Some searches I did:
Where is phyllodes breast cancer research being done? Duke University and hospital. Dr. Rosenberger is the founder and Principle Investigator of an 11-site multi-center collaborative network of Comprehensive Cancer Centers that research phyllodes tumors. You can always get a second opinion from a cancer center if you wish. https://surgery.duke.edu/divisions/surgical-oncology/research/research-laboratories/phyllodes-tumor-research-phytr
Science Direct always brings up some of the latest info - they have standards on the quality of research shared, but you’d want to check out specifics on any information you find on the web.
Here’s an August 2024 article that saying EGFR (epidermal growth factor receptor) mutations are a good target for treatment of early phyllodes tumors, using EGFR inhibitors. Also notes that P53 (tp53) is often low in phyllodes tumors, so your pathology report might note that. P53 inhibits cell proliferation.
(Sorry long link) https://www.sciencedirect.com/science/article/pii/S1936523324001256
I recently (5 days ago) had two tumors removed from my breast. One was a borderline phyllodes tumor and the other was believed to be a fibroadenoma but turned out to be a benign phyllodes tumor. The margins were not removed from the one believed to be a fibroadenoma. They found atypical ductal hyperplasia and due to the rarity of these tumors and the confusing pathology report they are sending my info to Boston for a second opinion. As I navigate the internet searching for any and all information about phyllodes tumors I am shocked at how little information there is. I am feeling quite overwhelmed.
Some searches I did:
Where is phyllodes breast cancer research being done? Duke University and hospital. Dr. Rosenberger is the founder and Principle Investigator of an 11-site multi-center collaborative network of Comprehensive Cancer Centers that research phyllodes tumors. You can always get a second opinion from a cancer center if you wish. https://surgery.duke.edu/divisions/surgical-oncology/research/research-laboratories/phyllodes-tumor-research-phytr
Science Direct always brings up some of the latest info - they have standards on the quality of research shared, but you’d want to check out specifics on any information you find on the web.
Here’s an August 2024 article that saying EGFR (epidermal growth factor receptor) mutations are a good target for treatment of early phyllodes tumors, using EGFR inhibitors. Also notes that P53 (tp53) is often low in phyllodes tumors, so your pathology report might note that. P53 inhibits cell proliferation.
(Sorry long link) https://www.sciencedirect.com/science/article/pii/S1936523324001256
I recently (5 days ago) had two tumors removed from my breast. One was a borderline phyllodes tumor and the other was believed to be a fibroadenoma but turned out to be a benign phyllodes tumor. The margins were not removed from the one believed to be a fibroadenoma. They found atypical ductal hyperplasia and due to the rarity of these tumors and the confusing pathology report they are sending my info to Boston for a second opinion. As I navigate the internet searching for any and all information about phyllodes tumors I am shocked at how little information there is. I am feeling quite overwhelmed.
I recently (5 days ago) had two tumors removed from my breast. One was a borderline phyllodes tumor and the other was believed to be a fibroadenoma but turned out to be a benign phyllodes tumor. The margins were not removed from the one believed to be a fibroadenoma. They found atypical ductal hyperplasia and due to the rarity of these tumors and the confusing pathology report they are sending my info to Boston for a second opinion. As I navigate the internet searching for any and all information about phyllodes tumors I am shocked at how little information there is. I am feeling quite overwhelmed.
My 32 y.o. daughter had a mastectomy in Oct. 2023 due to a malignant phyllodes tumor. Will have scan/ ultrasound every 6 months for the future. I'm terrified it will recur.
Are these things true: Is that most likely in the first 2-3 years?
Chemo is not effective on this type of cancer?
First treatment is always surgery. Sometimes, radiation may be offered after surgery. "Cancerous phyllodes tumors don’t usually respond well to common breast cancer treatments, such as hormonal therapy and chemotherapy. Still, if the phyllodes tumor has spread to other parts of the body, you’ll usually be treated with chemotherapy." https://www.breastcancer.org/types/cancerous-phyllodes-tumors
It is common for patients with phyllodes of the breast to have frequent follow-up, which your daughter is having with an appointment every 6 months.
Have you been able to accompany her on her appointments to have your questions answered? How are you doing?
My 32 y.o. daughter had a mastectomy in Oct. 2023 due to a malignant phyllodes tumor. Will have scan/ ultrasound every 6 months for the future. I'm terrified it will recur.
Are these things true: Is that most likely in the first 2-3 years?
Chemo is not effective on this type of cancer?
Hi @ash2021, it must be both a relief that the lump was benign, but also worrisome that it was determined one was a benign phyllodes tumor. I'm tagging @johnsoncs1@ssinkey@marvinjjc@cheddar@sarapusc@michelle0509 to bring them back in the discussion to join me in welcoming you.
Ash, when is your follow up with your doctor? Has further monitoring been recommended?
Thanks for reaching out. It definitely has been a roller coaster of emotions. I’m thankful that both are benign. It is worrisome that one is a phyllodes tumor (even though it’s benign).
I had my followup with my doctor earlier this week. She did a great job in explaining the part forward. She explained that there’s a chance for the phyllodes tumor to recur and that we are going to do a plan of ultrasounds every 6 months as well as my annual mammograms for the next 2 years. I was given the option to visit my doctor office or just allow them to schedule me in office if they find something during the ultrasounds and/or mammogram. I opted to see my physician each time I go in for monitoring.
I had 2 lumps that were found in my breast and both were initially thought to be fibroadenomas and were benign. I requested to monitor them and my doctor agreed. We monitored these lumps for approx 2 years. One of the lumps started growing and my doctor and I agreed to remove both lumps. One lump was confirmed as a benign fibroadenoma. The other lump has been confirmed as a benign phyllodes tumor.
I’m trying to learn more about phyllodes tumors and understand what is to come next as I wait for my dr followup.
There’s definitely a lot to learn and I hope I will learn from this group as well.
Hi @ash2021, it must be both a relief that the lump was benign, but also worrisome that it was determined one was a benign phyllodes tumor. I'm tagging @johnsoncs1@ssinkey@marvinjjc@cheddar@sarapusc@michelle0509 to bring them back in the discussion to join me in welcoming you.
Ash, when is your follow up with your doctor? Has further monitoring been recommended?
I had 2 lumps that were found in my breast and both were initially thought to be fibroadenomas and were benign. I requested to monitor them and my doctor agreed. We monitored these lumps for approx 2 years. One of the lumps started growing and my doctor and I agreed to remove both lumps. One lump was confirmed as a benign fibroadenoma. The other lump has been confirmed as a benign phyllodes tumor.
I’m trying to learn more about phyllodes tumors and understand what is to come next as I wait for my dr followup.
There’s definitely a lot to learn and I hope I will learn from this group as well.
I was diagnosed with benign phyllodes tumor 2019 after its aggressively growe, I had full mastectomy 2022 and then I discovered it is malignant. Now my surgen urgent me to do radiation,but i am scared that it might damage my skin and may prevent me from getting reconstruction. Do anyone had this radiation treatment and reconstruction well.
Hi @malyah, some surgeons recommend waiting to do reconstrution until about radiation. Radiation therapy can cause undesirable changes to an implant reconstruction, so you may be better to have radiation first.
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1 ReactionSome searches I did:
Where is phyllodes breast cancer research being done? Duke University and hospital. Dr. Rosenberger is the founder and Principle Investigator of an 11-site multi-center collaborative network of Comprehensive Cancer Centers that research phyllodes tumors. You can always get a second opinion from a cancer center if you wish.
https://surgery.duke.edu/divisions/surgical-oncology/research/research-laboratories/phyllodes-tumor-research-phytr
Science Direct always brings up some of the latest info - they have standards on the quality of research shared, but you’d want to check out specifics on any information you find on the web.
Here’s an August 2024 article that saying EGFR (epidermal growth factor receptor) mutations are a good target for treatment of early phyllodes tumors, using EGFR inhibitors. Also notes that P53 (tp53) is often low in phyllodes tumors, so your pathology report might note that. P53 inhibits cell proliferation.
(Sorry long link)
https://www.sciencedirect.com/science/article/pii/S1936523324001256
Cut and paste this tumor in the search bar here on mayo clinic. I see discussions on this topic from the past.
I recently (5 days ago) had two tumors removed from my breast. One was a borderline phyllodes tumor and the other was believed to be a fibroadenoma but turned out to be a benign phyllodes tumor. The margins were not removed from the one believed to be a fibroadenoma. They found atypical ductal hyperplasia and due to the rarity of these tumors and the confusing pathology report they are sending my info to Boston for a second opinion. As I navigate the internet searching for any and all information about phyllodes tumors I am shocked at how little information there is. I am feeling quite overwhelmed.
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1 Reaction@yellowdoggirl1, I can imagine you're worried about your daughter. Please let her know that there is also a Young Adults Cancer support group here: https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/
First treatment is always surgery. Sometimes, radiation may be offered after surgery. "Cancerous phyllodes tumors don’t usually respond well to common breast cancer treatments, such as hormonal therapy and chemotherapy. Still, if the phyllodes tumor has spread to other parts of the body, you’ll usually be treated with chemotherapy." https://www.breastcancer.org/types/cancerous-phyllodes-tumors
It is common for patients with phyllodes of the breast to have frequent follow-up, which your daughter is having with an appointment every 6 months.
Have you been able to accompany her on her appointments to have your questions answered? How are you doing?
My 32 y.o. daughter had a mastectomy in Oct. 2023 due to a malignant phyllodes tumor. Will have scan/ ultrasound every 6 months for the future. I'm terrified it will recur.
Are these things true: Is that most likely in the first 2-3 years?
Chemo is not effective on this type of cancer?
Thanks for reaching out. It definitely has been a roller coaster of emotions. I’m thankful that both are benign. It is worrisome that one is a phyllodes tumor (even though it’s benign).
I had my followup with my doctor earlier this week. She did a great job in explaining the part forward. She explained that there’s a chance for the phyllodes tumor to recur and that we are going to do a plan of ultrasounds every 6 months as well as my annual mammograms for the next 2 years. I was given the option to visit my doctor office or just allow them to schedule me in office if they find something during the ultrasounds and/or mammogram. I opted to see my physician each time I go in for monitoring.
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Helpful -
Hug
1 ReactionHi @ash2021, it must be both a relief that the lump was benign, but also worrisome that it was determined one was a benign phyllodes tumor. I'm tagging @johnsoncs1 @ssinkey @marvinjjc @cheddar @sarapusc @michelle0509 to bring them back in the discussion to join me in welcoming you.
Ash, when is your follow up with your doctor? Has further monitoring been recommended?
-
Like -
Helpful -
Hug
1 ReactionI had 2 lumps that were found in my breast and both were initially thought to be fibroadenomas and were benign. I requested to monitor them and my doctor agreed. We monitored these lumps for approx 2 years. One of the lumps started growing and my doctor and I agreed to remove both lumps. One lump was confirmed as a benign fibroadenoma. The other lump has been confirmed as a benign phyllodes tumor.
I’m trying to learn more about phyllodes tumors and understand what is to come next as I wait for my dr followup.
There’s definitely a lot to learn and I hope I will learn from this group as well.
Hi @malyah, some surgeons recommend waiting to do reconstrution until about radiation. Radiation therapy can cause undesirable changes to an implant reconstruction, so you may be better to have radiation first.
You may be interested in joining this related discussion:
- Mastectomy and breast reconstruction pros and cons? https://connect.mayoclinic.org/discussion/mastectomy-1
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