Phyllodes Tumor - Benign

Hi!  I am sorry that you had to go through two surgeries to get to your diagnosis.  I am scheduled for an excisional biopsy/lumpectomy to rule out phyllodes tumor on March 13th. Fingers crossed!   I, too, have searched all over for information and found little.  According to my surgeon, phyllodes are not in the same category as other breast cancers. (Not too sure what that means) It tends to be more local and not spread to other areas of the body (although I found some sources dispute this).  Chemo and radiation are not typically helpful, only removal.  (It may have been one or the other and not both, but I was not ready to go mentally to the next step when I was with the doc.)  I want to know more, but also am hoping it really is just a fibroadenoma.  I'll cross that bridge when I come to it, but only because I can't find any more info right now. 

I wish you the best quapamom.  Can you get in sooner for the lumpectomy?  It seems like a long time to wait. My doctor did mention they are very aggressive and grow quickly if they are malignant.  She advised me to remove it the same week as my biopsy.

ps1968, I was in a bit of shock when I was with the surgeon because nobody had mentioned phyllodes before.  My gp said no signs of atypia but pathology recommended removal.  She would never say why other than just to be safe.  Sounded good initially, but not too convincing.  I finally saw pathology report myself.  It said the core biopsy showed BOTH fibroademona and phyllodes.  So, I am not totally in the clear.  Anyway, I understood my surgeon to say that some are benign and some are cancer.  I didn't get any more information on phyllodes because he was explaining how rare it was so not likely (I'm thinking it is still possible, so I want to know more).  No sources of information were suggested.  My surgeon talked about doing the surgery on a Friday and I should be okay for work by Monday.  Then he asked what grade I teach (kinder) and said that might be a bit harder since I have to be on the move and around unpredictable kids.  So now I'll have a week to recover at home with my own kids.  I wish you the best in your recovery!

Sorry to hear that tpp.

Oh well. Mind telling me how fast does your tumor grow? how big they are currently and in the past and how long have you noticed them etc.? And any other information?

The problem with phyllodes is that it's such a rare tumor (1% of all malignant breast tumors), very few docs have seen a lot of them and specialize them. very few drug companies would customize drugs/therapy to target them. That's why standard chemo/radiation doesn't work on them, and death rate quite high for malign tumors. So patients need to find each other and share information, like growth rate, size of tumor, location, pathology report.

Also, remember, if you had your tumor excised, remember to ask how you can access the left-over samples. so in future if more genetic results are available, tests can be done on them.

I just created a google group
http://groups.google.com/group/phyllodes-patients
 

Everyone should read this article:

http://www.nytimes.com/2010/02/23/health/research/23trial.html 

There should be and will be more drugs like this, but phyllodes probably will be one of the last, simply because there are so few cases, so few specialists.  that's why the patients should talk more about each other and pool information!  

I just found this article:

http://emedicine.medscape.com/article/188728-overview

 Particularly interesting is this for anyone considering biopsy:

"In most cases of cystosarcoma phyllodes, perform wide local excision, with a rim of normal tissue.7,8,9 No absolute rules on margin size exist. However, a 2 cm margin for small (<5 cm) tumors and a 5 cm margin for large (>5 cm) tumors have been advocated.

The lesion should not be "shelled out," as might be done with a fibroadenoma, or the recurrence rate will be unacceptably high."
 

Anyone knows what they meant by "shelled out"?   I'm guessing it means when excising,  not the destroy the integrity of the tumor.

I just found out I have a phyllodes tumor in my breast. i get a lumpectomy this week though. I'm very nervous. I'm 18 and I've never had surgery before. I have no idea what to expect. After surgery how long will I be in pain for?

Good luck with everything! I had a phyllodes tumor in my right breast back in February.  Make sure when you have your lumpectomy they remove a clear margin.  I just had my 4 month follow-up mammogram and so far so go.  I did develop a fibroadenoma right next to where the phyllodes was though.  Had a core biopsy to confirm it was not another phyllodes.  Let us know how things go.

Hello SS095. According to my doctor, genetics play a certain role in breat cancer, but not to a large extent. However, my advice is to get all your doubts cleared by going for a FNA first. Further diagnosis may then prompt your doctor to take further actions.

I'm only 17 and I just had a surgery to remove my PT, which turned out to be benign. I had 3.7cm removed, including clear margins. My nodule grew from 1.9cm to 2.2cm within 3 weeks. So my advice is to act fast and seek a specialist's help. I hope the best for you Trust me, its not as scary as you think. Good luck!

P.s. I'm in recovery state now and it actually doesn't hurt at all.

Hello hillowee,

I just wanted to let you know first hand, Be Worried and in a Hurry to have the lump removed. I have been dealing with recurring Phyllodes Tumors for the past 7 years. I was first told not to worry, it is benign. I would just have a Lumpectomy and that it would not return. Sadly enough over the past 7 years, I have had 4 Lumpectomies, 3 times the doctor didn't take enough tissue, so I had to more tissue removed. So finally my doctor and I came to the conclusion to remove the breast via Mastectomy with Trim flap reconstruction and I did, that was almost 2 years ago today. I found another lump in my breast late last year, went for an ultrasound with biopsy on the same day.  I bet you can guess another Phyllodes Tumor in the reconstructed breast. So I had it removed, with the same story, not enough tissue taken and this time the Phyllodes Tumor had turned Malignant. So, I have just have a second Mastectomy on the same breast, with clear margins no more malignant tissue and don't want reconstruction, just want to be left along.  

  My best advise to anyone with this diagnosis, take it and run with it, don't let this tumor stay in your body no longer than it has to, because it will take root and reappear!  This is my story, and I am determine to win, so please if you can have your tissue sample donated, so we can find a way to fight this monster head on!  I also have heard the story of not enough information regarding Phyllodes Tumor, Ladies its time to help them find some information, so we can find a end to this issue. I live in the Midwest, please! anyone with this issue want to get together and form some sort of group or anything I am ready, because I believe something or someone is not saying enough about this issue. I am a young women with little children and I am on  mission to live to raise my babies. So help me fight this!

I also hope that your boss will understand your health issue is important and to allow you the time off, but it is your life, and You only get ONE!!! Best luck to you!!!

signed,

Morethanenoughjoan!

On the Amercian Cancer Society's Breast Cancer Disucussion Boards, csn.cancer.org, there is a young woman with the name Hootiegirl who has had cancerous phyllode tumors with mets to the bones. I do believe her dad is an oncologist, so I am sure she received the best of care. You could look her up on that website. She seemed to be very knowledgeable about those cancerous tumors. And yes, they are very rare. She was in her early 20's or late  teens (meaning 18 or 19) when diagnosed in 2010.  A year later, she had mets to the bones.She doesn't seem to post regularly but it could be worth a try.

Hi There!

I am going through the EXACT same thing right now.  I just had my second surgery last week to remove more breast tissue because the result from my first surgery was a phyllodes tumor.  This was after waiting on pins and needles for almost 2 months while a sample from the first tumor had to be sent away.  I did not read through all the other responses but would look forward to chat more as I just don't know who to talk to about any of this!

Today I was diagnosed with a phyllodes tumor. I have had an ultra sound and am now waiting on a biopsy but I've already talked to my doctor about removal. I'm 18 years old and this is all really shocking to me. I'm surprised they are so certain its phyllodes and not a fibroadenoma (much more common for my age). I will post the results from the biopsy. If anyone has any words of wisdom please feel free to share. Thank you for your stories.