DCIS — Beyond “One-Size Fits-All”

Today, women newly diagnosed with DCIS have more support, options, and resources than ever before.

Below are eight ways to help you create an “individualized” and empowered plan-of-action…

#1.  CONFIRM YOUR PATHOLOGY

#2.  ASK YOUR DOCTOR TO ORDER A BIOLOGICAL RISK ASSESSMENT TEST

#3.  JOIN A PEER SUPPORT GROUP

#4.  REVIEW PATIENT WEBSITES

 

#5. CONSIDER A CLINICAL TRIAL COMPARING ACTIVE SURVEILLANCE TO SURGERY

#6.  INCORPORATE LIFESTYLE STRATEGIES

 

#7.  UNDERSTAND LIMITATIONS OF MAMMOGRAMS

#8. STAY “IN THE KNOW” OF EMERGING RESEARCH

  • PRECISION is an international research project aimed at distinguishing indolent from aggressive DCIS in order to reduce overtreatment and life-long side effects.
  • Set up a Google Alert for “DCIS”

 

 

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Evaluating DCIS treatments — do you know your “survival” statistics?

facts not fear“There is strong evidence that treatment of DCIS in most women has no clear effect on mortality reduction.” – Finding the balance between over- and under-treatment of ductal carcinoma in situ (DCIS)

“Risk of development of metastases and/or death in a patient diagnosed with pure DCIS is very low (<1%).Ductal Carcinoma-In-Situ of the Breast with Subsequent Distant Metastasis and Death

SURGERY

RADIATION

TAMOXIFEN

  • While tamoxifen after local excision for DCIS (with or without adjuvant radiotherapy) reduced the risk of recurrent DCIS (in the ipsi- and contralateral breast), it did not reduce the risk of overall mortality. – Postoperative tamoxifen for ductal carcinoma in situ.
  • Warrick and Allred in their editorial piece conclude that tamoxifen is probably overused, and advocate more selective use. They particularly note that the major benefit would be seen in patients who are younger (premenopausal) with extensive high grade disease and/or narrow margins, and clearly only those that are ER positive.In conclusion, the clinical benefit of tamoxifen intervention based on the randomized trials is meager at best. There appears to be no benefit, at least in the UK/ANZ trial for tamoxifen amongst irradiated patients, and the benefits when claimed are very small. – Tamoxifen as an Adjuvant Agent for Ductal Carcinoma In Situ (DCIS)

 

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Namaste — My 4-11 Blessing to All

Today is 4-11 — a perfect day for a quick check-in… and “namaste” blessing to all!

On April 1, I celebrated my birthday with a visit to the Self Realization Fellowship Mediation Gardens in Encinitas.

I said a prayer of gratitude and wished for everyone to have the blessings of  love, truth, light, (health) and peace — the meaning of my word for the year — “namaste.”

One friend who is in my heart and soul is Sandie Walters.

I was so shocked and sad to learn that Sandie died suddenly from pneumonia in January. Sandie’s spirit will live on forever through DCIS Redefined, a website we created together in 2013.

I am so thankful for the meaningful work I am involved with along with my health, my family and all my dear friends near and far!

Wishing everyone peace, love, light, health and truth.

~ NAMASTE ~

Donna Pinto, 4-11-18

 

 

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Keeping Patient Perspectives at the Forefront of DCIS Research

COMET PLTPatient Advocates from across the US and around the world came together to share insights about DCIS at the 2017 San Antonio Breast Cancer Symposium.

The COMET Study Patient Leadership Team presented “Changing the DCIS Conversation: Development of an Alternative Discourse by Patient Advocate Stakeholders in the COMET Study.”

PLT POSTER

Ellen Jelle Deb DonnaAdvocates from the US, UK and the Netherlands highlighted their role as “partners” on PRECISION — “PREvent ductal Carcinoma In Situ Invasive Overtreatment Now.”

This international initiative was awarded Cancer Research UK’s Grand Challenge. Led by Dr. Jelle Wesseling of the Netherlands Cancer Institute, PRECISION aims to distinguish between lethal cancers that need treating, and non-lethal cancers that don’t.

 

Help keep patient perspectives at the forefront of DCIS research!  Join the conversation by commenting below or on social media!

 

 

 

 

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Active Surveillance P L U S — Donna’s Vision

“Active surveillance” of a potential cancerous condition through periodic medical imaging in itself can be extremely stressful — and the anxiety, worry and fear of cancer developing or progressing may not go away as time goes on.   balance

Active Surveillance P L U S is my vision. It is a holistic approach to cancer prevention, risk reduction and optimal wellness — and this strategy should not be considered “alternative.”

P L U S stands for Proactive – Lifestyle – Understanding – Support

P R O A C T I V E

Action and result-oriented strategies which can help reduce cancer risk and keep us feeling empowered, supported, centered, optimistic, and healthy (body, mind & spirit). See “Proactive Breast Health Club.”  

L I F E S T Y L E

Holistic wellness is not a diet or exercise plan. It is a combination of influential factors — a way of living, thinking and being — supported by scientific evidence to be protective against cancer. See Anticancer Living: The Mix of Six 

U N D E R S T A N D I N G

Knowledge is power. Investigate until you have a deep understanding of both your individual medical condition and how the body heals through a combination of holistic mind-body-spirit strategies. Review Donna’s resources here; read articles and watch videos compiled by Donna and Sandie Walters here.

S U P P O R T

Support is a critical factor in optimal health outcomes. See ways to stay connected below.

Donna’s Vision…

Active Surveillance P L U S is…

Donna_give_wellness

  • recognized as standard “preventative care” which significantly reduces cancer-care costs, stress and unnecessary harm.
  • embraced and encouraged by all (including medical professionals).
  • not considered “alternative.”
  • covered by insurance.
  • inclusive of safe imaging modalities with women’s personal values and preferences taken into consideration.

Ways to Stay Connected & Supported:

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Aggressive Treatments for DCIS — or NOT? New Research Sheds Light

photo-1440968872456-dec3196b9bee - Copy (2)Where are the studies of women (like me) who have taken a less aggressive path for “low-risk” DCIS? 

Until now — they didn’t exist.

Thanks to $13.4 million in funding from the Patient-Centered Outcomes Research Institute (PCORI), a long over-due clinical trial for DCIS has officially launched.

comet-logo

It’s called The COMET Study.

The goal is to learn if women with low-risk DCIS can avoid aggressive treatments and their physical and/or emotional side effects.

COMET stands for Comparison of Operative to Monitoring and Endocrine Therapy. It is a randomized prospective study that will enroll 1200 women at 100 cancer centers throughout the US.

My Role as a Patient Advocate

comet_3In 2016, I was invited to be one of four patient advocates on The COMET Study team.

We have enjoyed the opportunity to keep patient perspectives at the forefront of the study as well as this new website: www.dcisoptions.org

Since my DCIS diagnosis in 2010, I have been following and sharing the forward-thinking wisdom of a handful of breast cancer experts who were speaking out for the need for studies like COMET. It is such a blessing to now be working with some of these compassionate doctors who are leading the COMET Study…

In this video Dr. Shelley Hwang and I share patient and physician perspectives on DCIS.

 

donna-pinto_2016

Donna Pinto, DCIS 411

I hope every woman diagnosed with low-risk DCIS today knows they have a great opportunity that did not exist for me (and thousands others) in the past.

I feel an incredible sense of gratitude to all the forces and people that have made the COMET Study possible — to the physicians and cancer centers who are making it available — and to the women who will participate. Thank you!

 

A 2nd Project Takes DCIS Research Global 

funded-teams-hero-1_0I’m honored, thrilled, humbled and grateful to be a part of an international team of scientists and patient advocates from the UK, the Netherlands, and the US on a 2nd paradigm-shifting research project.

 

Preventing Unnecessary logoBreast Cancer Treatment  was recently awarded 15 million pounds by Cancer Research UK’s Grand Challenge.

The goal is to identify bio-markers that can distinguish DCIS patients with a low risk of developing cancer from patients with a high risk.

jelle-wesseling_150x150In this video, Jelle Wesseling, pathologist from the Netherlands Cancer Institute, discusses the need to be able to distinguish harmless DCIS from the potentially hazardous DCIS.

This research may help spare thousands of women unnecessary treatment.

More similar studies in Europe and the UK

  1. Management of Low-risk DCIS (LORD)
  2. The LORIS Trial: Addressing Overtreatment of Ductal Carcinoma In Situ

francis-adeleSadly, just as I was getting acquainted with the work of Adele Francis (LORIS trial Principal Investigator), I learned of her sudden passing.

Although I did not know Adele personally, when I watched this video, I felt we we were kindred spirits.

So many lives have been blessed by Adele’s work and passion. May her spirit and wisdom continue to shine down upon all of us.

~ Donna Pinto, @DCIS411

“Travel Light. Live Light. Spread the Light. Be the Light.”

 

 

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Bye-Bye Mammograms: Hello SonoCiné Ultrasound

fail“Insanity: doing the same thing over and over again and expecting different results.” – Albert Einstein

As more and more studies reveal the sad truth about mammograms, many women are left wondering what to do.

We all want better, safer and more conclusive ways to find tiny invasive breast cancers while also avoiding cumulative radiation harms, false scares, overdiagnosis and overtreatment.

The Downside Of Mammograms: What Your Doctor May Not Be Telling You lists studies as well as experts speaking out against mammography. A Danish study debunking mammograms in January 2017 concluded:

“Breast cancer screening was not associated with a reduction in the incidence of advanced cancer. It is likely that 1 in every 3 invasive tumors and cases of DCIS diagnosed in women offered screening represent overdiagnosis (incidence increase of 48.3%).”

The day this study went public, physicians and reporters alike said, “We need better technology!” One reporter on CBS  Morning News said, “Mammograms are barbaric.”

I couldn’t agree more.

I’m so grateful my journey led me to meeting Dr. Kevin Kelly, a radiologist of 34 years, who said he was passionate about improving ultrasound technology in an effort to find the tiniest cancers often missed by mammography (especially in dense breast tissue).

In 2015, I was stunned and thrilled to learn a better breast imaging technology already exists. It’s called SonoCiné Automated Whole Breast Ultrasound (AWBUS) and it was invented by Dr. Kevin Kelly. Please listen to his Ted Talk:

 

Not only does SonoCine find the earliest of invasive cancers in extremely dense breast tissue, there is no squishing, no pain, no radiation, no IV, and no contrast dye.

 

 

Breast imaging should be a personal choice.

Since personally meeting Dr. Kelly in 2015, I have only done annual SonoCine ultrasound for breast imaging. Prior to this, I was doing annual dedicated breast MRI and thermography. I stopped doing mammograms in 2011. To hear more of my reasons, see My Choice for NO RADIATION & NO MORE MAMMOGRAMS

Here’s what women can do NOW to #be W  I S E and be the change needed for better, safer, more conclusive breast imaging…

Ask your primary care doctor or OB/GYN to order a SonoCine ultrasound!

While SonoCiné is officially marketed as a supplement to mammograms and not as a replacement, I believe there is enough evidence to say bye-bye to mammograms forever!

“When her doctor found a suspicious ridge during a manual exam eight years ago, she had a mammogram and an ultrasound on the same day. The mammogram again spotted nothing amiss, but an ultrasound found a tumor the size of a quarter. Her breast cancer had also spread to 13 lymph nodes.”

What if my doctor insists on a mammogram?

If you have decided you do not want a mammogram (like me), stay strong. You can say, “I have done a lot of research. I have dense breast tissue. Studies show mammograms miss invasive breast cancer in up to 50% of women with dense breast tissue. I don’t want to keep having false alarms or having biopsies for DCIS while potentially missing real invasive breast cancer.”

Never succumb to pressures, intimidation or bullying from anyone. One of the best things you can do for your long-term health is to have a doctor who is supportive of your highly educated views and choices. Remember, you hire and fire doctors! They work for you!!

More Must Watch Films and Videos:

*SonoCine Testimonial on Facebook:

Half Truths are Lies in my eyes.
Case in point. Big media coverage today over a CNN interview with Otis Brawley of American Cancer Society regarding mammograms, women under 45 and false positives.
This is only part of the truth, please bear with me.
First issue is the reference to under 45 breasts appearing white and cancer as well appearing white. The suggestion being after 45 less white on white. Reality is many of us have Dense Breast Tissue, always white. The Dense Breast notification issue has been slowly wending its way State by State, legislature by legislature, and insofar as California was concerned, the American College of Radiology lobbied against passage.
Humans, even women deserve to know when there is a potential harm. Once you know, you then have a choice, act or ignore. Action insofar as breast cancer is concerned would be additional screening. Some will, some won’t. Choice.
For me, I had a friend well aware of an alternate screening, arranged it for me, and I took that opportunity. I drove to Los Angeles, over 100 miles one way to have SonoCine, an AWBUS, automated whole breast ultrasound. Dr. Kevin Kelly identified my never seen on mammograms, invasive ductal cancer.BTW, at that time I was 80 stillk white on White. Cancer grows in stages, before my cancer became invasive, it was “in situ.” Mammography never saw this developing cancer, I finally, post surgery was allowed to know my breast density.
I will never again trust mammograms, I drive the 100 + miles for re-screening.
Dr Kevin Kelly will make a presentation in San Diego county to hopefully find an open minded physician, not bound by machine maker lobbyists, research funds, and everything else keeping this simple, less expensive, no radiation, no 45 pounds of pressure, method from being available as an additional screening to all of us living here. Insurance already has the CPT codes for coverage. I’m still being forced to pay out of pocket, and driving 200 miles, why? Dense breast notification should be Federal, it is part of Health. Men, 10% of breast cancers are in men! You are not exempt.
So much more to this. Please just open your eyes, recognize paternalistic half truths. Let us have a chance of identifying breast cancers before they reach terminal stages. Please.

Thanks to Terrie, SonoCine is now available at Tri-City Hospital in San Diego.

Thank you so much for sharing and for your advocacy Terrie!

Blessings of love and light,

Donna

#be W I S E

#Women Informed Supported & Empowered

 

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