From fibroadenoma to BPT and unsuccessful attempt to get clear margins
Dec 2, 2
In February 2015 I found a lump in my right breast. I was diagnozed with fibroadenoma, but it appeared to be a benign PT (2 cm., surgery in March). No margins taken although the initial path report stated BPT. Final path report confirmed no clear tissue around, but my surgeon refused another surgery for margins. Before surgery a small spot of microcalcinates in the same breast were found, no actions upon it (suggested monitoring of it). Went for more opinions regarding clear margins, but it took me 4 months (it was July) to get to the right doctor (3rd), who acknowledged that clear margins are needed, but it's too late to make a surgery on them as too much time has passed and it will be no clear where they should be taken. After 6 months after the BPT removal I found another lump almost in the same breast, but it appeared to be a cyst. Ultrasound was appointed. Will be done in 2 weeks.
So my "no margins for benign tumor"story: according to the surgeon that did my tumor removal, there's no need to take out more margins for benigh tumor moreover that in my case it would mean half breast loss. Thanks to sisters'advice I went for 2nd and 3rd opinion. 2nd surgeon sent me for MRI and UG and as they showed no bad signs (just some seroma) , he suggested that I have to decide myself whether I need margins:), but he admitted that it's risky not to. And I voted YES, but as I had to come back to the first doctor (as this second can make surgery only if it is appointed by other doctor - that's the system in Lithuania where I live), this doctor said NO surgery is needed. He was embarrassed to hear my arguments and strong wish for margins. He said: the surgeon that took out the tumor said that no second surgery is needed and that's all, he is the decision maker. He thinks so too. I have to say at this point that the surgeon is also the Head of the breast surgery dept., so I started to feel that all other doctors simply obey his opinion not to have a conflict. It was confirmed by the fact that one more doctor at consulting dept refused to take me as a patient after she saw the name of the surgeon in my health history:) I still went for the 3rd opinion . This doctor woman works in the consulting and surgery. She listened to my story, I also told her that I had cervical conization 8 years ago (highest grade changes, but biopsy proved no cancer yet, clear till now). She saw that I know a lot about the tumor, she acknowledged that clear margins would be safer, but she said that too much time passed from the surgery (it was July, so 4 months till I got to her going this crazy circle) and she could not determine the right place of the tissue needed to remove; so I could take out some tissue, but not necessarily the right place, the right amount and your breast will be still distorted (ultrasound specialist she sent me to confirmed the same). Yet another thing she said was "Honestly I would only agree to make a surgery in December when the Head of dept that made you first surgery is on vacation as otherwise I would be in trouble conflicting with his opinion". OMG they play "boss-employee" game with my life! So I was discouraged from taking margins as "they can't be sure what they take" in July, appointed check up in 6 months. But in mid September I found another lump almost in the same spot, closer to skin. The same 3rd doctor checked it, said it's full of liquid, took it out. Result - it's cyst. Ultrasound appointed. What's next?:) Not scared, but I know I NEED TO KNOW MYSELF WHAT TO ASK FOR OR INSIST ON, because they play games rather than do prevention when they can...
Hi, So sorry to hear that you have been put in this difficult situation. Clear margins are an absolute must with a phyllodes as it is such a pernicious disease. I understand the argument that it is difficult to tell where the removal needs to be at this late stage but better to take more and have a deformed breast or no breast than to have another occurence - more surgery would be your only way forward in that instance anyway and it might be too late. Any surgeon who says that clear margins are not required has obviously never done any research into phyllodes and you are right to question this repeatedly. (I had a PT removed, the margins weren't clear so I had secondary surgery and I've been clear for 3 years now). Good luck and post how you are doing. Do not give up!
You have to have clear margins even with a benign phyllodes. That is a must your surgeon obviously has not enough experience with these rare tumours
Because my sample from original lumpectomy took several months to go through numerous pathologists, my margin surgery was more than four months from when the original tumor was excised. I was clear for many years, but it came back twelve years later. This time I opted for a mastectomy. I don't know if the delay in getting margins had anything to do with the recurrence, but it happened in the exact same spot as the original.
Sorry to hear of your dilemma.
It is imperative that you get clear margins, ideally 1 cm.
