Thank you for taking the time to share your DCIS story with us!
6 Comments
RRT
on August 13, 2018 at 7:06 am
I was diagnosed with DCIS in October 2014, by diagnostic mammogram and then stereotactic biopsy. The surgeon was in the process of detailing the many options, but never suggested surgery first. Having gone through numerous biopsies and diagnostic mammograms over 25 years, I opted for a bilateral mastectomy without hesitation.
Every mammogram in the last 5 years showed “something we need to check in a few months, or biopsy”, and I could not keep up with which side had the questionable issue each time.
I felt like it was a matter of time before a malignancy showed up. Consequently, I am thankful I was allowed to have the bilateral mastectomy, with no complications or surprises, followed by reconstruction over the next 2 years. It is a huge relief.
Had I not had a long history of diagnostic mammograms and biopsies on both sides, I would have agreed to careful monitoring when diagnosed with DCIS.
You are not alone. I think this is why Dr. Susan Love describes DCIS as “highly personal” and the exact same circumstances can result in different choices based on the patient.
I am delighted to hear that your doctor informed you of different options and if you are comfortable doing so I would appreciate your sharing the name of your doctor. I am curious whether you are located on the West Coast?
As far as radiation treatment and mammograms, I have to say that we are not medical professionals and do not give medical advice, however, I do feel there is little to be gain by second-guessing yourself and worrying about things outside of your control.
The DCIS diagnosis most often starts with a mammogram and we know that many DCIS cases in the past were never diagnosed and it appears from studies that the majority of those cases never progressed to invasive cancer (i.e. many women lived out their lives never knowing, caring, or doing anything about their DCIS).
We look forward to a day when women are lead down a different path when facing DCIS and are counseled not to worry and are not told they have cancer requiring immediate surgery.
Linked below are a few support groups that you may want to check out.
We do not know any of your specific circumstances but hope you ultimately find a place where the fear associated with DCIS is put in the backseat. Even if you ever end up getting invasive cancer it will most likely be treatable….try to live a happy healthy life as that may be one of the best defenses.
Hello, I am interested in learning more about why the left breast in particular is more at risk for invasive cancer if DCIS was treated with a lumpectomy followed by radiation therapy. My DCIS was left side. I had radiation therapy after a lumpectomy because of scattered calcifications. I opted out of the hormone therapy Tamoxifen and I am managing my estrogen naturally with supplements diet and exercise. Lately I have been wishing I chose not the do radiation. I am questioning if it was necessary and if I put my life at greater risk because of it. Fear/Anxiety got the best of me at the time. And of course after reading this site, I wonder about the surgery too. My surgeon was wonderful and gave me options and even recommended referring me to a doctor who was a proponent of close monitoring of DCIS but again, I ultimately chose to have surgery out of fear and worry at the time. I did not know if I could exist knowing the DCIS was there, just being monitored. I find the monitoring to be the hardest part as mammograms and biopsies and MRI’s are trauma to my breasts and cause pain and worry for weeks after being smashed poked and prodded. What are your thoughts on mammograms harming breast cells? Thanks, gina
Thank you for taking the time to provide your comment. The quote is clearly controversial, however, We took Dr. Narod’s quote from a New York Times article published August 20, 2015 (see link below) and we are not aware of any retractions or corrections to the quote. The full sentence from the article is: “Those facts lead Dr. Narod to a blunt view. After a surgeon has removed the aberrant cells for the biopsy, he said, “I think the best way to treat D.C.I.S. is to do nothing.” https://www.nytimes.com/2015/08/21/health/breast-cancer-ductal-carcinoma-in-situ-study.html
We endeavor to provide accurate information that is not misleading and if we find supporting evidence that the New York Times has this wrong we will remove or modify the quote immediately. Did you find anything else on our site that you found misleading?
Currently, almost all DCIS patients are told they have cancer and operated on. It is clear that a large number of those patients (likely the majority) would never develop invasive cancer and do not need treatment. The problem is that doctors cannot tell the difference and therefore treat everyone the same.
Often there is little or no discussion with the patient about this controversy or if their individual risk of developing cancer is high or low.
We believe that doctors could be counseling DCIS patients who have low-risk lesions to consider watchful waiting, but most patients never get that chance. We believe that, like prostate cancer, DCIS will one day be treated much less aggressively with many women avoiding surgery.
I was diagnosed with DCIS in October 2014, by diagnostic mammogram and then stereotactic biopsy. The surgeon was in the process of detailing the many options, but never suggested surgery first. Having gone through numerous biopsies and diagnostic mammograms over 25 years, I opted for a bilateral mastectomy without hesitation.
Every mammogram in the last 5 years showed “something we need to check in a few months, or biopsy”, and I could not keep up with which side had the questionable issue each time.
I felt like it was a matter of time before a malignancy showed up. Consequently, I am thankful I was allowed to have the bilateral mastectomy, with no complications or surprises, followed by reconstruction over the next 2 years. It is a huge relief.
Had I not had a long history of diagnostic mammograms and biopsies on both sides, I would have agreed to careful monitoring when diagnosed with DCIS.
Ugh, just realized left breast is higher risk because of being near the heart (ignore that part of my last comment)
Is there a way to get screened to see if radiation therapy harmed ones heart or if any risk factors are present?
I do wish I had discovered this website before getting treatment.
Gina,
You are not alone. I think this is why Dr. Susan Love describes DCIS as “highly personal” and the exact same circumstances can result in different choices based on the patient.
I am delighted to hear that your doctor informed you of different options and if you are comfortable doing so I would appreciate your sharing the name of your doctor. I am curious whether you are located on the West Coast?
As far as radiation treatment and mammograms, I have to say that we are not medical professionals and do not give medical advice, however, I do feel there is little to be gain by second-guessing yourself and worrying about things outside of your control.
The DCIS diagnosis most often starts with a mammogram and we know that many DCIS cases in the past were never diagnosed and it appears from studies that the majority of those cases never progressed to invasive cancer (i.e. many women lived out their lives never knowing, caring, or doing anything about their DCIS).
We look forward to a day when women are lead down a different path when facing DCIS and are counseled not to worry and are not told they have cancer requiring immediate surgery.
Linked below are a few support groups that you may want to check out.
We do not know any of your specific circumstances but hope you ultimately find a place where the fear associated with DCIS is put in the backseat. Even if you ever end up getting invasive cancer it will most likely be treatable….try to live a happy healthy life as that may be one of the best defenses.
DCIS 411 Bolg- This blog, by Donna Pinto, who has been a patient and patient advocate since 2010
https://dcis411.com/
DCIS Redefined-
https://www.facebook.com/dcisredefined/photos/a.281446655374560.1073741827.178940072291886/281446542041238/?type=1&theater
DCIS Precision –a site run by doctors and dedicated to eliminating overtreatment of DCIS breast cancer
https://www.dcisprecision.org/
Hello, I am interested in learning more about why the left breast in particular is more at risk for invasive cancer if DCIS was treated with a lumpectomy followed by radiation therapy. My DCIS was left side. I had radiation therapy after a lumpectomy because of scattered calcifications. I opted out of the hormone therapy Tamoxifen and I am managing my estrogen naturally with supplements diet and exercise. Lately I have been wishing I chose not the do radiation. I am questioning if it was necessary and if I put my life at greater risk because of it. Fear/Anxiety got the best of me at the time. And of course after reading this site, I wonder about the surgery too. My surgeon was wonderful and gave me options and even recommended referring me to a doctor who was a proponent of close monitoring of DCIS but again, I ultimately chose to have surgery out of fear and worry at the time. I did not know if I could exist knowing the DCIS was there, just being monitored. I find the monitoring to be the hardest part as mammograms and biopsies and MRI’s are trauma to my breasts and cause pain and worry for weeks after being smashed poked and prodded. What are your thoughts on mammograms harming breast cells? Thanks, gina
“I think the best way to treat D.C.I.S. is to do nothing.”
Steven Narod, MD, Senior Scientist, Women’s College Research Institute
That’s inaccurate and misleading. What he said is that he thinks further treatment *after lumpectomy* is the best approach.
Thank you for taking the time to provide your comment. The quote is clearly controversial, however, We took Dr. Narod’s quote from a New York Times article published August 20, 2015 (see link below) and we are not aware of any retractions or corrections to the quote. The full sentence from the article is: “Those facts lead Dr. Narod to a blunt view. After a surgeon has removed the aberrant cells for the biopsy, he said, “I think the best way to treat D.C.I.S. is to do nothing.” https://www.nytimes.com/2015/08/21/health/breast-cancer-ductal-carcinoma-in-situ-study.html
We endeavor to provide accurate information that is not misleading and if we find supporting evidence that the New York Times has this wrong we will remove or modify the quote immediately. Did you find anything else on our site that you found misleading?
Currently, almost all DCIS patients are told they have cancer and operated on. It is clear that a large number of those patients (likely the majority) would never develop invasive cancer and do not need treatment. The problem is that doctors cannot tell the difference and therefore treat everyone the same.
Often there is little or no discussion with the patient about this controversy or if their individual risk of developing cancer is high or low.
We believe that doctors could be counseling DCIS patients who have low-risk lesions to consider watchful waiting, but most patients never get that chance. We believe that, like prostate cancer, DCIS will one day be treated much less aggressively with many women avoiding surgery.
If all DCIS patients received the counsel offered in the video produced by the Dr. Susan Love Reserach Foundation in the video linked below, our site would not be necessary.
https://www.youtube.com/watch?time_continue=2&v=3UAHUTZq0WM