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Normal cells a surprise so they want to do surgery

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trudym
trudym Member Posts: 12
edited January 2022 in Benign Breast Conditions

Hi everyone.  I am going for a second opinion next week but was hoping to "speak" to someone who has had a similar experience.  An area of architectural distortion was found on mammo and I was called in for a repeat followed by an ultrasound.  I was told that I needed a vacuum assisted biopsy.  I was warned that it was possible that they may find non-malignant cells - either a radial scar or sclerosing lesion - and that would mean that surgery would be required even though actual cancer was not present.  But when my PCP got the path report first and called with the news that it was totally normal stromal fibrosis and fibrocystic changes I was quite relieved.  I have had fibrocystic condition forever (age 53) and have had yearly mammos since I was 25 as a result with never any issues.  

However, the pathologist called 15 minutes later and said that they were certain from the ultrasound and mammo that they would have found something NOT normal and therefore he did not believe the results.  He recommended that I have the entire site removed which, because they could not get a good view due to the distortion, he was "guessing" would be "somewhat larger than a golfball."  Oh, and it is at the top of my breast so that is going to look just lovely, huh?  When I suggested waiting 6 months and doing a repeat mammo and ultrasound he insisted that surgery was absolutely necessary because cancer in middle-aged women tended to be aggressive.  I tried asking more questions because this was making NO sense and he got very impatient, said this simply had to be done, and handed the phone to the nurse to schedule the surgery.  Frankly, he was a jerk and a bully and I do not respond well to that.

I did research on "discordant" findings between what they expect to find from the imaging and what they actually find on biopsy.  Apparently there is a false negative rate but it is very low.  I just can't see disfiguring myself when there is no basis.  I have absolutely no risk factors other than being unable to carry a child to term and having 3 miscarriages as a result.  Other than that, nothing.  I am seeing another breast surgeon next week who will have all of my films, ultrasounds, and biopsy.  

Can anyone relate?  I am worried but trying to keep my head and make sense of all of this.  Any thoughts or personal experiences would be greatly appreciated!

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  • ingerp
    ingerp Member Posts: 1,514
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    Have you met with a breast surgeon? A pathologist is not the one to recommend (or not recommend) surgery.

  • moderators
    moderators Posts: 7,913
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    Dear trudym,

    Welcome to the BCO community. We are sorry that these breast changes brought you here but glad that you reached out. You may want to check out this page about Common Imaging Questions in the Not Diagnosed but Worried Forum. You also may want to check out the Interpreting your Report thread in the same forum. We hope you get some answers with your second opinion. Keep us posted.

    The Mods

  • trudym
    trudym Member Posts: 12
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    Thanks so much for replying!  I have not met with a surgeon yet.  The appointment made by the pathologist's nurse is next Wednesday and my second opinion is next Monday so I will actually have the second before I see him.  I refer to it as "second" because according to the referral I can access on my "patient portal" the first is a pre-surgical consult specifically stating that the area needs to be excised due to discordant findings from imaging on core-needle biopsy.  Apparently walking in to his office it is a foregone conclusion that I am there for surgery as recommended by the radiologist and pathologist.  That makes about as much sense to me as my dentist giving me a manicure!

    The woman I am seeing Monday will have literally everything in front of her by the time I get there and the nurse I spoke to who took my history said that the first thing they will do is an ultrasound right in their office to see the architectural distortion for themselves.  That made me feel much more confident.  That and the fact that they actually seemed to hear me when I spoke!

    I am sorry but I don't understand a lot of what I read about your treatments.  How are you?  It sounds like you have been through a lot so I really appreciate you responding to my question that may turn out to be nothing.  I hope you are doing well!!!

  • trudym
    trudym Member Posts: 12
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    Thank you to the Mods for your kind welcome!

  • ingerp
    ingerp Member Posts: 1,514
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    Thanks Trudy—that’s very sweet. I’m good—looking forward to my last Herceptin on May 17th, which will be the end of active treatment for me (at least this time around!). And it’s good you don’t know what it’s all about!! None of us wanted to become experts in this area but it comes with the territory. Fingers crossed you never get very far down the path and can stay blissfully ignorant. :-)

  • trudym
    trudym Member Posts: 12
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    I am glad that you are nearing the end of your treatment.  I hope that means you are feeling good or will be feeling good very soon!  Thank you for your good wishes.  I also hope that I can remain blissfully ignorant in this area.  I would be lying if I said that I was not worried and wishing for more certainty.

    Your post made me think though.  I don't think there are many people who manage to get through life without becoming an unwilling expert in some area that they never imagined.  Of all the people I have known who know far more than they ever wanted to about loss, hardship, and loneliness, I don't think any of them saw it coming.  I know my own "specialty", miscarriage and childlessness, caught me completely by surprise.  They say that we are not given more than we can take.  I don't know if that is true or not but I know that we all do what we can.

    Thank you again for replying.  I wish you all good things and many happy days ahead. 

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    Trudy, what was the BIRADs rating on your imaging prior to the biopsy? If it was a BIRADs 5, that would indicate that the Radiologist accessed a 95% likelihood of cancer. In that case, a totally benign result would certainly be discordant and would always lead to a recommendation to do a surgical biopsy. If your imaging was given a BIRADs 4, then a benign result is more expected so following up with an excisional/surgical biopsy would be more unusual after a benign biopsy.

    I'm surprised that the Pathologist is the one who called you. That seems strange, since Pathologists look at the tissue under the microscope and don't usually get involved with decisions related to imaging and next steps after biopsies. I would have expected you (or your PCP) to hear from the Radiologist, as normally the recommendation for a surgical biopsy should come from the Radiologist - that is their job and area of expertise. In fact, the breast surgeons I have dealt with never gotten involved with imaging and have relied entirely on the recommendation of the Radiologist.

    So from that standpoint your situation is nothing like "a dentist giving you a manicure" if in fact the Radiologist recommended the surgical biopsy and the surgeon follows up on this recommendation. That would be normal, with each doctor working within his/her area of speciality andexpertise. That said, if the original imaging was a BIRADs 4, and if no high risk conditions such as ADH, ALH or LCIS were found in the biopsy, a second look at the imaging is a good idea before deciding to head into surgery.

  • trudym
    trudym Member Posts: 12
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    Hi Beesie.  It was a BIRADs 4 and all that was found in the biopsy was stromal fibrosis/fibrocystic change.  Totally normal tissue on all 5 samples.  It was definitely the Pathologist that called but he had clearly spoken to the Radiologist.  When I said that I did not understand why I would need surgery when the biopsy showed normal tissue he referred to the Radiologist and said that he knew the Radiologist had told me it was possible I would need surgery even if I got a non-malignant result.  Which was true but that was if it was questionable Radial Scar or Sclerosing Lesion.  Not straight up normal tissue.  Obviously they had decided on surgery for me and that was that.  Watching and waiting 6 months or another needle biopsy in another area was not a potential and he was getting annoyed at my questions when I wanted to know what the decision was based on.  He was especially defensive when I asked how they would know how much to remove when they were having trouble finding and "holding" the area of distortion on ultrasound.  I thought that was a reasonable question!  I will be looking forward to a second opinion.  

    I went back into my "patient portal" and the appointment they scheduled for me with the surgeon is listed as "pre-surgical - excisional biopsy."  The path report says "discordant findings - recommend excisional biopsy."  Apparently the Radiologist and Pathologist are in agreement that I have to have surgery but can't tell me why other than they expected different results.  It makes less and less sense to me the more I think about it.

  • ingerp
    ingerp Member Posts: 1,514
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    Trudy--I had ALH about 10 years ago and an excisional biopsy was recommended (the procedure is the same as a lumpectomy). My reading said there was about a 20% chance of finding something uglier (DCIS, IDC) in the area. I mulled it over quite a while, and my sister is the one who convinced me to go ahead have it done. I did not ask then how large an area they took (I assume there is some standard size around the clips) but I can tell you it's a really straightforward, simple procedure with almost no recovery. Many women don't even use prescription pain meds afterwards. It sounds like maybe the radiologist has reason to believe your probability is > 20%? It's up to you but I'd want to know (particularly given my history since).

  • trudym
    trudym Member Posts: 12
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    I definitely do want to know.  What is stopping me from feeling confident in the recommendation for surgery is the reluctance to explain to me exactly why other than "standard protocol when there are discordant findings."   They will only say that the mammo and ultrasound look suspicious but will not say what they suspect they will find.  When I questioned the difference in the cells that I was told would signal the need for surgery v. what was found I was brushed off and told that it was irrelevant what kind of cells were retrieved.  That led to me asking what the point of the biopsy was then in the first place and at that point they got really irritated and said I just needed to trust them.

    Bottom line is that I don't treat clients like that and I don't like it for myself.  It is their life and I answer their questions until they are satisfied.  If I don't know the answer I am confident enough to say that I don't know (no one know everything!) but I will find out and get back to them.  I expect that kind of respect from experts that I consult.  I want more than "trust me honey" and a pat on the hand before someone cuts into me.  I swear I felt like I had been time-warped back to the 1980's when we were still having to fight against that crap  just to get birth control pills when we didn't have a wedding ring on our finger and I was not impressed.

  • Mary-mary
    Mary-mary Member Posts: 4
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    I'm now trying to get recent research on Usual Dctal Hyperplasia, which is scant at best and if surgery is warranted. But, if I were in your situation, I would get a second opinion if I felt I was being pushed into surgery that was not explained with a logical reason for it. And, do you really want to go through surgery and followup care with this guy?

  • minustwo
    minustwo Member Posts: 13,078
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    Mary-Mary - This thread is from May 2019 so definitely not current. It's unlikely that these members are still posting, but they've certainly resolved the issue. If you are facing a similar problem, you need to read through all the posts on this thread. Then I would ask for more testing & scans.

    If you go to "my proflle" you can enter your diagnosis & tests to date so people will be better able to respond to your posts.

  • trudym
    trudym Member Posts: 12
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    Hi mary-mary -

    It is funny that this popped up in my email. I just had another follow up mammogram a couple days ago and my architectural distortion has apparently disappeared. The mammo is classified as BIRADS 2 with no changes to the small calcifications that have existed for years. I am so relieved that I did not bow to the extreme pressure put on me to have surgery. It seems that everything stemmed from one radiologist that made a determination and, although no further tests supported his findings, everyone else went along with it "just in case." If I had not insisted on waiting to see if there truly was a problem, I would be have had unnecessary and disfiguring surgery for nothing. I have an appointment with the surgeon scheduled for Thursday and I am not sure if I should go or not. It seems pointless other than to express my frustration for what I have been through for the past 3 years. But what will that get me? I do not want to continue with her office. She is supposed to be one of the best breast specialists in the area but, should I ever have an issue in the future, I would seek out someone else as I have no confidence in her. I will likely cancel the appointment.