Some doctors are studying whether Active Surveillance (following you closely and not operating on you unless you get cancer) may be a good alternative to surgery for DCIS. Do you wish you were offered Active Surveillance as a treatment option after being diagnosed with DCIS from a biopsy? If you had the same diagnosis today and active surveillance was offered, would you choose this and would you be willing to participate in a 2 year study? How often would you want to be screened by mammogram? Do you have any other thoughts or concerns about Active Surveillance? Please share your ideas with us by leaving a reply below! Thank you!!
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DCIS 411 
I had high grade DCIS and it was large. I had oncoplasty and if given the choice I would have done that again. The part that I may have changed is the radiation. I had 4 Dr.’s opinions and they all said to have the radiation. I did have the radiation and the jury is out on that. Since then I have worked with Dr Christine Reese who is a naturopath and she has become my only Dr. I trust her and she makes sense to me.
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I was diagnosed with mild grade DCIS in May 2014, after my biopsy. I had a lumpectomy in June 2014. I am currently doing active surveillance. I have had one Mammogram, and 2 Breast MRI’s since then. I hope to continue with the Breast MRI’s over the Mammograms because I feel they are safer. I did not opt to have the radiation or the tamoxifen. I was given the option of just watching it closely, but felt better by having the lumpectomy.
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>Do you wish you were offered Active Surveillance as a treatment option
>after being diagnosed with DCIS from a biopsy? If you had the same
>diagnosis today and active surveillance was offered, would you choose
>this and would you be willing to participate in a 2 year study?
Donna, Thanks for a wonderful, thought-provoking piece about active surveillance.
After a diagnosis of DCIS based on needle biopsy, and much careful thought (~a year of looking into options, while under the care of a stellar, open-minded surgeon), I had a lumpectomy. The DCIS was intermediate-grade, and small in scope (a few mm). Adequate margins were achieved, so I didn’t pursue radiation. I’m happy I went forward with the lumpectomy. In part, because the tissue removed offered a better sample (than, say, the stereoscopic needle biopsy that prompted the diagnosis) to understand exactly what types of cells were involved. And at that time, and maybe currently, the data just weren’t there for me to be comfortable pursuing surveillance only. I struggled with this decision, for many months. But ultimately, for me, the surgery was the way to go. It was straightforward, a day away from work, and the surgical sample offered a clearer idea of what was happening in that area of my breast, giving some peace of mind that no IBC was present, etc.
By saying yes to the needle biopsy, and then the surgery, I know I got on a “train of treatment,” and I don’t want to easily hop on that train again. I’m trying to prepare myself for how to respond to the inevitable mammogram result, ‘well, we see some suspicious calcifications, and maybe we should biopsy those, to be safe…” Arg- those darn needle biopsies. I feel like they pose an earlier fork in the road, whether to biopsy or not, that should be given more attention in the research realm.
So, while I have no regrets about how I handled my recent DCIS diagnosis, if I were to confront this diagnosis again, and the science were better (that’s key), I may be interested in active surveillance. Or even, more radically, doing surveillance longer of calcium deposits or other anomalies on mammograms, before the needle biopsy. I feel women involved in such clinical studies now are heroes, as they are the ones who are making the science better, so that the rest of us can feel more secure in making decisions.
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My story and Jen”s story are exactly the same. I would have typed the same thing almost word for word. So, ditto what Jen said, lol.
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The biopsy on the calcifications shown on my mammogram showed 9mm high grade, comedo DCIS. Glad I had lumpectomy. Brachytherapy and 1.5 years of Tamixifen. ER/ PR positive. Intermediate grade DCIS, higher ER/PR positive, 13 mm showed up just anterior to the old lumpectomy/brachytherapy cavity 6 years later. I opted for another lumpectomy. Discussing whether to irradiate again or not. Never ever ever did a doctor agree to “watchful waiting”. I would have agreed to it either time if a doc could have given me orders for mammos every 3 months.
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I had High grade DCIS. 3.5cm Had a lumpectomy, 99% clear margins, had
5 weeks of Radiation. and was given a
RX for Tamoxifen. This done from July –
Oct of 2013. I would have definitely done
Active surveillance if given the opportunity.
And if I had the chance to do it over I def
would not do the radiation. I NEVER took
one Tamoxifen pill either.
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Hey Gail. I also have high grade DCIS, 2.8 cm, and they say it is too large for the size of my breast to end up with a good cosmetic result (even though I desire a reduction and rearranging of tissue to make it look good). How did you get agreement for the lumpectomy vs mastectomy? Did you have to find a special surgeon to agree not to do a mastectomy — and if so, who? Also, they are seeing “suspicious” calcifications all over my breast but nothing confirmed — which is why they want me to have the mastectomy but I am refusing. Did you have other suspicious areas too? THANKS FOR SHARING!!!
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I am currently 6 weeks postop skin and nipple sparing mastectomy from low grade/intermediate grade dcis. I was offered a study of tamoxifen for 5 years instead of surgery,which I obviously didn’t choose. at the age of 48, surgery and reconstruction seemed like a better option. Had there been an option for active surveillance that was clearly defined and explained, and gave me confidence that invasive cancer could be detected before I was in danger, yes I would have strongly considered it. My dcis was extensive (8cm) per surgical biopsy, but none of it invasive. Given the pain and disruption this treatment is causing, I would definitely have liked the option to wait and watch. The way I see it, 5 years of active surveillance would have gotten me to the start of menopause, at which time I would consider taking tamoxifen. I think all of this would be easier to endure if I had invasive cancer.
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Even though I don’t fit precisely into a clear-cut category because I haven’t had a biopsy yet, I’ve been doing surveillance on a Birad4 recommendation, small cluster of calcifications, since 2011, with the next mammogram set for Jan. 2016. My doctor has supported me in this, although at times rather reluctantly, so I certainly was never offered any form of surveillance as an option. I did my homework, studied all the options, and made the decision not to biopsy until (or if) I felt it was the appropriate measure to take. And I do believe the harm begins with the many unnecessary biopsies that are performed in the U.S. every year on calcs. I wish more women were given the option for active surveillance, whether it be at the level I’m at (pre-biopsy surveillance), or after a diagnosis of DCIS depending on the findings. For now, most of us have to make these decisions on our own, which is not a pleasant place to be for a patient, but hopefully this will change in the next FEW years! I applaud every woman here who has had to make these difficult decisions with little support from the medical world.
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Yes, definitely would have done active surveillance if given the choice.
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Thanks so much for all the replies! I will keep everyone posted on the study. Donna
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After my first mammogram (at age 39) showed some suspicious calcifications, I had a needle biopsy and was diagnosed with low grade, non-comedo DCIS in Dec 2014. My physicians immediately put me on the aggressive treatment path… My surgeon was ready to schedule a surgery ASAP, but things just didn’t feel right to me. That path didn’t seem right. I have no family history of breast cancer and all my genetic tests where negative. That’s when I started reading more about alternative options for DCIS and came across the work and mentality of doctors at UC San Francisco and MD Anderson (I only came across this website a couple of months ago). After much thought and consideration put a brake on the surgery train and decided to jump off. I got a second opinion from Drs. at UCSF and we agreed to pursue active surveillance. It’s been 6 months and I am currently due for follow-up diagnostic tests. In short, I wasn’t immediately offered active surveillance and I am glad I pushed for it. If I had followed my physician’s advice, I would have had at least a lumpectomy, radiation and tamoxifen treatment by now. Only time will tell if my DCIS will become invasive, but I am sure I made the right decision for me at the time.
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watchfuleye my story is the same as yours only I am 56 and live in Canada and was also diagnosed with low grade DCIS a few months ago. My immediate thought was get them off but I did research as well as there is no history of cancer in my family. The original surgeon wanted to do lumpectomy right away and radiation if necessary and was really aghast at the thought that I wanted to think about it and then I got a 2nd opinion thru my family Dr. and this new Dr. was very interested in my decision to go with Active Surveillance as she specializes in Breast Cancer and even tried to find me a Clinical Study to participate in. So I am going for a mammogram in Jan and back to the original surgeon to see the results. But in my mind I think this was the right way to go, and I definitely will question the use Tomoxifen after reading some of the side effects if it comes to that down the road. I will keep track of our various progress reports. Best of luck to us all!!
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I was originally diagnosed with grade 3 DCIS. there were actually 3 areas in one quadrant. My mammogram and core needle biopsy did not pick up my invasive tumor that was found after lumpectomy. Even though I was told my margins were clear and they got it all I still decided to go with a double mastectomy (Aug. 5th). Pathology found two more areas of DCIS. Although my recovery will be slow and difficult, a wait and see approach would have missed my invasive tumor and the possibility of becoming a Stage 3 or 4 as opposed to my stage 1. There are too many unknown variables when it comes to DCIS that my personal choice would always be the more aggressive one. I’m 46 and did not want to gamble.
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In April 2005, I was diagnosed with noninvasive DCIS Grade 2, no lymph nodes involved, but because I was small breasted, a mastectomy was encouraged over a lumpectomy. I elected to have a double-mastectomy (I was experiencing a leaky nipple in my other breast, but showed no signs). I had chemotherapy, but no radiation. I was on a 5-year protocol of Arimidex. I was well taken care of at the Navy Medical Center in San Diego and then after a divorce, had to change to a civilian oncologist. It was with the civilian doctor that I realized I had time to decide my options. And it was years later after completing my 5 year protocol and being released from my 6 month followups, I read that DCIS was not considered a “cancer;” that blew my mind reading that and then just recently when I captured Donna’s blog. I believe I made the correct decision for the information I had at the time. Would I have elected for active surveillance — don’t know other than to say, “I wouldn’t want it to be on my brain 24/7.” I breastfed my baby back in 1993; my breasts had their purpose then. I have had many journeys and adventures as a breast cancer victor. Many women stated that my positive attitude gave them hope and strength if ever they were diagnosed with breast cancer. The medical staff at the Navy Hospital started me on my journey of always staying positive and the advice that “walking was free.” Every appointment with the clinicians ended with “stay positive, Donna.” I do stay positive; I surround myself with positive and uplifting people; I run away from negativity and am healthy today with products I use from my Wellness business.
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At the age of 66, I was diagnosed with high grade DCIS in my right breast in December 2014. The first doctor immediately suggested a double mastectomy. (Really?) The second doctor recommended removing “2 to 4 quadrants” with no reconstruction. (Hmmm.) I have seen several doctors since then, and none of them has suggested a simple lumpectomy and/or active surveillance. After much research and consideration, I believe that active surveillance is the best path for me. Unfortunately, I haven’t been able to find a medical doctor who is willing to walk that path with me – yet. In the meantime, I have had genetic testing for 28 genes – with negative results. (Good news for my children and grandchildren!) I’m embracing “immunotherapy,” and I’m actively working with an excellent nutritionist. I have had 2 MRIs, 3 ultrasounds, and 3 thermograms since last December. (Stable – nothing evolving.) I will continue to have a thermogram every 3 months, and I hope to have an MRI every 6 months. I’m leading a very active, happy, peaceful life! I truly believe that an active surveillance option would be a welcome addition to the standard of care offered for DCIS.
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Excellent!
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Hi there, very grateful for your blog, thank you. I am 53 years old and have just been diagnosed with DCIS, and undergone two excisions, and was all set to have 5 weeks of radiotherapy when they discovered more dcis in the pathology (low to intermediate grade.) The surgeon advised mastectomy, but fortunately I had just read the recent article in NY TImes so I declined, and asked to adopt the “watch and wait” policy. She agreed, and said to come back in 6 months in order to mammogram/ultrasound again – and also said I no longer needed to do the radiation. She also added that because my breasts are “tricky” to read pathology-wise, there is likely to be more suspicious findings which would inevitably lead to more biopsies. Having just endured a fine needle biopsy, vacuum core biopsy plus the two surgical excisions and had to pull out of a big job (I work freelance) so lost a lot of income, this is a very depressing thought, and almost has me contemplating the double mastectomy, just to be rid of this! I suppose my question is this: if mammograms are throwing up all this DCIS, can I refuse a mammogram and still be adequately screened?
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Shirley, there are other types of mammograms other than the standard. I question whether mammograms are the best for us. I am a double mastectomy (read my other postings), 10 year, 1 month cancer victor. I had no radiation, which I believe was a saving grace, but was on a 5-year Arimidex protocol. You will need to do some reading on whether refusing mammograms and still be adequately screened is an option. Arming yourself with information will help you make your decision. I cannot help you recoup your income. Private message me on FB (Donna Bowers Salas) and I will share a link with you (no hype, no bs, no lie) where you can help enhance the lives of others. I hope you will reach out, be curious, and get to know me. This is not the time to be depressed or have depressing thoughts, but I know exactly why you are. I also had the fine needle biopsy, which was so painful, I screamed so loud the entire facility heard me; had a tactile biopsy — went through so much, but my surgical staff, oncology clinicians helped me think positive. I survived for a reason and I believe wholeheartedly it’s because I have information to share. Thank you for sharing your story. I am here for you.
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I meant to say I can share some information with you where you can recoup your losses and help others at the same time. If interested, curious, just private message me on my FB page. I wish you well.
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I was just diagnosed with DCIS – 8mm high grade, comedo, ER positive. My BRCA test came back clear and I will have the Oncotype DX testing before I make my final decision. If my DCIS was lower grade I might consider the watch and wait approach. However, my Mom had stage 2 breast cancer at my same age and it’s not worth the risk to me. Because of the size and area of DCIS I am considering mastectomy rather than having a severely deformed breast, radiation and 5 years of Tamoxifen.
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Hi Sophia, We all are experiencing different types of breast cancer. I had DCIS 2 that docs still considered early-stage, but they said mine was aggressive. I was having a leaky right nipple (clear in R-breast), but I decided to have a double mastectomy. I was small breasted and carving out the cancer only would had left a horrible deformity. I had no radiation (no lymph nodes involved), but was on a 5-year Arimidex protocol. I am a 10 year, 1 month cancer victor. I’m happy with my decision. I have to say too, the type of essential care products I am using is the reason for my overall health. I am always available to talk if you would like to reach out to me.
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Thanks for your reply Donna. I have noticed crust on my left nipple. It is kind of like sleep in your eye. I always thought is was remnants of milk from breast feeding (although it’s been 10 years…) I see my doctor this week and am going to ask her about Padget’s disease. Thanks for sharing your story. I would like to hear more about what you are doing to stay healthy.
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I remember my doc saying something to the fact that my leaky nipple might have something to do with pituitary gland, but nothing more than that. I thought since I was considering a mastectomy and I was experiencing a right leaky nipple (they served their purpose 20 years ago) to do a double mastectomy. Look up prolactinoma and share with your doc — it’s probably this and not Padget’s Disease, but ask. Share your email with contact info if you would, at dslovinglifetoday@gmail.com and I will share information with you that keeps me healthier. Thanks, Sophia. Keep me posted on your doc visit — I’m here for you.
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I’m glad I happened onto this site. I’m 47 and just got my first ‘call back’ for micro-calcifications. However, I put an abrupt halt to the usual procedures because after having the ‘new’ 3D screening mammogram, I got hives in the areas exposed to the radiation, except for breasts and arms. Since then I’ve been questioning what I ought to do. Needless to say, the breast center has not be very cooperative. They don’t even want to consider that their machine caused my hives. Yes, I would be willing to be involved in active surveillance. If this turns out to be only a scare (like a scare isn’t bad enough!), I’m swearing off annual mammograms. The 2014 study out of Canada in the British Medical Journal has convinced me that mammograms are no more effective than breast exams. It’s not ‘catching it early’ that matters; it’s what kind of cancer you have that dictates your survival. I will admit that I have been skeptical of the medical profession for a long time (due to other health issues I’ve had that they’ve only made worse, not better), but honestly, when it comes to cancer treatment, they’re still in the dark ages. It’s cut, burn & poison. I’m glad I found a website where the women on it are not hysterically telling me to let the doctors do what they want to do. I am definitely open to alternative treatments. Until some brave women are willing to join in a study to monitor the behavior of DCIS instead of radical treatment, we will never know for sure if ‘mammograms save lives’.
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Sam, I’m thrilled you are being cautious, asking questions and being proactive. I limit my exposure to doctors and their prescription “manage of care” protocol they have to follow. It may have been a lotion you were using, if any at all, that caused your hives. I’ve been wondering about mammograms too, if they save lives, or do they harm us. I don’t get them any more as I had a double mastectomy — and lucky for me, no radiation necessary. I wish I could reach everyone who is dealing with some kind of health issue(s) to introduce them to my business’ brand of safer and better for you products (every day essential care). There are many stories, like my own (no hype, no lie, no bs). Look me up on FB (Donna Bowers Salas), private message me and I will send you to a link. I love my business because I get to enhance their lives. I hope you will reach out and be curious.
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