Anyone diagnosed with Phyllodes tumor?

Posted by johnsoncs1 @johnsoncs1, Feb 25 9:33pm

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

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?

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So in May of 2020 I had a normal mammogram. Then in July or August I found a lump on my left breast while showering about the size of a pea. I knew my annual was coming up with my GYN doctor so I made a note to bring it to her attention then. That appointment was end of September. She checked it and said it was concerning that we should probably get an ultrasound which we did which then resulted in a biopsy. Ultrasound showed a 2 cm mass. Biopsy showed benign fiber adenoma. I contacted Dr again in October and said I think it's getting bigger she said it could be a hematoma from the trauma of the biopsy but let's get an ultrasound. So we did. Did in fact have a hematoma so that put my mind at ease. Then in November I started having pain in that breast and could definitely feel that the lump was now as big as my whole nipple. And it was a very hard firm mass. Another ultrasound in November showed it had grown to 3.8 cm. She said best thing would be to refer me to a surgeon to see about getting it removed. Had appointment with surgeon in December. He examined me went over everything. Told me that nothing to worry about biopsies were benign so that was a good thing even though sometimes biopsies are wrong he said. He asked me if I was comfortable checking back in 2 months which would have been February. And I said fine that would be great. That was early December first part of January I felt that the mass it was still growing even larger asked to see him in January instead of waiting till February. By this time I had already called up schedule an appointment with Dr Ghosh in the Breast Clinic. when I went and saw surgeon for follow-up visit in January we decided to do another ultrasound and by now this lump was near 5 cm. Waited anxiously for my appointment up here at Mayo in Rochester. Spent last week seeing doctor, did repeat mammograms, breast ultrasound, ultrasound guided biopsy, FNA on auxiliary node, breast MRI, neck and thyroid ultrasound (previously seen at Thyroid Nodule Clinic in Rochester). Auxiliary node and lymph nodes in neck checked out fine. MRI indicated another small spot on the same breast higher up which we biopsied with MRI guided biopsy. For now that shows benign fibroadenoma I think. The biopsy on the large mass came back as cellular fibroepithelial lesion, can not rule out Phyllodes. When first meeting with my doctor, she's suspected it may be Phyllodes. The only way to know for sure is to remove the entire mass and then biopsy it. Contemplating if I want to do white excision with margin or given the history of these tumors considering mastectomy. Surgery consults scheduled for March 3rd. Surgery scheduled March 16th. After learning as much as I could so far about these tumors I have some decisions to make regarding my treatment going forward but I know I am in the best place. These tumors don't play by any of the rules. Fast growth doesn't equal malignancy. Slow growth doesn't equal benign. Not sure what causes them. Not sure if their genetic. I just know that they come back, sometimes they're benign sometimes they're not, and sometimes in worst cases they can metastasize in other parts of your body like lungs or other soft tissue. Apparently most often they start out in the breast. Not sure if that's due to estrogen or hormones. I know that Dr James Jakub at Mayo is involved in a clinical trial related to Phyllodes. So I know this is the best place for me to be for be and I am so thankful!
I hope this discussion group will be beneficial for everyone and be a source of information on this unusual tumor. I did find a Facebook support group that I joined and it has been very good to have support of other people that are in this journey. But I'm glad even more to have a group connected with Mayo because I know that's where the best medical information will come from. It is good to hear others stories though on the Facebook Phyllodes group. It is monitored very well and inappropriate content or comments are not allowed.

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I hope that sharing my story will help get this discussion going and that it will come to be a source of information as well as encouragement to others. I'm anxious to talk to my surgeon on Wednesday and I will post updates when I can.

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Don't know if benign or malignant until after surgery.

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There is a relatively large Facebook group called Phyllodes Support Group that has been in operation for 12 years. You can get support, suggestions and a good amount of literature that’s been accumulated.

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@knutter1

There is a relatively large Facebook group called Phyllodes Support Group that has been in operation for 12 years. You can get support, suggestions and a good amount of literature that’s been accumulated.

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Yes, I found that as well. But good to have this one too

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Anybody else out there with current or previous diagnosis of any type of Phyllodes tumor?

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@johnsoncs1

Anybody else out there with current or previous diagnosis of any type of Phyllodes tumor?

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I had a massive phyllodes tumor removed in the summer of 2018. And then a smaller one appeared during a second breast surgery in 2019. Thankful both were benign.

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@marvinjjc

I had a massive phyllodes tumor removed in the summer of 2018. And then a smaller one appeared during a second breast surgery in 2019. Thankful both were benign.

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Hello @marvinjjc and welcome to Mayo Clinic Connect. I appreciate you sharing your experience with phyllodes tumor. As this is a rare type of tumor, I'm wondering if any others in your family have had this diagnosis as well. Did you learn any information about the source of these tumors?

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@johnsoncs1

Don't know if benign or malignant until after surgery.

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Hello @johnsoncs1

I was thinking about you and wondering if you had surgery yet. Will you post an update when you are able?

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@hopeful33250

Hello @marvinjjc and welcome to Mayo Clinic Connect. I appreciate you sharing your experience with phyllodes tumor. As this is a rare type of tumor, I'm wondering if any others in your family have had this diagnosis as well. Did you learn any information about the source of these tumors?

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Hi! I’m not 100% sure as I was adopted as a baby. That being said, I do know there is a history of breast cancer on my fathers side (2 of his sisters and his mother) and on my mother’s side (her sister). They are unsure of what types of BC it was. I was tested for the BRACA gene which came back negative, but I was also told that it would be more accurate if they were able to test a biological family member who had BC in order to get the correct gene variant.

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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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