Anyone diagnosed with Phyllodes tumor?

Waiting is the worst! I hope you can find some peace in knowing it is benign. This is when I typically take on a challenging knitting project. What are some ways you can keep busy and distract yourself?

Thank you, it is a very weird thing. Being it is benign I should be thinking ok done no big deal, but I haven't gotten that finality it's almost like yes it's benign TODAY but....... or something I don't know it's just not a ENDED statement yet. My husband is a "it doesn't pay to worry" type of person so I can't vent to him, I will NOT tell my kids until I have too and my mom is my best friend but still my MOM and obviously older than me and I don't want to stress her out so when I do talk to her I'm very positive and upbeat and etc. BUT I do have to do taxes this weekend (not fun but very distracting) and Tuesday morning is just around the corner so I hope to have some answers Tuesday MID-morning!
Thank you for your support!

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.

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?

Thanks for the response. We have decided to go with another surgery On Jun 16th to get clear margins as her Doctors recommend that before radiation. My wife has been holding up very well while initially it was bumpy.

Yes, she is scheduled for a surgery Jun 16th. After that i may think of a opining in Mayo clinic on recurrence prevention options. I did do some research on Phyllodes groups in Facebook and also talking to oncologist friends and it did look like getting clear margins was strongly adviced.

How did surgery go, @rcmlee?

So glad to find a group of women who understand what it's like dealing with a Phyllodes tumor. I recently was diagnosed with a benign phyllodes tumor. Just a little history, when i was 21 years old i found a large palpable mass in my right breast. I had 3 different biopsies all showing cancer. Had a lumpectomy and was diagnosed with Sclerosing Adenosis (I do wonder if i actually had a Phyllodes Tumor and it was misdiagnosed). Then I was followed up with mammograms for 2 years after the lumpectomy with no issues. Years have gone by and i never got rechecked. On August 2, 2022 i had a screening mammogram since i am now 40 years old. Mammogram came back abnormal, ultrasound was concerning for cancer and showed a well circumscribed mass 1.1 cm on my right breast. I had a core biopsy on August 17th and pathology showed benign PT. I am scheduled to see a breast surgeon on August 29th to determine surgical treatment plan.
Since my pathology results have come back my husband and I have been reading about PT as much as we can to learn about it. After reading your post on here I am learning that PT is not as simple as you would think it would be for a benign breast mass. I am so sorry that all of you have had to deal with this. I am just in the beginning phases of this and already feel lost.

I am anxious to go to my appointment and fear my doctor might not know much about PT. I am curious to know if you have heard any pros or cons to getting a lumpectomy vs having a mastectomy. I have read so much about the tumors coming back and requiring additional treatments. I notice that a few of you have had to have additional procedures due to finding another tumor. I wonder if you have least risk of reoccurrence with a mastectomy?

Any information you could give me would be helpful. If you know of questions I should ask in my upcoming appointment with the breast surgeon let me know.

Thank you

@ssinkey , there are quite a few members who have been active on this thread with experience with Phyllodes tumors. Welcome to the conversation, please allow me to tag a few members and hope they see your questions..
@sarapusc , @cheddar , @rcmlee , all have experience with this rare tumor.
If you aren’t ready to decide on lumpectomy or mastectomy, are you comfortable seeking a seeking opinion?