Hi I'm Karen. I founded this group 10/1/2015 for myself and others to benefit from shared info and experiences with Phyllodes Tumors.
My story:
In December 2014, I had a diagnostic mammogram and ultrasound because of a grape-size lump felt in my left breast. Due to poor insurance coverage, which paid less than 80% of the bill, I had to apply and get accepted for Obamacare before having a biopsy. In June of 2015, I had a biopsy, which revealed not one, but two Phyllodes Tumors and was told I needed to see a surgeon. I found a wonderful breast surgeon who performed a wide excision lumpectomy to remove both lumps as one, as they were close in proximity to one another.
Pathology reported a phyllodes tumor of at least borderline malignancy, 1.8 cm in greatest dimension, with an 0.8 cm satellite nodule, 0.55 mm from the closest (anterior) surgical margin. Margins removed ranged from 0.5 to 0.9 cm in thickness. It also stated the tumor exhibits infiltrating margins, generally moderate cytological atypic with a small focus showing a few scattered cells with marked nuclear atypic, moderate to marked cellularity and stromal expansion. (Don't ask me what all that means, because I don't know.) All I understood was the tumor displayed malignant tendencies.
My surgeon told me I had a 20-40% chance of recurrence and recommended I follow up with radiation therapy, 5 days a week for 6 weeks. Yesterday I met with a radiology oncologist. I met with him in the Cancer Center of a hospital. He examined me, reviewed my case, said in his 20 years of experience in radiology, he'd only seen 3 cases of PT, and admitted he didn't know what to do with me.
He showed me the National Consortium website which suggested not using radiation until post-mastectomy recurrences and said there haven't been any studies on this rare phenomenon. I told him I'd read Dr. Barth's study found online stating how radiation had reduced recurrence in numerous patients, and told him I'd rather reduce the chances of recurrence vs face a mastectomy. After reviewing Dr. Barth's report, he was swayed to attempt radiation, but first was going to meet with his team of oncologists to review my case.
My radiologist also mentioned to me that once a body part has undergone radiation therapy, it can never have it done on that spot again. So now at age 58, I'm forced to choose whether I want to play my "Wild Card" now, in hopes of eliminating the chance of recurrence…or…pass on the radiation in the event I need it for a later date. Seems like a no-win situation to me.
My surgeon met with her team of experts and I will meet with her next Wednesday to hear their recommendations.
Next Thursday I will meet with the Radiation Oncologist to hear the recommendations from his team of experts.
I'll keep you posted.
My story:
In December 2014, I had a diagnostic mammogram and ultrasound because of a grape-size lump felt in my left breast. Due to poor insurance coverage, which paid less than 80% of the bill, I had to apply and get accepted for Obamacare before having a biopsy. In June of 2015, I had a biopsy, which revealed not one, but two Phyllodes Tumors and was told I needed to see a surgeon. I found a wonderful breast surgeon who performed a wide excision lumpectomy to remove both lumps as one, as they were close in proximity to one another.
Pathology reported a phyllodes tumor of at least borderline malignancy, 1.8 cm in greatest dimension, with an 0.8 cm satellite nodule, 0.55 mm from the closest (anterior) surgical margin. Margins removed ranged from 0.5 to 0.9 cm in thickness. It also stated the tumor exhibits infiltrating margins, generally moderate cytological atypic with a small focus showing a few scattered cells with marked nuclear atypic, moderate to marked cellularity and stromal expansion. (Don't ask me what all that means, because I don't know.) All I understood was the tumor displayed malignant tendencies.
My surgeon told me I had a 20-40% chance of recurrence and recommended I follow up with radiation therapy, 5 days a week for 6 weeks. Yesterday I met with a radiology oncologist. I met with him in the Cancer Center of a hospital. He examined me, reviewed my case, said in his 20 years of experience in radiology, he'd only seen 3 cases of PT, and admitted he didn't know what to do with me.
He showed me the National Consortium website which suggested not using radiation until post-mastectomy recurrences and said there haven't been any studies on this rare phenomenon. I told him I'd read Dr. Barth's study found online stating how radiation had reduced recurrence in numerous patients, and told him I'd rather reduce the chances of recurrence vs face a mastectomy. After reviewing Dr. Barth's report, he was swayed to attempt radiation, but first was going to meet with his team of oncologists to review my case.
My radiologist also mentioned to me that once a body part has undergone radiation therapy, it can never have it done on that spot again. So now at age 58, I'm forced to choose whether I want to play my "Wild Card" now, in hopes of eliminating the chance of recurrence…or…pass on the radiation in the event I need it for a later date. Seems like a no-win situation to me.
My surgeon met with her team of experts and I will meet with her next Wednesday to hear their recommendations.
Next Thursday I will meet with the Radiation Oncologist to hear the recommendations from his team of experts.
I'll keep you posted.
insideoutupsidedown
Today they did mapping of the breast to get ready for radiation. The radiation oncologist has not done radiation to a phyllodes tumor patient after a lumpectomy before, and I'm feeling like his guinea pig. I'm not sure he knows what he's doing and I'm also not sure I trust that I'm not his Frankenstein experiment. I've had doctors with bad motives before, ignored my gut feelings, and it caused irreparable damage. What do I do?
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