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.
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
In 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.
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
I’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 Breast 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.
In 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
- Management of Low-risk DCIS (LORD)
- The LORIS Trial: Addressing Overtreatment of Ductal Carcinoma In Situ
Sadly, 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.”
What is “low-risk” DCIS? Is this DCIS with a low oncotype score?
Low-risk means low-intermediate grade on pathology report. No “high grade.” Oncotype score is not an eligibility factor for the COMET Study
What is grade 2 and 3 mean?
Grade 2 is intermediate, moderate or medium (this would still be considered low-risk)
Grade 3 is “high-risk” — more likely to develop into invasive cancer without standard treatment
See descriptions here: http://www.breastcancer.org/symptoms/types/dcis/diagnosis
LikeLiked by 1 person
Hi Donna, I just re-blogged your post on One Health of a Life for some cross-pollination! Maybe we should work on a schedule and do this every once in awhile when we’re talking about the studies? Best, Deb
LikeLiked by 1 person
This is so amazing! Donna, you continue to be a guiding light to all of us who want to see progress made in the area of overtreatment of DCIS. Hopefully with these studies underway, we can finally have solid medical data to support our decisions when it comes to treatment and screening – data that we can actually bring to our personal physicians which will carry weight and be respected. Bless you and bless all of the dedicated doctors and researchers who are looking for real answers to combat the misplaced emotionalism (and lack of science) that many patients with DCIS have endured for far too long!.
LikeLiked by 1 person
Well said as always “informed consent!” Sending you much love and blessings back! We are on our way to CHANGE the paradigm! Hugs 🙂
Great job, Donna! I’m excited to be part of the team with you on the COMET and CRUK Grand Challenge studies. And if others are interested, SHARE is holding a DCIS webinar on March 22 at noon Eastern Time. http://linkis.com/org/cpAI3 We’ll talk about these very things!
Reblogged this on One Health of a Life and commented:
Another good post about some of the new DCIS research that should give us better answers! If you want more information about DCIS, please join us at the SHARE DCIS webinar on 3/22/17 at noon Eastern: bit.ly/2hRYj8H