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Mar 20, 2018 11:05AM
Here we are at 2018. I hope your Phyllodes tumor is ancient history. Mine is not. New to Phyllodes patients will find it hard to get the right information. You will need it fast, because the growth of these tumors is incredible. I was diagnosed in 2013. I wanted my sugeon to do a mastectomy, but she convinced me that a lumpectomy was sufficient, and just to be sure she got it all, six weeks of radiation. I believed her.
It turns out, mine was the malignant, aggressive type of phyllodes. She should have known that, but I had no clue. My mitosis was 11.
The amount I've learned since then is massive, but it will no longer do me much good. My cancer is now stage IV and it is in my lungs. I've had thoracic (lung) surgery, and 5 tumors were removed, but more have developed so the cancer is still present. Surgery is apparently no longer an option.
Phyllodes is a sarcoma. The best way to deal with Sarcoma is surgery. For Phyllodes, chemo and radiation have little to no effect.
For an agressive phyllodes tumor, one has to be agressive in getting rid of it.
Not all hospitals treat Sarcoma. In BC Canada, for instance, Abbotsford Cancer centre does not. They do not mention that anywhere. They did my first 2 surgeries and did not disclose that information to me. I had no idea that my surgeon knew nothing about sarcoma and virtually nothing about Phyllodes.
Get to an oncology doctor/hospital that has had some success with Sarcoma. Preferably get professionals that have had patients with an agressive Phyllodes tumor where they had a successful outcome.
That's a rarity. So, you might have to settle for success with Sarcoma.
Insist on a thoracic specialist to check out your lungs.
Get a CT, and ultrasound. Make sure a core biopsy is done.
I listened to my doctors. Got the lumpectomy. When that didn't work, more surgery for the wide margin excision. Then Radiation, then the mastectomy. Then another wider margin excision.
The doctors love to play the "let's wait and see game". With an aggressive phyllodes tumor, there is no time for that. If I had it all to do over again, I would have insisted on a mastectomy.