My health journey related to DCIS started back in 2011.  I had just moved to a new state, was selling a home in my previous state while also buying a home in my new location.   Needless to say, I had a lot on my plate!  I had just gotten established with a  primary care doctor and wanted to be viewed  as a cooperative patient.  Against my better judgment, I agreed to a screening mammogram.  I had never been a fan of mammography, didn’t like the idea of the unnecessary radiation, and generally avoided it throughout my life.  But I was getting older and figured, hey, just do it this one time.  Imagine my shock when I got a call from my doctor saying they had found something and that I needed to make an appointment with a breast surgeon immediately.  I was so taken aback by this, it was so unexpected, I didn’t know what was happening. 

When I obtained the  written radiology report, it said that I had something called “microcalcifications” in my right breast.  It said they were “suspicious for malignancy” and it rated my BIRAD score as “BIRAD4”. I found the report to be rather vague, no real size of this “grouping” of micro-calcs, and no specific description of their appearance. I didn’t think the report was  very “scientific” at all.   These terms were totally new to me.  I had never heard the term “microcalcifications” before.  In all the years I had been bombarded by the “mammogram pink lobby”, with the constant breast cancer scares in the media, hounding women to get mammograms, I had only heard about “lumps.”  Breast lumps or breast masses.  Yet, here was a new term:  microcalcifications.  I also had never heard the phrase “ductal carcinoma in situ.”  You would think that over the years of the “breast cancer pink lobby” these terms would be more well known, but they are not.  Micro-calcs account for a huge number of biopsies performed on women every year in the U.S., but  most of us only hear about “lumps” or “masses” when biopsies are discussed in the media.

Along with the written report, I also went to the radiology dept. and got the CD containing the mammogram image of these “microcalcifications” but literally couldn’t even see what was being described on the imaging.  I was so confused, so shocked, that my mind was racing in a thousand different directions. I’m sure many of you have been through the same shock  situation  when given this type of report.   

My primary care doctor was of no assistance in clarifying any of this for me.  He only reiterated, with a stern tone of voice and expression, that I needed a biopsy. Quite soon,  I received a phone call from a breast surgeon’s office, demanding that I set up an appointment for a consultation.  Again, I was so shocked that the medical system was moving me along on a conveyor belt of tests and appointments that my head was spinning. I felt I had no choice but to meet with the breast surgeon and find out what was up with all of this. 

In the meantime, I immediately started Googling “microcalcifications” and went down a rabbit hole of information that was so contradictory and horribly confusing that I couldn’t determine fact from fiction.  I also made the huge mistake of going on some of the most active and well-known internet breast cancer forums and ran into the most hostile, negative and frightening interactions I’ve ever had online. This was back in 2011.  The women there made it sound as if I would die immediately, within the near future, if I didn’t have the biopsy! The fear-mongering was absolutely outrageous and unacceptable! The moderators of these forums allowed this to happen.  They all had “scare” stories and horror stories designed to make me doubt myself and my own attempt to educate myself.  I was insulted and name-called and completely driven off these forums.  To maintain my own sanity, I totally quit going to these breast cancer “support” areas, realizing they were not going to lead me anywhere but into a disaster.  To this day, I do not go on these forums as I find they do not provide support regarding DCIS but instead  foment a lot of misinformation. Maybe it’s changed since then (I would hope so), but I stay away. 

My appointment with the breast surgeon was horrible, with him interrogating me about any family history of breast cancer. I told him, no, there was no history in my family.  He even went as far as to ask if any MEN in my family had ever had breast cancer!  I felt he was doing everything in his power to pull out all the stops and intimidate me as much as he could to get me to agree to a biopsy.  After all, he was the one who would be making the $$$ from my insurance company for this core needle biopsy.  Whether I actually needed a biopsy was irrelevant to him.  He put on his grandiose act and kept it up throughout the consult.  What he didn’t realize when I walked in, was that I had already done a lot of research into DCIS, micro-calcs, and had seen all the confusing statistics about it.  I was one of the rare educated patients who go into his office. I could see that he was nothing more than a sham. He was very rude  and I felt he was overdoing his act.  I politely sat there and listened to him, and then got up and walked out. I refused to schedule a biopsy with his nurse and left his office.

As soon as I got home, my phone started ringing. It was his nurse asking me why I hadn’t scheduled the biopsy. I told her I needed to think it over and to stop calling me, and that if I decided to schedule, I would.  And that was that.  They lost a “paying  customer” that day.  Too bad!  But for me, it was a win!  Another thing I had learned prior to going into his office is that breast biopsies leave  a little “clip” permanently inside your breast tissue as a marker.  Naturally, he never mentioned THAT. Of course not!  They don’t want you to be informed about these  details until it’s too late to object or do anything about it. 

The more I thought about it, the more I felt I was dodging a bullet to refuse  the biopsy at least until I learned more and was truly an informed patient. The good news was that in the middle of all my online research, I thankfully stumbled upon Donna Pinto’s amazing blog, DCIS411.  She and I had similar experiences at about the same time, 2011, so our journeys  somewhat coincided and overlapped.  Even though we had never met, it was like we were sisters in a war, and we were fighting it together!  I was overjoyed to find her site and immediately posted at the blog. I realized that here was a blog that was going to really sustain me, and  make a huge difference in my health and my life. 

Sometimes fate can throw you a lucky curve ball –   having so much on my plate with two real estate deals going on in 2011 –  I simply couldn’t handle  a biopsy along with all of the rest of the things I was coping with in my life at that time.  I think that if my life had been more settled and sedate, there’s a high likelihood that I WOULD have had the biopsy, but my rather chaotic life situation at that time stopped me from being able to do much more than tread water.  It slowed me down and forced me to look more carefully and deeply into the whole biopsy, DCIS, breast cancer world in general.  It forced me to ask questions, and research rather than succumb to panic and fear reactions.  I felt I couldn’t go forward with what might turn into a big medical mess on top of all my other life changes.   This slowing down process taught me a very valuable lesson which I’ve never forgotten.  The breast cancer world and diagnostics are so filled with “rush-rush-hurry up” attitudes, and a  lack of patient information and true consultation, that women are pushed and prodded and rushed from one situation to another with very little in depth information.

My primary care doctor was not happy at all with my decision and pressured me to have the biopsy, telling me ominously, that “it could save your life.”  This type of phrasing is designed to instill the utmost fear and panic, and second thoughts, and regrets into any patient who hears such words.  I won’t lie and say I wasn’t scared and terrified to hear such phrases.  I was.  I’m only human.  I’m not superhuman or coated in magical fireproof  armor.  I could feel myself breaking into a cold sweat beneath my clothes, almost like shockwaves.  The real definition of courage is not being un-afraid; it’s doing what your gut and SCIENCE tells you is right in spite  of what the outside fears are creating within you.  The medical personnel involved in these schemes (and I do believe in many ways they are schemes), are well aware of women’s fears.  Yes, women die every day of breast cancer, just as men die from prostate cancer.  But I realized from my research that men with indolent slow growth prostate “cancer” that will never kill them similar to indolent DCIS are not subjected to the same fear tactics that women are about breast  abnormalities.   Why is that?  I feel it’s because the medical world knows that women are more passive and are not as good as men about questioning medical tests or treatment. Women want to be seen as cooperative and “nice.”  This is used against us time and time again.

My doctor aggressively pushed for me to do mammograms every six months if I refused to do the biopsy.  I refused the six-month suggestion.  I told him I was concerned about subjecting my breast tissue to more radiation exposure than necessary, and that I would only agree to do one mammogram per year.  Again, he was very unhappy about that, and I worried that he could potentially get rid of me as a patient.  He didn’t do that (maybe legally that would have looked iffy, to dismiss me as a patient for merely standing up for my  rights). Let’s not ever forget that we as patients DO have rights – we have  the right to refuse  tests or treatments. Things were left on a rather uneasy note,  and  I am probably one of the few  patients he ever had who stopped the breast cancer conveyor belt from going down the usual paths and stepped in to do my own research and inform myself about the best way forward.  I  wasn’t  stopping the forward motion of the conveyor belt out of  stubbornness – I genuinely  wanted to understand  the science and the truth of the matter. My suspicions had been alerted that I wasn’t getting that.

I decided to pay a visit to the  radiologist who had issued the report on me.  I wasn’t able to track down the radiologist who did it, but was able to consult with one of the staff radiologists – a very nice and professional woman who met with me.  I told her my stance on this, that I wasn’t going to have the biopsy and wanted to find out more.  I asked her several questions while she put the images up on her big screen for viewing, which I also looked at.  She wasn’t able to answer my question as to size, type or anything else about these microcalcifications.  That told me a lot about the utter lack of real science behind this biopsy recommendation.  After chatting with her for a while I said, “Do you think I am putting my life in jeopardy not to have this biopsy?”  She looked me straight in the eye  and very calmly said, “At the end of the day, it’s your body.”  She said it in such a way that I felt she was agreeing with me, that the biopsy was unnecessary.  I knew for legal malpractice reasons she couldn’t come right out and say that the biopsy was not needed, or that she had major doubts about the recommendation,  but somehow, she gave me the feeling that she was on my side.  I left her office feeling even more empowered that I was on the right track, and needed to continue on my  course.

When I was settled in my mind that I would not do the biopsy, I didn’t let it rest at that. I obsessively researched microcalcifications from every known angle that a non-medical person could!  Luckily, I’m good at research, so I was able to dig into online medical journals and every conceivable resource I could find.  My head continued to spin off my shoulders as I saw what a mess this DCIS subject really is.  Even two pathology labs sometimes can’t agree about the same sample!  Unreal!  My research led me to find an amazing man of medicine named Dr. Gilbert Welch at Dartmouth University.  Dr. Welch is the foremost expert on something called “overdiagnosis” –  another term that was new to me!  I became utterly intrigued by his findings about how screening and over-testing for small issues can cascade  into huge unnecessary treatments such as radical surgery, radiation or chemo. Harming patients rather than helping them.  Sometimes even killing them.  I contacted Dr. Welch via email around 2011 or 2012 about my own situation and he very graciously responded to me.  Naturally, he couldn’t comment on anything specific about my own case, but he was supportive.  Dr. Welch has been a man of ultimate courage, standing up to the medical world which would prefer that  he not put his findings out there.  He undermines the medical conveyor belt system in the U.S. and naturally, he isn’t liked by certain elements within the profession.  He was  another hero I encountered during my journey, among others such as Donna Pinto who have brought this issue to the forefront.

After a tumultuous year in 2011, refusing this biopsy, I spent many sleepless nights over my decision.  I would often wake up in the middle of the night wondering if I’d done the right thing.  I’ve developed PTSD over this entire situation.  I once joked to a friend  that I felt I was more at risk for getting killed in traffic driving to the radiology place to get the mammogram,  than of  dying of breast cancer! I live in a major metro area with horrible traffic so  driving is definitely more of a worry to me than breast cancer! I’m sure some of you can identify with that,  if you deal with big city traffic as you keep all your medical appointments!  Ironic and crazy, isn’t it?  What we go through to do what the medical profession says we “must” do. 

During the ensuing 12 months between that first 2011 mammogram and the 2012 follow up I was a nervous wreck.  It never left the back of my mind, constantly worrying me, eating at me and interrupting my thoughts as I went about the task of settling into a new city and home. It  totally sucked that I had been put into such a situation.  I knew the first follow up mammogram might tell me whether I had done the right thing or not to refuse the biopsy.  I didn’t have much support from family members who seemed to doubt my choice in this.  They were polite but rather subtly judgmental.  I didn’t blame them, as I knew they didn’t understand all the things I had learned about DCIS and overdiagnosis.  They didn’t seem  very interested in hearing what I had learned, which was rather disappointing, but that’s life. For some reason, women tend to cling to whatever they’ve  heard through the “pink lobby” or the alarmist  media about breast cancer diagnosis, and anything new is threatening to them.  They prefer to remain in their little bubble, even when the bubble is harming them! They would rather chop off both breasts than re-think some of their unfounded or outdated ideas. I personally don’t understand that mindset, and never will.  I want science.  I want facts, not half-truths or myths.

The first follow-up in 2012 once again recommended biopsy, BIRAD4, suspicious for malignancy.  But there never had been any specific description of these calcs that fully delineated their  shape or size.  Once again, I had to go into my doctor’s office,  who this time was even more worried and pressured me again to do the biopsy. Once again, I stood my ground.  I told him I had continued to research DCIS and had reached the conclusion that unless there was some sort of real change shown in these follow up mammograms, I wanted to opt for active surveillance.  This  was a new term for me (and probably to him, too).  I said that nothing so far had changed my mind about these micro-calcs being malignant or life threatening and that I didn’t want to subject my body to a painful, expensive and unnecessary biopsy.

That first follow up of 2012 told me that nothing was proven to be changing or growing in ways that could be demonstrated  and proved to me, as a patient.  I knew from research that even if some DCIS changes (if indeed that’s even what it was), it’s so slow, so indolent, it never does any harm.  I was still bucking the entire medical world, pushing back against a high-pressure atmosphere and believe me, it took every ounce of courage not to give in.  Can I count the number of times I almost went through with a biopsy? A LOT of times! But  then I would pay a visit to the DCIS411 blog, renew my courage, and give myself a rational lecture that said, “stop living a fear-based life, live a rational life!”  I had to talk myself down from the ledge over and over again, year after year after year! I’m being honest because it’s important that anyone reading this needs to realize  that standing up to massive pressure  is hard, very hard.  You second guess yourself even while surrounded by support networks like DCIS411 and other groups, and even while some seasoned medical professionals  agree that DCIS is over-biopsied,  over-diagnosed and over-treated.

One highlight (or I should say lowlight!) that sticks  in my mind is that every year when I went in for follow up mammograms, I unfortunately got the same nasty mammogram tech person. I kept hoping she’d retire or transfer to another facility.  I literally dreaded going in there and being subjected to her rudeness.  She’d look at me and ask, “Why haven’t you done the biopsy?”  She said this very rudely and coldly to me.  I was always polite and told her I had done research into this and wasn’t going to do a biopsy unless there was real reason to do it.  She’d say, “They recommend this year after year, and yet you refuse?”  She’d sort of roll her eyes at me. All I could do once again is stand my ground and tell her my thoughts.  She had no business questioning me about my treatment choices.  She wasn’t a medical doctor or pathologist.  She was merely a mammo tech.  She finally retired and a somewhat nicer tech took her place (or maybe I outlived her lol!) But this is yet another example of the subtle or not so subtle hostility you may encounter when you “refuse” to do as they order even when you nicely explain your stance and your thoughts about it. 

If you think my anxiety and PTSD lessened during the repeat mammograms over several years, you are wrong. If anything, it got worse.  I kept asking myself how long I could hold out, how long they could  continue  to recommend biopsy on micro-calcs that seemingly hadn’t changed in 2011, 2012, 2013, 2014, 2015, 2016, 2017, 2018 2019, 2020, 2021. How?  Something sure didn’t smell right to me in all this.  It began to feel a bit embarrassing that these medical professionals continued to recommend an invasive procedure (a biopsy) with what seemed to be little or zero evidence of any change in these so-called potentially malignant micro-calcs. I began to wonder if I was the only patient in the history of their radiology clinic who had gone back  time after time after time, returning for recommended yearly screening, and yet refused the biopsy. Probably most of their patients either caved in immediately and had the biopsy for micro-calcs, or disappeared and never came back at all for any further screening.  But I was unique.  I came back again and again, putting them in the rather awkward position of having to actually defend their findings.  Either defend them or change them.  Right?  Right! I think even my primary care doctor was beginning to see that things weren’t adding up.  And gosh, I was still alive and breathing lol…I wasn’t dead as per all the fear-mongering hordes!

Finally, around 2022, the radiologist downgraded the findings and said no biopsy recommended, micro-calcs stable.  I went through over 10 years of hell of yearly panic and anxiety until these findings were finally downgraded as “stable.”  And as far as I could tell, there had never been any change whatsoever during all those years, yet they continued to recommend biopsy.  Someone must have finally intervened and realized they couldn’t continue to recommend an invasive procedure without at least some medical proof. Otherwise, it might be perceived as malpractice.  The year I was finally put back on a normal screening (vs.  diagnostic) routine, was a happy and victorious day for me.  I certainly felt validated. I remember going into my primary care doctor and saying, “Well, they now say no biopsy needed.”  He sort of nodded his head but didn’t say much.  I think he felt somewhat sheepish about how he’d originally approached this situation. Ten long years into this, and his own patient had made the right call.  I like to think maybe he learned something about the concept of active surveillance vs. automatically making a patient feel it’s a life-or-death situation with micro-calcs.

This year’s mammogram (2026) was once again normal, no biopsy recommended.  And even more perplexing, there are no micro-calcs noted on the mammogram at all.  Where did they go?  Did they disappear?  I’ve heard of that happening, maybe they are absorbed into the body?  I have no idea.  But it highlights again how microcalcifications seem to be a finding that should be surveilled and watched (if anything) and not biopsied until or unless they change. I want to make clear that I am not against biopsy as a medical procedure.  It can certainly be a necessary  procedure when/if needed.  It’s the UN-needed biopsies that are happening by the millions in this country that need to be stopped.

One thing I’d certainly recommend if you are confronted with this type of medical scenario is always get a copy of the radiology report and the actual film of the images.  You might not be able to understand all the medical terms, but you at least need to lay your own two eyes on the hard copy report. It’s amazing to me how many people in this day and age still do not get their medical reports in hand and look at them.  Even if you think you won’t understand the medical terms, you still need to see what is actually being said, because it may differ  from what you are being told. Unless you have the report in front of you, there’s not a way for you to ask pertinent questions or ask that certain terms be explained to you in layman’s terms.  Utilize every resource available to you including the valuable AI resources via ChatGPT that are now online.  Above all, pay attention to that little inner voice that I think we all have which alerts you to slow down and get things clarified before going forward.    Heed your gut instinct and don’t let anyone tell you that you are being  difficult or stubborn.  You have rights.  Use them!  Too often, we are made to feel it’s instant death if we don’t have this or that procedure immediately.  Many times, that just isn’t the case. I still remember asking the surgeon if I could take a few days to think it over and decide whether I wanted to have the biopsy or not.  He raised his voice and said, “No!  absolutely not! I wouldn’t wait even one week!”  Looking back, I realize how utterly ridiculous his attitude was.  If any medical person tries to make you think you don’t even have a few days to consider a treatment recommendation, in a non-emergency situation, you need to leave their office and seek another opinion!   

I’m only hitting the high points in this summary, I’m sure there’s many things I’m leaving out, otherwise I could write a book!  But ultimately, I do feel proud of myself for not caving in to the pressures.  I’ve certainly learned a tremendous amount about DCIS, overdiagnosis, overtreatment, and the hazards of saying yes to tests or procedures without full informed consent.  I thank God every day for Donna Pinto, her outstanding work at DCIS411 which came about through her own stressful and very  difficult situation.  Unfortunately, that’s how crusaders and pioneers are often born.  They walk through their own fire and come out the other side.  But through those bad times comes growth and education.  I really don’t have words enough to thank Donna, because there were days when I almost gave up and gave in to whatever the doctors wanted of me.  She kept me going, along with other wonderful people who also posted at her blog with their own stories and challenges. 

Currently, I still do a yearly mammogram and go through the same horrible anxiety about it year after year because I know “something” new could pop up.  But at least I’ll have a ton of information and experience at my fingertips  if it does.  I still hate the idea of mammography, but unfortunately, it’s the only screening test my insurance will pay for other than ultrasound. Some years I feel like  not doing it again, and maybe I will reach that point.  I’m 70 years old and getting rather weary of the whole medical world in general.  I tend to take a middle of the road cautious view on screening, whether for breast cancer, colon cancer, heart disease, you name it.  I try not to preach or tell anyone what they should do about their own health other than to say, always demand answers when you ask questions. Easier said than done, right?   With the internet, we each have to be our own researchers. That’s what I had to do.  But not everyone  is good at it or can do it.  That’s why we desperately need change in the medical world and the radiology screening protocols so that none of us ever has to go through what I went through or Donna went through with micro-calcs or DCIS. The medical world needs to start getting it right, with projects  like the COMET study and long-term solid research. Doctors like Gilbert Welch need to be respected and applauded for his work instead of criticized.  The mammogram clinics need to stop being  so busy  and start focusing on  what they were originally designed to detect:  lumps and masses, not little specks of calcium in breast tissue. Active surveillance needs to become the gold standard in relevant cases.  The surgery centers need to stop making breast biopsies one of their main sources of revenue.  These changes  will only happen over time, through various approaches.  Where profit and big money is concerned, we know it’s never easy to remove that incentive from their wallets.  But patients, along with  enlightened and passionate doctors,  will make it happen! I think we already see more people online  in discussion forums or in YouTube comment sections who now understand the concepts of over-screening,  overtreatment or overdiagnosis, whereas back in 2011 when I first got my “diagnosis,” most people  had never heard of these ideas.  So, definitely things have moved in the right direction in the past 15 years.

For my own personal health choices, I don’t smoke, I don’t drink alcohol, and I eat what I want within reason.  I’ve always felt moderation is the key.  But I respect those who feel  the food we eat is very important to health.  We see the bad results of  diets with too much sugar and fat in the U.S. with obesity through the roof. I try to maintain a balanced approach,  but I’m sure I could improve.  Some breast cancer is  genetic like those caused by  BRCA genes, regardless of diet or exercise.  But in dealing with this whole experience, I feel the worst impact on me has been  the STRESS, and as they say, “stress kills.”  Stress of a certain type, where you feel helpless, powerless, confused, or  panicked, is the worst type of stress in the world.  I would often  “stress eat” before or after a mammogram or Dr. appointment,  and consume things I shouldn’t such as soda or  sugary desserts, simply due to the stress of being told I “might” have breast cancer, and I “must” have a biopsy. It has severely impacted my quality of life for years.  Therefore, let’s work together to change this sad state of affairs. We can and we are! In the meantime, I’ll  continue to post my yearly updates at DCIS411 to  let everyone know the yearly results of my mammograms, or perhaps if I decide  to stop doing  them, I’ll update on that, too. I have learned so much from reading everyone’s stories, comments, and experiences.  

Congrats to Donna Pinto and her continuing educational outreach efforts about DCIS, on social media, at medical conferences, and elsewhere. I think of her as a rare angel here on Earth!  Stay safe, stay healthy and above all STAY INFORMED!

Guest Blog by “informedconsent2014” – a long-time member of DCIS 411