anyone with low grade dcis not having radiation

joe1234 · August 2007

Hi, I have dcis ,non-comedo subtype, nuclear grade 1, in left breast and ADH in right breast. Had lumpectomy in both breast to remove micro-calcifications. Had second surgery in left breast to remove more calcifications and to create a clean margin. Path. report came back ok. Was told by my breast surgeeon that she was not recommending radiation but she sent me to an oncologist. He wanted me to see a radialogist oncologist to get his opinion on the radiation treatment. After going over all of my reports I was told I didn't need the radiation. Apparently there are some cases , if the cancer is low grade, where the patient can fore go this treatment. I was told by the oncologist that if would be good for me to take tamoxifen,but that the decision was up to me. I have been doing alot of research and I decided that the risks might out weigh the bebefits in my case. I am very nervous about the side effects. I do have the perscription but have not filled it yet. Both doctors said that I could take it at a later date if necessary. I am 54 and still have not gone through menopause. I'm just interested if anyone out there is in a similiar situation and how they are doing? I am being followed very closely by my surgeon. Just went for mammo on right breast. Report said probably benign but repeat mammo in six months.I find these mammos nerve racking. My dr. said it will be like this for awhile,but reassures me that I am being closely monitored. I just hope I made the right choice. I don't know if you can ever be sure.Sometimes I wish they would just tell me I had to do the radiation.Sorry I am being so long winded. Thanks for listening to me ramble on.

lvtwoqlt · August 2007

I had ADH dx in left breast in Jan 2005, after dx went to 6 month mammo, DX ADH right breast Aug 2006, went on Tamox after 2nd dx suggested to consider preventive bi-lat mast. 6 month mammo April 07 dx with low grade DCIS right. took off Tamox, bi-lat mast June 1 with recon. Because I chose the mast I don't need radiation and no lymph involvement no chemo.

leaf · August 2007

I'm sorry you're going through these decisions. Its nervewracking.

If you post in the DCIS forum too, maybe you'd get some more people with a similar history?

I am 54, still barely premenopausal, am taking tamoxifen, but its for LCIS+ALH. The side effects for me are hot flashes, and I'm having irregular bleeding, but I had that before I started tamoxifen.

Its a very individual choice. Two women with exactly the same diagnosis and age may have different decisions.

Wishing you the best with your decisions.

goldengirlmk · October 2007

How large was your DICS??

goldengirlmk · October 2007

How large was your DCIS?? I keep hearing anything over 5mm, radiation is indicated.

Maureen

ginger2345 · October 2007

Low grade DCIS with clear margins under 5 mm may not need to be radiated. Docs do advise differently--but weight the pros and cons like you're doing and do what you feel comfortable with.

Beesie · October 2007

Yes, it's not uncommon for someone with a smallish amount of low-grade DCIS to not have radiation, if the margins after surgery are large. For women with DCIS, the NCCN guidelines (these are the guidelines supported by the American Cancer Society and the U.S. government) certainly present radiation as being an option: "If a lumpectomy is chosen, then radiation therapy to the whole breast with a boost to the site of the tumor may or may not be done depending on several factors, such as woman's age, other health problems, certain characteristics of the tumor, and the woman's preference."

http://www.nccn.org/patients/patient_gls/asp/ASP_Script_showTree/SVGAframeset.asp?pg=breast&idChart=2&bkG=

And the DCIS Info website says that "Radiation should be included following breast-conserving surgery if the DCIS has a high-grade histology, close margins, or is more than about 5/8 of an inch in size." Your DCIS was low grade, you had the additional surgery to get good margins, so if the area in your breast with DCIS was 1/2 and inch or less, then radiation is not considered necessary.

http://www.dcis.info/treatment-radiation.html

Please do check out the DCIS forum further down on this discussion board. I know you'll find other women who had a similar diagnosis to you.

sherry7 · November 2007

I had low to moderate DCIS and I had a "simple mastectomy" with tram flap recon and implant over a two year period of time. Always get more opinions if you doubt anything, look at Susan Loves Breast Book, it will help you understand the process they are putting you thru, good luck sherry

Amalija · January 2009

A mounth and a half I had vaccum biopsy - low grade DCIS, 1cm, microcaltinations less than 5mm. They said they took almost everithing out just with biopsy.

One week before I had lumpectomy - to get clear margins and to see if there is only DCIS. So, I`m very nervous, because I`m still waiting for my result but if there will be just DCIS low grade, not bigger than 1cm (0,4 inch), with clear margins not less than 1cm, than I wont need anything else. My dr. said than the risk of radiation for me is bigger than the benefits.

I`m 46.

http://www.dcis.info/understanding_risk.html

Margin Size and the Risk of Recurrence
In one study, when the DCIS was small and the margin around it was at least a little less than half an inch in size, the chance that either DCIS or invasive breast cancer would recur in that breast was 3% for women treated with lumpectomy and 4% for women treated with both lumpectomy and radiation therapy for a period of up to eight years. This shows that if the margins are sufficient there is actually very little difference; DCIS is unlikely to reoccur, even without radiation therapy.

I don`t want radiation nor Tamoxifen because of side effects. And may be I will need radiation in the future for something more serious.

barbe1958 · January 2009

I, too, won't do the chemo or rads and won't take anymore drugs! That's why I had a bilateral mastectomy.

car · January 2009

No chemo, no rads, no tamoxifen, "only" a unilateral mx. I'm comfortable w/this and trust my onc to work w/me on following up.

MarieKelly · January 2009

I had low grade IDC (60%) along with low grade DCIS (40%) in the same 1 cm tumor diagnosed at age 49. Had a lumpectomy with a large amount of tissue removed and refused tamoxifen, arimidex and radiation. My residual tumor after biopsy measured 0.7 x 0.5 x 0.6 cm and the resected amount of tissue from the lumpectomy measured 7.5 x 5.5 x 3 cm. I actually have no idea what the precise margin widths were because the only reference to them is a statement saying "The biopsy cavity is located well away from the resection margins", but I'm assuming from the size of the specimen in comparison to the size of the residual tumor that it was a considerable amount of clearance. I was diagnosed 5 years ago next month and all mammograms since have been clear. Next mammogram is due in March.

edcicu · March 2009

I had low grade DCIS, stage 0, 3.5 m and I had lumpectomy and second surgery fiften days before, and obtained a good clear margins. Today, March 20, 2009, the surgeon told me, I dont need radiation or tamoxifen.

Certy · June 2009

I had my lumpectomy for DCIS. I did have some high grade too ( I had necrosis) but my surgeon at sloan recommended no further treatment. This was back in 2005. I have been fine since.

What I have been taking is Calcium D-Glucarate, it helps with controlling the estrogen levels in your body.

mdwriter · July 2010

Posted elsewhere, but here is summary. After reading about Dr. Lagios here, I had him review my path slides after my lumpectomy June 22, 2010 with SNB which showed DCIS low-int grade, negative nodes, wide clear margins, etc- with VNPI (prognostic index developed by Dr. Mel Silverstein)of 5. He recommended No radiation and No Tamoxifen or aromatase inhibitor. He also suggested follow-up RODEO MRI which is a dedicated MRI with an algorithm that apparently gives a more specific and sensitive picture. Developed by Dr. Steve Harms in Arkansas, but there are now more machines around the country- Google Aurora RODEO MRI. Now I am waiting for my follow-up baseline mammogram (my mammo in April showed nothing), ultrasound (that's how this was picked up after my GYN felt a suspicious area in June) and MRI.

mdwriter · July 2010

This New York Times article is a must read for every woman- making the correct diagnosis of DCIS requires significant experience. Apparently a large number of women in the US are being misdiagnosed. So please, get a second or even third read of your pathology slides before deciding on a treatment plan. Here is the URL for the article: http://www.nytimes.com/2010/07/20/health/20cancer.html?_r=1&emc=eta1

FireKracker · July 2010

can someone please post the article...my computer keeps on shutting down everytime i try to read it...waiting for test results usually makes this happen...ugh.

Catherine · July 2010

I had an area of DCIS that was 6 mm. The cut-off for radiation is 5 mm, but my surgeon said "I'd skip radiation if I were you." I spoke to the radiation specialist, but said, "Since my DCIS is borderline, I choose to skip it." It's been seven years now and I am fine. I also passed on taking Tamoxifen as I had a detached retina at age 50 and that drug can cause cornea/retina problems.

Catherine

FireKracker · July 2010

im waiting for final results but as of right now i too am gonna pass on rads.

mdwriter · September 2010

Here is the NYT article: Prone to Error: Earliest Steps to Find CancerBy STEPHANIE SAULMonica Long had expected a routine appointment. But here she was sitting in her new oncologist’s office, and he was delivering deeply disturbing news.Nearly a year earlier, in 2007, a pathologist at a small hospital in Cheboygan, Mich., had found the earliest stage of breast cancer from a biopsy. Extensive surgery followed, leaving Ms. Long’s right breast missing a golf-ball-size chunk.Now she was being told the pathologist had made a mistake. Her new doctor was certain she never had the disease, called ductal carcinoma in situ, or D.C.I.S. It had all been unnecessary — the surgery, the radiation, the drugs and, worst of all, the fear.“Psychologically, it’s horrible,” Ms. Long said. “I never should have had to go through what I did.”Like most women, Ms. Long had regarded the breast biopsy as the gold standard, an infallible way to identify cancer. “I thought it was pretty cut and dried,” said Ms. Long, who is a registered nurse.As it turns out, diagnosing the earliest stage of breast cancer can be surprisingly difficult, prone to both outright error and case-by-case disagreement over whether a cluster of cells is benign or malignant, according to an examination of breast cancer cases by The New York Times.Advances in mammography and other imaging technology over the past 30 years have meant that pathologists must render opinions on ever smaller breast lesions, some the size of a few grains of salt. Discerning the difference between some benign lesions and early stage breast cancer is a particularly challenging area of pathology, according to medical records and interviews with doctors and patients.Diagnosing D.C.I.S. “is a 30-year history of confusion, differences of opinion and under- and overtreatment,” said Dr. Shahla Masood, the head of pathology at the University of Florida College of Medicine in Jacksonville. “There are studies that show that diagnosing these borderline breast lesions occasionally comes down to the flip of a coin.”There is an increasing recognition of the problems, and the federal government is now financing a nationwide study of variations in breast pathology, based on concerns that 17 percent of D.C.I.S. cases identified by a commonly used needle biopsy may be misdiagnosed. Despite this, there are no mandated diagnostic standards or requirements that pathologists performing the work have any specialized expertise, meaning that the chances of getting an accurate diagnosis vary from hospital to hospital.Dr. Linh Vi, the pathologist at Cheboygan Memorial Hospital who diagnosed D.C.I.S. in Ms. Long, was not board certified and has said he reads about 50 breast biopsies a year, far short of the experience that leading pathologists say is needed in dealing with the nuances of difficult breast cancer cases. In responding to a lawsuit brought by Ms. Long, Dr. Vi maintains that she had cancer and that two board-certified pathologists at a neighboring hospital concurred with his diagnosis.Yet several leading experts who reviewed Ms. Long’s case disagreed, with one saying flatly that her local pathologists “blew the diagnosis.”The questions that often surround D.C.I.S. diagnoses take on added significance when combined with criticism that it is both overdiagnosed and overtreated in the United States — concerns that helped fuel the recent controversy over the routine use of mammograms for women in their 40s.The United States Preventive Services Task Force, an independent panel that issues guidelines on cancer screening, found last November that the downside of routine annual mammograms for younger women might offset the benefits of early detection. The panel specifically referred to overdiagnosis of D.C.I.S., as well as benign but atypical breast lesions that left undetected would never cause problems.D.C.I.S., which is also called Stage 0 or noninvasive cancer, was a rare diagnosis before mammograms began to be widely used in the 1980s. Until then, breast pathology typically involved reading tissue from palpable lumps. The diagnoses — usually invasive cancer, a benign fibroid tumor or a cyst — were often obvious.Today, D.C.I.S. is diagnosed in more than 50,000 women a year in this country alone. The abnormal cells, which are encased in breast ducts, are removed before they develop into invasive cancer. There are estimates that if left untreated, it will turn into invasive cancer 30 percent of the time, though it could take decades in some cases.Concerned about the accuracy of breast pathology, the College of American Pathologists said it would start a voluntary certification program for pathologists who read breast tissue. Among its requirements is that the pathologists must read 250 breast cases a year.“There’s no question there’s a problem, and that’s why we’re starting this certificate program,” said Dr. James L. Connolly, director of anatomic pathology at Beth Israel Deaconess Medical Center in Boston.While the program has not started yet, it is still controversial.With hundreds of thousands of breast biopsies performed in this country a year, some pathologists stand to lose business, Dr. Connolly said, if doctors and patients demand that their slides go to a certified pathologist.Cases like Ms. Long’s may be extreme examples, but tracing her story shows why doctors increasingly say that a woman’s initial reaction to a diagnosis of D.C.I.S. should be caution rather than a rush to disfiguring surgery or potentially harmful radiation.Dr. Dennis Citrin, the oncologist at Midwestern Regional Medical Center in Zion, Ill., who told Ms. Long that she did not have D.C.I.S., said efforts to identify cancer at its earliest stages could benefit patients but also create problems.“We’re now trying to move the goal post if you like,” Dr. Citrin said. “We’re trying to make a diagnosis at an earlier and earlier stage. There are going to be patients where there’s confusion or difference of opinion in this spectrum of changes, the earlier that you move in the process. So that’s why there are cases like Monica’s.”‘Shock and Disbelief’Tiny Cheboygan Memorial Hospital, a 46-bed facility in rural northern Michigan, is far from any major cancer center. Its patients are mostly elderly and suffering from cardiovascular problems and diabetes. Monica Long helped take care of them, working as a nurse on the night shift.In March 2007, Ms. Long, then 49, went for her annual mammogram, which showed a shadow of about one centimeter in her right breast.A biopsy followed and the results were sent to Dr. Vi, the only pathologist at Cheboygan and, in fact, in the entire county. Dr. Vi had started at Cheboygan in 2003 after a journey that began with medical school in Vietnam, where he grew up.He ran the hospital’s pathology department even though he had not passed either part of the exam to become board certified until 2008, a year after he gave Ms. Long her diagnosis. In a deposition, Dr. Vi said he had taken one portion of the test “several times” before passing, but he did not remember how many.Of the hundreds of thousands of breast biopsies that are performed every year in the United States, many are conducted in community hospitals. Like Dr. Vi, many general pathologists in small practices do not have extensive exposure to D.C.I.S. and other atypical breast lesions.Just over a week after Ms. Long’s biopsy, the pathology report from Dr. Vi came back as ductal carcinoma in situ.“I was in shock and disbelief,” said Ms. Long, a whippet-thin workout fanatic and divorced mother of three daughters. “Everybody thinks it’s not going to happen to you. Then I got kind of scared. You hear the word cancer. When people are told you have cancer, I swear they look at you differently.”Ms. Long was given two options: a mastectomy or a procedure called a quadrantectomy — removal of one-fourth of the breast — followed by six weeks of radiation.“I decided to do the quadrantectomy, and hope for the best,” she said.Before Ms. Long’s surgery, Dr. Vi sent her slides for a second opinion to pathologists at Northern Michigan Regional Hospital in the larger nearby town of Petoskey, Mich. In a brief interview, Dr. Vi characterized D.C.I.S. diagnosis as a “gray zone” and declined to comment on the Long case.The Petoskey practice — including a board-certified pathologist named Dr. Noel Ceniza — was already fielding complaints from another patient, Barbara Stachak.In 2005, Dr. Ceniza reported that Ms. Stachak’s biopsy contained cells consistent with breast cancer, prompting a chain of events that led to the removal of a large portion of Ms. Stachak’s breast.After that surgery and further testing, Dr. Ceniza revised the diagnosis to a less serious finding. “I just felt so violated,” Ms. Stachak said recently. She lost a lawsuit against Dr. Ceniza in 2009, after his lawyer argued that he had not departed from the standard of care.When the Petoskey pathologists got Ms. Long’s slides, they partly disagreed with Dr. Vi.He had found two forms of D.C.I.S., called solid and cribriform. In solid D.C.I.S., cancer cells completely fill the affected ducts. In cribriform, there are gaps between the cells.Dr. Ceniza and a partner instead found another form of the disease, in which the cells are arranged in a fern-like pattern.A lawyer for Ms. Long, Brian McKeen of Detroit, said that Dr. Vi “could easily have sent the slides to any number of known and notable breast pathology specialists for a second opinion.”Asked in a deposition why he did not send Ms. Long’s slides to a breast specialist, Dr. Vi hinted at financial constraints. When a pathologist sends out a slide for consultation, the hospital, not the patient, is frequently billed. The Petoskey doctors had agreed to provide free consultations.In a statement, lawyers for the Petoskey doctors denied that there was any malpractice in Ms. Long’s treatment, citing reports in medical literature of a “wide array of variability” in interpreting breast pathology. “It is not a breach of the standard of care for one pathologist to have one opinion and another competent pathologist to have another opinion,” the lawyers said.In June, six weeks after her surgery — the removal of one-fourth of her breast — Ms. Long began radiation treatments.Misdiagnoses IdentifiedIn 2006, Susan G. Komen for the Cure, an influential breast cancer survivors’ organization, released a startling study. It estimated that in 90,000 cases, women who receive a diagnosis of D.C.I.S. or invasive breast cancer either did not have the disease or their pathologist made another error that resulted in incorrect treatment.After the Komen report, the College of American Pathologists announced several steps to improve breast cancer diagnosis, including the certification program for pathologists.For the medical community, the Komen findings were not surprising, since the risk of misdiagnosis had been widely written about in medical literature. One study in 2002, by doctors at Northwestern University Medical Center, reviewed the pathology in 340 breast cancer cases and found that 7.8 percent of them had errors serious enough to change plans for surgery.Yet some pathologists have found the response to these types of studies slow and inadequate.“To recognize the problem requires you to acknowledge that there’s room for improvement and that some of your colleagues are not really making the correct diagnosis,” said Dr. Michael Lagios, a California pathologist who was a consultant on the Komen report.To diagnose a breast cancer, pathologists look at slides mounted with thin slices of breast tissue. The slides are stained with a purplish dye that highlights patterns of circles and dots, each representing a cell, its nucleus and membrane. The diagnosis turns on the appearance of these cells under a microscope.At larger hospitals, the findings are often presented to a tumor board, in which a team of doctors from various disciplines reviews the pathology report and develops a treatment plan.A number of pathology practices around the country also specialize in rendering second opinions.Dr. Lagios, a pathologist at St. Mary’s Medical Center in San Francisco, reviews slides for women who want a second opinion. And what he finds concerns him.In 2007 and 2008, he reviewed 597 breast cases and found discrepancies in 141 of them, including 27 cases where D.C.I.S. was misdiagnosed. Dr. Lagios says that based on his experience, microscopic core needle biopsies of low-grade D.C.I.S. and benign lesions, called atypical ductal hyperplasia, or A.D.H., may be misread 20 percent of the time.Beyond diagnostic errors, there are different schools of thought about what constitutes D.C.I.S. Variations in diagnoses may depend partly on where a woman is treated.In San Francisco, Dr. Lagios uses a criterion that says some breast lesions under two millimeters are not D.C.I.S., even if they have the other markers of the condition.At Beth Israel Deaconess Medical Center in Boston, also renowned for its breast pathology services, those lesions are considered D.C.I.S., according to Dr. Connolly.Dr. Lagios says he frequently talks to patients who are struggling to make sense of several different opinions.“This leaves the woman totally confused,” he said.Response and RegretFear compounds the confusion, and even though D.C.I.S. is 90 percent curable, there is growing concern that women and their doctors opt for more aggressive surgery, radiation and drug therapy than is needed.A mastectomy is sometimes offered as an option for D.C.I.S., although experts say it is usually not advisable unless the D.C.I.S. is large or appears in several sites in the breast.Yet more women who are faced with the diagnosis of D.C.I.S. become so fearful that they elect to have both breasts removed, often against their doctor’s recommendations.“The patient gets paralyzed with a fear of cancer,” Dr. Masood said. “They want the breast off.”Among women who had surgery for D.C.I.S., the rate of double mastectomy rose to 5 percent in 2005, from 2 percent in 1998, according to a study last year.Dr. Ira J. Bleiweiss, chief of surgical pathology at Mount Sinai Medical Center in New York, said that ideally, all breast cancer diagnoses would be referred for a second opinion. He warns patients and their doctors: “Don’t rush to the operating room.”That is just what Stacie Hintz did after a diagnosis of D.C.I.S. in Colorado Springs in 2004. After both her breasts were removed, she was told that her initial pathology — which found an aggressive type of D.C.I.S. — was incorrect.“I was pretty scared at the time,” said Ms. Hintz, who cares for disabled adults. “My daughter was 2 years old. The state of mind that I was in was saying, ‘I need to live to raise my daughter — just do what you need to do.’ “Ms. Hintz later moved to Denver and, like Ms. Long, sought follow-up care at a larger facility, the University of Colorado Health Sciences Center, according to her lawyer, Linda Chalat.To manage her case, doctors at the University of Colorado asked for slides from her previous doctors. Several weeks later, Ms. Hintz received a letter from her new doctors.“It said we’ve reviewed these slides and we’ve found no cancer,” she said. “I’m standing there, in shock.”Ms. Hintz later reached a settlement with the pathology group that had given her the diagnosis.Dr. Masood says that since there is no mechanism for reporting errors, some women find out by accident that their diagnoses were wrong.An exception is Janice Fenwick, a retired asset manager for the Marines, who was told she had D.C.I.S. in April 2009. That summer, after she had a partial mastectomy and began radiation treatment, the V.A. Medical Center in West Palm Beach, Fla., told her the diagnosis was incorrect, Ms. Fenwick said.In her case, though, there are questions whether that notification could have come sooner.After the surgery, both a Quest Diagnostics laboratory and the Armed Forces Institute of Pathology in Washington were unable to find any cancer in the portion of her breast that had been removed, she said.As early as June 9 — before Ms. Fenwick began radiation — the Armed Forces Institute of Pathology asked to see the slides from the original biopsy, according to information she obtained.Ms. Fenwick said she had completed two-thirds of her radiation treatments by the time she received a telephone call from her oncologist. “We have troubling news to tell you,” her oncologist said. “You don’t have cancer and you never did.”The institute disputed the original diagnosis, conducted at the West Palm Beach V.A. Medical Center, she said. “I was kind of beside myself.”Ms. Fenwick, 50, said a V.A. official later apologized and said the agency would look into using outside experts for breast biopsies because the hospital did not treat many breast cancer cases. Sean Cronin, a lawyer representing Ms. Fenwick in a lawsuit against the V.A., said he was troubled that she had received radiation even after questions were raised about her diagnosis.The hospital would not comment on Ms. Fenwick’s case. Its director, Charleen R. Szabo, said in a statement: “Medicine is not an exact science. Treatment options are based on information available at a period in time. When additional information comes to light, altering the course of treatment may become necessary.”A Nurse Is a PatientJust as the course of history can turn on minor events, Monica Long’s life — and her status as a cancer patient — was altered by a high school reunion.She rekindled an old flirtation at the gathering, then followed her new beau to Illinois from Michigan, where she went to work as a nurse at the Midwestern Regional Medical Center.As an employee at the hospital, a division of Cancer Treatment Centers of America, Ms. Long decided to follow up her breast care with Dr. Citrin.Following hospital policy for new patients, doctors reviewed her pathology and saw no evidence of D.C.I.S. For confirmation, they sent the slides to the Mayo Clinic, which also found a benign condition.When Ms. Long appeared in Dr. Citrin’s office two days later, he told her about the findings.“What makes you right and them wrong?” Ms. Long demanded.Dr. Lagios, retained as a plaintiff’s expert by Ms. Long, also found the lesion to be benign.In fact, a pathology expert hired by the defense agreed, but said the misdiagnosis was reasonable, given the difficult nature of this area of pathology.Since her surgery, Ms. Long has struggled with a range of emotions — relief, anger and guilt.As a nurse in a cancer hospital, she encounters many people who are caught in the disease’s maw. Ms. Long says they provide constant reminders of how fortunate she is.Yet, there is another reminder every time she takes a shower — the disfiguring results of her surgery.“I think you could handle the disfigurement a little bit more if there’s a real purpose for it,” Ms. Long said. “The tough part is to find out later that I didn’t need it, and I never did.” Shayla Harris contributed reporting.

teresap989 · September 2010

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__________________
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Beesie · September 2010

Ah yes, a newbie who happens to be promoting a movies on-line website. Give me a break! SPAM!! Ladies, let's get rid of this crap.

Lissa123 · November 2011

Joe,

I also had low grade DCIS in the margins where the biopsy removed a well contained small tubular carcinoma of 3.7mm grade I. the dilemma now is whether i should have radiotherapy or not. my fear is that if you have radiotherapy the breast will form some scars and if you need to have a mastectomy at a later stage you won't be able to have an implant whereas with no radiotherapy you still have all your options in case of local recurrence because the breast tissue has not been damaged. i panicked, started radiotherapy but did only six then pulled out. i am also taking tamoxifen but so far no side effects apart that i am losing weight

Chickenpants · November 2011

I have 2.5 mm DCIS plus LCIS, but as far as I know, my surgeon said it's not likely that I will have to have radiation. The LCIS, they won't treat anyhow, besides, it's all out with clean margins. I'm having a breast MRI today and they'll know more. If it's all contained and my MRI is clear, then my choice is the watchful waiting club because of my orginal ADH or the preventative double mastectomy.

Decisions, decisions.....

Lisa75 · December 2011

I have grade 2 DCIS and my surgeon only recommended lumpectomy. no rads or tamoxifen. yet....we are waiting for my MRI which I will have done next week. I was a little surprised considering everything I had read that radiation just naturally came with lumpectomy.

Jenn67 · January 2012

Interesting article. I too had a false positive pathology report. Mine was a little different though. In August 2011, I had a ultra-sound guided core Bx done after my mamomgram showed and questionable grey area. Durring the Bx, the radiologist said more than once the mass that was presenting on the screen did not look like a cancerous lesion. However, she moved forward with taking 4 core Bx specimens. About 10 days later I got the call that I had IDC. After many tears and sleepless nights, I decided to have a Lumpectomy and hope for clear margins and nodes. About 10 days later my surgen called and told me that the pathology from my lumpectomy was back and to his surprise I did not have IDC. It was a false positive. But I did have low grade DCIS. I live in a large city was being treated at a well respected teaching hospital with a state of the art cancer center. Even though a lumpectomy is standard treatment for DCIS, what if I had chosen to do a Bi Lat masectomy? Not to mention that a sentinal node Bx would have been unnessary with a Dx of DCIS. Dont get me wrong...I am greatfull for the early detection and thankful I chose to be more conservative with surgery. Getting a second opinion never crossed my mind, but moving forward, I will always request one. My surgen and I both agreed to send out my surgical pathology for a second opinion, just to be sure my Dx of DCIS is the correct Dx beyond a resonable doubt.

Jo5 · February 2012

Hi i had a lumpectomy Dec 2 2011 5cm DCIS stage 0 with ADH. Margins clear by 1 mm recommended for a re-excision then radiation then Tamoxifin. Had MRI needed additional targeted sonogram and three month follow-up opposite breast Oncologist recommended bil mx . . Had bil mastectomies in Jan 2012 NO reconstruction. No family history first family member of about 30 girls All lymph nodes are negative. i didn't have the wait and see option wouldn't be able to do the 3 month 6 month follow ups. I went back to work after 2 weeks but i feel physical therapy is very necessary. No lymph edema but not easy to raise arms freely and have some chest numbness still very early.

MMulder · December 2012

I am leaning toward not having radiation or taking tamoxifen. Very nervous about it. I meet with the radiation oncologist on Jan. 8th. Up until this point I couldn't even read anything about breast cancer. My husband has read and researched for a few months now almost constantly. Based on his research and many talks about the risks of both the above, I believe I won't do it. Any thoughts based on my diagnosis?

Beesie · December 2012

MMulder, it is becoming more and more common for women with low grade DCIS to refuse rads. Officially the treatment guidelines still suggest rads but for those who have a small area of low grade DCIS, the risk of recurrence is often low enough that some women are now opting to pass on rads.

There's been a lot of discussion about this in the DCIS forum. Here are some threads that you may find helpful:

Topic: No radiation?

Topic: Refusing radiation treatments?

Topic: DCIS lumpectomy without radiation?

BLinthedesert · December 2012

It is a personal decision, to forgo treatment, unfortunately, without any clear-cut answers. Current guidelines are for all women who decide to have a lumpectomy to have radiation recommended.

Furthermore, there is no validated procedure to actually define what the actual recurrence risk is for a person with small, low grade DCIS. I was just discussing radiation with another woman here who actually is being treated at Memorial Sloane Kettering (in New York). One of her doctors is one of the authors of the DCIS nomogram (the reference to the paper is on the website http://nomograms.mskcc.org/Breast/DuctalCarcinomaInSituRecurrencePage.aspx). It is her BS/MO/RO thought that all women that choose lumpectomy benefit from radiation (50% reduction in reccurence risk); this information is based on an ongoing randomized clincial trial: http://www.ascopost.com/issues/august-15-2012/improving-outcomes-and-prediction-in-ductal-carcinoma-in-situ.aspx. On the opposite coast, is Dr. Silverstein, who co-authored a paper that described the Van Nuys Prognostic Index (VNPI :http://en.wikibooks.org/wiki/Radiation_Oncology/Breast/DCIS/Van_Nuys), and he is of the thought that small, low grade disease with clean margins does not benefit from radiation; unfortunately, the VNPI has not been sucessfully validated (no one outside of Silversteins group has been able duplicate the original papers results, probably because it relies heavily on pathologic precision that most pathologists don't do -- e.g., look at every slice of tissue and define the size of the tumor precisely - mainly because many times DCIS is multifocal and there is not clear standard procedures about how size is calculated in this instance - and definitions of "clean" margins are not always well-defined -- e.g., some pathologists consider ADH in the margin to be "not clean").

I know the decision-making process is horrible, and no matter what you decide I wish you all the best. From my perspective, radiation is not horrible, the side effects were minimal (for me) and 6 months out I am healthy and feeling good about my future prospects!

Good luck.

Thora · December 2012

I was dx with Non invasive DCIS.Stage 0.I was told by my doctors I didn't need chemo or radiation.The tumor was 1/2 centimenter.I was put on tamoxifen but was hesitant.Been on it for 3 years.2 more to go.Now I read where they have people taking it for 10 years.I might since my friend was Stage 3 bc and took tamox and another pill years ago to keep her cancer from coming back.She took them for 10 years.She is a 18 year survivor.I've had some scares and that worries me.Also a big family history.Mom at 21 lived 60 years. niece at 30 (7 year survivor), me at 62 a 3 1/2 year survivor and just July of 2012 my sister is dx and had a doubles masectomy.her cancer was in both breasts.

anyone with low grade dcis not having radiation

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