Misdiagnosed
Please, bear with me, as this will be long and involves possible medical neglect/nonfeasance.
I had my regular mammogram about a month ago and it came back normal. However, my PCP called me and said I have dense breasts and should get an ultrasound. This was my third mammogram and the first time I heard I had dense breasts. It is a law in my state that the imaging center has to inform you that you have dense breasts. They are supposed to send you a letter with your mammogram report (although I never an act report, just a letter saying it was normal) I never got any such letter on my previous two mammograms. I decided to wait and see if I got a letter with my current mammogram report (again, not an actual report) before saying or doing anything about it. In the meantime, I had the u/s done at the same imaging center and the radiologist came in and said I had a fibroadenoma (mammogram did not pick this up) and reccommended that I come back for an u/s every six months for the next two years to see if it grows. If it doesn't grow, then I can go back to yearly ultrasounds, if it does grow, I would need to have a biopsy. I asked why I needed to wait and why not just biopsy it now? He said "well it really just looks like a tiny fibroadenoma and we never want to do a biopsy unless it's absolutely necessary." My PCP got the report and immediately ordered a biopsy because I have an anxiety disorder (I'm on medication for it) and he knew the watch and wait approach wouldn't work for me. He sent the order to the same imaging place, they called to schedule my biopsy and a technician talked me through the process, it was going to be a core needle biopsy and she did a very good job of explaining it to me. The imaging place called me the day before my biopsy and cancelled it because my doctor ordered the wrong kind of biopsy. I told her that the technician I spoke to explained the core needle biopsy to me and that from my understanding that was the correct type. I asked her what my doctor ordered and she said, "he ordered a biopsy but it says something about an FNA and I don't even know what he ordered." I know exactly what he ordered, it wasn't a FNA, it was a core needle biopsy. She then repeatedly told me that the radiologist had already discussed with me waiting the six months and coming back and asked (condescendingly) if I remembered that conversation. I told her I did remember that conversation, but I never agreed to that course of action. She said, "well the radiologist has been doing this for a long time and you should really take his advice." I told her that the radiologist saw me for 2 minutes, my PCP has been my doctor for 10 years so if he orders a biopsy, he must know something the radiologist doesn't know, like that I have severe anxiety and watching and waiting would only make my anxiety worse. She was unmoved and told me that my PCP would need to call the radiologist to "straighten everything out." There was nothing to straighten out, my doctor ordered the correct biopsy and the radiologist decided to cancel it because I was going against his advice. I told the nurse that wouldn't be necessary because they have lost my business, I then asked her to transfer me to records and I requested all of my records from them. I picked them up the same day and my last two mammogram reports said my breasts were dense radiographically. The letters I got just said my mammogram was normal and didn't mention anything about me having dense breasts which, again, is the law in my state. It's important to note that my first two mammograms were ordered by my ob/gyn and this last one was ordered by my PCP. I never got any report from my ob/gyn either. My PCP sent the biopsy order to a different imaging place and the diagnosis is intraductal papilloma and recommended that I have it removed because, although it's benign, it is a "high risk precursor for cancer." I see a BS on Tuesday. At this point, I have no trust in the first radiologist (with good reason) and I'm concerned he may have missed some things. When I got the scans back, there were two other areas that were measured and with color that were not mentioned in my report. Will the BS, automatically review all of my ultrasound pictures or is that something I specifically have to request? My fear is that he will just go off of the biopsy and not even look at the ultrasound pictures to see if something was missed. Is an MRI standard procedure before this type of surgery? If it isn't, should I request one? Also, do I have grounds to file a complaint against the first radiologist, imaging center and/or on/gyn? They never informed me that I have dense breasts,. I was misdiagnosed, they cancelled my biopsy for no reason, they called me about problems with my doctor's orders when they should've called my doctor, they were dismissive of my concerns, condescending and rude. I might be overreacting to this but I'm quite nervous because I have no idea if breast cancer runs in my family or not. My mother was adopted and died young (not of cancer) so I have no idea if she would've developed cancer later in life or not. The only person who knew the identity of my biological father was my mother and she took that secret to the grave. If you've read all this, thank you. Any advice would be greatly appreciated.
Comments
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You won’thave to reexplain everything if you just post this in your original thread, instead of starting a new one. You will also not need to remember to update multiple threads as things go along.
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My BS wanted the mammogram and ultrasound (but not the biopsy) redone at the hospital where I was having the surgery. The radiologist at the hospital saw more on the ultrasound than what was originally reported so then the BS wanted an MRI. I think that you should talk to your BS about your concerns and tell him that you want an MRI.
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I don't think a radiologist can change a doctor's order. My PCP ordered my core needle biopsy when he saw my pictures. He said he was skipping the fine needle because it may be inconclusive. He said my report and pictures looked like his wife's and hers was cancer and he didn't won't me to have two procedures. He sent me to a surgeon and he did the biopsy. I was really lucky my doctor was living the trauma of breast cancer
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whoa wait. Why are you jumping to an MRI? If a breast surgeon thinks a biopsy is worth your while you can go to a different radiology center and have a biopsy. An MRI for dense breasts with no biopsy is NOT standard and that wont be your progression.
I can understand your frustration but this is way more about your anxiety at the moment than your breasts. Follow up, find a new radiology center, but in the meantime, check with your PCP about your anxiety. This is an outsized reaction to what has happened. It sounds like maybe the code for a fine needle aspiration (FNA) was entered instead of the one for a core needle biopsy and your physician just needed to re-enter a request for a CNB. At radiology centers, they cannot do the procedure until its ordered by your physician. It really sounds like the wrong procedure was accidentally ordered and they just needed your doctor to reorder the right one.Nothing indicates the radiologist just canceled it to spite you.
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I already had the biopsy at a different imaging center (I'm pretty sure I said that) it came back as intraductal papilloma. So the original radiologist misdiagnosed me and the imaging center was negligent in not informing me that I have dense breasts. The core needle biopsy was what my doctor ordered and what the technician explained to me, after looking at said orders. When they cancelled it, they made it seem like I needed a FNA instead of the core needle biopsy my doctor ordered, which would have been wrong as my mass is not palpable. Also, if they had a problem understanding my doctor's orders, they should've called my doctor (not me) to clarify, instead of just automatically canceling the procedure. If you had heard the condescending manner in which the nurse spoke to me, you would suspect that they cancelled it because I was not following the radiologist's orders too. Because of their mismanagement of my care, I do don't trust the original assessment of my ultrasound, which is why I'd like a second opinion. I see a BS on Tuesday and will ask him all of these questions. I was just curious what the normal process is and whether or not I have grounds to file a complaint against the original imaging center and radiologist.
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Also the radiologist didn't change my doctor's orders. The radiologist was the one who was going to perform the biopsy and he cancelled it all together.
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I would file a complaint asap. If it were me.
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Well if you get a lawyer to take the case, let me know, because I was flat out misdiagnosed when I actually had cancer and didn't get the "You have dense breasts" letter either.
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I have had mostly good experiences with radiologists, but I did have one bad experience where an MRI was ordered by my MO. It was approved by the breast radiologists, approved by my insurance, and then scheduled. When I arrived, the tech had a question about which protocol to use since I'd had a mastectomy, so she called the radiologist on duty (not on site...at a different clinic). The breast radiologist was not there, and this radiologist refused to answer the question without me having a mammogram and ultrasound first (even though I'd had a mastectomy). To make a long story short, 2.5 hours of the techs, clinic director and this radiologist literally shouting back and forth, having to go back to my MO to cancel the MRI request, order an ultrasound and mammogram, have everything reapproved by insurance, they finally did mammogram, ultrasound, and MRI. The report came back with left and right reversed as far as where the problem area was, and the breast tissue came back as fatty.....I do not have breast tissue. The report from mammogram was copied and pasted and used for the ultrasound report too.So.....like any other occupation, there are bad apples. The clinic director where I was personally apologized, bought me lunch., etc. I did follow up with an immediate letter to the clinic director and breast radiologist, who both apologized (in the phone call, the exact words were, "I'm sorry he got in a pissing contest with the other doctors" which is exactly what happened......egos do get involved sometimes, as seems to have happened in your case). Despite that, it took 3 requests to have the report amended to reflect the correct breast. So.....what I would do, is what you did as far as taking your business elsewhere, but I would also write a letter/email to the Clinic director and ask for an explanation of what happened. Ask what provisions are in place to assure women are notified, as they should be by law in your state, that they have dense breast tissue, and I would also let the referring doctors know your experience. If they get more complaints, they may refer people elsewhere. Do know that 99% of radiologists are great. Sorry you found someone in the 1%, but it sounds like you're in good hands now.
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- WC3, I don't think I have a case to sue for malpractice, because no harm has come to me because of the incident. I was just going to file a complaint with the state medical board. Have you tried getting a lawyer to look at your case? I would think you have s good basis for a lawsuit.
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KBee, the problem is that the radiologist who misdiagnosed me is the owner of the imaging center. Complaining to him about him probably won't help.
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sugarfoot75:
I did some light lawyer shopping before I started treatment and have only recently recovered enough to take that on again, which I will be doing tonight.
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Good for both of you advocating for yourself and getting to the right people to help you. sometimes we shouldn't take no for an answer. We have to listen to our intuition. Second opinions are always a good idea when ever possible at every stage of the game.
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What category density you do have? In many States only density category 4 (Extremely Dense, >75% density) must be reported to the patient. Women who have category 3 density (Heterogeneously Dense, >50% - 75% density) are often told they have dense breasts, but this level of density may not need to be reported. Density levels are also somewhat subjective; what one Radiologist might assess to be category 4, another might assess to be category 3. I've flipped between a Cat.3 and Cat.4 for years, sometimes even with the same Radiologist.
Since a diagnosis can not be made from imaging alone, since imaging is an imprecise science that relies on the expert judgement of the Radiologist, and since 2 Radiologists might not always agree on what they see in the imaging, I would not say that you were misdiagnosed. The Radiologist believed that the small mass seen on your ultrasound had the appearance of a fibroadeonama, and recommended a follow-up plan. Upon having a biopsy, it turns out that the mass was an intraductal papilloma, another benign condition. My understanding is that usually intraductal papillomas cause discharge; you haven't mentioned this as a symptom and perhaps this is why the Radiologist felt that the small mass was more likely to be a fibroadenoma. Just speculating there, but regardless, incorrect assessments of imaging sometimes happen.
I can't comment on the biopsy fiasco; from your description, I don't understand what happened or why.
At this point, you've had the biopsy and you have an appointment scheduled with a Breast Surgeon to discuss an excisional (surgical) biopsy, which will hopefully confirm your diagnosis to be a benign intraductal papilloma. You can certainly ask the BS if additional imaging (another ultrasound or an MRI) is advisable or if another Radiologist is available to review your ultrasound imaging. My advice is that rather than focusing on what has already happened, focus on what's ahead, which hopefully will resolve any concerns you have.
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I have category 3 density. In my state category 3 and 4 require a letter. My last two mammograms said category 3 and I did not get a letter either of those times. Central intraductal papillomas usually present with nipple discharge. I have a peripheral intraductal papilloma, they do not cause nipple discharge. Also, peripheral papillomas usually present as multiples, which is another reason why I am concerned that something was missed on my ultrasound, only one was found, which would be unusual.
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it just sounds like incompetence and you weren't really diagnosed with anything? It sounds like there was confusion about what type of biopsy to do but this is somewhat typical bureaucratic misunderstandings. I never got a letter in the mail due to my dense breasts, they saw something suspicious on mammogram and then wanted an ultrasound. Write them a bad yelp review if you want to let off steam. You probably won't get anywhere with lawyers and life is too short, move on and appreciate it. I do understand. your frustration though, I had a radiologist mess up my biopsy and not get the right tissue and it was a huge headache and pain. Shit happens.
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I wasn't planning on getting lawyers involved, I was just going to file a complaint with the state medical board. I think the board needs to know when medical facilities are breaking the law. Maybe then they'll fix it and other women will be spared the incompetence.
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First, let me say I'm sorry about the fiasco you went through, Sugarfoot. Your anxiety is certainly warranted considering you're adopted and have no access to your medical history. Of course you'd be anxious.
I had an especially unprofessional experience with a radiologist who swished my core biopsy tissue around in a jar and told me I had nothing to worry about because he had “twenty-two years of experience" and he knew “what breast cancer looks like."
Imagine my shock when he called me on my classroom phone later that week, in front of my students, to tell me he was sorry he was wrong and that I had breast cancer.
Talk about a nightmare.
All of this occurred when I found three palpable lumps less than two months after a ‘clean’ mammogram.
Well, I did write to the CEO to file a complaint, not so much for me, because it was too late to make a difference in my case, but more for them to know how outrageous his conduct was in order to prevent it from happening to another woman.
It's hard not to be angry about incompetence and disrespect and unkindness anywhere in the world, but it's especially infuriating when it happens in the medical community.
Your feelings are valid. You deserved better. After you get an actual diagnosis, you may find your spirit will settle a bit and you will celebrate your tenacity and ability to advocate for yourself.
I send you strength in the meantime.
Tammy
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KBeee:
That's crazy.
My sister has had two CTs and in the reports, the radiologists noted a healthy appendix...she doesn't have an appendix. She had appendicitis when she was a kid and had it removed.
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Sadly we have to do a lot of extra work/research to keep doctors in check. I always read any report that's available online about any appointment I have. Doctors write the wrong things in there often.. or twist my words etc. It stinks..
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Heh. Unrelated to BC, but years ago, when we lived in SW Texas, local hospital one time added on the bill for my blood work "PSA test" and billed my ex's dr visit as "neonatal care".
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Doctors are often wrong! I had all the signs and symptoms of a Ductal Papilloma, including discharge, and I also had 3 of them removed in the past. My family Dr. thought that maybe an antibiotic would do the trick but I wanted it removed. She sent me for a Mammogram and an Ultrasound. All looked fine. I was sent for a Core Biopsy during Ultrasound, which came back as a Benign Ductal Papilloma. I had it removed with no complications. Over 3 weeks later my surgeon had his office set up an appointment for me to see him. I assumed he wanted to see how I was healing so I went to my appointment alone. He proceeded to explain to me that he had booked another surgery for me in the coming week because the Pathology report came back as described below and the margins were not clean. 3 weeks later? I said to him, "Why are you telling me about this 3 weeks later?" and then I pointed out that the Pathology Report was dated 2 days after my surgery. I was in shock. It made no sense to me. That was the start of my journey! Needless to say, I have lost all trust in doctors. I had to chose to focus on the urgency of my condition and also decide the route that I would take to beat this disease.
Lori
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