I felt compelled to write about my new diagnosis because it’s so rare and I have found there is little up-to-date information about the removal and treatment of the Phyllodes tumor. Several sites mention taking out all of the healthy tissue around it, and I know that before I saw my surgeon at UCSF, I had a few sleepless nights imagining that they would have to take out a majority of my breast. I hope this is helpful for whomever stumbles on it. I feel fortunate to have an amazing hospital and team of doctors in my backyard, so I hope this will save some worry if you get a different story from your doctor.
On August 3, 2011 I was diagnosed with the Phyllodes tumor, a rare, fast growing tumor that is typically benign. The RN I saw at UCSF’s Women’s Health Center was convinced it was a cyst because it was large, came out of nowhere fast, and moved around quite a bit when touched. I guess a typical breast tumor is fixed and grows really slowly. She sent me over to pathology to get the fluids drained, and as it turned out, no fluid was coming out when they expressed it with a needle. The pathologist went ahead and took four fine needle biopsies. Twenty minutes after I left, the same RN called to tell me that I had a rare tumor, so rare that many clinicians haven’t seen one before, and that she had already referred me to see a surgeon at the UCSF breast center across the street.
On the 5th I had my meeting with the surgeon, she assured me the tumors are typically benign and she was so relaxed about the process which I found relieving. I hadn’t slept for the last two nights after reading things on the internet that the typical treatment is the removal of the tumor along at least a centimeter of healthy surrounding tissue. The tumor was the size of a dried apricot and if they had to take out that much tissue, I was imagining having to get fake boobs, the whole nine yards. As it turns out, and this is important for all you readers out there, if there are any… that there are DEVELOPMENTS! :) There are two steps to removing a Phyllodes tumor. One is the first surgery, the removal of the tumor. This took about an hour, but it is surgery, they cut me around my nipple about an inch and slipped it out. I was put under, I was in pain that night. But it was outpatient, and I was more or less put out for a good 3-4 days, taking three Tylenol whenever I felt the pain kick in. My surgery was on a Monday and I was fully back at work Friday, with some cheating and going into the shop for bits of time Wednesday and Thursday, feeling a bit faint if I did too much. It’s now been three weeks and I still feel the healing happening.
The second step is that they wait three months for the cavity to shrink, then they go back in and remove the healthy tissue around the smaller cavity. By the time I had my surgery on August 15th, my tumor had grown to the size of a small lemon, 4.5 cm, so this is why they wait… it’s that much less tissue to remove.
Oh, lastly, regarding the biopsy, whether it’s benign or malignant, they can only tell that after they take it out. The fine needle aspiration only confirms if it’s Phyllodes or not. The surgeon I saw originally told me she had worked on a few Phyllodes tumors recently which is strange because they are so rare, and often a surgeon can go through life without working on one. I ended up switching to a second surgeon because the original ended up going on vacation and I didn’t want to wait until she got back. I just wanted the thing out. Both doctors were excellent, the surgeon who took out the tumor ultimately is the only male currently at the breast center and got a lot of praise when I was getting my mammogram.