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!

 

 

 

 

About dp4peace

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. Glenn & I live in San Diego with our two boys: Skyler, the Yogi and Cody, the Buddha! I enjoy running, yoga and working on projects that bring more peace, health and light to our world.
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4 Responses to Keeping Patient Perspectives at the Forefront of DCIS Research

  1. Laura says:

    Congratulations on your recent presentation. I continue to be inspired by this research to better stratify women diagnosed with DCIS into appropriate risk categories. I completed a bilateral mastectomy in December 2017 following a DCIS diagnosis and donated the tissue to a research database at UAMS… I am hopeful that my pathology can contribute to exactly what this study seeks to define. It gives me peace of mind about my treatment decision to believe it may help others in the future. Thanks for your advocacy, Donna.

    Liked by 1 person

    • dp4peace says:

      Wow Laura….thank you so much for your comment and your contribution via tissue donation to helping researchers better understand DCIS!! I don’t recall being asked about donating my tissue samples, but I think this is so important!

      Like

  2. Reblogged this on One Health of a Life and commented:
    Thanks to Donna Pinto for giving a good summary of our activities at the 2017 San Antonio Breast Cancer Symposium (SABCS), and with the 2 amazing studies that we are both a part of: COMET & PRECISION! Let us know if you want more info. Thanks!

    Like

  3. informedconsent2014 says:

    Hi Donna and everyone,

    I always update my mammogram findings on a yearly basis here, in hopes that others can get some good information and insight into the microcalcification issues I’ve been dealing with. To somewhat backtrack, in 2011 (that’s 7 years ago), I had a mammogram that revealed a small area of linear microcalcs on the R breast, upper inner quadrant. As per the usual knee jerk protocol, a biopsy was recommended. Luckily, I had done some research into this, on Donna’s great site here and also Dr. Gilbert Welch’s writings, Dr. Laura Esserman and others, and refused the biopsy, opting to watch the area on a yearly basis. Naturally, I encountered a lot of pressure along the way, but stood my ground. I’m currently 61 (soon to be 62). Post menopausal. No breast cancer history in the family.

    With the first finding in 2011, I actually went in to the radiologist personally and asked to see the calcs on the viewing screen. I also asked for a precise measurement of the size of the microcalc area because none had been given on the report. I was told it was quite small, at 9mm.

    I continued having mammograms on a yearly basis, continued to refuse biopsy and opt for surveillance. Some years there seemed to be a “slight ” increase of the R breast calcs, some years it seemed none. The reports were quite short and vague, with no measurement of the calcs and nothing that seemed like a cancer that was aggressively growing. In general, it seemed like what we often hear about calcs, DCIS, etc. – slow growing (if at all), and no reason to jump in with aggressive overtreatment, surgery, etc. etc. Bear in mind, since I refused (and continue to refuse) a biopsy, we don’t know whether it is DCIS or benign.

    It went on like this until 2017 when a second small group of calcs were found on the left breast. I wasn’t surprised because I have somewhat suspected that the radiologists would continue to “hunt” for calcs due to my refusal to jump into invasive procedures, biopsy, etc. They have to justify their biopsy recommendation somehow, right?

    Once again, I refused biopsy in 2017, when they were now recommending biopsy of both the right and left breast calcs. In other words, making a constant pin cushion of my breasts. It occurred to me that if I’d caved into the pressure and had the right breast biopsy, I wondered if the left side would have ever come up at all, or whether the pressure was ramping up to push me in the direction of biopsy (and potentially damaging treatment). I don’t have the answer to that question, but I don’t think it’s outside the realm of possibility. And honestly, I wasn’t too surprised that this is happening because I’m sure my refusal to biopsy is not something the radiologists want to be “supportive” of , since their billion dollar mammography industry is on the line, and if more of us start questioning these knee jerk biopsy recommendations for microcalcs (along with other DCIS surgery/treatment options), they may begin to lose $$$. Also, their lawyers are pressuring them, and we, the patients, are the ultimate losers in this medical tug of war.

    So now it’s 2018, and I just had my yearly mammogram. Lo and behold, yet another group of calcs was found in a different area of my right breast in the lower outer area. In this 2018 report, it says that this particular group has been developing since “2016” when “they were very faint”. This is interesting because the 2016 report said nothing about faint microcalcs in that area. I guess they were so darn “faint” that it wasn’t medically legit to throw them into a report at that time. Now in 2018, they’ve decided to add them to the microcalc descriptions. I personally feel that this is a constant hunt for calcs to make it appear that more is going on than really is, or to make the reports sound more medically legit as per their biopsy recommendation.

    There’s also a discrepancy in this report which raises an eyebrow with me. Regarding the left breast calcs (which were first described in the 2017 report), this 2018 report now says that this grouping of calcs has not significantly changed since “2014”. What? There was NO mention of any left breast calcs in 2014, but now all of a sudden, they (apparently) have seen those since 2014 (with no change in three years).

    I feel like there’s a lot of “calc hunting” going on that’s creating a “tempest in a tea pot”, designed perhaps to make it appear that more is going on here than really is. My case is, indeed, probably quite frustrating and unusual for the radiologists reading my mammograms because they rarely encounter a woman who does two things:

    1) refuses biopsy and 2) continues with a yearly follow-up.

    Probably women who ignore biopsy recommendations do so for reasons other than solid research, and therefore also don’t do meticulous follow-up as I have done. But in my case, it may be getting a little embarrassing for them to continue to recommend biopsy year after year after year when the actual progression of any of these calcs has been slight to none. As you can see, they recommended a biopsy on the left breast calcs which, by their own admission in this current 2018 report, haven’t progressed at ALL since 2014. Does this tell you something? It tells me that there’s a lot of nonsense going on in the world of microcalcification hunting. It also tells me that “calc hunting” is a very imprecise medical “art form” that is more based on legal hysteria and social pressure than on legit science and medicine.

    I would have no problem with being told to keep an eye on something as I get older. I DO have a problem with being recommended to have an invasive procedure based on flimsy and imprecise findings!

    I suppose next year they’ll find more calcs to continue to pressure me and justify this mess. I intend to stay on course for now and NOT have a biopsy on either the right or left breast. In this current 2018 report, they seem to back track a little and emphasize the “linear” grouping of the right breast in the biopsy recommendation (although they are still recommending biopsy of both right and left).

    Another interesting side note on this particular report, is that it took from Feb. 21 until March 2 for it to be read. In past years, I’ve always obtained a copy of the report within 24 hrs. This time, I had to call again several times until it was ready. Someone at the radiology center said that perhaps the doctor who reads it was “out on vacation”. Maybe that’s true. But in my experience, if a biopsy is recommended, they usually get that read in 24-48 hrs and sent to the referring doctor quickly so the patient can be notified in a timely manner. Maybe this report was held back a bit longer for more thorough “calc hunting”. Who knows? Or maybe they now know that I’m not going to jump through their hoops and there’s no longer a need to do the “rush rush” routine. . After seven years, I guess they DO know that lol!

    I hate getting these yearly mammograms and being exposed to the radiation. If I weren’t constantly “under the gun” about this, I’d do them every two years, but my family doctor would probably “fire” me as a patient, and I have other health issues that need care, so I go through this nonsense. I can’t take MRI with contrast because I’m allergic to contrast dye, so that’s out as an alternate screening method for me. And MRI’s find even more false positives than mammograms, so I have never been too big a fan of MRI for microcalcs. I hope and pray that in the years ahead a better form of safe, non-radiation screening is developed.

    I realize this has been a long update, but I want to keep Donna and all of you who visit that forum apprised of what’s going on in my case, because I continue to hold the line on invasive biopsy until I see a REAL, legit reason to do it. That time may come in the future, I don’t have a crystal ball, but it isn’t here yet as far as I’m concerned. I’m also hoping that in the next 5 years, the results from the COMET trials and other DCIS trials will be available, and hopefully there will be changes in the way findings of microcalcifications like mine (which are not substantially changing or progressing over the years), are dealt with. At least drop the immediate knee jerk biopsy recommendations and give women an option of surveillance. Or better yet, do as Dr. Welch and others have suggested and remove microcalcs from the screening protocol and go back to using mammography for what it was best intended to do – find lumps in early, treatable stages.

    So far, I’ve been happy with my approach to this health issue. I can’t recommend what you should do (each case is different), but at least you’ve heard my story and how I’ve handled it. I feel that so far, I’ve spared myself a painful/invasive procedure and potentially even more unnecessary/damaging treatments. I’ve very grateful to Donna Pinto, all the researchers like Dr. Welch, Dr. Esserman, Shelley Hwang at Duke University, etc. and ALL of you here who support the DCIS 411 forum.

    Take care, I’ll continue to update yearly! Love you all, and wish all of us TRUE health and informed decision making!

    Like

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