This has been one hell of a week.
Last Thursday night I got a call from the surgeon telling me that they found somethng on my MRI, and he would like me to come into the mammography center on Monday to do another ultrasound and possible needle biopsy.
What I did not fully realize until I was there was that they were now discussing my left breast.
I had the ultrasound & needle biospy at 11:00 on Monday. 3:00 the pre-surgical screener called me to set up my surgery time. 3:30 the surgery was cancelled by the surgical coodinator. The doctor now wants to see me in his office on Thursday morning to discuss the findings. In the span of the 3 minute phone conversation, she called me 'honey' and 'sweetie' 5 times. And come to think of it, the pathologist and tech both wished me luck and touched me before they left the room.
Those were the longest 72 hours ever.
The good news is, I don't have cancer. Not today anyway. I have what is called a phyllodes tumor. It's rare. It's the same tumor that was removed in 2003. They are aggressive and resilient.
Here is a little more information on them:
Phyllodes tumors account for less than 1% of all breast cancers. Even though the tumor may be benign, it is still considered a type of breast cancer, because it has the potential to become malignant.
Phyllodes tumors are not all cancerous. Many will be classified as benign and not require further evaluation. A skilled pathologist is needed to distinguish a benign phyllodes tumor from one with more aggressive malignant potential. In any event, women who undergo surgery for removal of a phyllodes tumor require close surveillance with followup mammogram and physical examination at regular intervals. Malignant phyllodes tumors are best managed with a wide excision of normal breast tissue around the tumor to obtain clean margins. In most cases, radiation therapy is not required. Very large malignant phyllodes tumors may require complete removal of the breast for management.
The less than good news is that now I have to have bilateral surgery. The atypia cell mass on the right and the phyllodes on the left. They will do a wide excision, which after having done once will leave me with very little breast on the left. I can live with that. They will test the cells and hopefully not come back with any malignant ones.
I'm having the surgery the day before Thanksgiving. It was either that or wait until the middle of December. We're going to Florida for some of the holiday break, so I didn't want to put it so close to the travel time.
In short, I am very relieved. I won't feel totally safe until after the surgery and I get the all clear from the doctor. But I am optimistic that it will turn out ok.
BTW, the phyllodes was only detected by the MRI. Not the mammogram.
4 comments:
Oh my god, what a relief that it's not cancer. I've wondering when it would be safe for me to email you today, now I know.
Still, the surgery sounds pretty major. Oh how I wish I could share some of my excess with you! Will your insurance cover any sort of reconstruction?
So happy to hear it's not cancer "sweetie" :) I will be thinking about you on Wednesday ((hugs))
So sorry to hear you've had a recurrence and wish you all the best with the results and surgery for removal.
I too was diagnosed with Cystosarcoma Phyllodes, this rare soft tissue sarcoma last year. The joys of having a rare cancer means there is very little information about it!!! ;-( However I've been incredibly blessed to meet many of us around the world (mostly in the US) diagnosed with Phyllodes and able to share our journey. If you're interested there's a Facebook group "Phyllodes Tumors, CystoSarcoma Phyllodes, whatever it's called..." - feel free to drop in and say hi.
All the best for the results and surgery.
AnnaGoAnna
I'm so thrilled to hear that you heard the words, "not malignant" from the doctor! That's fantastic. Hope the surgery goes perfectly. I'm sending good vibes your way.
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