Cyst or something else?

[Lafemme911]

I am a 46 year old female.  5 years ago I had a low grade phyllodes tumor removed from my right breast.  It was first thought to be a cyst that had grown over the course of 1 year.  Last year, I had a mammogram and an ultrasound that showed a large cyst in my right breast near where the phyllodes tumor had been.  I just had another mammogram done because the cyst was larger.  They did not do an ultrasound and just said that the cyst was now larger.  My question is this:  How can they be sure it is still a cyst and not another phyllodes tumor without doing the ultrasound?  When I asked the radiologist he just said that it looked the same just larger on the mammogram.  

Thank you.

[Lafemme911]

Thank you for your comments.  I do feel more positive today.  I realize that I am in charge of my health and I will monitor the lump.  If it grows, I will insist on an ultrasound or get a new doctor.  It's discouraging when your concerns are dismissed out of ignorance and I find it somewhat disquieting that I had to go online to get advice and feel validated.  Your advice and comments really made a difference.  Thanks for listening.

[Dennis MD]

Hi.
I understand what you are going through.
One out of five phylloides tumor will recur after excision with close or positive margins or resection.  Recurrences may signify an aggressive nature of the tumor.   If there is a recurrence, mastectomy or re-excision and radiation therapy may be suggested, especially for the malignant phylloides tumor.  A wider margin of excision may be done, but this does not offer advantage over local excision.  At present, there is no role for chemotherapy for malignant phylloides tumor.    
You may want to get a second opinion from another doctor, preferably from an oncologist.    
Stay positive.

[Lafemme911]

Thank you for your answer.  I did call the radiologist and asked if he knew 100% that this was the same cyst which had grown larger.  He would never confirm this, but said it "looked benign."  When I said a phyllodes looks benign on a mammogram, he said that there was "no such thing as a benign looking malignant tumor or a tumor that can recur at a higher grade."  I called my doctor and expressed the same concerns and she said that the radiologists report said the findings were benign.  So, basically, I was sent around in a circle.  I feel like I am surrounded by doctors who don't know what a phyllodes is and I have never received any follow up care.  Even when the orginal tumor was removed, I was first told it was a fibroid adenoma.  Then, I was told it was this phyllodes tumor, but that "it was not a big deal.  If it recurs, we just cut it out again."  I realize that most of the time these tumors are benign, but I would like to know that I am in that 90% and not in the 10% malignant group.  The "cyst" was 26mm and is now 39mm.  I was told to call back if "the cyst" grows larger.  I don't know what else to do.  This makes me sad.

[Dennis MD]

Hi.
An ultrasound will help determine whether the tumor is cystic or solid in nature.  Perhaps the reason why your doctor did not request for an ultrasound anymore is because he is certain that the tumor is cystic and is the same as in your previous ultrasound.  
I think there is a need to establish if the large cyst is a recurrence of the phylloides tumor.  Phylloides tumors are similar to fibroadenomas both in clinical presentation and histologic appearance.  It is managed by excision with clear margins.  Recurrences are managed by re-excision.
Take care.