Women’s Wellness Retreat

This retreat is funded in part by donations to DCIS 411 and give wellness. Thank you to all who have supported and continue to support these nonprofit projects.

Plant-based food and wellness activities are complementary to all retreat guests. See agenda above by clicking on it. Sample plant-based food recipes are here.

Retreat will take place at my new home in San Diego (see photo of backyard below).

Please email me for information about accommodation and other details:

Email Donna: dp4peace@yahoo.com

Subject line: Wellness Retreat

~ Namaste ~

Donna Pinto

Founder of DCIS 411 and give wellness

A reporter recently asked me: “What kind of response have you had from other women?

My reply: ††

The greatest response over the last nine years has been the many wonderful women I have helped and have developed deep friendships with.

These women have become like family to me.”

Posted in Health | 4 Comments

DCIS Support — Find Your Tribe on Facebook!

There are five distinctly different “DCIS support groups” on Facebook. Some have strict rules. Differing viewpoints have led to heated debates and frustrations.

Hopefully everyone can find a support tribe they most align with. Some may feel they benefit from joining more than one group.

Below are perspectives and descriptions of  differing DCIS Facebook “support groups”:

DCIS Integrative Support & Empowerment

Common topics, perspectives, posts and discussions:

  • DCIS is NOT one condition and should not be thought of or treated like invasive cancer
  • Women need to take time to gather as much information about their particular kind of DCIS and not feel rushed into aggressive “cancer” treatments
  • “Standard of care” (surgery, radiation and drugs) is questioned and challenged
  • Screening for breast cancer should include information about harms (excessive biopsies, fears and anxiety; DCIS overdiagnosis and overtreatment)
  • Insights and resources are often shared about the latest medical research, risk assessment tests, clinical trials, and imaging options
  • Active Surveillance PLUS (monitoring PLUS holistic strategies for cancer prevention, risk reduction and natural healing)
  • Open to anyone interested in supporting women with DCIS  (even men!)

Group Description: “You are invited to join this group because you share in the values and spirit of compassion, respect, intuition, wisdom, kindness, encouragement, positivity, upliftment, openness, friendship, mentorship, inclusiveness, peace, love, truth, justice, health, happiness and optimal wellness.

You share in the dismay of DCIS over-detection, over-diagnosis, over-treatment, injustice, deception, hype, criticism, shame, blame, guilt, fear, righteousness, judgement, negativity and bullying of any kind.”

DCIS Support Group

Common topics, perspectives, posts and discussions:

  • “Standard of care” conventional treatments for DCIS
  • Single and double mastectomies, reconstruction, lumpectomies, radiation, endocrine therapies, biopsies, surveillance and treatment side effects
  • High grade / high risk DCIS
  • Micro-invasion/invasive cancer found in surgery
  • DCIS referred to as a “ticking time bomb”

*** Women have been banned from the group for linking to “alternative” resources, and discussing or linking to articles about mammography harms such as overdiagnosis and overtreatment of DCIS

From the Admin:

“We tend to lean (hard) toward conventional medicine, and research based on scientific method. Woo, purely anecdotal evidence, and denial of the malignancy of DCIS are not things that are a good fit. We are open to (and love) complementary treatments, and the expanded options available to women – but also believe in protecting the 20% of women whose biopsy diagnosed DCIS ends up being re-staged as invasive cancer, after surgical pathology. We run the gamut of treatment choices, and try to be respectful – but we also are very vocal about the tendency of DCIS to be a slippery stinker of a disease.”

Group Description: “Female-only group who have or have had DCIS (Ductal Carcinoma in Situ). Since DCIS is a noninvasive cancer, women who deal with it often suffer severe losses and physical/emotional symptoms but may feel guilty for classifying themselves with other cancer survivors.

IMPORTANT: We message everyone who makes a request to join. For security reasons, we have made it a requirement of the group that anyone who is admitted must first reply to our message with a brief description of her DCIS experience.”

THE ALTERNATIVE DCIS BREAST CANCER GROUP

Common topics, perspectives, posts and discussions:

  • Strictly alternative healing protocols
  • Angela, the founder of the group shares MRI images of her large DCIS reducing utilizing alternative strategies and no surgery
  • Not open to discussing any conventional treatments or medical interventions

Group Description: “More and more women daily are being diagnosed with DCIS – (Ductal Carcinoma In Situ) a form of Non Invasive Breast Cancer – treated in most cases more aggressively than some Invasive Cancers – this Cancer was completely unknown to me before diagnosis in October 2013. My Journey and life with DCIS high grade and non invasive with no family history – which is why I have chosen to treat myself solely with diet, good nutrition, immune building, other therapies and lifestyle changes. In doing so I have vastly improved my overall health, lost weight & have reduced my Breast Cancer in the process from 7.4cm to 5.4cm in 9 months….. My Oncologist is now very intrigued and is working with me to hopefully help prevent the prescribed Mastectomy…. This group is for those people who wish to follow my journey and discuss along the way the possible alternative routes I am taking – maybe helping them before or after surgery to fight Cancer and build up their immune systems….. I am not a Dr nor am I a qualified nutritionist, just someone who has worked previously in the health sector and has certain knowledge and beliefs that are proving successful. For me it is the only way forward and am very excited to share my experiences –  the results so far are over 4 MRI’s last June 2014 – future MRI now scheduled 6 months not 3.” – December 2014 Angela Holden-Davies

DCIS Non invasive Breast Cancer Group

Group Description: I am starting this group to meet other people who have been diagnosed with Ductal Carcinoma In situ the earliest form of Breast Cancer! At 41 I was diagnosed with DCIS in January 2013! I had a bilateral Mastectomy in March 2013 and am now going through reconstruction! I am looking for people who have gone through this same type of Breast Cancer to join my group!!

High Grade Negative DCIS Support Group

Group Description: “High grade DCIS means negative for progesterone and estrogen breast cancer. This is the PUBLIC page. For the PRIVATE DISCUSSION group page for women with this exact diagnosis please go to High Grade Negative Support Group Discussion on Facebook”

Posted in Health, Options, Personal Stories, Resources, Sanity, Support | Tagged , , , , , , , , , , , , , , , | Leave a comment

NO Informed Consent — Harmed by 5 Titanium Clips in Breast — DCIS Patient Shares Her Story and Advocacy

by Lisa Nash

(Presented at the State House in Boston to Senators and legislative staff):

Hello, my name is Lisa Nash and I am here to speak with you about An Act Promoting Patient Engagement in Health Care Decisions.

I have personally had an experience where I was uninformed about my options and suffered serious medical, financial and very personal consequences as a result.

In 2006, I was diagnosed with DCIS, an early stage breast cancer and consulted with a very prominent Boston hospital for treatment options. I met with a variety of doctors including oncologists, radiologist and surgeons regarding my treatment options before scheduling surgery for a lumpectomy. Being a member of the Health Care for All Consumer Counsel in addition to my previous knowledge and experiences with the health care system, I researched my medical condition and believed I was an informed consumer, asking all of the “right” questions.

Six months later, upon receiving a follow up mammogram, I was completely shocked to learn that 5 titanium clips were left in my breast as “markers.”

In spite of my educated and very intelligent questions during my consultation with the various specialists at the Breast Center, I was not informed or even asked if I would want or approve of the clips being placed and left in my breast. In fact, the topic of leaving a foreign body, never mind 5 of them, in my breast was never discussed at all. When I brought this to my surgeon’s attention, I was told that the standard operating procedure of this particular hospital is to leave the clips in all lumpectomy patients and to not discuss it with them.

I requested that a follow up surgery be scheduled as soon as possible to remove the clips which had been causing severe itching and pain. The good news was that at least I knew what was causing the itching and discomfort after six months of uncertainty. The bad news was that my surgeon would not remove them nor would she admit that my symptoms could be caused by the clips. With much research, I found that other hospitals do not use them at all and found a hospital that was aware of patients complaining of itching and allergic reactions to titanium clips and were willing to remove them. The surgery to remove them was not as easy as planned. First, I had to endure the placement of 5 needle localization wires which was extremely painful, bordering on barbaric. Then after the surgery, I developed a hematoma, which is internal bleeding, that triggered a 2nd trip to the operating room for emergency surgery to locate and stop the bleeding. After an overnight stay, I was sent home to recover, bruised from neck to hip from the pooling of blood.

Long-term, this series of events has left me with an extremely disfigured breast that I will have to live with for the rest of my life.

If this bill were in effect before my surgery, I would have been informed and asked if I wanted titanium clips placed in my breast. I would have had the opportunity to discuss my long list of allergies to various substances and I could have expressed my wishes to not have anything foreign object left in my body. I would have been part of the decision making about my body.

I have since attempted to work with this hospital with the assistance of HCFA to get their standard procedure changed and to have all lumpectomy patients informed of the use of titanium clips used as “markers” but was completely rejected. I was told that it would take too much time to discuss this topic with patients regarding possible titanium reactions.

If this bill were passed, the issue of taking too much time would be resolved and patients would have the opportunity to understand and discuss all of the details of their condition.

We each have one and only one body to sustain us through our lives and therefore should be included and part of any decisions around what goes in it and what surgically is implanted in it.

Please remember my story when this bill comes to your attention. Remember my face and the pain and suffering I have endured for it could be you or one of your family member. Thank you.

Summary of Lisa’s Story in her own words:

My Family History

My Mom and Aunt died of Breast Cancer in the 1990’s – different types completely unrelated. Testing for BRCA was not available then. Both had multiple surgeries and radiation. Both died within 1 year of each other.

Medical Advice

Advice from Dr. Susan Love, my Mom and Aunt’s doctor: Be Diligent with mammograms to catch anything early so I religiously got my yearly mammograms for 15 years – from the age of 29 – 44.

Micro-Calcifications

  • 2007 yearly mammogram finds cluster of microscopic calcifications in my left breast
  • I get a biopsy
  • I get the phone call from the pathologist who tells me the dreaded words

YOU HAVE CANCER

Doctor’s Appointments

I meet with breast surgeon and team of other doctors

I strongly explain my beliefs and wishes:

– I will NOT get Chemo

– I will NOT get Radiation

– I WILL get a lumpectomy

– I WILL treat with Alternative Therapies but NOT Traditional 

Lumpectomy

I have the lumpectomy surgery

Pathology results find: • NO CANCER! • NO ABNORMALITIES AT ALL!

Totally NORMAL breast tissue!! Was the biopsy a False positive? 

But…You Have Cancer

  • Radiologist pushes for 4 weeks of whole breast radiation
  • Radiologist tells me, “YOU HAVE CANCER” and
  • “You have young children who NEED you” and
  • “YOU MUST GET RADIATION TO SAVE YOUR LIFE”

My Response:

  • My pathology report shows no abnormalities or cancer
  • False Positive, perhaps?
  • If I were to get an invasive cancer and I get whole breast radiation now, I will not be able to get radiation in this breast again, so why would I radiate now and not save the “big guns” for when or if I really need them?

Oncologist

  • Oncologist agrees that the pathology does not show any evidence of breast cancer
  • Still Recommends Standard Breast Cancer Protocol:
    • 5 years treatment with Tamoxifen
    • continued mammography every 6 months
    • yearly follow up with pancreatic cancer specialist
    • genetic testing

What about…

  • The possibility of a false positive?
  • Waiting and watching?

6 months of Itchy

  • My left breast feels extremely itchy and uncomfortable and does not improve with time
  • I can’t sleep on my left side
  • I wake up with scratch marks on my left breast
  • SOMETHING IS NOT RIGHT!

Mammogram provides answers

  • Shows 5 titanium clips in my left breast
  • Placed in my breast by my breast surgeon without my informed consent
  • Used as “markers” for radiation
  • Didn’t I express my personal choices clearly?
  • Didn’t I say I would NOT be getting any radiation?

No Discussion – No Informed Consent

  • Why did the doctor feel it was OK to put something in my body without a discussion, never mind 5 items?

Breast Surgeon’s response

  • My breast surgeon admits to placing 5 titanium clips in my breast without discussing with me that this is Standard operating procedure for lumpectomy patients
  • I was ”too upset” to understand
  • She “knew better” than I about what was “right” for me
  • She would absolutely NOT be removing them and NO breast surgeon will remove them
  • I should see a therapist as there is NO POSSIBLE WAY I am having any reaction to the clips

I research

  • And research
  • And research
  • And…

Find 100% Hypoallergenic Titanium Jewelry

  • The puzzle pieces all fit together after I buy some Lia Sophia 100% Hypoallergenic Titanium Jewelry and fall asleep with it on
  • My ears and neck are all red and inflamed
  • If my ears and neck are red and inflamed from 1 day of having titanium touch my body, what does the inside of my left breast look like?

Dana Farber Cancer Institute

  • I contact Dana Farber: 5 out of 8 of their breast surgeons believe in titanium reactions and are willing to see me to remove them
  • NONE of the 8 breast surgeons at Dana use clips due to the “known issues”
  • Why doesn’t this information get communicated 2 blocks down the street to Beth Israel Hospital?

Clip Removal Surgery Prep

  • Barbaric – 5 needle localizations to determine location of clips
  • I am told to walk to the pre-op with 5 wires sticking out of my breast
  • There has to be a better way?!!

Surgery & More Emergency Surgery in one day

  • I develop a gigantic hematoma in the recovery room
  • My left breast begins to swell to the size of a watermelon
  • Bleeding internally
  • Rushed back to OR to stop bleeding
  • Spend the night in the hospital
  • Bruised like a blood blister from neck to hip

Did I have a false positive and have all of these surgeries been unnecessary?

Traditional Chinese Medicine (TCM)

  • I see my TCM Acupuncturist who starts me on a custom herbal tea and acupuncture treatments
  • My pre treatment bloodwork shows low levels of T & B Cells
  • 1 month later follow up bloodwork shows my T & B Cells have tripled

Where has the bruise gone?

  • 10 day follow up with Breast Surgeon
  • My bruising is completely healed
  • It should have taken over 6 months to heal
  • Breast Surgeon questions:

– “What else are you doing alternative?”–Why did my body heal so fast? 

Support…Finally

  • I share with my breast surgeon my TCM treatments
  • She knows who my acupuncturist is and SUPPORTS my decision to treat alternatively with him
  • She tells me to do everything he suggests
  • But…she finds a very very small amount of DCIS in the pathology results

My Options

  • She tells me that she HAS to tell me that my options are surgery and tamoxifen
  • She tells me that she never wants to operate on my breast again
  • She tells me that she continues to support my decision to watch and wait
  • I will follow her anywhere she goes to get her support

Dented and misshaped left breast

  • Surgery to remove the clips takes out more tissue than the lumpectomy resulting in:

– A very large difference in breast sizes–A big dent in my left breast 

Follow my Breast Surgeon

  • My breast surgeon leaves Dana Farber to head the Department of Breast Surgery at JFK Hospital in South Florida
  • She respects and supports my decision to treat my body using a holistic alternative means not the traditional Western approach to treating DCIS
  • She respects ME as a human being
  • She is my Partner in decision making
  • She Supports ME and my decisions about my body

I learn that…

  • DCIS is NOT breast cancer
  • Therefore DCIS should not be treated the same as Invasive breast cancer
  • Watching and waiting is OK
  • DCIS may or may not become an invasive breast cancer
  • Yearly Thermography and/or Ultrasound instead of Mammograms
  • Mammograms probably caused my DCIS
  • Now, 12 years later, there is PROOF that what I thought and did was RIGHT

If I knew then what I know now

  • I would NEVER have gotten the lumpectomy
  • I would have watched and waited
  • I would NOT have a deformed left breast to remind me daily that I was maimed by the medical system
  • I would have never allowed the medical professionals to push me into a state of fear of dying of breast cancer like my Mom and Aunt when there was ZERO evidence to support it

I hope others can learn from my hard, painful, lessons and prevent what happened to me from happening to any other woman ever again. Overdiagnosis and Overtreatment caused me harm that can never be undone.



Posted in Health, Personal Stories | 12 Comments

Donna’s 9 Year Update — Top 3 Questions, Lessons Learned, and 2019 Projects

Pinto Family_Nov 2017

2019

Aug 2010_Ross wedding

2010

If not for photos with my children…

I would not believe it’s been nine years since my journey with DCIS began.

question mark redTOP 3 QUESTIONS I AM OFTEN ASKED

1. Did I ever have a recurrence of DCIS or invasive cancer?   

NO!

Donna’s Journey starting at Part 2June 2011 details my experience with “residual” low grade DCIS. This was explained to me here: Listen to My Phone Consultation with Dr. Michael Lagios.

see-it2.  What do I do for follow-up imaging ?

See my post: Bye-Bye Mammograms: Hello SonoCiné Ultrasound

bodymindspiritsoul3.  What diet and lifestyle did I initially follow?

Everything is listed in Holistic Health

TOP 3 LESSONS LEARNED

  1. Trust your intuition.
  2. One size does not fit all.
  3. Support is vital.

BeWiseGraphicMY 2019 PASSION PROJECT

#Be WISE — Women Informed Supported Empowered — is an educational campaign to counterbalance misperceptions, confusion, and fears around “early detection” of breast cancer and DCIS.

MY WORK AS A PATIENT ADVOCATE

I am headed to London this week for Cancer Research UK’s Grand Challenge 2nd Annual Summit bringing together seven funded teams — one of which is PRECISION (PREvent ductal Carcinoma In Situ Invasive Overtreatment Now). Here is a short video about PRECISION:

It is truly an honor to work with physicians, researchers, and patient advocates from around the world on two major research projects — COMET and PRECISION — dedicated to solving the DCIS dilemma.

thumbnailprecision team london 2018

WHY THIS RESEARCH IS NEEDED

The over-treatment controversy made mainstream news in 2015 after results from a large study showed “no survival benefit” for treating DCIS with surgery. Good Morning America featured a powerful segment — ‘Stage Zero’ Breast Cancer: New Study Casts Doubt on Early Intervention.

KPBS_TV_Aug 24_2015I was invited on KPBS to share my story along with a medical oncologist.

Dr. Reema Batra stated, “Clinical practice would not change — until there is evidence from a randomized prospective clinical trial which compares the usual treatment (immediate surgery) to active surveillance.”

Without a study of this nature, Dr. Batra said she would continue to recommend the same aggressive treatments for all women diagnosed with DCIS.

GRATEFUL FOR MAJOR MEDIA…

Is Stage Zero Breast Cancer Really Cancer? Women Share Their Doubts

 

Is Stage Zero breast cancer really cancer? 7 ON YOUR SIDE investigates the controversy

womens-health‘Why I Refused to Get Treatment When I Was Diagnosed

 

 

#Be WELL #Be WISE!

 

 

Posted in Health, Options, Personal Stories, Research, Resources, Sanity, Support | Tagged , , , , , , , , , | 5 Comments

Thankful for PCORI & Patient-Centered Research

I recently had the opportunity to attend the annual meeting of  PCORI — Patient-Centered Outcomes Research Institute.

Three days of presentations and panel discussions all focused on one recurring theme:

Patient voices, preferences, values, experiences, and outcomes matter.

I felt like I was in patient advocate heaven.

Suzannah Fox, former Chief Technology Officer of the U.S. Department of Health and Human Services, led the audience through “The Natural History of a New Idea,” also known as Crazy. Crazy Crazy. Obvious.

  1. Outright wacko.
    “This is worthless nonsense.”
  2. Odd but unproven.
    “This is an interesting, but perverse, point of view.”
  3. True but trivial.
    “This may be correct, but it is quite unimportant.”
  4. Obvious.
    “What’s new? This is what we’ve said all along.”

I smiled… thinking about how this related to my personal experiences with DCIS.

In 2010, it was “crazy” to question the aggressive “standard-of-care” treatments for low-risk DCIS.

“Cancer is cancer!” women argued.

“Less is more” — even for low-risk DCIS — was often labeled “controversial” in the media.

But newer research began to tell a different story.

It became obvious that not all DCIS is the same — and maybe not all DCIS needed to be aggressively treated.

“Studies have shown 70-80% of DCIS may never become invasive breast cancer even when DCIS is left untreated.  Many breast cancer doctors and researchers now believe that low-risk DCIS is being over-treated. They also suggest that these women may have the same excellent outcomes with close monitoring, also known as “active surveillance.”

Fast forward to 2016…

PCORI awards $13.4 million in funding for  The Comet Study, the first randomized clinical trial in the U.S. to compare “active surveillance” to surgery for low-risk DCIS.

Some COMET Study Team members

This funding allows researchers, patients, physicians, and advocates to work together towards finding the scientific answers needed about low-risk DCIS.

PRECISION Team, London, 2018

COMET, along with LORIS in the UK and LORD in the Netherlands, is also part of a global research project called PRECISION (PREvent ductal Carcinoma In Situ Invasive Overtreatment Now).

Researchers are tackling the question…

“When is cancer not really cancer?

The goal is to find out whether bio-markers can accurately and reliably distinguish between women with DCIS who will likely develop breast cancer and should be treated, and those who can safely avoid treatment and life-long side effects.

Thank you PCORI for funding the COMET Study and so many more important research projects that are helping to change the culture of health-care!

(PCORI) is a nonprofit organization authorized by Congress to fund studies that help patients and those who care for them make better-informed healthcare choices.

Check out PCORI’s Research Done Differently

Posted in Health, Options, Personal Stories, Research, Resources, Sanity, Support | Tagged , , , , , , , , , , , , , , , , , , | 1 Comment

What is “Low-risk” DCIS & Why is The COMET Study Urgently Needed?

comet new logoThe COMET Study is the nation’s first prospective, randomized clinical trial aimed at resolving an ongoing debate about the best way to manage “low-risk” DCIS (Ductal Carcinoma In Situ), also known as “stage zero” breast cancer.

otis-brawley-potraits-5x7-2016-e1504618558598.jpg“This is a trial whose time has come. Many of us have felt for two decades that this study needed to be done, but we needed to get doctors and patients to the right point emotionally where it could go forward.” – Otis Brawley, chief medical officer of the American Cancer Society. Waiting and watching with ‘Stage 0’ breast cancer put to nationwide test

comet_3

Some members of the COMET team

The COMET team hopes the study will show that active surveillance is equally as safe and effective as surgery for women with low-risk DCIS.

“The same kind of active surveillance approach is taken in prostate, thyroid, and other slow-growing, non-invasive cancer types.” – Ann Partridge, COMET co-principal investigator, MD, MPH, Medical Oncologist, Dana-Farber Cancer Institute

70349_thompson“Our study is designed to answer: Does every woman need an operation for a condition that’s non-fatal? What are the patient concerns, outcomes, and issues that arise from having DCIS? And finally how do women make their decisions for treatment?” – Alastair M. Thompson, COMET co-principal investigator , MD, Professor, Breast Surgical Oncology, University of Texas MD Anderson

“Without evidence from the COMET Study, physicians and patients will never learn if Active Surveillance is a reasonable and safe option. Given that low-risk DCIS is not life-threatening, we believe this study will help women make confident, informed treatment decisions that align with their personal preferences.” –  COMET Patient Leadership Team (PLT): Desiree Basila, Donna Pinto, Deborah Collyar, Liz Frank

deanna“It is important to recognize that lack of surgery does not mean no care – ‘active surveillance’ is now an accepted management strategy for some cases of low grade prostate cancer. Our treatments come with real long term side effects and toxicity. The COMET study is a step in the right direction to help determine which patients may safely avoid aggressive treatment.” – Deanna J. Attai, M.D., Assistant Clinical Professor of Surgery at the David Geffen School of Medicine at UCLA and COMET Stakeholder Advisory Board member.

In this video, Dr. Shelley Hwang and patient advocate Donna Pinto discuss physician and patient perspectives about DCIS and why the COMET Study is important:

What is COMET?

The COMET Study was awarded $13.4 million in funding from the Patient-Centered Outcomes Research Institute (PCORI), an independent, nonprofit organization authorized by Congress in 2010 to support research that enlightens health care decisions.

COMET stands for Comparison of Operative to Monitoring and Endocrine Therapy for low-risk ductal carcinoma in situ (DCIS).

The study is currently enrolling patients newly diagnosed with low-risk DCIS at 100 cancer centers throughout the U.S. Nine hundred women will be randomized to receive one of two treatment approaches:

  1. Current standard of care (surgery, radiation and/or endocrine therapy)
  2. Careful monitoring (Active Surveillance) with mammograms every 6 months and physical exams every 12 months. Endocrine therapy is optional.

Why is the COMET Study urgently needed?

  • There is a growing concern that low-risk DCIS is being over-treated.
  • Retrospective trials indicate that 70-80% of DCIS cases may be low-risk and may never develop to invasive cancer or a future DCIS if left untreated and carefully monitored.
  • Current uncertainty and disagreement in the medical community about DCIS contributes to patient confusion, fear, and anxiety.
  • Results of this study may help more physicians feel confident in offering patients active surveillance as a safe treatment choice for low-risk DCIS.
  • Patients may experience a better quality of life knowing that they are being monitored carefully while avoiding potentially unnecessary physical, emotional and financial burdens.

What is “low-risk” DCIS?

DCIS that may have the lowest chance of becoming invasive cancer is called low-risk DCIS. Low-risk DCIS is generally thought to be DCIS that is grade I or grade II, sensitive to hormones, and does not cause symptoms.

There is growing evidence suggesting that low-risk DCIS grows so slowly that it would never cause health problems during a woman’s lifetime. For this type of DCIS, surgery and radiation may have very little or no benefit. – Read more about Risk and Making Decisions.

“This study will provide so many answers to questions about DCIS that are critical to resolve.” — Principal Investigator E. Shelley Hwang, M.D., Chief of Breast Surgery, Duke Cancer Institute

Who is a candidate for COMET?

  • Women 40 years or older with low-risk DCIS (low-intermediate grade)
  • No personal history of breast cancer or prior treatment of DCIS
  • For more information on eligibility, contact Tom Lynch, COMET Project Manager: thomas.lynch2@duke.edu , or visit DCISoptions.org

Where is COMET being offered?

Liang_Wen_web“This study is very exciting, the next big frontier in breast cancer treatment with no surgery. We’re trying to change our care and perception of care with less aggressive treatment.” — Dr. Wen Liang,  Seeking less aggressive breast cancer treatment, Anne Arundel Medical Center takes part in clinical trial

Are their similar studies in other countries?

  • Yes —LORIS (UK) and LORD (Netherlands)
  • PRECISION is an international initiative which will combine data from three trials

“The COMET Study is long over due for women like me (diagnosed with low-risk DCIS). This trial will help thousands of women for years to come make difficult treatment decisions based in research and reassurance rather than uncertainty, fear and concerns of potential over-treatment.” — Donna Pinto, DCIS 411

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A New Bio-marker Test for DCIS = Peace of Mind for Thousands of Women

peace-of-mindIf you are one of the 60,000 + women diagnosed with DCIS this year, you now have a way to gain more peace of mind about what to think and do about it.

A company called PreludeDx has scientifically validated a bio-marker test which evaluates a woman’s breast tissue sample and provides a “personalized” risk assessment based on her unique biology.

The test is called DCISionRT.

Had this test been available in 2010 when I was diagnosed with DCIS, I would have learned extremely valuable information that would have given me, my family AND my team of physicians great confidence in MY decisions.

Instead I found myself in a very lonely place. I was continually scared and pressured by physicians as well as women in online DCIS forums to succumb to aggressive cancer treatments — procedures and drugs that felt more toxic, scary and harmful than the actual DCIS diagnosis.

Fast forward 8.5 years.

The PreludeDx team discovered my story and arranged to test my original DCIS biopsy tissue from 2010.

Troy-Bremer
According to Troy Bremer, co-founder and Chief Scientific Officer at PreludeDx, “You have very clean biology for DCIS.”

He personally went over the results of my DCISionRT test with me which you can see below.

My Score was less than 1 out of 10 (0.8 / 10), with 9% risk of total 10-year recurrence and no expected benefit from radiation therapy.

Prelued Risk Results_DonnaIs this the picture of a woman in need of a mastectomy or weeks of daily radiation?

Is this someone who deserved to be told by a breast cancer physician, “Don’t be stupid Donna… at least do 3 weeks of radiation.

Unfortunately, DCISionRT was not available in 2010.

While I am thankful I had my strong intuition and a number of articles and studies on suspected overdiagnosis and overtreatment of DCIS, I now have the scientific proof that I  made the right choices and said NO to weeks of radiation or mastectomy.

Hopefully thousands of women today can be spared the frightening feeling that comes with uncertainty and can instead have more personalized information to support their decisions for active surveillance if they are low-risk rather than be continually pressured towards a one-size-fits-all highly aggressive treatment protocol.

In the past, studies have shown 97% of women end up doing aggressive treatments for DCIS. confusedLack of knowledge about the biological nature of DCIS coupled with fear and anxiety have been strong motivators.

Not only does DCISionRT give a woman and her family tremendous peace of mind, it can provide physicians the scientific evidence to feel more confident in supporting both someone like me — with a low-risk DCIS — to someone who is at a more elevated risk.

I believe DCISionRT will help shift the paradigm away from needless emotional trauma, (worry, overwhelm, confusion, uncertainty, intimidation and fear),  as well as help stop the problem known as “over-treatment” of DCIS.

I hope all health-care providers and organizations concerned with “early detection” of breast cancer embrace this important test.

When it comes to DCIS, there is no price tag for peace of mind.

PreludeDx_Tyler_Donna_Jenn

Jennifer Cohrs, PreludeDx Marketing Manager, Donna Pinto, DCIS411.com, Tyler H. Kibbee
Vice President, Strategic Marketing

If your doctor is unaware or unsupportive of DCISionRT, please contact Jennifer Cohrs for assistance:

I recently enjoyed a lab tour and meeting with the PreludeDx team at their office in Laguna, California.

Thank you Prelude Dx for advancing the science of DCIS and for treating me like a VIP!

To learn more about DCISionRT, click here.

Posted in Health, Options, Personal Stories, Resources, Sanity, Support | Tagged , , , , , , , , , , , , , | 2 Comments
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