Phyllodes Tumor misdiagnosed as Fibroadenoma

Thank you MelissaDallas for your response. Crossover on appearance of imaging and biopsy is quite a scary thought. Although, I've read it's not a hard thing to do since these two types of tumors mimic each other.

I was hoping to avoid another biopsy - just to have it removed anyway, but you feel it's better to biopsy then remove? Can a biopsy change that much in 2 years? Is is true a fibroadenoma can change to phyllodes tumor?

Thanks in advance. Sorry for the million questions.

Deb

Thanks for that link. I appreciate all the information I can gather regarding this matter. Like everyone on this forum, I am so confused and a bit nervous. It's hard to make a rational decision when there are so many unanswered questions. And then of course, when you finally get in to see the doctor, all those questions go right out the door (LOL). I will make sure to make a list of questions for her and start the countdown to December 19th with the breast surgeon (which seems like an eternity).

Thank you for all your patience with me. You are one the only members who ever responds/replies to my topics and I thank you for that.

Hi Sara,

Thank you for that information. Everyone's input/stories have been really helpful and are putting me at ease about my situation. It's a real eye opener when you hear from others that are actually going through real situations and is very humbling. I feel that at this point in the game, since it's been in place for 2 years and starting to slightly change, maybe it is just a fibroadenoma and the ultrasound tech's recommendation of BIRAD 4 - probable phyllodes is just an overcautious finding/recommendation. I just dread undergoing ANOTHER biopsy. It feels so pointless to redo this whole ordeal - as this would make it a THIRD time biopsying the same exact mass. It's an overwhelming place to be. I'm in the stages of perimenopause, so I don't necessarily agree these are hormone issues as I've not had my monthly since July and prior to that was LAST December. I could be wrong. That's the problem, there is just that unknown.

Hugs to you Sara and thank you for sharing/listening.

Deb

Thank you Sara,

Today is my consult so I'm meeting with the breast surgeon once and for all to get this matter settled. I don't fear bad news or a bad diagnosis, I'm just really upset that I'm having to go through this all over again. And as far as the ultrasound coming back "probable phyllodes" and from what I've researched online - I'm really doubting that's what this one is. From what I read, most women say there is a huge lump - mine is big but not huge and it is painful/tender. Women also talk about how the tumor itself becomes warm to the area and, again, mine does not display those characteristics.

We'll see. I think this will be another case of false positive or negative positive or however that reading goes for reports.

Deb

Hi Sara,

I posted on the wrong forum before so I'm sorry if this seems like a repeat.

My appointment consultation was ok but left some nagging doubts. The surgeon is recommending wire excision removal. She says the tumor is surrounded/embedded by cysts, which is probably why the first biopsy became "infected" because the surgeon believes the doctor ruptured the cyst when doing the first biopsy. The second biopsy was benign but the surgeon explained they are just taking a "core" sample of the tumor and that the tumor itself is composed of many cells, which may exhibit cancer/precancer cells within different areas. She wants to remove the entire tumor and surrounding cysts and send it as a whole for biopsy so they can "dissect" then entire area. The cysts depict a mix of fluid/solid components.

The surgeon believes the tumor itself has not grown that the last imaging facility may have taken cyst measurements into consideration with the tumor, which is why it appears bigger this time around. She is still recommending removal. I'm confused at this point. They are suppose to get pre-authorization from my insurance and call by next week to proceed.

My nagging doubt is that, at the end of the day, she is a surgeon and she is "paid" to perform/cut into you. I don't know if this procedure is in my best nature, or unfortunately, in this day in age, she is protecting herself should anything ever arise of this one day. I worry that the imaging facility I went to may be more aggressive in overdiagnosing. I don't know what to do.

Feeling very uneasy about the situation.

Deb

MelissaDallas,

Thank you for your response. (Un)patiently waiting until next week to hear from the surgeon's office with surgery info. Seems like it should be a come/go surgery but I'm not looking forward to the wire insertion part of it. It looks/sounds painful. I need to stay off Dr. Google and quit trying to self-diagnosis myself. In realty, I know the smart thing to do is to remove this and I need to put on my big girl pants and just suck it up. Lol.

Thanks for your support.

Hugs, Deb

Hi all,

Feeling a bit better today. I had the chance to talk to the radiologist at the new imaging facility from my last visit and asked if he'd realized I'd already had 2 previous biopsies - he did not. I'm a little unsettled that this facility doesn't seem very thorough because I repeatedly told my tech, included this in my new patient paperwork AND they obtained all copies/studies from previous facility. But ok, whatever, he didn't get that memo I guess. He said if I can mail the pathology reports, he will include an addendum with that new finding and will agree that another biopsy is not needed (Yay!). The second part of my question - did he include cysts in measurements or was it just the fibroadenoma itself - as it is bigger this time around. He said fibroadenomas can grow and that this one indeed had grown - he said it displays solid/cystic masses within it but still feels it's B9. I'm happy to hear that of course. The breast surgeon office was going to consult with my previous imaging facility and have them compare with their previous images with these images taken and see if they can come to the same agreement (that it has grown or stayed the same size). If it is the same size and the new facility is wrong (because so far, I'm not too impressed with their protocol) - I will cancel my Jan 11 surgery - if it's bigger - I'll be back to the drawing board to decide if I'm doing the right thing (watch and wait or "cut it out").

Thank you to all for all your support this far. Hugs to everyone.

Deb

Received confirmation from the breast surgeon that both imaging facilities are in agreement that this tumor/mass/lesion, whatever you call it, has grown. The surgeon reports a diagnose of: Diffuse cystic mastophy of right breast; family history of malignant neoplasm of breast; and neoplasm of uncertain behavior of right breast.

I'm hoping someone can chime in and let me know what this may mean.

Deb