Have You Had An Over Zelous Radiologist?

Rockym · July 2021

Looking for opinions or similar experiences. I am 10 years out and I have been having mammos every year. In the beginning the radiologists were looking WAY too closely and biopsied twice when it was nothing, wanted to do a nipple biopsy over something that I knew was typical and tried to get me to do a biopsy over something that they later said we could watch and re access in 6 months.

6 months later, it was nothing as I had expected. Anyway there is one radiologist out of the 8 in the group who seems to be diagnostic happy. This is the year she saw my films the other day. They want me back for more films and ultrasound which I will of course do, but I am very concerned. Not so much that they will find something, but that this is the biopsy happy lady. I am not sure what to do.

This all might be a big nothing burger as they say, but I do not like feeling like people want to poke and probe me for less then the best intentions.

Anyone else been in this predicament? Ideas? Thanks ladies.

Cowgirl13 · July 2021

Rockym, you will hear from others about their experiences and you will also hear from people who are Stage IV because something was missed. I'd rather that I had a fighting chance.

exbrnxgrl · July 2021

I agree 200% with cowgirl13. I know that tests and biopsies are very stressful but too many of my stage IV sisters have had things overlooked or dismissed only to later find they had mets. I’m not trying to scare you and you ultimately need to do whatever is best for you.

Beesie · July 2021

Rockym, the thing to keep in mind is that because you have a history of breast cancer, your risk to be diagnosed again with a new primary breast cancer (different from a recurrence of your previous diagnosis) is approximately double that of the average woman your age who has not been previously diagnosed. So there is a good reason why radiologists are extra careful with those of us who have had breast cancer before.

I looked at your earlier posts and see that you were 47 when you were diagnosed 10 years ago. That means you are 57 now. For all women, our highest risk years to be diagnosed with breast cancer are when we are in our 60s and 70s, and that is equally true for those of us with a history of breast cancer. So you are just about to enter than period.

I was diagnosed when I was 49. Based on my MO's assessment and his reference to me having 'double the risk', my lifetime risk to be diagnosed again was about 22%. I went through years with 6 month screenings, alternating MRIs and mammos. At some point, the radiologist decided that wasn't necessary - in part because I had so many BIRADs 3s that already required the addition of an ultrasound and 6 month follow-ups. I finally had a period of a couple of years where everything looked good, and in fact I had my first ever BIRADs 1 imaging. But I was now 62, and I was concerned about my higher risk. A couple of years ago, in my discussions with the tech while she was doing my mammo, I convinced her that additional screening was necessary. She talked to the radiologist, who agreed that I should have an ultrasound, just to be on the safe side. The ultrasound found a small mass, and a few days later, a biopsy confirmed breast cancer. It was a new primary in the other breast, 13 years after my first diagnosis. I was diagnosed only 2 weeks after having a perfectly clear BIRADs 1 mammogram and it would have been less than 2 weeks if not for Christmas and New Year's falling in between the mammo and ultrasound.

That's not to say that anything similar will happen to you. But it highlights the need for diligence with our breast screenings, once we have a history of breast cancer. The further out you are from your diagnosis, the lower your risk of recurrence, but as you age and get into your higher risk years, the greater the risk of a new primary diagnosis.

Good luck. Hopefully the callback itself resolves any concern and no biopsy is necessary.

Rockym · July 2021

Thanks for the reply cowgirl and exbrnxgrl. I am a little on edge and I figured I could come back to this group and get some footing. I do agree that I do not want anything missed and god forbid have a recurrence, etc. I just had such a bad experience with some followups in the past and not once did they find something real... only to take me down the rabbit hole and leave me to my own devises. At least three times I had to say no to invasive stuff and yes all was well in the end, but my confidence in the medical profession took a nose dive.

To this day, I stay away from doctors unless it's the mammo screening or a flu that needs the minute clinic :--).

Rockym · July 2021

Beesie, thank you so much for your detailed reply. I was hoping some people with experience would chime in the way I used to on this site years ago. I had some of my best learning from the ladies here and that is how I made many of my medical decisions. I listened to doctors, the ladies with experience and then my gut. It does get put into perspective thinking about aging, etc. I am crossing my fingers that this is more about changes in the breast that was dense to begin with and they record that and send me home.

Jelson · July 2021

Beesie - thanks for this explanation for continued and then increased vigilance "The further out you are from your diagnosis, the lower your risk of recurrence, but as you age and get into your higher risk years, the greater the risk of a new primary diagnosis."

Tmh0921 · July 2021

I was diagnosed in 1999 at age 27 originally, and I can honestly say that I have NEVER had a normal mammogram. I've had follow ups and biopsies almost every year since, most were benign fibroadenomas. In 2016 however, I was DX with ADH, in 2018 it was ALH and DCIS, then in 2019 - Wham! Stage IIA IDC - 19 years and 6 months from my first diagnosis. I had felt the lump but had assumed it was scaring from my 2018 lumpectomy. My radiologist insisted on a breast MRI, ultrasound, and ultimately another biopsy which came back IDC.

I have PTSD from my now 22 years of deal with this crap, and every mammogram and ultrasound and biopsy induced panic attacks. I would double up on my Klonopin those days because I knew it was coming. But I am ultimately THANKFUL that my radiologist insisted on the diligence, she and my surgeon have saved me 3 times now counting the DCIS

Rockym · July 2021

tmh0921, Wow 27! I am so sorry. My daughter is 19 and I wouldn't let her use hormonal birth control (she uses a copper IUD) because I was scared for her. I guess I do have a bit of PTSD from the experience in 2011 and thought it was behind me. I hope it is, but the moment they said diagnostic and ultrasound, I got a flash of me with no breasts or hair. Again, I hope this is just my highly analytical head going to worst case and then focusing in on the radiologist who poked and probed 5/6 times. The other radiologists in the group sent me on my way over the years.

This one lady was wrong each time. Overly cautious of one thing or another so therefore I refused a couple of biopsies way back since that gave me more control over just allowing them to poke. Each time the were invasive it was a nothing (other than the first cancer), but one of the times they did a biopsy, my breast blew up (since there were lymph nodes missing) to almost 3 times the size of the other. It took over a year for my breasts to be more normal again. I guess that left an impression too since it was just a cyst. I recall thinking, can't these people see the difference of a cyst from a real mass? I don't know, but thanks for sharing and I am sorry you have had that many years of being in this situation.

Rockym · July 2021

Coming back to post with good news.. All Clear!

I will say that in retrospect the original radiologist was over the top and I will have to request in the future that she never read my scans again. She wrote a report that said, "masslike nodular asymmetry" and a bunch of other scary stuff. Turns out the mammogram tech said I had some tissue that was folded over in the first mammo and that was why I had to come back in. So Ms. over the top scared the shit of me for a week. Couldn't she have simply wrote a report that said dense tissue is distorted and we need a second look?

I was told I was coming back for more views and a ultrasound. No one said it was two quick scans, a happy letter from the other MD and NO ultrasound. These people have no shame and obviously it doesn't bother them to scare cancer survivors. I'm not upset that it was good news, I just think things should be done differently. I have thought about calling or writing a letter, but for now I will just keep the joy and note this as a life lesson.

Beesie · July 2021

Rocky, great news that your callback imaging cleared everything up!

It sounds as though what happened with the original mammogram was that some breast tissue was folded over, giving the appearance of mass-like asymmetry. So to your question, "Couldn't she have simply wrote a report that said dense tissue is distorted and we need a second look?", the likely answer is "No". Even if the radiologist thought the odds were good that the asymmetry was caused by folded over breast tissue, the reason you had a callback is because without additional imaging, it's impossible to know this for sure. What if the "masslike nodular asymmetry" was actually a mass, and it was cancerous? And what if the radiologist had not written "masslike nodular asymmetry" in the report? That would be negligence.

Usually with a callback, a diagnostic mammogram is done first, followed by an ultrasound. For a lucky few, the diagnostic mammogram is enough to clear everything up and the ultrasound isn't necessary, but here again, there is no way to know this in advance. So how would you have felt if you were told that you were just coming back in for a couple of quick views, but then more views were required and you had to have an ultrasound too? Wouldn't you have been upset? Wouldn't you have felt that you'd been lied to? And what would have happened if you had needed the ultrasound but it hadn't been scheduled?

As patients, many of us like to get copies of our imaging reports. That's good - I always get my reports - but reading medical jargon can be scary. We have to remember that the reports are not written for patients; imaging reports are written, using the appropriate and accepted medical terms, for all the other doctors who will be taking action on the report and will be reviewing the reports in the future. Accuracy and detail is important - and certainly is better than a report that is vague. You can be sure that next year when you have your mammo, the radiologist assessing the imaging will read this year's report, and just to be on the safe side, will take an extra look at the area where this year you had the mass-like nodular asymmetry.

On this site we often get posts from newbies heading for a biopsy who are panicked and confused. They've been told by the radiologist that the biopsy is just a precaution, but upon reading their report, they see the words "suspicious for malignancy". So they think the radiologist has not been truthful. There are a couple of posts in the Not Diagnosed forum currently where this concern has been raised. This is a good example showing how necessary medical terminology can be misinterpreted by patients. "Suspicious for malignancy" is the common wording used by radiologists for a BIRADs 4. A BIRADs 4 is always assigned when the radiologist recommends a biopsy. But what does it really mean? A BIRADs 4 is assigned by the radiologist, and a biopsy is recommended, any time the imaging is assessed to have a risk of malignancy that is >2%. So "suspicious for malignancy", scary as that sounds to us as laypersons, doesn't imply the same thing to the doctors reading the report and doing the biopsy. And "masslike nodular asymmetry" doesn't imply the same thing to a doctor as it does to you. (As an aside, if those words were on my mammogram report, I would assume that it's most likely a cyst that's causing the asymmetry. But then I've had lots of cysts so that's the first thing that comes to my mind.)

Go with the joy of the good results! Congrats!

Rockym · August 2021

Thanks for the replies and yes, the tissue was folded over. That is what I mentioned in my previous post. I know for many reasons they cannot give a simple "let's take another look report," but as I wrote in my original post, I was concerned about the person being Over Zealous. I was wondering if others had been through this experience because in retrospect it turned out to be true. Now that doesn't necessarily mean it is bad, but it was upsetting.

I went through this before, with the same radiologist (many times) and I feel there are possibly covering themselves. I may be suspicious, but when the same person writes up a specific report in a specific way it leads me to wonder and after many years, it did. I do not want to wonder about my scans and that is why I mentioned I won't have that person read them again. There are others there that I feel more confident with.

I would have felt much better if I knew I was going in for a quick view and then g-d forbid something came up. The problem was I was told it was a certain amount of views AND an ultrasound. Not if there was a reason then an ultrasound. This had me even more concerned. I do get all my reports and I do get the CDs of my scans. In the past I could see what they were talking about. No, I am not an MD, but as you know, most of us get very well versed with our condition when these things are happening. I've had cysts and my reports have been written a certain way and I have also had other issues where I could look up what they were seeing compare and be informed. I understood what nodular asymmetry meant along with the rest of the report, but adding mass-like made it appear far more scary to me.

Thanks for the congrats and I will breath much easier knowing I can get back to other bigger things in life.

Have You Had An Over Zelous Radiologist?

Comments

Categories