phyllodes tumor of breast

I had a 5cm lump removed because biopsy could not differentiate fibroadenoma and phyllodes tumor.  waiting for path report.  I am scared that I could have cancer and yet chemo and radiation will not work for it.  What if a cell escaped even though there is a wide margin removed.


This discussion is related to Phyllodes Tumor.

[japdip]

You do know that all Phyllodes tumors are NOT cancerous ... cells do not escape and even if one did and the diagnosis were cancer then the follow-up treatment would take care of that. I'm not sure why you seem to think that Chemo and Radiation would not be an effective treatment. I think you are jumping to conclusions that may never even happen. The Path report will explain it all .... the diagnosis as well as how clean the margin were and any treatment needed will be determined from that.   Stay calm .... (as calm as you can)    Regards ....

[jeanne32]

Thanks for responding!  Things I have read say that this type of tumor if cancer does not respond to chemo, radiation, or hormone therapy.  It makes it seem as if there is nothing to even try.  Just waiting for path report, and I am not good at waiting...

[japdip]

None of us have ever been good at waiting ... most women say that is the worst part ..... all the waiting. Hang in there ...

[jeanne32]

I found out today that it is a phyllodes tumor low grade, with clean margins.
My surgeon wants me to see an oncologist?
Any advice on questions to ask or what my prognosis is now?

[japdip]

Since Phyllodes is known not to respond to any of the conventional treatments the only big question would be "what are my chances of recurrance?" "Would mastectomy lessen the chances rather than lumpectomy only?" It is written that only about 4% of malignant Phyllodes will metastisize. If I were you I would write down every question (no matter how seemingly insignificant) and take the list with you when you see the Oncologist. AND .... Don't leave the office with any question unanswered. There have been studies concerning ?? treatment for Phyllodes and you might ask if there is anything that you could take advantage of at the present time.     Kindest regards ....

[blueeyes799]

I was diagnosed with a malignant phyllodes tumor in April 2009.  As you know they are extremely rare and fast growing.  I had surgery 2 weeks later to remove the approx.9cm lump, and received a breast reduction.   I did not have a mastectomy. I had great doctors here in SF bay area, but also saw an expert at Stanford.  He told me that this cancer does not respond to chemo or radiation so I did not put my body thru that for nothing,  The biggest concern is for re-occurrance but there is not a high degree of that happening.  Every 6 months I have a mammogram, CT scan, and see my oncologist and surgeon.  There is not medication like tamoxifin (tamoxifen) so i will probably have to go thru this for years.   Interested in finding out what you have learned during follow-ups?

[jeanne32]

Hello,
Thanks for responding.  I am glad to connect with you.  I have a question for you.  You said you were diagnosed as a malignant phyllodes tumor.  What pathology scale is that based on.  The World Health Organization uses Benign, borderline, malignant.  Some pathologist use low grade malignant / high grade malignant.  My biggest frustration is knowing what scale the pathologist used and where I fit in on the spectrum.  I was diagnosed as a low grade malignant phyllodes tumor.  The "low grade" part sounds like I am on the benign end of the spectrum (even though I know they are never benign), the malignant word sounds like I am on the other end of the spectrum.  I would love to keep in touch with you even if it is by email.  I hope you are doing well, it sounds like it has almost been a year for you!  Are you scared that it will come back?
Keep in touch!  : )

[jeanne32]

I am anxious to hear a reply from you.  I would love to compare notes.  I have gathered so much info this last month.  And talked to a variety of docs getting their opinion.
Hope to talk soon!

[blueeyes799]

I honestly do not remember whether is was a low grade or high grade.  You say "you know they are never benign", that is not true.  Phyllodes tumors can be benign.  Mine was not.  The thing you want to make sure of is when they removed the tumor the pathology report came back with clear margins.  My surgeon had a pathologist here do a report as well as sent it to a pathologist at Harvard.  Also, when the tumor was removed did they check your lymph nodes?  Mine came back clear so that was great.  My tumor was on the right side of my breast that is under your arm.  It grows in the muscle and is not a hormonal cancer like most breast cancers.  Less than 1% of all breast cancers are Phyllodes so unfortunately there is not a lot of data.  I feel good.  I had a follow-up reconstructive surgery in November.  I think it is human nature to worry that it may come back.  I think anyone who has had cancer feels that way.  I do check myself daily now though and I am still getting felling back from all the surgery I had so when I feel a nerve healing I worry a bit.  How did you discover yours?  For me I felt a slight pinching feeling and within a couple weeks I had a lump that you could not dismiss.  Went to the doctor and after tests in 1 days I was in Surgery.

[jeanne32]

Hello,
If you don't mind me asking how old are you.  I am 35.  I am going to the Siteman Cancer Institute in St. Louis, MO.  I have had 3 pathologists look at it.  My margins were clear.  All of my docs say that this is spread thru the bloodstream not the lymph nodes like traditional cancer, so I did not have a sentinel biopsy.  It is frustrating how the docs all think a little different.  I wish there could be a giant checklist.  I have always checked myself often because my mom had breast cancer twice (estrogen receptor) and the second time it had spread and she passed away 3 years later.  I miss her so much!  Because of all that I check myself all the time.  I was adjusting my bra strap and felt it.  It came out of nowhere.  Was in surgery a week later.  I had a lumpectomy.  That was the end of Feb.  My oncologist did a chest x-ray (came back clear, thank you God!), he also did genetic testing on me.  We will discuss that in 3 weeks.  What has your doctor told you about odds of returning?  Does it come back more aggressive?  My doc said it usually is the same grade if it were to return, but a lot of what I read says it comes back more aggressive?  That scares me!
Did you have any extra tests: bone scan, liver scan, etc.?
I would love to keep in touch and compare doctor notes and advice!     : )

[blueeyes799]

Hi, I was 47 when diagnosed.  I do not know if doctors really know what the recurrence percentage is.  This is a really rare cancer so not much is known.  In fact I just had another biopsy "just to be on the safe side" a couple weeks ago.  All turned out okay but I will continually err on the safe side, since there is so much unknown about the cancer.  I have follow-up appointment every 6 months with my cancer surgeon and oncologost, which is later this month.  I will ask more then.  I had a full body CT scan, a bone scan when I was first diagnosed.  I have had a couple additional chest CT scans (there was a spot on my lung, but they think it is an infection that never healed), and have those every 6 months, next one will be in June.  I am not overly concerned about t coming back or to what degree because that will make you crazy.  Unfortunately they just do not know with Phlylodes.  Hope you are doing well.

[SueYoung55]

info from: http://en.wikipedia.org/wiki/Phyllodes_tumor

Phyllodes tumors (from Greek: phullon leaf), also cystosarcoma phyllodes, cystosarcoma phylloides and phylloides tumor, are typically large, fast growing masses that form from the periductal stromal cells of the breast. They account for less than 1% of all breast neoplasms.

Classification
Phyllodes tumors are a fibroepithelial tumor composed of an epithelial and a cellular stromal component. They may be considered benign, borderline, or malignant depending on histologic features including stromal cellularity, infiltration at the tumor's edge, and mitotic activity. All forms of phyllodes tumors are considered breast cancer, as even the benign form is regarded as having malignant potential.

They are classified as a fibroepithelial tumor by ICD-O, but not by MeSH.

Presentation
This is predominantly a tumor of adult women, with very few examples reported in adolescents. Patients typically present with a firm, palpable mass. These tumors are very fast growing, and can increase in size in just a few weeks. Occurrence is most common between the ages of 40 and 50, prior to the menopause. This is about 15 years older than the typical age of patients with fibroadenoma, a condition with which Phyllodes tumors may be confused.

Treatment
The common treatment for phyllodes is wide local excision. Other than surgery, there is no cure for phyllodes, as chemotherapy & radiation therapy are not effective. The risk of developing local recurrence or metastases is related to the histologic grade, according to the above-named features.

****************One study has suggested that total mastectomy is more effective than breast-conserving surgery.***************************

Spectrum
Phyllodes tumors are considered to be on a spectrum of disease[2] that consists of fibroadenoma, fibroadenoma variant and benign phyllodes. Some would extend the spectrum to include malignant phyllodes tumors and frank sarcoma.[citation needed]

[jen14101]

Hello,

I am 22 years old and I found a lump on my right breast at the beginning of January 2010.  I went to the doctors and she said it was most likely a fibroadenoma and refered me to the hospital where I had an ultra scan.  It was determined a fibroadenoma.  I had the lump removed on 25th March and went back for my post-op assessement on Friday.  I was told it was a benign Phyllodes tumor.  He needs to operate again to remove the clear margins.   I can't believe how rare this type of tumor is and especially at my age.
I realise that some of you have the border-line maliganlent or maligalent so I should be lucky to have just a benign.  It is the timing that is awful.  I leave to live in Africa for a year in 17 days! As this is only benign I may not be rushed in (I understand that).  I know that my health is more important but I have been waiting for this moment for years (paid thousands also).  I have experienced myself at how fast the tumor is at growing.  When I first found it, it was grape size, within two months it had doubled and moved closer to the surface of the skin.  I just don't think I can wait a year before having the operation knowing that it may (or definately) grow back.  Jen

[jeanne32]

Sorry it took so long to respond.  I am sorry to hear you had to have another biopsy, but I am glad to hear everything was fine!  What was it?
I have learned more about my case since we last emailed...
Nine years ago I had a fibroadenoma removed no clear margins which is fine for a fibroadenoma.  My oncologist wanted to get those slides.  At my appt. he told me the pathology dept. there looked at the slides and it was misdiagnosed 9 years ago.  It was a phyllodes tumor too.  He said this one was a recurrence because the slides now and 9 years ago look identical.  The good news of that is that it took 9 years to regrow so the oncologist says that tells him how low aggressive this cancer is.  Now we have the clear margins and he thinks I can relax about worrying that a cell may have spread.  I see him again in Sept.  I think there should be a new protocol that clear margins are required for fibroadenomas too.  I pray that you get good news at your June check up.  Keep in touch, it has really helped me to talk to someone else who has been diagnosed with this.

[jeanne32]

Hello,
Sorry to hear about your diagnosis.  I have learned a lot about phyllodes tumors the last 2 months.  My doctors have all told me that they are never benign they are all cancer however yours may behave in a benign fashion.  I would recommend that you see an oncologist.  And have the surgery to remove the margins.  Read the other post I just made about myself.  I know you said this trip is really important to you, but PLEASE PLEASE do not put your health on hold even if it means losing thousands of dollars.
Take care

[jeanne32]

I have not heard from you since my last post, I hope all is well with you!

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