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johnsoncs1 (@johnsoncs1)

Anyone diagnosed with Phyllodes tumor?

Cancer | Last Active: Dec 17, 2022 | Replies (43)

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@rcmlee

My wife was diagnosed with a Malignant Phyllodes tumor and went thru a mastectomy since it was large around 15 cm to get clear margins which was achieved as per pathology post surgery. She also was recommended radiation. She also opted for reconstruction and during the expansion process we noticed a bump that wont heal and on a follow up surgery (3 months later her mastectomy) the pathology came up as that portion having malignant PT. They want us to do another surgery but at this stage we are not sure how much this is sustainable if this recurs as we have already done mastectomy. We really wanted some expert opinion from Mayo Doctors who do research on this and also similar experiences from other patitents.

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Replies to "My wife was diagnosed with a Malignant Phyllodes tumor and went thru a mastectomy since it..."

This has got to be really scary for you and your wife. I know I am supposed to have a link to request an appointment. I am not really good keeping track of links and it sounds as if you are feeling a bit of urgency.
The little blue square in the right hand corner is an instant link.
That being said if I were in your shoes, I would ask my doctor to send a referral. I know that you would get the best information available, if you could get to Mayo.
How is your wife handling this new event? How are you holding up?

@rcmlee, welcome. I moved your message to this existing discussion about Phyllodes tumors.
– Anyone diagnosed with Phyllodes tumor? https://connect.mayoclinic.org/discussion/phyllodes/

I did this so you can connect more easily with other members like @johnsoncs1 @marvinjjc @mariewurch @cheddar @sarapusc who have experience with phyllodes tumors in the breast, some of whom have been to Mayo Clinic.

Have you submitted a request for a second opinion at Mayo Clinic. If not, here's the link to more information on how to do so. http://mayocl.in/1mtmR63

You can self refer or ask your wife's oncologist to submit a physician referral.

I know that this is a shocker to have found another lump during the expansion phase of reconstruction. But I sure am glad it was found. Is she scheduled for a second surgery?