallas
    melissadallas Member Posts: 929
    edited November 2015
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    HER2 status is irrelevant in DCIS. It isn't offered foe DCIS

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015
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    DCIS is not palpable. I said in an earlier post on this thread that my GYN doctor sent me for a mammogram because I felt a little hard lump that felt like a piece of sand. The mammogram images did not pick up this lump, but they showed evidence of calcification in another area of the breast that may occur near a cancer site. I was immediately sent to ultrasound, and based on the images from the mammogram and the ultrasound I underwent a stereotactic biopsy that showed atypical cell growth characteristic of DCIS. I was then referred to a surgeon for an excisional biopsy to collect a larger tissue sample. Before that happened, I underwent an MRI to pinpoint the abnormal area as precisely as possible, and then I went through another set of mammograms immediately before the excisional biopsy during which time the radiologist inserted a needle with a wire attached to mark the place of surgical entry. The DCIS was discovered entirely by accident in August 2015. I had a totally normal mammogram in December 2014. The rapid change from December 2014 to August 2015 has been attributed to my elective use of hormone replacement therapy or HRT. The estrogen in the HRT was feeding the growth and multiication of the DCIS tumor.


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,961
    edited November 2015
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    Thank you decisionfreak, for well thought out and written posts. Although your treatment choices are not new, they do go against the grain, as many women choose to go as aggressive as possible. Perhaps they do this more for peace of mind than physical necessity.

    You did mention one thing that is new to me. Here's what I'm curious about;

    "...the medical team felt the scientific evidence is now sufficient to predict with some confidence the risk of breast cancer recurrence for women with my diagnosis who have the low level, non- invasive DCIS cells excised without undergoing radiation or a masectomy."

    Are there any studies that you can reference to support this? I think that not knowing if DCIS will become invasive is what spurs many women to seek aggressive treatment.

    Lastly, just for clarity, DCIS is by definition always non-invasive and always stage 0. Once it becomes invasive, it is no longer DCIS.HER2 status is only relevant to invasive bc.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015
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    I will look for the studies. If I cannot find the citations, I will ask the nurse practitioner to obtain citation information from the radiation oncologist. I keep repeating the stage and level and pointing out that this condition is non-invasive to make it very clear to people who may not have your knowledge that I am talking about the earliest stage DCIS and that it is a non-invasive form of cancer. You are surely correct in saying that when DCIS becomes invasive, then we are dealing with an entirely new diagnosis.


  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015
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    P.S. I am making an educated guess, but I don't think it is possible to know if DCIS will progress to invasive cancer. That is what the radiation oncologist told me if I understood her correctly. A woman can have a lumpectomy and six weeks of radiation and still end up with invasive cancer later at another site in her breast. I am not sure what the studies say on this topic, but you raise a very interesting question. Maybe the studies have some data on rates of invasive cancer, but I am not sure.


  • blinthedesert
    blinthedesert Member Posts: 37
    edited November 2015
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    I am very glad for you, that you were able to find a group of health professionals that you trust, and together you were able to make the decision that is best for you. I will have to point out that you have said several times that DCIS is not palpable, and this is not entirely correct. Many small DCIS areas are not palpable, but mine (and I am sure other women's as well) was diagnosed upon palpation. It was not seen on my yearly mammogram because I have dense breast tissue. Because I had a lump in my breast I was sent for a diagnostic mammogram with ultrasound - the ultrasound showed a mass, the follow-up mammogram with compression and a different view also found microcalcifications in an adjacent area.

    A couple of other points, while DCIS may be "over-treated" there have not been any clear population-based studies that have demonstrated *who* is over-treated. So, for right now it is a decision that is made between a breast cancer patient and their health-care professionals based on a persons perceived risk and benefit of treatment - this is not always clear-cut - though again, I am glad it was for you!

    Close-by, and with respect to evaluating how to measure peoples risk and help direct to appropriate treatment, while HER2 over-expression is not currently associated with treatment decisions, there is a growing body of literature suggesting that this may change in the near future. There are three clinical trials that are currently ongoing; and while results are not yet published in their entirety (as referenced in this recent publication http://www.biomedcentral.com/1471-2407/15/468 ) some preliminary results have been presented at conferences and have been well-received.

    Best wishes to you, and I am very happy that you found a good medical team!!

    (edited to ensure embedded url link worked)

  • ballet12
    ballet12 Member Posts: 66
    edited November 2015
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    Hi Decision Freak, DCIS can be palpable, athough the majority of cases are discovered on imaging. The palpable DCIS has been identified as being a risk factor for being a bit more aggressive.

    My radiation oncologist (Beryl McCormick from MSKCC) was involved in some of the follow-up studies of low grade DCIS in individuals with and without radiation. Her team found that that recurrences with surgery only did occur more frequently, but tended to occur much later (time-wise) than five years.

    As you stated so clearly, your findings and the findings of your elite team apply mainly to you, and to those with low grade DCIS. I wanted to do conservative treatment, but when I saw the pathology report from my first lumpectomy, I said, to myself "bring on the rads." I was able to do the Canadian protocol, which is a shorter duration of radiation (16 days--3 weeks) with a higher dosage at each treatment, as opposed to the traditional 25 day treatment (5 weeks).

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015
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    Okay, so I stand corrected.Thank you. My low grade DCIS was not palpable. As far as who is over-treated, I think this is complicated. I just did a literature search, but there are several thousand articles on DCIS so it will take me a day or two to read all of the research articles. I did find a population study of over 52,000 women diagnosed with DCIS that found that women with low grade DCIS who did not have surgery had a nearly identical survival rate as women with low grade DCIS who did have surgery. I think this was over a 10 year or maybe 12 year retrospective study, and the survival rate was about 98.8 and 98.6 percent with a insignificant difference statistically between the two groups. Now, were those women who did not have surgery self-selected? If so, they might have certain shared characteristics that conferred a high rate of survival such as exceptional diet and exercise habits or who know what. So who is over-treated is unknown, but this study hints at the over-treated group, those with low grade DCIS. However, there could be other characteristics of a tumor beside level and grade that would warrant aggressive treatment. This is because DCIS encompasses a spectrum and range of disease processes. I thus clearly have no knowledge of who is over-treated, but I know that so far my tumor shows few unique characteristics although I am sure if I spent a year and read all of the scientific articles I could probably find something troubling in my path report that would warrant pointed questions of the medical team.

    Remember now that I am having a re-excision with Tamoxifen therapy over a five year period. Rates of recurrence with women who had surgery for low grade DCIS plus Tamoxifen or aromatase inhibitor therapy were very low based on at least two studies, according to what the radiation oncologist told me. If I cannot locate the studies, which may not yet be published, I will try to obtain the citations.

    I saw references to the HR2 status as a potential prognostic tool for DCIS. I can't get any more specific, but I found the citation on PubMed. Somebody else brought up this topic, not me. I am glad it was mentioned. You betcha I am going to cite the article in requesting that my next tissue sample be tested.

    In reference to the elite team, well, there are a host of comprehensive cancer care centers across the U.S. These professionals evaluate and treat women from all walks of life and all socioeconomic groups. I am on Medicare, and Federally funded medical hospitals are generally or always required to provide assistance to uninsured or underinsured patients. I know that it can be difficult for a working woman or an impoverished woman with children and a husband to run off for weeks or days at a time to a distant city to get the best medical care possible. On the other hand, I believe that we can all achieve more than we imagine with humility and a good attitude. Great medical care for breast cancer is available at comprehensive cancer care centers, and financial help is usually or always available at these facilities. A sister from my church took me to and from the local airports, volunteer pilots flew me back and forth to the city where the teaching hospital was located, the hospital refuses co-pays for Medicare patients for doctor visits so my time with the medical team was no extra cost over and above my monthly Medicare payment, the ACS Hope Lodge gave me a free place to stay, and volunteers cooked dinner two nights that I stayed in the Lodge. My mother, who has metastatic breast cancer, was at my house and my brother, who has a significant physical disability took care of my mother, but he always takes care of my mom as he is the primary caregiver.

    This experience has taught me to honor my body, my mind, my spirit, and my emotional well-being. I gave to society by working for 35 years. I wanted the best care available, and I urge every woman to get the best care she can for breast cancer. I accepted charity, and I was grateful to receive it. For those of you who are on the fence, I say, go the distance if you possibly can to consult with the best doctors you can find at a teaching hospital. They want to treat you. Arm yourself with knowledge. Ask hard questions. I am not done with asking questions. I am just getting started. And, if I feel that I have made a poor decision, I will not hesitate to re-evaluate and make a mid-course correction. I have no extra economic advantage over any one else. I am however a professional writer who specialized in health and disease prevention and health promotion.

    I am disabled, but I got on the wing of two small airplanes to hoist myself into the cabin with no physical help from the pilot. If I can get this kind of help, so can many of you. The American Cancer Society gave me substantial assistance, and they are a great place to start.



  • ballet12
    ballet12 Member Posts: 66
    edited November 2015
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    Decision--You sound like an amazing person--very resourceful! And very encouraging to those who think that they might not be able to travel to NCI designated cancer centers due to financial or physical limitations.

    There were 52.000 women with DCIS who didn't have surgery? If this was a retrospective study, how did they identify the women? Based on biopsy results? I never heard of this study, so if you could find the reference, I'd love to read it.

  • Tresjoli2
    Tresjoli2 Member Posts: 579
    edited November 2015
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    it wasn't an irrelevant question. Most often her2 status is not tested or deemed clinically relevant for dcis.However, there is a growing body of evidence, as linked by an earlier poster, that shows such testing may factor in. It wasn't probable that OP was tested for her2, but it was possible. Given the center she went to, I was curious to know if this testing had been done.

  • jelson
    jelson Member Posts: 622
    edited November 2015
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    Having followed your posts, DecisionFreak - I am very glad that you pursued obtaining the quality treatment you desired and deserved. I was intrigued by the recommendation that you begin tamoxifen prior to your upcoming excision. That seems to be an important treatment recommendation and perhaps another new feature in the standard for care. I think traditionally we, who go through lumpectomy and radiation, are told to start tamoxifen when radiation ends - I know I waited a month after that! Doesn't it make more sense to prescribe tamoxifen or an AI as soon as the ER+ status is known???

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015
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    The total population was over 50,000 women including those with DCIS that did have surgery to remove the DCIS cells and those that didn't. The goal was to compare survival rates. I don't know how the DCIS was identified, but I gather there were records of the biopsies. This study was published in JAMA Surg. I was rushing through the literature but this study looked intriguing so I quickly looked at the abstract. I will find the citation and maybe you can tell us if I got the story right. One of my main roles in working as a subcontractor for National Cancer Institute and other NIH entities as well as for the Department of Health and Human services was to scan piles of research literature to extract relevant data for proposals and communications plans. I would get the gist of the idea, save the citation, and keep scanning until I got the big picture. I may not always remember all of the facts but I usually get the main findings correct. I am hampered by the fact that my 6 month old Dell computer crashed and I have been too busy to send it back to the factory for repair. Still, I will see if I can capture the citation. I am doing this research and writing these posts on a cell phone with a small on-screen keyboard.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015
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    Her2 and Op were not tested because I had my first excisional biopsy at a local hospital. I am going to talk with the nurse practitioner at the comprehensive cancer care center where the surgical oncologist will do the re-excision and ask that these tests be conducted.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015
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    Yes, I started Tamoxifen yesterday, the day after my comprehensive evaluation and treatment plan at the comprehensive cancer care center. So far, after two doses, no hot flashes. It will protect against the uptake of estrogen into the malignant cells which are highly estrogen positive. The doctors said it will also help reduce the risk of having cancer in the other breast. Given that I will be on radiation deferred status, I anticipate being on Tamoxifen for five years without radiation unless it is discovered in the second excisional biopsy that I have invasive cancer or unless a new cancer develops. Given the vast quantity of images collected and the lack of new findings in the mammograms done on Thursday, I think the doctors do not anticipate any new findings. The studies I cited that are going to change the standard of care showed that women who had excision of the DCIS cells with clear margins coupled with Tamoxifen use had a very low rate of remission. Aromatase inhibitors are also being used in tandem with DCIS tissue excision to protect against recurrence, but these drugs were not recommended for me at this time. I have noticed that a number of people on this site take a cancer drug while they are waiting to have surgical treatment or maybe surgery plus radiation. In my case, the HRT was causing rapid cell growth, and I needed to wait until after the holidays until late January until surgery, and I think the doctors wanted to make sure the tumor was not fed by excess body fat that produces estrogen. Gotta work off the fat and eat broccoli.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015
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    It seems to me to make sense to prescribe Tamoxifen or AIs immediately to protect against malignant cell proliferation. I was glad the doctors recommended it. Not all doctors suggest this option but I saw one study that I believe said that many women are willing to comply. I think if the doctor says the women must take the medication that women are more likely to comply than if the doctor simply recommends the meds. I think it went without saying yesterday that the doctors knew I had traveled 250 miles to hear and listen to what they had to say and act on any reasonable recommendations that made sense. The MO didn't ask me if I would take the Tamoxifen. She said she would call it into my local drugstore. But, then, these doctors could see that I had done my homework and that I clearly know that my health, not just my breast, is at stake.

  • marijen
    marijen Member Posts: 2,181
    edited November 2015
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    I'm thinking I may not need radiation as well, found this today if anyone interested. I haven't read it all yet. But there is a good chart here:

    http://breast-cancer.oncotypedx.com/en-US/Professional-DCIS/Resources/Publications/Health-Economics.aspx

    Thanks for bringing up the matter DecisionFreak.

    http://breast-cancer.oncotypedx.com/en-US/Professi...

  • proudtospin
    proudtospin Member Posts: 4,671
    edited November 2015
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    certainly is an interesting posting and study

    since I am way past this point, diagnosis was in 2008 and yeap did full rads and have completed 5 years of the little pill called aromasin

    I was fortunate to live in NJ where we have a ton of good hospitals and docs so I had a great surgeon and then a great team (in my opinion and that of others)

    my DCIS was considered hi grade, if I had it to do again, would still chose rads, even at my age

    best wishes

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015
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    I think it is great you may have the option to forego radiation if your doctors feel you may not need it. Just to clarify here, I am not against radiation on principle. If I need it, I won't pigheadedly refuse it. However, I will be careful who administers it. To be honest, I discovered my mother, then about 79 years old and a brilliant woman who took good care of her family, living in a filthy trailer with her younger brother in 2010. Her siblings had begged her to move near them to this mid-sized backwater town and she was paying her brother a hefty sum of money to sleep on a piece of foam rubber on the floor. Flies and roaches were eating blood from a massive radiation wound on her chest that she suffered when she had radiation therapy to treat her breast cancer sometime between 2008 and 2009. It took years for the burns to heal. I cleaned and wrapped the wound for those years. The burn re-opened recently when she started heavy duty chemo for metastatic breast cancer but it is healing quickly. This happened because the doctor was away from the office on the day of her radiation, and one of the techs played hooky. There were supposed to be two techs to handle the equipment. It goes without saying that I moved my mother as soon as possible out of her brother's trailer, and I eventually bought a very nice manufactured home where my mother could be safe and clean. My mother's radiation burn left me with a negative knee jerk reaction that is probably irrational.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015
    Options

    P.S. Thanks for the studies. Will read them.

  • Annette47
    Annette47 Member Posts: 108
    edited November 2015
    Options

    Interesting study and I’m glad you asked questions and found somewhere where they are making distinctions between different sorts of DCIS and how they should be treated.

    Given my DCIS had already begun to become invasive, and had comedo necrosis, I’m pretty comfortable with having done rads in addition to surgery and Tamoxifen, but obviously my diagnosis is quite different than yours.

    The reason I was given for waiting to take Tamoxifen until a month after rads was that they wanted to be able to differentiate between the side effects caused by rads and any caused by the Tamoxifen. Since the surgery and rads should theoretically prevent any local recurrence, the main purpose of it in my case was to protect against the almost infinitesimal although not zero chance of distant spread and more importantly (in my mind) to prevent new primaries. I think the thinking in that case is that neither of those things were likely to happen right away so there was no rush to start.

  • proudtospin
    proudtospin Member Posts: 4,671
    edited November 2015
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    I think Annette and I were in much the same situation

    I do remember as I was beginning rads that someone on a dif board said to me to watch for burning and to alert the techs if anything showed up

    I did when towards the end, it got just really a blush of pink, so the RO checked me out and they decided I was fine to finish up the few sessions remaining. They also gave me samples of cream to use for the itchies I was having

    I do know other folks who ended up with serious burns during rads and do not understand why they did not say something to the docs~

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015
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    I know why we did not say anything to my mother's radiologist. We live in a relatively small city, and we were afraid of retribution. I have never lived any place that had such a dark cloud hanging over it. I realized how much we are suffering under the yoke of secrecy and dishonesty from medical professionals and, in fact from our own family members, during and after I made my trip. I am trying to figure out if I can put my beautiful manufactured home on the market, find someone to take over the payments, and move to the city in this state where the entire family- me, my brother, and my mother - would have access to exceptional medical care. We have enjoyed the house, but it is not an investment. It will depreciate quickly while my homeowners insurance rises at a fast clip. It is a place of respite for the family. Happiness is more important to me than homeownership.I would leave in a minute if I could or can figure out a way to leverage our finances to get us out of this pit of evil.

    Some of my thinking is fueled by the belief of my cancer doctors that I am still a young woman at 60! I want to get back into the waters of life, disabled and with a breast cancer diagnosis! Now how great is that - to meet doctors who inspire you to want to grab the brass ring and keep going on the merry go round? Of course, I am also on Naltrexone, not for alcoholism but apparently to shut down some old behaviors that were ruining my life. Life is short. It deserves to be savored when possible.


  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited November 2015
    Options

    I know why we did not say anything to my mother's radiologist. We live in a relatively small city, and we were afraid of retribution. I have never lived any place that had such a dark cloud hanging over it. I realized how much we are suffering under the yoke of secrecy and dishonesty from medical professionals and, in fact from our own family members, during and after I made my trip. I am trying to figure out if I can put my beautiful manufactured home on the market, find someone to take over the payments, and move to the city in this state where the entire family- me, my brother, and my mother - would have access to exceptional medical care. We have enjoyed the house, but it is not an investment. It will depreciate quickly while my homeowners insurance rises at a fast clip. It is a place of respite for the family. Happiness is more important to me than homeownership.I would leave in a minute if I could or can figure out a way to leverage our finances to get us out of this pit of evil.

    Some of my thinking is fueled by the belief of my cancer doctors that I am still a young woman at 60! I want to get back into the waters of life, disabled and with a breast cancer diagnosis! Now how great is that - to meet doctors who inspire you to want to grab the brass ring and keep going on the merry go round? Of course, I am also on Naltrexone, not for alcoholism but apparently to shut down some old behaviors that were ruining my life. Life is short. It deserves to be savored when possible.