Anyone diagnosed with Phyllodes tumor?

Posted by johnsoncs1 @johnsoncs1, Feb 25, 2021

Looking to start a discussion for anyone that has been diagnosed with Phyllodes tumor in breast or prostate.

Interested in more discussions like this? Go to the Cancer group.

@mariewurch

From what I have learned, it's a rare and unknown type of breast cancer and affects less than 1% of women. I have also learned that a neighbor I grew up with,lived next door to for 15 yrs. Just had double macestomy 1 month ago for the very same cancer I have and we are the same age. If anyone has any input, I would be helpful. Thank you I am 61

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Hi @mariewurch, welcome. I moved your post to this existing discussion about Phyllodes Tumors so that you can connect with fellow members @johnsoncs1 @knutter1 @marvinjjc and others who also have experience with this type of tumor.

Marie, do you know if your tumor is benign, borderline or malignant (cancerous)? Will you have surgery?

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I had a left mastectomy 9/2020 due to a malignant phyllodes with sarcomatous features. 5 weeks radiation. I currently have a malignant phyllodes in my right breast and scheduled for mastectomy 9/2021. Anyone else out there with similar experiences?

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@cheddar

I had a left mastectomy 9/2020 due to a malignant phyllodes with sarcomatous features. 5 weeks radiation. I currently have a malignant phyllodes in my right breast and scheduled for mastectomy 9/2021. Anyone else out there with similar experiences?

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@cheddar i am hoping some of the other folks who have or have had this rare type of breast cancer will chime in. From everything I can find out about this, what we know about it, really couldn’t fill a thimble. They know what it is, but not why. Are you scheduled for any other treatments?

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@auntieoakley

@cheddar i am hoping some of the other folks who have or have had this rare type of breast cancer will chime in. From everything I can find out about this, what we know about it, really couldn’t fill a thimble. They know what it is, but not why. Are you scheduled for any other treatments?

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At this point I am not scheduled for any other treatments. I have a few scans scheduled prior to my mastectomy next week. If I do not have Mets then I will have the mastectomy. Surgical pathology will determine the course of action after surgery

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@cheddar

At this point I am not scheduled for any other treatments. I have a few scans scheduled prior to my mastectomy next week. If I do not have Mets then I will have the mastectomy. Surgical pathology will determine the course of action after surgery

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Well, I am just going to cross my fingers that this will be the end of it! This is more than enough. I still hope some others will join the conversation.

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@cheddar

I had a left mastectomy 9/2020 due to a malignant phyllodes with sarcomatous features. 5 weeks radiation. I currently have a malignant phyllodes in my right breast and scheduled for mastectomy 9/2021. Anyone else out there with similar experiences?

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Hi Cheddar (fun Username), I add my welcome and invite @mariewurch @johnsoncs1 @knutter1 @marvinjjc to rejoin this discussion as they have experience with malignant phyllodes.

I wish you the best with your upcoming surgery.

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@colleenyoung

Hi Cheddar (fun Username), I add my welcome and invite @mariewurch @johnsoncs1 @knutter1 @marvinjjc to rejoin this discussion as they have experience with malignant phyllodes.

I wish you the best with your upcoming surgery.

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Hi cheddar! So sorry you are going thru this again. We all are with you. It is so hard dealing with PT. I had MPT in left breast and had mastectomy in March 2021. So far no recurrence in right but at times I wonder if I should just get it taken off as well. Had 3 mont check up in June, go back in Dec. It is a frustrating and difficult beast this Phyllodes . Attaching a picture of me and my husband.

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I had a lumpectomy 1/14/2022, turns out to be phyllodes tumor, they say it is benign but now of all I'm reading I'm a bit scared, were they too quick to say benign? The surgeon is going to discuss with the oncologist and radiologist to see if they want to do anything further, so far they did a lumpectomy with more than 1cm of healthy tissue also removed. I realize this is rare and am trying to not jump to any conclusions, if it's benign, it's benign, right?

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@sarapusc

I had a lumpectomy 1/14/2022, turns out to be phyllodes tumor, they say it is benign but now of all I'm reading I'm a bit scared, were they too quick to say benign? The surgeon is going to discuss with the oncologist and radiologist to see if they want to do anything further, so far they did a lumpectomy with more than 1cm of healthy tissue also removed. I realize this is rare and am trying to not jump to any conclusions, if it's benign, it's benign, right?

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Hi Sara, it sounds like they were able to remove the non-cancerous tumour with a clear margin. That’s good. Phyllodes tumors aren’t usually cancerous. But whether cancerous or not, your doctor will likely work out a follow-up schedule with you to monitor to check for possible regrowth.

Did your doctor talk to you about follow up with regular breast exams, mammograms, ultrasounds, and possibly MRIs?

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@colleenyoung

Hi Sara, it sounds like they were able to remove the non-cancerous tumour with a clear margin. That’s good. Phyllodes tumors aren’t usually cancerous. But whether cancerous or not, your doctor will likely work out a follow-up schedule with you to monitor to check for possible regrowth.

Did your doctor talk to you about follow up with regular breast exams, mammograms, ultrasounds, and possibly MRIs?

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Nothing YET, there is a panel of oncologists, radiologists and whoever else which includes my surgeon. They meet regularly on Tuesdays, next Tuesday 1/25 they are going to discuss my case and let me know after that what more needs to be done or not or whatever! Nervously & anxiously awaiting news!

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