DCIS is NOT a “Ticking Time Bomb” — What Women Really Need to Know

time bombCelebrity chef Sandra Lee was told by her doctors she was “a ticking time bomb.”

Is it any wonder that she and thousands of women like her are racing to the operating room to amputate both their breasts?

Why such radical treatment for DCIS?

“Right now, we have women getting bilateral mastectomies for ductal carcinoma in situ (DCIS), which is not a cancer,” Otis Brawley, chief medical officer of the American Cancer Society, said. “It’s the world turned upside down.”

“There’s a hysteria around breast cancer. The extremism that sometimes comes into play in DCIS treatment decision making is a ‘cultural problem.’ This is not a life-threatening problem.” – Dr. Anne Partridge, MD, MPH, Dana-Farber Cancer Institute

Experts are working to remove the word “CARCINOMA.”

“Use of the term ‘cancer’ should be reserved for describing lesions with a reasonable likelihood of lethal progression if left untreated.” DCIS is not such a lesion, according to a report issued by a National Cancer Institute working group.  A less threatening term they suggest is “indolent lesion of an epithelial origin.”

“DCIS is not invasive cancer so why are we treating it as if it is?”– Dr. Laura Esserman, Director of the Carol Franc Buck Breast Care Center, UCSF

Debunking the theory that DCIS is early cancer destined to progress.

Even though more than 60,000 new DCIS cases are being treated each year (in the US alone), there has been no corresponding decrease in the rate of invasive breast cancer. This suggests that there has been little or no value in treating DCIS as if it were early cancer, according to Laura Esserman, co-author of an essay published in the Journal of the American Medical Association which made a forceful case for the name change and for a less aggressive approach toward treating DCIS.

Early detection does NOT save lives.  

Studies have proven the fundamental philosophy behind “early detection” is flawed. Not only do mammograms harm thousands of lives every year, they miss 20-25% of the really serious invasive cancers. Joan Lunden’s aggressive cancer was missed by a mammogram. It was found on an ultrasound.

What is causing OVER-diagnosis and OVER-treatment of DCIS?

A study in Norway estimates that 15 – 25 % of breast cancers found by mammograms wouldn’t have caused any problems during a woman’s lifetime, but these tumors were being treated anyway, often by being surgically removed and sometimes treated with radiation or chemotherapy, (because there’s no certain way to figure out which ones may be dangerous and which are harmless).

Yet still, Sandra Lee stated in People Magazine, “My doctor called me a poster girl for mammography.” Now she is urging women as young as in their 20’s and 30’s to get their mammograms.

What Sandra Lee doesn’t realize… 

Her life was not saved by a mammogram. Her life was harmed by it.

Young women especially need to be cautious.

Young women tend to have dense breast tissue. Mammograms are harmful — not beneficial. Routine mammograms in young women also increase the risk for future breast cancer due to direct radiation exposure to breast tissue. For young women who have a high risk of breast cancer because of genetic mutations, the radiation from yearly mammograms may make the risk even higher.

Radical treatments, fear, anxiety and financial hardship — all for what?

“We are curing people who don’t need to be cured,” Dr. Otis W. Brawley, chief medical officer of the American Cancer Society, told WebMD.

Women like Sandra Lee are “battling” something that doesn’t need to be battled.  She is a poster girl for “over-diagnoses” and “over-treatment” — treated for breast cancer unnecessarily — as explained in a NY Times article Cancer Survivor or Victim of Overdiagnosis.

Mammograms open a can of worms that is often better left unopened.

Too many women like Sandra Lee are facing harsh choices — to chop off their breasts — or to live in fear of a “ticking time bomb.”  Once diagnosed with DCIS, women are paralyzed with this fear — and the choices given to them are inappropriately aggressive, harmful and costly. The alternative to mastectomy — a lumpectomy plus several weeks of daily radiation — also comes with harms, future worries, on-going surveillance and a high rate of failure.

DCIS surgery (lumpectomies) often FAIL — leading to multiple surgeries and mastectomies.  

Studies have shown 48% to 59% of women with DCIS surgery require a 2nd or 3rd surgery due to “positive margins.”  It is a problem inherent in the current DCIS treatment methodology — and ineffective lumpectomies are leading more and more women with DCIS (even low grade) to lose their breasts. “Although DCIS can be initially diagnosed with micro-calcifications on a mammogram, the calcifications do not outline the whole area of involvement. There is no imaging tool that can tell the surgeon how much DCIS is present before the surgery, and a surgeon cannot see it or feel for it during the surgery.”  – Dr. Susan Love

More harms that women are left in the dark about. 

Prior to an open biopsy or lumpectomy, a procedure called wire localization is required in order to “guide” a surgeon in what in essence is a “blind surgery.” A wire is pierced through a women’s breast then the breast is smashed and radiated in a mammogram machine.  This procedure is painful, ineffective, harmful and barbaric. One does not need to have a medical degree to realize this is damaging to sensitive breast tissue. And the real frustrating part is it is a total failure 48 – 59% of the time (as stated above)!

Harms of radiation and tamoxifen are downplayed while benefits are exaggerated.

Imagine being told that after you have these invasive procedures and surgeries (which often fail), you will need 5-7 weeks of daily radiation therapy plus five years of a highly toxic drug called tamoxifen — both of which Dr. Michael Lagios, internationally recognized breast pathologist says are of little benefit. “It is understandable that patients would be confused by the information and misinformation, but the fact remains that radiation therapy for DCIS has a limited role, and that tamoxifen has no certain role at all.”

Radiation therapy and tamoxifen are carcinogenic, meaning they can cause cancer. In addition, they both have harmful side-effects, create severe psychological trauma, financial hardship and can increase mortality! Yet, these are one-size-fits-all “standard of care” treatments  for DCIS.

The treatment of DCIS is unacceptable. 

“The time is now to discuss a change in the approach to DCIS. We should be demanding change.” – Dr. Laura Esserman

No doctor should tell a woman that she is a “ticking time bomb.” 

If at any time you (or someone you know) feels pressured, rushed, bullied, or coerced to have aggressive treatment for DCIS, please reach out for support (see Facebook groups below).

Women deserve better.

As Dr. Esserman stated, women need to demand change. The only way to do this is by being fully informed.

Here are 10 #beWISE tips for women to avoid excessive, costly, invasive physical treatments and traumatic emotional harm:

1. Mammograms contribute to the radical over-treatment of DCIS.

2. DCIS is NOT invasive cancer and 70-80% may be harmless. Read more here.

3. “DCIS is not an emergency. It’s something that creates an environment where cancer may arise over the next 10-20 years, yet patients are being told they need surgery in the next fortnight.” -Dr. Laura Esserman, Director of the UCSF Breast Care Center

4. Women do not need to amputate their breasts! If you are told your only option is a mastectomy, Dr. Melvin Silverstein and other surgeons offer oncoplastic techniques with lumpectomies.

5. A 2nd pathology opinion from an expert pathologist is a must. Listen to my phone consultation with Dr. Michael Lagios. A 2nd opinion can change the course of treatment and bring peace of mind with challenging decisions.

6. DCIS is heterogeneous in nature. Treatment should not be “one-size-fits-all” — it must be individualized. “DCIS — Beyond One Size Fits All” provides valuable resources.

7.  Active surveillance is a reasonable option for low grade DCIS. 

8.  In addition to SonoCine Automated Whole Breast UltrasoundDedicated breast MRI is a highly accurate and useful surveillance tool, especially for DCIS.  It’s 1% false negative rate means there is only a 1% chance that it will miss invasive cancer compared to whole body MRI with a 15% false negative rate.

9. Life-style strategies can increase breast health and reduce breast cancer risk or recurrence. Join the Proactive Breast Health Club and receive periodic articles.

10. Support is vital.  Just a few years ago, DCIS support groups were nonexistent (especially for women questioning the “standard of care.”) Today, thanks to the internet and Facebook, hundreds of women world-wide are connecting and sharing experiences, emotions and insights. Topics include both conventional and “alternative” treatments, surveillance, healing foods, supplements, stress reduction and healthy life-style habits. Please click the links and “join” the Facebook groups below:

About Donna Pinto

I was born and raised in New Jersey and moved to the San Fernando Valley of Los Angeles when I was 12. I graduated with a BA in Journalism/Advertising from San Diego State University. After a short stint in magazine ad sales in LA, I was offered my dream job working for Club Med. I spent two years working at resorts in Mexico, The Bahamas, The Dominican Republic and Colorado. My husband Glenn & I met while working at Club Med in Ixtapa, Mexico. We returned to "real life/jobs" for three years before we embarked on a two year honeymoon around the world. Together we wrote a book called "When The Travel Bug Bites: Creative Ways to Earn, Save and Stay Abroad." I am also the author of "Cheatnotes on Life: Lessons From The Classroom of Life," a quote book for new graduates. Becoming a mom changed my life and I was fortunate to work part-time from home with many amazing nonprofits. In 2010, a DCIS diagnosis inspired me to an investigation that culminated in creating DCIS 411 and Give Wellness.
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19 Responses to DCIS is NOT a “Ticking Time Bomb” — What Women Really Need to Know

  1. Janet says:

    Thank you for all of this wonderful information I too had been told I was a ticking time bomb with low to intermediate DCIS. The first time was back in 1999 I had two surgeries and radiation for 6 weeks with follow up mammograms for 13 years. I was diagnosed again in the same breast different area with the same type of DCIS given the same urgency and ended up with a mastectomy and immediate reconstruction. The real tragedy is that the mastectomy showed no residual DCIS. So all of this suffering for microscopic cells. Have enjoyed the information on DCIS redefined and have decided to change my whole outlook on future screenings. I will not have anymore mammograms and have been altering my diet getting a good night sleep exercising more and maintaining a healthy weight. This will do 10 times more for me than a mammogram ever would .

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  2. informedconsent2014 says:

    This is a great, concise post and I’m sure very welcomed by not only women who are aware of your wonderful site but also to newcomers. I have been so angered and horrified by the Sandra Lee “ticking time bomb” nonsense. Also, the way her doctors described her as a “poster girl” for screening. As is so aptly stated, she is a poster girl for overdiagnosis and overtreatment! If nothing else, Ms. Lee should have made the point, in no uncertain terms, that her case is her case and that other women have many options based on their medical case and situation. The fact that neither she nor her doctors chose to put out responsible and logical remarks in the media is further proof that women are still being inundated with fear and panic tactics. This must stop and we are in the forefront of seeing to it that it WILL stop.

    I’ll be going in for yet another six month mammogram follow-up in June for a small grouping of microcalcs that were found in 2011 which I have refused to have biopsied. The pressure is being raised on me to have the biopsy which is the first step in the overtreatment insanity. I will keep you updated on what happens in June. I hope to impress on my doctor that this is MY body, MY choice, and I am not a ticking time bomb!

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    • dp4peace says:

      Thanks for your comments — wonderfully stated my friend “informedconsent2014!” It is so irresponsible and so illogical, but actually shows the reality of what is really going on. So, in a way I am grateful. It is the epitome of all that is WRONG! And it has refueled me to speak out! I basically stopped my life this last week to address this issue! Good luck with your next Dr. visit/mammogram. I too refused to biopsy an area of calcifications that were labeled 3 years ago as “indefinite.” I have been monitoring with dedicated breast MRI annually and all has been clear. Best to live life as healthy as we can and take things as they come. No need to think the worst and “what if….” Take care and please keep us all posted! 🙂 Donna

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    • Leslie says:

      How are you feeling now? I walked away from treatment. I did do biopsy that shows DCIS low grade 12/21/18. MRI in February (found a second small lump in right breast and 2 questionable areas in my left breast . Ultrasound in March could not find the second lump they found through MRI and now they didn’t care about my left breast (which they state they would just watch my left breast). When they wanted a MRI biopsy’s only on my right breast and more mammograms I walked. No more mammograms. No more guiding! Thank you!

      Like

      • dp4peace says:

        It’s amazing how “they” want to biopsy or cut into tissue even when it does not show on imaging! Have you looked into SonoCine Automated Ultrasound? I wrote about it and for me it feels like the best way for me to monitor without the false alarms, overdiagnosis, and overtreatment that mammography caused.

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  3. Gaylyn Bicking says:

    I did the whole thing. I had a lumpectomy and radiation. Now I may have thyroid cancer. Apparently thyroid cancer is more common in women who have had radiation. At least thyroid cancer is highly treatable. Still it could be avoided.

    Like

    • Dan says:

      I work for the truth about cancer. Please contact me if you would like to summit some of your content to us. We had over a million people to our website during our launch and have a passionate audience of about 65 percent women.We are exposing the corruption in the cancer industry. the truth needs to get out! if you want to be a part of it please let me know. Dan@thetruthaboutcancer.com

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  4. gpinto64 says:

    Great article! Love the conciseness and the wonderful references to the true experts in the field that most people don’t know of but need to hear from. I am sure this article will give 1000’s of woman alternative options to the many difficult decisions they will face.

    Like

  5. gpinto64 says:

    Great article! Love the conciseness and the wonderful references to the true experts in the field that most people don’t know of but need to hear from. I am sure this article will give 1000’s of woman alternative options to the many difficult decisions they will face.

    Like

  6. DCIS can be designated as cancer or non cancer; there is no sense of this debate. DCIS is an early sign of defective estrogen signaling and the associated disturbance of genome stability. Its appearance is a message that the patient is endangered not only by the development of invasive cancer, but also by any other serious human diseases, such as diabetes, stroke, thromboembolism, cancers at several sites etc. Currently used aggressive therapies (mastectomy, radiation, chemotherapy and antiestrogen) are equally harmful against DCIS and advanced breast cancer. However, waiting and strict mammographic observation of DCIS is senseless. The causal therapy of DCIS is the improvement of hormonal and metabolic equilibrium of patients, estrogen signaling in particular. Moreover, improvement of insulin sensitivity, thyroid hormone synthesis, and vitamin D supplementation are very important. Natural compounds, such as ganoderma lucidum may upregulate the mediators of DNA stabilization and via this pathway strengthen the estrogen signaling as well. Either DCIS or breast cancer is curable with natural therapy!
    Suba Z. Causal therapy of breast cancer irrelevant of age, tumor stage and ER-status. DOI: http://dx.doi.org/10.2174/1574892811666160415160211

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  7. Madeleine says:

    I think it’s time for a call on arms against unnecessary DCIS procedures.
    Eight years ago I had a strange lump that turned out to be a cyst. It was removed using ultrasound technology and didn’t cause any further trouble. Three months ago I discovered another similar lump and requested an ultrasound to check, and possibly remove, what I suspected was another cyst. Despite cysts only being visible using painless ultrasounds, I was told I would have to have a ‘regular’ mammogram as I’m over 50. The lump I had found was indeed a cyst and it, and several others were removed (again using ultrasound).
    However, while the cysts were removed, the radiologist walked in and informed me micro-calcifications were found. As these could indicate cancer, I was told I would have to undergo a vacuum biopsy to determine the malignancy of the cells.
    A rather painful procedure followed and three days later I was informed I would have to undergo surgery as ‘stage 1 and stage 2’ cells had been found. During every following talk with medical staff every question I had, was answered with “the procedure requires” or “guidelines say”.
    I went into hospital feeling fit and healthy and came out feeling miserable and in pain. Three weeks later I’m still in daily pain, and, despite having had only two lymph nodes removed during the “standard sentinel node procedure”, with swelling in my arm. The surgeon was pleased with her handiwork, stated the wound was healing nicely and that I needn’t worry as the edema might take two months to be absorped by my body. She added I would require the full course of radiotherapy as a precautionary procedure.
    During this whole process, NOBODY in the medical team even wanted to consider waiting. On the contrary, staff used the words “tumor” and “preliminary cancer”. When I asked my oncologist whether surgery could wait until another mammogram in half a year’s time had shown increased growth, I was told that would not be smart as the cells had been shown to be malignant and surgery and radiotherapy was required.
    As a lay person in a busy job and a sole earner, my main worry is to hold on to my job and provide for and look after my family. I felt I should go with the medical advice given, which was confirmed on all the websites of hospitals and cancer organisations I consulted.
    It is only now, after regretting the surgery because of the side-effects, that I started scouring ng the internet with search words “dcis unnecessary treatment” that I have found your website and others that do ask and answer the questions I had pre-surgery.
    Most importantly: DCIS is NOT a tumor, nor is it a cancer. Surgery and radiotherapy are preventive measures. Waiting IS an option and women should be given this information before being subjected to standard procedures.
    If you have to live with the consequences and side-effects of medical treatment, especially preventive treatment, you deserve to be fully informed of what they are and be taken seriously if you decide not to submit to a routine procedure.

    Like

    • dp4peace says:

      I am so sorry that you had this awful experience…your story is exactly why I made this website. Women are being scared and rushed into very invasive and highly damaging treatments…and it is the presentation and communication (and lack of information/options) that is really wrong. Only by all of US (who have been through similar experiences) sharing our experiences and speaking out about how wrong it is will it ever STOP. So thank you for taking the time to share your experience here on this site. I hope more women share their experiences and I hope more women see this BEFORE undergoing all the procedures and even BEFORE undergoing routine screening mammograms. I am wondering about the fact that they stated ‘stage 1 and stage 2’ cells??? With DCIS, it is “GRADE” not stage. This would be highly confusing to someone who has not know the difference between DCIS and invasive cancer. The fact that they are using cancer terminology is wrong and it exacerbates fear. But of course it makes it easier for them to convince women to follow their “expert” guidelines, standard treatments and protocols. Over-selling benefits without informing of risks, harms and actual real life-saving statistic of any procedure (including mammograms) is criminal. Medical professionals must give women ALL the information (not just their bias or guidelines) and let women decide what they want to do to reduce their risk from dying from breast cancer — or anything else for that matter. Women are more likely to die from surgery, radiation and drugs than having their life saved. 😦 Donna

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      • “Women are more likely to die from extended surgery, radiation and chemotherapy than having their life saved.” These aggressive therapeutic methods are medical mistakes. Suba Z. Causal therapy of breast cancer irrelevant of age, tumor stage and ER-status. DOI: http://dx.doi.org/10.2174/1574892811666160415160211

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      • Mike says:

        My wife recently had a lumpectomy to remove a noninvasive DCIS. Surgical margins show negative for in situ carcinoma and excised tissue showed negative for invasive carcinoma(diagnosed as microcalcifications). Now she is supposed to have another surgery to remove more tissue due to positive margins. My wife feels this is not needed since the tissue and marginal tissue showed negative. She is 73 and healthy for her age group and takes no medicine.The doctor wants to follow that with radiation and tamoxifen, which she also doesn’t want. She would rather take a wait and see approach with a 6-month mammogram. Is this approach better? And,no,I don’t see a reply as medical advice, just an opinion. I feel, like my wife, that the cure is worse than the disease. Thank you for listening.

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  8. Robert says:

    Like Mike above my wife had a lumpectomy two weeks ago with the following results. Tumor size 3mm, DCIS in SITU, Grade I (low) non-invasive, no necrosis, margins uninvolved by DCIS 10 mm. We have been researching this in regards to post operative treatment and have come across the VNPI study. The doctors we have spoken to are backing the standard treatment of radiation and tamoxifen and don’t bend when it appears that this may not be necessary in my wife’s case. We got the name of Dr. Michael Lagios who might be able to advise us on a consulting basis which would include the criteria in the VNPI study however he has stopped taking new patients as of April this year. Would anyone be able to advise another doctor who would be able to advise us on treatment including the non-radiation and non-tamoxifen options? It is so difficult to understand all of your options when the majority of the medical field will only stick to what they consider to be the standard practice. Thank you in advance for any assistance you can supply.

    Like

    • dp4peace says:

      Hi Robert. Sorry I did not see your comment until now. Dr. Lagios’s recommendation for 2nd opinion is here Dr. Jean Simpson. Link is in “DCIS: Beyond One Size Fits All” — put in search function or go to blog and scroll backwards. Also check out DCISionRT

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