Misdiagnosis

How was your benign cyst diagnosed?  Did you have an aspiration, or was it a simple cyst that was clearly visible on the imaging, or was it a complex cyst that was monitored?  There is standard protocol for managing cysts, but the protocol varies depending on the type of cyst (simple vs. complicated vs. complex) and how clear the cyst appears on imaging.  

There are a couple of very rare types of complex cysts that do have a high rate of malignancy, but overall the rate of cancer in cysts is less than a 1/2 of a percent.  If somebody presents with one of those rare complex cysts, then a biopsy should be done, but most cysts are so low risk that a biopsy would not be recommended. 

I would not call it misdiagnosed in my case.  Here's what happened.  I had a cyst after taking hormone replacement therapy for two months.  I saw the ultrasound.  It was a cyst.  I immediately stopped the HRT.  Several months later, thinking the cyst would shrink or go away, I got concerned when it started growing.  I went to have the cyst drained to get rid of it.  As soon as the doctor put the ultrasound to my breast, I saw something very different than I originally saw.  It was cloudy and complex looking.  She did a fine needle aspiration and four days later I knew it was grade three invasive ductal carcinoma.  It just happened to be in the same spot as the cyst had been.  I think the original cyst may have "hid" the actual cancer.  I had ultrasound and mammogram of both the original cyst and the cancer.  They were very different things.  Both diagnosed correctly.  I'm just glad I questioned when the cyst started growing...I was lucky!!! Stage 2 and no lymph node involvement.  But with grade 3 and HER2+ I have endured a year of chemo and radiation.  It was one year ago today I received my diagnosis and began my fight to survive.  Today I am cancer free!

My mucinous breast cancer was misdiagnosed as a cyst.  Mucinous tumors often look like cysts and are difficult to see on mammograms. Ultrasounds are good at seeing them but are sometimes mistaken for cysts.  Following my diagnosis, mine was noted on a previous ultrasound. 

Yes, I was misdiagnosed with a cyst.  I was breastfeeding, they did not look closely enough, they just saw all the milk and said I had cysts all over the place. When what I thought was a cyst grew I went back in, and was sent to a different imaging place, they were much more thorough and found it easily as it had doubled in size.  

I wonder if on yours too what they were seeing was milk because your body does start preparing for lactation while pregnant.  

Mine was like a hard marble at the first ultrasound, I wonder if I had nursed right before the exam if they would have seen it. They knew I was breastfeeding. The second place I went to was much better, they said to point to the lump with one finger and then they put the wand right on it. 

Stay positive! I am trying to too,

agatha6

Yes.  I was miss-dx. Even though I work in the healthcare field (Non clinical capacity), I set aside my internal instinct and accept the "Its only a cyst, or fatty tumor" Because, in all honesty, who rejects good news!   Trust of a health care professional (Doctor) is a tricky thing.  I grew up with the believe that they were like gods, and whatever they say, do not question.  I certainly do not have that belief anymore.  I question everything, and then question it again. 

in 2009, one year later on my follow annual mamo, the radiologist asked me why I didn't get this lump evaluated???? I replied "What do you mean, my doctor told me it was okay, its only a cyst."  The radiologist said how do you know if you didn't get it biopsied?  Good question.  I knew immediately, from the look of concern on his face it was serious, and definitely not a cyst.  Needless to say, I was enraged at my doctor.  Who subsequently attempted to alter my medical records to indicate he did not tell me it was a cysts.  Legal action and an out of court settlement made it clear to him, never to do that to another person again.  I don't blame him for my cancer diagnosis. I don't blame him for being human, I do blame him for his reckless disregard for my well being, and not taking the appropriate defined course of action to order a biopsy. Had I had it done once I first found, it was likely that it would not have spread to one node, and would have altered dramatically the course of treatment I received and likely my overall health since.   

Today, almost five years later, I have very little trust for all health care professionals.  I believe everyone should have a bit of skepticism about everything that comes out of their mouths.  Seriously, as I mentioned before, working in healthcare for over 25 years, I can tell you the "Care" part of healthcare is not something you should automatically assume.   On another note, I have a wonderful Oncologist. She is one of the best. She knows she needs to be on her A-game when I come in, because I'm not going to smile and nod by head.

Thanks Diane for the follow up.  I tell women all the time... demand a biopsy.  Its painful, but in the end the peace of mind is worth every bit of it. 

Regarding legal counsel.  I didn't know what to expect and only sought the advise from a lawyer because the A-Hole doctor, refused to take my calls, and would only give me select pieces of my medical records.  The attorney advised me what he did (or in the case, didn't do) was outside standard medical practice, and he should have at minimum order the biopsy. Because he didn't, and cancer was found in one node I was successful at obtaining an out of court settlement. He was suppose to show up a the deposition, but was a no show... go figure.  What I've learned could I consider priceless.  My life is somehow better because of the entire experience, and I have a whole new perspective - dare I say a better perspective.  

I know this is a late reply but Clancaster2, you need to get a second opinion or see a breast cancer specialist because blood from the nipple, a retracting nipple and so on need to be fully investigated.

Good luck.