Hi Linda, Thanks so much for sharing thewisdomstudy.org with your network. The study enrolls women as young as age 30 which is pretty remarkable, since women under 40 haven't had much opportunity to learn about their breast cancer risk!
thank you again for such crucial information! such a struggle figuring out what to do for patients and maybe this study will help clarify things!! thank you al the play by play form NAMS--makes me want to go next time!!!!
Very interesting...I have been having biannual mammograms for the past decade. I also have dense breasts and had breast reduction surgery in my 20s. Between these two factors, I was tired of undergoing additional screenings after each mammogram. My mother, whose breast-related experiences were similar to mine, had genetic testing last year to find that she tested negative. Given the absence of a known (or even suspected) history of breast cancer on either side of my family, I am quite comfortable with my decisions about screenings. I will definitely share my data and a bit of time with the WISDOM Study.
I've been in the WISDOM study for a little over a year, after a colleague told me about it. She joined because guidelines don't qualify her for an MRI and she has ADH 'inconveniently located' for excision w/o taking off her breast. I elected the standard screening, although my risk is slightly elevated -- heterogeneous density & hx of ADH (excised).
Things are a bit different in Canada. Mammograms are available without a medical doctor's requisition (in Ontario called the Breast screening program) and can be done every year or two depending on the results. If breasts are dense then an ultrasound is ordered by a doctor to provide the extra information that a mammogram does not pick up. We can start at 50 (they were going to reduce the age to 40 but it has not been done yet). A MRI can be ordered by a medical doctor which is covered by the provincial health care here not private insurance (wait times are lengthy) if the other two tests are not conclusive. After the age of 70 (some places for testing say 71 others 75) we are no longer covered by provincial insurance for any screening for cancers such as colon, cervical, uterine or breast. I feel this is wrong but health care here has been declining significantly over the past 10 or so years.
This is interesting. I was diagnosed with DCIS in June and had a double mastectomy in July of 2024. Very dense breasts but no calcifications until this year. I asked my surgeon "why me? why now?" given that we have no history of breast cancer on either side of my family. She said that only 15% were driven by genetics and for the rest of us, it is the result of environmental exposures to carcinogens (of which we have plenty) and/or periods of intense stress and grief. The latter applies to my case as I was caring for my very elderly parents for many years until their death in 2023. The stress and grief was enormous. In any case, I was offered genetic testing but chose not to because it would have been entered into my clinical care record. For a study, I would have done it but I was worried that it could be used to deny me coverage were I to change health insurance. I am currently Kaiser. Any thoughts on this?
Hi Jill. I'm a WISDOM participant and also part of the study team. I'm sorry to hear about your diagnosis, and all the stress and grief you've had to go through. I hope some passing of time has brought some solace. I wanted to follow up about your question: Although the study does not enroll people with a history of DCIS/breast cancer, I want to let you know about The Genetic Information Nondiscrimination Act (GINA) of 2008. It is a federal law that protects individuals from genetic discrimination in health insurance and employment. Should you ever want to pursue genetic testing in the future, GINA prevents employers from making job-related decisions, such as hiring and firing, based on genetic health information. In addition, it prohibits health insurers from determining the eligibility, cost, coverage, or benefits of a health insurance policy based on an individual's genetic information.
I hope this information is helpful to you and others who may read this post.
I've been been in the WISDOM study for years. However, when I enrolled I was randomly assigned, or at least I thought I was randomly assigned, to every two years. I did not get to select a study arm. if I had, I would've also selected MRI as I had been in Dr. Esserman's study for MRI screening maybe in the 1990s. I was looking for publications to determine the exact dates but she has over 400 publications and the MRI ones I found were after diagnosis.
Just a clarification — if you enrolled in Wisdom 1.0 less than 5 years ago, you complete that 5-year term and follow up before you can re-up and make another choice which path of the study you want to participate in. I signed up 4 years ago before the genetic testing was offered and wish I were eligible to choose the personalized option sooner than 2025.
Hi Veronica, I am also a participant and part of the study team. Thanks for sticking with us for the past several years. We update the study procedures as new scientific findings occur. Later this Fall we are expanding our genetic test to evaluate 29 genes so your timing to enroll in "W2.0" may be perfect. Make sure to choose the Personalized Arm if you want the genetic test!
Thank you so much for this post and for bringing the science of personalized breast cancer risk to wider attention. 🤞I wonder if you could share your thoughts on the connection between this kind of risk assessment and decisionmaking re: MHT
As someone newly identified as high breast cancer risk based on algorithms only, I’ve discovered I fall into the gray area for current prescribing guidelines. Seems like plenty of women with my exact profile (dense breasts, no personal history of cancer, no lifestyle risks) are getting estrogen prescribed without a problem, but my menopause specialist has deemed estrogen out of the question except for *maybe* Duavee, and that only after I’m clinically post-menopausal.
So not only am I trying to wrap my head around this entirely new concept of personalized risk calculation, i am struggling to understand who in the doctor-patient relationship gets to decide what level of risk is acceptable. Part of me feels like what happened to informed consent and balancing risk-benefit? And part of me thinks maybe I’m just not taking the new science seriously enough.
This sounds like a great study. As someone who lives in a country with a basic "mammography every 2 years and ultra-sound follow-up if necessary" program, I'm wondering if Estradiol patch/Progesterone pill combo is safe for someone with level 3 dense breasts. Duavee is an option, but for various personal reasons, I'd prefer the patch. I've done a lot of research on this but still haven't landed on an answer. I have a good doctor, but she seemed to be on the fence about it, too. Thank you for participating in this study; I hope is brings us some answers!
p.s. I don't have the BRCA gene, and neither my mother nor my grandmother had breast cancer. It's really just a dense breast thing. I also haven't had any kids, if that makes a difference.
This is fantastic! I met with a genetic oncologist years ago bc my mother had an aggressive breast cancer when she was only 40, so, even though I had been having annual mammograms since I was 30, I wanted to understand more. She had me begin annual MRIs, so now I am screened every six months. This study makes me happy because it's essentially bringing the care I received to anyone who wants it!
Thank you for sharing.im going to send to friends. Bigger the study, more solid the research.
Hi Linda, Thanks so much for sharing thewisdomstudy.org with your network. The study enrolls women as young as age 30 which is pretty remarkable, since women under 40 haven't had much opportunity to learn about their breast cancer risk!
thank you again for such crucial information! such a struggle figuring out what to do for patients and maybe this study will help clarify things!! thank you al the play by play form NAMS--makes me want to go next time!!!!
Thank you for promoting the WISDOM Study! I'm now in Year 7 of participation, in the personalized arm.
Very interesting...I have been having biannual mammograms for the past decade. I also have dense breasts and had breast reduction surgery in my 20s. Between these two factors, I was tired of undergoing additional screenings after each mammogram. My mother, whose breast-related experiences were similar to mine, had genetic testing last year to find that she tested negative. Given the absence of a known (or even suspected) history of breast cancer on either side of my family, I am quite comfortable with my decisions about screenings. I will definitely share my data and a bit of time with the WISDOM Study.
I've been in the WISDOM study for a little over a year, after a colleague told me about it. She joined because guidelines don't qualify her for an MRI and she has ADH 'inconveniently located' for excision w/o taking off her breast. I elected the standard screening, although my risk is slightly elevated -- heterogeneous density & hx of ADH (excised).
Things are a bit different in Canada. Mammograms are available without a medical doctor's requisition (in Ontario called the Breast screening program) and can be done every year or two depending on the results. If breasts are dense then an ultrasound is ordered by a doctor to provide the extra information that a mammogram does not pick up. We can start at 50 (they were going to reduce the age to 40 but it has not been done yet). A MRI can be ordered by a medical doctor which is covered by the provincial health care here not private insurance (wait times are lengthy) if the other two tests are not conclusive. After the age of 70 (some places for testing say 71 others 75) we are no longer covered by provincial insurance for any screening for cancers such as colon, cervical, uterine or breast. I feel this is wrong but health care here has been declining significantly over the past 10 or so years.
This is interesting. I was diagnosed with DCIS in June and had a double mastectomy in July of 2024. Very dense breasts but no calcifications until this year. I asked my surgeon "why me? why now?" given that we have no history of breast cancer on either side of my family. She said that only 15% were driven by genetics and for the rest of us, it is the result of environmental exposures to carcinogens (of which we have plenty) and/or periods of intense stress and grief. The latter applies to my case as I was caring for my very elderly parents for many years until their death in 2023. The stress and grief was enormous. In any case, I was offered genetic testing but chose not to because it would have been entered into my clinical care record. For a study, I would have done it but I was worried that it could be used to deny me coverage were I to change health insurance. I am currently Kaiser. Any thoughts on this?
Hi Jill. I'm a WISDOM participant and also part of the study team. I'm sorry to hear about your diagnosis, and all the stress and grief you've had to go through. I hope some passing of time has brought some solace. I wanted to follow up about your question: Although the study does not enroll people with a history of DCIS/breast cancer, I want to let you know about The Genetic Information Nondiscrimination Act (GINA) of 2008. It is a federal law that protects individuals from genetic discrimination in health insurance and employment. Should you ever want to pursue genetic testing in the future, GINA prevents employers from making job-related decisions, such as hiring and firing, based on genetic health information. In addition, it prohibits health insurers from determining the eligibility, cost, coverage, or benefits of a health insurance policy based on an individual's genetic information.
I hope this information is helpful to you and others who may read this post.
I've been been in the WISDOM study for years. However, when I enrolled I was randomly assigned, or at least I thought I was randomly assigned, to every two years. I did not get to select a study arm. if I had, I would've also selected MRI as I had been in Dr. Esserman's study for MRI screening maybe in the 1990s. I was looking for publications to determine the exact dates but she has over 400 publications and the MRI ones I found were after diagnosis.
If you were in WISDOM 1, I think you may be able to enroll in this study, which is WISDOM 2. Here is some more info https://www.thewisdomstudy.org/faqs/#:~:text=The%20WISDOM%20Study%20services%20are,of%20your%20routine%20screening%20services.
Just a clarification — if you enrolled in Wisdom 1.0 less than 5 years ago, you complete that 5-year term and follow up before you can re-up and make another choice which path of the study you want to participate in. I signed up 4 years ago before the genetic testing was offered and wish I were eligible to choose the personalized option sooner than 2025.
Hi Veronica, I am also a participant and part of the study team. Thanks for sticking with us for the past several years. We update the study procedures as new scientific findings occur. Later this Fall we are expanding our genetic test to evaluate 29 genes so your timing to enroll in "W2.0" may be perfect. Make sure to choose the Personalized Arm if you want the genetic test!
I'm 75 so doesn't look like I'm eligible. But thank you!!
Thank you so much for this post and for bringing the science of personalized breast cancer risk to wider attention. 🤞I wonder if you could share your thoughts on the connection between this kind of risk assessment and decisionmaking re: MHT
As someone newly identified as high breast cancer risk based on algorithms only, I’ve discovered I fall into the gray area for current prescribing guidelines. Seems like plenty of women with my exact profile (dense breasts, no personal history of cancer, no lifestyle risks) are getting estrogen prescribed without a problem, but my menopause specialist has deemed estrogen out of the question except for *maybe* Duavee, and that only after I’m clinically post-menopausal.
So not only am I trying to wrap my head around this entirely new concept of personalized risk calculation, i am struggling to understand who in the doctor-patient relationship gets to decide what level of risk is acceptable. Part of me feels like what happened to informed consent and balancing risk-benefit? And part of me thinks maybe I’m just not taking the new science seriously enough.
I am going to address this in an upcoming post.
This sounds like a great study. As someone who lives in a country with a basic "mammography every 2 years and ultra-sound follow-up if necessary" program, I'm wondering if Estradiol patch/Progesterone pill combo is safe for someone with level 3 dense breasts. Duavee is an option, but for various personal reasons, I'd prefer the patch. I've done a lot of research on this but still haven't landed on an answer. I have a good doctor, but she seemed to be on the fence about it, too. Thank you for participating in this study; I hope is brings us some answers!
p.s. I don't have the BRCA gene, and neither my mother nor my grandmother had breast cancer. It's really just a dense breast thing. I also haven't had any kids, if that makes a difference.
This is fantastic! I met with a genetic oncologist years ago bc my mother had an aggressive breast cancer when she was only 40, so, even though I had been having annual mammograms since I was 30, I wanted to understand more. She had me begin annual MRIs, so now I am screened every six months. This study makes me happy because it's essentially bringing the care I received to anyone who wants it!
Go sign up!
Does the study pay for the genetic testing?
Yes. And if they recommend an MRI they will write a letter of necessity for your insurance.
Do you know if having had genetic testing (negative results) precludes you from joining?
As far as I know, no. If you go to the link, you can read all the criteria.
You can still join, and opt-in to the Personalized Arm to do our genetic test!