Anyone diagnosed with Phyllodes tumor?

@ssinkey My wife recently had a mastectomy in March 2022. Her case was different as she was diagnosed with MPT and her size was also big (>10 cm). In your case it is reassuring that this is benign and the size is small (1.1 cm). What i have learnt particularly after doing research is that the accurate diagnosis is by doing a surgical biopsy and not a needle biopsy. I assume that is same as core biopsy. If not, you should ask for one. We would have acted much faster if this was the diagnosed earlier and possibly had a lesser intrusive surgery.

Also, considering your tumor is small you can ask for WIDE margins which reduces its chance of recurrence. I dont believe they will do radiation but check please ask your Doctor on the same. I would also recommend to take a second opinion in a research institution like Mayo to get more information to decide on next steps including surgery and any preventative treatment. I would recommend you consult an oncologist who specializes in Sarcoma (not carcinoma) apart from a breast surgeon here basically get recommendations from 2 institutions for a total of 4 doctors. I I would also recommend you join the Phyllodes support group in facebook where you get some really good tips and advice. HTH and and i am sure everything will be great.

I had a lumpectomy in January 2022. I am scheduled to have a mammogram in December. From everything that I learned, researched and was told, as long as the surgeon takes enough of the area AROUND the PT there should be no need for a masectomy. I went to a breast cancer specialist that advised a masectomy was not necessary as preventaive because in my chart it showed the amount of extra tissue that was removed around the tumor, my surgeon took a bit more than was reccommended and I was told insurance probably wouldn't cover a masectomy because that technically would be cosmetic or a personal choice and not required for this type of tumor. Its a lot to think about and process forsure.

Thank you so much for connecting me. I would most definitely interested in a second opinion. I have been trying to find a physician who is knowledgable about phyllodes tumors in my area but it is difficult to find.

@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?

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

How did surgery go, @rcmlee?

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.

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.

@rcmlee, welcome. 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?

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?