Anyone diagnosed with Phyllodes tumor?

Posted by johnsoncs1 @johnsoncs1, Feb 25, 2021

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

Interested in more discussions like this? Go to the Cancer Support Group.

@ssinkey

I am so sorry you are going through that. I definitely understand the misery of the waiting game. I get my pathology results back tomorrow morning, and I am so nervous. I did want to ask how did you get them to send results to mayo clinic for a second opinion. I am waiting my results to be send for a second opinion as well?

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I was fortunate that my doctor was proactive all on her own and nothing was done on my end. I wish you the very best regarding your appointment tomorrow. Praying for good results but do your research and be proactive regarding your treatment. 🙏❤️

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@michelle0509

Hi there! Today was my follow up from my second Lumpectomy. My first Lumpectomy in 2020 was >12 cm and my second in July 2022 was 3 PT’s equalling 12 cm with additional PT’s still in my right breast. My pathology report showed BL with some questionable findings - my doctor sent their findings to the Mayo Clinics Pathology Dept. Unfortunately, they have not received the final report because they asked for additional slides. I have joined the Phyllodes Tumor group on FB and am now just waiting for my final results. The waiting is maddening.

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I am so sorry you are going through that. I definitely understand the misery of the waiting game. I get my pathology results back tomorrow morning, and I am so nervous. I did want to ask how did you get them to send results to mayo clinic for a second opinion. I am waiting my results to be send for a second opinion as well?

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@rcmlee

@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.

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Update: On September 2, 2022 I had my lumpectomy for my Phyllodes tumor on my right breast. They were able to get wide margins. I have my follow up appointment in the morning to get my pathology results. Hoping they are benign. If benign the plan is to monitor every 6 months with Mammograms and ultrasound to monitor for reoccurrence. If borderline or malignant then they will do Bilateral mastectomy and radiation. I will update the group once i get results tomorrow.

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@sarapusc

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.

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Is this your first mammogram since your surgery?

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Hi there! Today was my follow up from my second Lumpectomy. My first Lumpectomy in 2020 was >12 cm and my second in July 2022 was 3 PT’s equalling 12 cm with additional PT’s still in my right breast. My pathology report showed BL with some questionable findings - my doctor sent their findings to the Mayo Clinics Pathology Dept. Unfortunately, they have not received the final report because they asked for additional slides. I have joined the Phyllodes Tumor group on FB and am now just waiting for my final results. The waiting is maddening.

REPLY

@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.

REPLY

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.

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@auntieoakley

@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?

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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.

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@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?

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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

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