I’ve had reoccurring phyllodes tumors in my breast. First occurrence was July of 23 I had a 8x3 cm removed with a second occurrence in Jan25. The biopsy I had in Dec. was a horrible experience. It was painful and it resulted in fluid leaking out and now I have developed one on the outside of my breast. I have changed doctors and my current doctor’s recommendation is to have a mastectomy. I’m just wondering if this has happened to anyone else? I can’t find a case online that has this recorded.
Yes, My first was 2020 and was removed by Lumpectomy came back as Borderline. My second reoccurrence was in the 2022 and was malignant- did a double mastectomy with .7 margins, no treatment needed. I had my 3rd occurrence in January, had a lumpectomy in February, malignant, currently doing radiation and will do chemo next month. Good news it has not metastasized. Currently being treated at U of M. My situation is a rare case most do not return.
Hi @johnsoncs1 and welcome to Mayo Clinic Connect. I have added this discussion thread to the Breast Cancer and Prostate Cancer groups as well as the main Cancer group. As you know A phyllodes tumor is rare, so all the more reason to start this discussion group to help connect people with this rare tumor type. Thank you.
To get the conversation started, why don't you share a bit more about you? I know very little, but I do know that phyllodes tumors can be hard to diagnose. Was that your experience? What treatments did you have? Was the tumor found to be benign or cancerous?
They are definitely hard to diagnose, especially the one on the outside. I had 4 doctors visually look at it before I got a biopsy on it. My margins have been borderline on the past two surgeries. I have consulted with a doctor and I am scheduled with a plastic surgeon so I can do mastectomy and reconstructive surgery all at once.
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Hi @anitaditto1006, welcome. I moved your post to this existing discussion about phyllodes tumors.
Read more here:
- Anyone diagnosed with Phyllodes tumor?https://connect.mayoclinic.org/discussion/phyllodes/
I did this so you can read previous posts and connect with fellow members like @johnsoncs1 @knutter1 @cheddar @sarapusc @michelle0509 @malyah @ash2021 @lislordav @yellowdoggirl1 @danielleruddy @ssinkey @marvinjjc @mariewurch and others who also have experience with this type of tumor.
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1 ReactionYes, My first was 2020 and was removed by Lumpectomy came back as Borderline. My second reoccurrence was in the 2022 and was malignant- did a double mastectomy with .7 margins, no treatment needed. I had my 3rd occurrence in January, had a lumpectomy in February, malignant, currently doing radiation and will do chemo next month. Good news it has not metastasized. Currently being treated at U of M. My situation is a rare case most do not return.
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Like -
Helpful -
Hug
2 ReactionsThey are definitely hard to diagnose, especially the one on the outside. I had 4 doctors visually look at it before I got a biopsy on it. My margins have been borderline on the past two surgeries. I have consulted with a doctor and I am scheduled with a plastic surgeon so I can do mastectomy and reconstructive surgery all at once.
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Like -
Helpful -
Hug
1 Reaction