Appealing to moderators/medical experts/other posters

I know Johns Hopkins does reviews on pathology etc. , I wonder if this would also be a service they provide. I'd also say if you want to submit a question to their breast cancer site, I'll post the link, you will get a response within a day or so and maybe they can yay or nay it. I think they may have a word limit. They may even have some posts on 2nd opinions. http://www.hopkinsbreastcenter.org/services/ask_ex...

Hi Concerned, I am sorry you are not getting the answers you want to get. I am not aware of the details of your case but from someone who has been through the various phases of diagnosis and treatment let me assure you that what was on your mammo and/or other scans one, two or three years ago does not matter much for your situation today: you either have cancer today or you don't. You can also have a pre-cancerous condition. Cancer or pre-cancer can only be confirmed by biopsy or surgical biopsy in some cases.

Radiologists see a picture and their findings always have a margin of error. If a scan was read and assessed in accordance with standards in force at the time of the exam there is no ground for implying any medical malpractice. In order to initiate a medical negligence or malpractice case one needs to show 1. significant harm to one's health, and 2. sub-standard medical care. It looks like you had no harm and if I am reading it correctly, your diagnosis is benign. I don't see any indication of sub-standard medical care.

If you have any grievances with regards to bedside manners of the radiologists or other medical professionals you had appointments with, you can always file them with the hospitals those professionals are associated with and they will be reviewed.

If you are still not satisfied with the answers and want to have your films reviewed, in addition to the above mentioned institutions I am sure Dana Barber in Boston do that too. However, I don't think you should expect a definite answer of any sort from any such reviews.

Best.

I found imaging and the terminology used in the related reports to be a rather opaque from my perspective as a patient.

In addition, the interpretation of imaging can entail some exercise of judgment, and in cases that are more challenging to call, there can be reasonable differences of opinion.

If you have not already obtained the complete written reports of the radiologists (not some top-line patient letter) for all imaging from each facility, including details regarding the imaging modality, nature of images taken, description of what was seen, Bi-RADs rating, impressions, recommendations, etc., please request these for your review and records. These reports may at least clarify what the Radiologists reported in your official medical records, although I agree that your most recent imaging results are probably the most relevant for current decision-making, as well as the recent biopsy findings.

(As best practice, also request the complete written reports of the pathologist from all biopsies and surgeries for your review and records.)

Doctor-patient communication can also be a challenge.

(1) "Incomplete" might have different meanings in different contexts

"Incomplete" could mean different things in different contexts. For example, under the ACR Bi-RADS reporting system for mammography, a Category 0 assessment indicates: "Category 0: Incomplete – Need Additional Imaging Evaluation and/or Prior Mammograms for Comparison." The typical management is to "Recall for additional imaging and/or comparison with prior examination(s) [if available]."

In the context of the Bi-RADs reporting system, a reference to an "incomplete" assessment could simply indicate that prior images are not available for comparison (or were not provided to the second institution), and that therefore additional imaging evaluation is recommended, before it is appropriate to render a final assessment (Category 1 to Category 5).

My relatively superficial layperson understanding is that the images collected as part of a "screening" mammogram can differ from the type of images taken as a "diagnostic" mammogram in terms of extra views and/or the vantage point of such views and/or magnification. It is possible that if certain view(s) and/or magnification(s) were not taken (e.g., due to a difference in judgment as to what views and/or magnification might be useful or desirable), that the results as a whole might be characterized "incomplete" in that sense. Additional images might be requested or recommended in such case.

The above examples would be a different question from whether all the available images taken at one facility are physically included on a CD provided to another facility or not.

(2) Focusing on obtaining timely care

Re: "Had I known there was no change in three years, my decision about the biopsy may have been quite different. And now I am faced with surgery . . "

That you might have decided differently if you had had a different understanding seems potentially moot, considering the results of the biopsy. In particular, the biopsy has led to a recommendation for "surgery" (possibly a wide excision to further sample the area in an effort to exclude the possibility of associated malignancy???). The recommendation for surgery can be seen as a change in management due to the biopsy findings, indicating that the biopsy has provided valuable information.

At this point, timely pursuing the recommended surgery with this or another breast surgeon (if you prefer), and/or (if you have doubts about the recommended surgery and/or would like a second opinion pathology review of biopsy slides) timely obtaining a second opinion as to whether surgery is the appropriate next step in light of the biopsy findings seems like a priority.

Best,

BarredOwl

Re: "Oh, also doesn't explain why a radiologist doing U/S (which was supposed to be unbiased 2nd opinion) tells me verbally I have an absolutely completely clean scan with no masses or even cysts, and then writes a report saying I had "abnormal finding with prior seen mass unchanged"!"

My guess would be that there was indeed no abnormality observed on ultrasound, and that reference in the report to a "prior seen mass unchanged" refers to an abnormal finding seen on prior mammography (which was unchanged per your above post) and which was presumably the impetus for the ultrasound. If so, then he was not covering his ass in referring to the prior reported mass. He was making clear for the record that he was aware of it, but could not find anything that corresponds to it on ultrasound.

Unfortunately, imaging modalities "see" different things, and an area of concern seen by one modality (e.g., mammography) may appear normal by a different modality (e.g., ultrasound). Reports will often refer to an abnormal finding detected by one modality (e.g., mammography), which documents that the Radiologist was aware of the abnormality and its location, and yet found nothing that correlates with it using the second modality (e.g., ultrasound).

Re: ". . if that is what they meant by "incomplete". . . "

Understandably, it sounds like you did not get a chance to request clarification, such as: "What do you mean when you refer to an "incomplete examination"? In what way is it "incomplete" and what do you recommend to address this problem?"

That might have helped narrow the possibilities. But without additional information and clarification, you are left to work through all the different interpretations and various possibilities. As far as trying to seek clarification of all of this, do you think that resolution of these questions is necessary to your care? Or does it appear that these questions or concerns could be deferred until after the recommended surgery, if still of interest?

Because again, if the most recent imaging and biopsy findings are sufficient to support an excisional biopsy, then that should be your current priority, so as to assess whether there may be any cancer in the vicinity of the radial scar, and if so, obtain timely treatment without unnecessary delay.

See also the helpful information that Beesie's posted in your other thread.

Best,

BarredOwl

People here have tried to help you, but I think it may be time to take this back to your medical professionals with a calm demeanor.

We here have cancer and are fighting our own daily battles.

Concerned~~ I know you are concerned about getting a non-biased opinion of past and present tests. If I was in your situation I would move forward and get the excisional biopsy so that I know what I am dealing with right now. Getting the excisional biopsy will give you a clearer diagnosis of your breast concerns. They will do pathology on the tissue removed. Hopefully those results will be completely B9 without any other issues. If they do find something else then either they got clear margins or they didn't. The goal of an excision is to get a more precise diagnosis and not so focused on getting clear margins but often times they do. if they do not then you might need another more refined excision. Either way, you will know exactly what you are dealing with after the excision and be able to focus on that and the plan of care that will be recommended at that time. You can always get a second opinion when you have those results.  Try not to worry about the multitude of possibilities at this point ...it will drive you nuts. God luck.

Um, I just got a second opinion on mammograms and ultrasounds from MSK and they confirmed that I need a biopsy. Now to MSK to see a consultant then the type of biopsy they pick. I am going to a local doctor affiliated with another national cancer center to get a second opinion on the type of biopsy.

The latter doctor also has promoted a blood test for breast cancer, that I will ask for.

I do not understand what the OP is talking about. I have several (many actually) other medical conditions, and many surgeries, and the thing I have learned is that medicine can be an iterative process if there isn't a definite positive.

I just had a local radiologist tell me "you need a biopsy" then within minutes say "no, you can just have a follow-up mammogram in six months". My husband said, if there is a suspicious area that may need a biopsy (or not...), why would they not redo a mammogram sooner? Or do a MRI?

Frankly, again based on my experience in other medical realms, it is up to you to decide which opinion you go with if medical opinions conflict. As for malpractice, doctors are human, and this forum notes correctly that breast cancer cannot be diagnosed from scans. The area that is of concern for me has been present in various forms for over 10 years. I'm getting a biopsy, and that's about that. "faced with surgery" - well, I've had a bunch, and if you have other medical conditions, I'm surprised you haven't either. Good luck to you on your biopsy.

PS - maybe I am biased because MSK saved my spouse's life.