Why the “Standard of Care” Must Change

do no harmDespite clear evidence from the most extensive study to date on DCIS — that there is no benefit to surgery, radiation and drugs (“standard of care” treatment for DCIS) — and despite significant harms of these treatments — doctors will most likely not be making any protocol changes.

During a KPBS interview, Dr Reema Batra, stated the “standard of care” will not change. Women will still be offered lumpectomy plus weeks of radiation or mastectomy when diagnosed with DCIS.

Whatever Happened to Doctors Following the Hippocratic Oath — “First do no harm?”

A NY Times article asks, “is there any reason for most patients with the diagnosis of DCIS to receive brutal therapies?”

ABC’s Good Morning America stated, “The study which followed 100,000 women for 20 years showed that these painful and risky procedures may be UNNECESSARY.”

DCIS is Not Cancer and Should Not Be Treated as Cancer

Dr. Esserman is one of a growing number of experts calling for change regarding the standard treatments for DCIS. She says, “DCIS is not a lethal condition. You are not going to die of it. So it’s important to know that you don’t have to do more than you need.”  In an editorial regarding the latest study, Dr. Esserman states: “Given the low breast cancer mortality risk, we should stop telling women that DCIS is an emergency and that they should schedule definitive surgery within 2 weeks of diagnosis. The sum total of the data on DCIS to date now suggest that:

  1. Much of DCIS should be considered a “risk factor” for invasive breast cancer and an opportunity for targeted prevention.

  2. Radiation therapy should not be routinely offered after lumpectomy for DCIS lesions that are not high risk because it does not affect mortality.

  3. Low- and intermediate-grade DCIS does not need to be a target for screening or early detection.

  4. We should continue to better understand the biological characteristics of the highest-risk DCIS (large, high grade, hormone receptor negative, HER2 positive, especially in very young and African American women) and test targeted approaches to reduce death from breast cancer.”

In a previous CNN article, Dr. Esserman stated, “DCIS is not cancer, yet because the word “carcinoma” is used in the label, it often creates panic. To sit across from my patient and see her in a state of complete misery and anxiety once again brought into focus so clearly why it is important to be able to distinguish the variation in this disease. Why should she have to suffer the emotional trauma of thinking she has a fatal disease if that is most likely not the case? Why should she be subjected to invasive procedures unnecessarily? It is heartbreaking to see a woman — and I have seen it many times — go through this turmoil when the ability to ease her worries, without compromising her health, could be in our grasp.”

Need for More Studies

Dr. Shelley Hwang of Duke University is working on creating an “Active Surveillance” study. In a recent Elle Magazine article, she states how previous thinking about DCIS is “wrong” and why she has been working hard for more than a decade to “stop the freight train of overtreatment for DCIS.”

Surgeons and oncologists interviewed in recent news reports such as this San Diego Union Tribune article say this kind of study — one that randomly assigns women surgical treatment or active surveillance — is the key to understanding more about DCIS.

But until such a study is completed, standard protocol will not change. Doctors will use this “need for more studies” as the excuse to continue their over-treatment protocols.

What Women Today Need to Know if Diagnosed with DCIS

DCIS is massively over-treated. Over-treatment equals extreme harm physically, emotionally, spiritually and financially.  Today, women must decide for themselves if they will go along with the “standard of care” because it is “policy” or if they will educate themselves, get more precise information on their individual case and make treatment and lifestyle decisions based on facts not fear.

Support and Resources 

Please take the time to investigate options and learn as much as you can before rushing into aggressive treatments.  There is great wisdom and support for you here:

DCIS — Beyond “One-Size Fits-All”

DCIS Integrative Support & Empowerment (Facebook Group)

DCIS Redefined: Dilemmas, Choices & Integrative Solutions

Proactive Breast Health Club

Donna’s Choice: Global Healing From The Inside Out (Facebook Group)

 

Posted in Health | Tagged , , , , , , , , , , , , , , , , , | 13 Comments

ACTIVE SURVEILLANCE — DO YOU WISH YOU WOULD HAVE HAD THIS AS A TREATMENT OPTION?

i wishSome doctors are studying whether Active Surveillance (following you closely and not operating on you unless you get cancer) may be a good alternative to surgery for DCIS.  Do you wish you were offered Active Surveillance as a treatment option after being diagnosed with DCIS from a biopsy? If you had the same diagnosis today and active surveillance was offered, would you choose this and would you be willing to participate in a 2 year study? How often would you want to be screened by mammogram? Do you have any other thoughts or concerns about Active Surveillance? Please share your ideas with us by leaving a reply below! Thank you!!
Posted in Health | Tagged , , , | 26 Comments

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

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

Posted in Health | Leave a comment

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:

Posted in Health, Options, Personal Stories, Resources, Sanity, Support | Tagged , , , , , , , , , , , , , | 19 Comments

Interview with Donna: The Dilemma of Overdiagnosis

Best DonnaDSC_0163Click here to listen to a very important discussion/interview regarding my experiences with DCIS, the problem with mammograms and the “Dilemma of Over-diagnosis.”

Thank you Connie Bowman for shining the light on this very important topic on your podcast “HAPPY HEALTHY YOU”!

Posted in Health | Tagged , , , , , , , , , | 3 Comments

Radio Interview with Donna Pinto: “Listening to Your Inner Guidance”

kathleen-150Have a listen to my interview today with Kathleen O’Keefe-Kanavos (Kat), author of “Surviving Cancerland: Intuitive Aspects of Healing.”  Click here.

Check out Kat’s  website here.

Posted in Health | Tagged , , , , , | Leave a comment

Listen to My Phone Consultation with Dr. Michael Lagios

michael_lagios_md_portrait_2It was November 3, 2011 when I had a phone consultation with Dr. Michael D. Lagios, a nationally recognized breast pathologist and medical director of The Breast Cancer Consultation Service. As I wrote about in “Donna’s Journey,” the information I learned from Dr. Lagios gave me tremendous peace of mind (being that he downgraded the DCIS removed from my breast from intermediate grade to low grade). At the same time, I was totally shocked and in disbelief at the options he was telling me I had.

I recently listened back to the recording and I asked Dr. Lagios if he would be okay with me sharing it — so that other women may benefit from my questions and his answers.

I am as grateful now to him as I was then. Here is our 43 minute discussion of his review of my pathology slides, his recommended course of action for me and his perspectives on tamoxifen (which can also be found on his website here.)

Thank you Dr. Lagios for all you do to help women make the most informed decisions regarding an extremely challenging situation.

For more information on Dr. Lagios, visit his website:

The Breast Cancer Consultation Service is designed to provide self-referred women with newly diagnosed breast carcinomas, both invasive and in situ and/or atypical hyperplasias or atypia with a formal written review of their pathology slides, mammograms and other imaging studies. No physician referral or permission is needed to access the service.

The Breast Cancer Consultation Service provides:

  • A review of your actual pathology slides, original mammograms and localization studies, breast ultrasound, specimen radiograms and breast MRI images.
  • A second opinion regarding your pathologic diagnosis with an evaluation of your treatment options and their likely benefit.
  • A formal report prepared for you and your designated physicians
  • A 45-minute discussion of the findings, either in person or via telephone conference call for you, your support people, and designated physicians, if you desire.
The goal of the service is a thorough review of the original diagnostic materials, not just existing written documents, and to provide the patient with unbiased information with which she can make an educated choice of therapy.

Dr. Michael D. Lagios, a nationally recognized breast pathologist and medical director of The Breast Cancer Consultation Service, provides the service and personally discusses the findings with you. He has directed this and similar services in San Francisco since 1980. Dr Lagios is an internationally recognized expert on duct carcinoma in situ and has written or co-authored much of the pertinent literature in this area over the last 30 years.

Posted in Health | Tagged , , , , , | 8 Comments
%d bloggers like this: