Breast mass completely ignored by radiologist for 6 YEARS

Hafdozen · August 2017

Hi all, this is my first post here though I've been reading these boards over the last few weeks. I am so angry, frustrated and completely scared to death right now!

I have been going for pretty regular mammograms at the same place since 2011 (I'm 43 now). Shortly before my last mammo I did a BSE and noticed a lump in my left breast just under the nipple, about the size of a grape. I called my OB and she changed the mammo from a screening to a diagnostic with u/s.

The lump turned out to be a simple cyst, which I was relieved to find, however they wanted to do additional images and u/s on the right for a mass that they had flagged and been watching (this was actually news to me). After the mammo and u/s of that side they told me that while there was a mass there, it had shrunk from the last mammo and to come back in 6 months to check on it again...which was good news.

Something just didn't sit right with me though...I had ZERO knowledge of a mass on the right side that they had been watching...so I requested all historical records from them and picked them up two days later. There is NO mention of a mass on the right side in any of the historical reports. It IS mentioned on the diagnostic they just did and was reported as isoechoic mass measuring 1.6cm with partially marginated borders and has "slowly increased in size" since the last mammo. Bi Rads: 3

I called my OB and she referred me to a breast oncologist. I had my appointment with them and they did their own 3D mammo. When I told them about the other radiologist, they called to confer with them and point blank ask them WHY they told me it shrunk and WHY they sent me on my way. The original radiologist said that it has been there since 2011 and has benign characteristics with no significant changes and they stood behind their assessment. They did not send my full records however, and when pressed they finally sent them.

The radiologist then took a look at the historical records and said it has been growing since 2011!! I included his report below. I'm just FLOORED that the other radiology dept. would just sweep this under the rug. I am also really concerned that two different radiologists have VERY different opinions of this mass.

Of course I'm a complete mess! I cannot eat or sleep...I cannot stop studying my images...I cannot stop thinking about it! My biopsy is scheduled for 8/21 which seems so far away...and then waiting on results. I feel completely defeated already and my gut tells me the results will not be in my favor....there is a reason why I questioned all of this and it wasn't because I felt like everything was hunky dory!. I really want to beg for them to just do the excisional biopsy and lymph nodes and get a step ahead instead of then waiting AGAIN for that.

Ugggh!

Amendment: Additional prior outside exams of December 31, 2012 and December 29, 2011

have been obtained. Best demonstrated on the right cc projection, a

previously described abnormality has progressively increased over that time

period. Biopsy continues to be recommended as previously reported.

Amended BI-RADS: 4b Suspicious abnormality - intermediate suspicion of

malignancy

Below is the original report from the oncology radiologist before he saw the 2011 and 2012 images:

Comparison is made to exams dated: 7/21/2017 mammogram, 6/29/2016

mammogram, and 1/4/2014 mammogram - **** Radiology.

The tissue of the right breast is heterogeneously dense.

Current study was also evaluated with a Computer Aided Detection (CAD)

system.

Tomosynthesis images were obtained as part of this exam.

There is a 2 cm mass in the right breast at 12 o'clock posterior depth.

This is increased in size.

No other suspicious masses or calcifications are seen in the breast.

SUSPICIOUS OF MALIGNANCY

Based on prior outside studies of 7/21/2017, 6/29/2016, 1/4/2014, there is

an enlarging mass in the upper outer posterior breast. An outside

ultrasound of July 21, 2017 demonstrates a partially circumscribed

hypoechoic mass at 10:00, which may correspond to the mammographic

abnormality. Both the ultrasound finding and mammographic finding are of

concern. Recommendation for ultrasound-guided biopsy of the mass

demonstrated by ultrasound with placement of a postbiopsy clip and

postbiopsy imaging. If the ultrasound detected lesion does not correspond

to the mammographic lesion, stereotactic biopsy of the mammographic lesion

would then be indicated. Imaging and recommendations reviewed with ********

The 2 cm mass in the right breast at 12 o'clock posterior depth appears to

have an intermediate suspicion for malignancy.

The patient has been or will be contacted.

NotVeryBrave · August 2017

Wow. I don't know what to say except that I'm so sorry you're having to go through this. I would be super upset and frustrated if it were me as well.

A BI-RADS rating of 4b gives a 10-50% chance of it being cancer. I know that doesn't sound great, but you may be in the benign group. The fact that it has been there this long and hasn't grown faster is a good sign.

Waiting is terrible, but I'm glad you have a plan to do the biopsy and get some answers. Good for you for being your own advocate. And good luck!

dtad · August 2017

Wow! I'm so sorry you are going through this. Try to keep in mind that most breast lumps are benign. They have to prove you have BC before you do. Also please request a MRI. It is the best screening tool for dense breasts. May I also say that IMO being treated at a major university teaching hospital is very important. Good luck and please keep us posted.

Shellsatthebeach · August 2017

wow, they should have informed you of the mass they found, and they were keeping a watch on it. That would have allowed you to make some decisions a long time ago like getting a second opinion. They took that right away from you when they chose to not inform you.

Michelle_in_cornland · August 2017

Was there a reason that you started mammograms in your mid thirties? Family history? Bi-Rads 3 generally does not warrant a biopsy and insurance may not pay for biopsy. Bi-Rads 4 warrants a biopsy and your insurance company should pay for it. By seeking out a second opinion with your documents, the second radiologist in this situation would push for a biopsy. It would be unwise of that person not to order a biopsy. Should it come back as breast cancer, this is a very good site for information and support. Hopefully, you won't need it.

Hopfull2 · August 2017

If it turns out to be malignant get yourself a malpractice lawyer. Good luck with everything. Hoping for good results.

Brightness456 · August 2017

Goodness, you have every right to be afraid and angry and any other emotion you're feeling. BC is terrifying in the best conditions. You need to be able to have confidence in the people called to care for you.

I agree that you should seek out a second opinion with an excellent facility. I switched from a regular hospital to a teaching university hospital and now I have a whole team of doctors that sat down together and discussed my case. Additionally, in one day I had 11 people, including 8 doctors (some students, I think they're called fellows) touch my breast to palpate for tumors and nodes. The fact that all those people couldn't feel anything gave me great comfort. Another advantage with my new team is they answer emails promptly, either with a written response or phone call. I haven't had to sit on my fears and worries.

Please keep us updated and feel free to vent all your emotions here. This place was my anchor in the storm when the fear hit me.

Hafdozen · August 2017

Thank you all for the supportive words! Some days I'm okay, and some days I'm a total and complete wreck...yesterday was one of those days. It is hard not to think and search and read worst-case scenarios...but my mind definitely goes there. My husband has been trying to keep me occupied during any downtime so I stay off the computer!

NotveryBrave: I have read that as well and I'm hoping I'm closer to the 10%...50% sounds scary, but I keep telling myself that the flip side is that I have a 50% chance of being all clear too! Still...I wouldn't mind better odds!

Shellsatthebeach: I think the thing that frustrates me most is that I was never told there was a mass and it was never in the reports. That is my biggest struggle mentally, that I could have possibly investigated this further 6yrs ago instead of sitting around letting it brew. I cannot change the past but I really wish I could! I really pray it's something benign for that reason....6 years is a long time and it makes me ill to think about it.

dtad: The MRI that you spoke of...is that something they can do at a yearly screening along with the Mammogram? The clinic I'm going to now is a satellite clinic of one of the large teaching hospitals in the area. The person I am seeing came highly recommended by several friends as well as my doctor so I'm really comfortable with the entire practice. I just wish I knew about them first! I asked if they also do regular screenings there, as they are listed as a breast oncology practice, and they do. The nurse told me most women shy away from getting them done there because they also are a cancer center and that scares them.

michelle in comland: I started going at 38 because of the breast density. My doctor wanted a baseline because it was hard to determine what was normal density and what lumps were of concern. After that initial mammogram I got a call back for more images because they had nothing to compare it to. They said it was all clear and normal and sent me on my way. I am now finding out that this mass was there on those images. Now that I look back I wonder if I was just stupid to accept their assessment and maybe I should have gotten a 2nd opinion then...I keep kicking myself for that! I've been going to the same place all these years, however 6 different radiologists have looked at my films in that time and none of them felt it was suspicious enough to warrant a biopsy. I keep clinging to that as a positive sign, however they are "general" in that the center does all kinds of imaging studies so they do not solely focus on breast studies. The radiologist I am seeing now ONLY does breast studies at the oncology center and he is concerned, which then makes me nervous! This is such a roller coaster!

Hopefull2: We are considering reporting the center to whatever medical boards they report to...something I have to look into. My current doc told me in so many words that she has already started the ball rolling on that. It kills me that when you break your leg, they show you the films and where they see a problem, but when you go for a mammogram (at least at my last place) it's like visiting Oz....he's behind door #1 and never comes out to speak to the patient. My OB tends to follow radiologist reports as written, because she feels that they are the experts in reading those images. She goes over them with me and she has said they have never given her reason to recommend a follow-up. Thankfully she will no longer be recommending her patients to this radiology center, so at least something positive has come from it.

The only blessing here is that I am pretty busy this week and next. My Dad has follow-up scans to make sure his Kidney cancer has not returned (he only has a partial kidney left but he's been cancer free for a year!), my oldest son is going away to school so we are busy packing him up, and I start back to school (5th grade teacher) this coming week..l'll have a lot of distraction and not a lot of downtime to think!

Michelle_in_cornland · August 2017

michelle in comland: I started going at 38 because of the breast density. My doctor wanted a baseline because it was hard to determine what was normal density and what lumps were of concern.......... .I keep kicking myself for that! I've been going to the same place all these years, however 6 different radiologists have looked at my films in that time and none of them felt it was suspicious enough to warrant a biopsy. I keep clinging to that as a positive sign, however they are "general" in that the center does all kinds of imaging studies so they do not solely focus on breast studies. The radiologist I am seeing now ONLY does breast studies at the oncology center and he is concerned, which then makes me nervous!

With 6 radiologists concurring that your tissue was benign, I think that is a pretty strong positive sign on your part. The radiologist at the breast center has to look at everything under a microscope, that is their job. The other 6 radiologists have seen plenty of cancer in all areas of the body, and I would bet are well versed in spotting every suspicious looking area. I hope that you have a peaceful beginning of the school year and get your son off to boarding school/college with a positive vibe.

MTwoman · August 2017

I agree with Michelle_in_cornland, if 6 separate radiologists had the same opinion, I'd take that as a good sign that you'll get b9 results. I'm not sure where NotVeryBrave got those statistics. From the source that I typically go to, I find " A birads 4b has 36% chance of malignancy." Read more here: http://breast-cancer.ca/bi-rads/ If it makes you feel any better, there are 'things' that grow in breasts that aren't bc. Also, 70-80% of biopsies come back B9.

Given the vast differences in opinion, a biopsy is the appropriate step. " I really want to beg for them to just do the excisional biopsy and lymph nodes and get a step ahead instead of then waiting AGAIN for that." An excisional biopsy and especially any lymph node (SNB) removal would not be a good first step. There are risks that come along with those interventions that far outweigh the risk of an unidentified mass. The risk of lymphedema is present, even if they just remove 1 lymph node. I know that this has come as a surprise and that you are scared and angry, but take the first step to get a biopsy and pathology results before rushing too far ahead. Hoping they get you scheduled quickly so that you can get your results back quickly as well. Good luck for b9 results.

Hafdozen · August 2017

So biopsy is tomorrow. I'm not nervous about the actual procedure...but I know I will be a complete mess waiting for results.

Dropped my oldest off at college today and still waitng for my dad's cancer screening results which has me on edge.

I am going to work before I head in for the biopsy. Is it reasonable to think I could go back to work afterwards? I just cannot be alone with my thoughts too long without having a panic attack.

Rrobin0200 · August 2017

I was able to go back to work after my biopsy, so I'm guessing that you will be able to as well. Being alone with your thoughts is awful. If you're allowed to, I definitely suggest going back to work. It will keep your mind (somewhat) off the biopsy results and will pass the time. Make sure toask when they expect the results to be in. Will they call you, or will the doctor call you? Knowing these things helped the anxiety a bit for me. Hoping for B9 results. Please Let us know.

scar88 · August 2017

I'm new to the boards but just came across this! So glad this will be done tomorrow and no more waiting. Praying all is well.

Please keep me, all of us, posted.

Scar

Hafdozen · August 2017

All went well with the biopsy today. Never felt a thing which was nice. They were able to get the biopsy from the right spot so I didn't have to go through the stereotactic method.

The doc said she may have results by tomorriw, but Wednesday at the latest so at least I don't have to wait long.

I really want the result, but I don't! Ugggh. ..answering the phone will be hard!

Hafdozen · December 2017

Well the saga continues

I had the core needle biopsy done in August and got the results back...benign. I was relieved to say the least. The path report read:

***

Breast (Right Breast Mass 10:00), Needle Core Biopsy:

Scant fragments of benign breast fibroadipose tissue.

Atypical hyperplasia and malignancy are not identified.

See note.

Note: Multiple slide levels have been examined. Recommend clinical and radiologic correlation concerning specimen representation of the target lesion.

****

I had a clip placed at the time of biopsy and a mammogram to ensure they got the sample from the right spot.

I had a follow up scheduled for 3 months, which was yesterday. They did a mammogram to get a new baseline after all was healed from the biopsy. The spot has not changed or grown according to my surgeon, but she said the radiologist wants this excised and and biopsied. I am thinking he doesn't agree with the benign results? Or is it possible they didn't even hit the target at the core needle bioosy?

So again, I wait and worry. This spot has been there for 6 years which again, has my anxiety through the roof!

The first available surgery date is December 8th, so another long wait.

I am scared to death they will find cancer....because if so, it has not been caught early. I have been having odd symptoms over the last few months that I attributed to the fact that my thyroid meds needed a major readjustment, but now I can't help but think this is cancer and it has spread.

The only silver lining is that I will probably lose the 10lbs I needed to...I cannot eat or sleep

Hafdozen · December 2017