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Anyone diagnosed with Phyllodes tumor?
Cancer | Last Active: 13 hours ago | Replies (69)Comment receiving replies
I first noticed a small lump in December. I have a history of fibroid cysts so I wasn't alarmed at first. I became more concerned as the lump began to grow to be more noticeable in a month and it wasn't sore as the fibroid cysts tend to be. I went to my PCP and she ordered a mammogram and ultrasound, after which a biopsy was scheduled on Monday of this week. They were concerned because the lump grew extremely fast from a small pea size in December to over 6 cm in February.
The results came to me from pathology and was put on "My Chart" before my treatment group reviewed. The report says it's a benign phyllod tumor. I know benign is good, but have read enough on Google to know that can change. All information points towards surgical removal.
Awaiting my teams review to know what they plan to do next. I have been terribly distraught over this as my mother was diagnosed with breast cancer in 1980 and passed away in 1985.
To have a benign diagnosis is a blessing, but seeing the information about recurrence and having such a large tumor, all avenues are pointing towards a lumpectomy with surrounding tissue removal, or a complete mastectomy.
Any information from others who have gone through or are going through this is much appreciated.
Relieved but scared.
Replies to "I first noticed a small lump in December. I have a history of fibroid cysts so..."
@juliedawn613
Here is the name of the group I referenced:
https://cancerhopenetwork.org/
The support and information about the experiences from other people might be helpful.
Again, I'm praying for you for the best!
@yellowdoggirl
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Hello Juliedawn613,
My 33 yr old's daughter had a phyllodes tumor in her breast in 2023. Her midwife found it at 2 cm, in a few weeks. It had grown to 7 cm. When found she was told it was benign, but no biopsy had been done so they didn't really know.
This kind of tumor is more like a sarcoma than it is like. A "Regular" breast cancer. Everything I know about them I learned from my daughter as she was going through this. It was malignant so she had a mastectomy with reconstruction after that. She chose not to have radiation.
No she has a scan every 6 months to make sure it did not recur or a new one start elsewhere. It is true that most of them are benign and even her doctor was surprised.
She read a lot online, sticking to reputable papers. It seems the Italians have done a lot of research on phyllodes. It is scary, I understand! You are not alone. There's a good organization that connects people with cancer with other people who have a same kind of cancer and in about the same age group so you have things in common. It is a telephone-based community and encompasses the whole country so there is a good chance you will find someone like yourself. I will look up the name and put it in another message if I can't get back to you.
It is very hard to be hit with a rare disease about which not that much is known. If you can get to an academic teaching hospital, a big one, I think you will be able to find out more. Keep asking questions until you get your answers and don't give up!
I am wishing you the best and will look up the name of that group right now.