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All TopicsForum: Not Diagnosed but Worried → Topic: Phyllodes Tumor - Benign

Topic: Phyllodes Tumor - Benign

Forum: Not Diagnosed but Worried — Meet others worried about developing breast cancer for the first time.

Posted on: Feb 26, 2010 06:53PM

ps1968 wrote:

My doctor found a lump at a yearly exam on 1/18/10.  Within one month, I have had a mammogram, ultrasound, biopsy, a lumpectomy on 2/12 and then another surgery today to remove more breast tissue.  My diagnosis is a  phyllodes tumor.  The tumor was sent to a specialist out of state who specializes in phyllodes tumors.  He determined that not enough tissue was taken on 2/12 so I had the second surgery today to be sure.  I am confused by what little information there is about these tumors.  Some websites show that all phyllodes tumors are considered breast cancer (even benign ones) because they have a high probability to become malignant.  I would appreciate any information I could get to learn more about the tumors and whether they truly are all considered breast cancer or not.  Thank you for your help.

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Feb 26, 2010 11:39PM quapamom wrote:

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. 

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Feb 26, 2010 11:53PM lizflygirl wrote:

Hi ps1968.  I went through the same thing this past month.  Everything happened so fast.  I went in for a routine mammogram (I'm 36), they found a lump and sent me for an ultrasound.  The doctor's office called back and said they think it might be fibroadenoma but would like to biopsy to be sure.  I had a core needle biopsy.  My doctor took out 3 samples and the results came back atypical.  She told me it might be a phyllodes tumor and we scheduled a lumpectomy to make certain.  I had my lumpectomy on friday, 2.19.10.  It has been a week and I am still sore.  My lump was 1.5cm.  My doctor removed the lump with an additional 1cm of breast tissue surrounding the lump.  I received the pathology report yesterday.  My doctor called and said it was benign.  She stated it was low grade and the recurrence of it is slim.  I will need mammograms every 6 months probably for the rest of my life.  Good luck with everything.  I know it's hard and the waiting sucks.  Wish you the best.

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Feb 26, 2010 11:55PM lizflygirl wrote:

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.

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Feb 27, 2010 12:25AM quapamom wrote:

Lizflygirl, thanks for your insight.  I was half expecting that they would recommend quick removal myself.  I asked for a timeframe and this was in my surgeon's comfort level and it coincides with Spring Break for me (I'm a teacher).  The whole process has put me negative in sick days.  I can't seem to accrue them fast enough.  It seems almost nothing could be done the same day so I had separate sick or half sick days for general doc confirmation of lump, mammogram, ultrasound, core needle biopsy and surgery consult.  So, in an effort to save my days if I need them after this, I opted for the later date.  Do I think I was crazy setting myself up for more days to worry about what this thing is?  You bet!  This timing allows me to have my mom come to help for immediate recovery as hubby will be working and I have two young kids (5&8).  I'm worried about the biopsy itself, but also hoping for the same benign result as you. 

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Feb 27, 2010 02:59PM ps1968 wrote:

Thank you, quapamom, for your response.  I am sorry to hear about all that you have been going through as well.  You mentioned that your surgeon said that phyllodes is not in the same category as other breast cancers.  So, does that mean that your surgeon was confirming that phyllodes tumors are cancer?  I still get confused by the information that is out there (or lack there of, I should say).  I also found info that said that the tumors can spread to other places too.  Has your surgeon provided a source of information you can go to where you can learn more about them? 

It is only one day after my surgery and I am trying to rest as much as possible.  I also, work in a school, (I am a Spanish speaking ESL teacher's assistant) and will need to be rested enough to go back to school on Monday. 

I hope that everything goes well for you and you won't have any more surgeries.   Take care.

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Feb 27, 2010 03:13PM ps1968 wrote:

Hi lizflymom.  I am sorry to hear that you have had a surgery too.  I hope you don't have to have any more.  The tumor I had was 3 cm.   Did your doctor give you any resources to learn more about phyllodes tumors?  You had mentioned that you will have to continue mammograms every 6 months for the rest of your life.  My doctor and I have not had any discussion about followup care.  We never really had time!  I went in for my 2 week checkup after the first surgery and at that time, he told me that I had to go back for another surgery only 2 days later.  I think he was also concerned that it would grow rapidly, as they are known to do. He did a surgery for another patient earlier in the week.  Her tumor was the size of about a softball.  It was malignant. 

I am glad that I have found an outlet to communicate with other people going through the same thing I am.  It is nice to know that I am not alone out here.

Stay well.

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Feb 27, 2010 04:05PM quapamom wrote:

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!

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Feb 27, 2010 04:31PM tpp wrote:

I went through 2 surgeries in 2006 on same side. my tumor was size of lime. have no problems for 3 years. now i just found one on the other side.

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Feb 27, 2010 07:27PM ps1968 wrote:

tpp, I am sorry to hear your news.  Have you talked with your doctor about what will happen next? I hope all goes well with you.

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Feb 27, 2010 10:49PM lizflygirl wrote:

I have two young boys (4&6) myself and I hate the thought of not being here to watch them grow up.  The thought of these tumors reoccuring scares me too.  I've read that they can come back in a couple months or a few years down the road. I do have a friend that is an Internest and he made me feel a little better about this.  He stated that because they are so rare and there is not enough information out there about phyllodes tumors statistics can be incorrect. My doctor did say that most likely it will not come back.  I am going to make an appt. at Northwestern University here in Chicago.  They are rated #2 in our state for breast cancer care.  I hope someone there will have more answers.  My doctor did not give me direction for more information.

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Feb 28, 2010 01:14AM jenrio wrote:


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!  

more details in my blog http://killerboob.blogspot.com

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Feb 28, 2010 09:49AM ps1968 wrote:

lizflygirl, I lived in the Chicago area not that long ago and know that you should be in very good hands there at Northwestern. I moved to the Columbus Ohio area after Chicago.  My current doctor was voted by all the local doctors as being the best breast cancer doctor in the area. My tumor was sent out to 2 specialists.  I don't know where the first one is but the other doctor is a doctor at Cornell who is supposed to be one of the top authorities on phyllodes.  I think the tissue from my second operation on 2/26 will be sent back to him.  My surgeon feels confident that there will be no signs of cancer in this tissue.  Fingers crossed.

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Feb 28, 2010 10:12AM ps1968 wrote:

jenrio, the tumor that I had removed was 3cm.  I had a mammogram 12/30/08 with no abnormal findings.  I did not notice the lump before 1/18/10, when it was found by my doctor.  There were no signs of it on the mammogram from 12/30/08.  

I agree with you 100% about us exchanging information.  It looks like we have become the "experts" in phyllodes tumors because we want to and because we have to.  It seems that because there is so little information, we need to take an even more active role in our health.  Since my doctor first started talking about phyllodes tumors, I have been researching them day and night and pretty much coming up with nothing or finding conflicting information. That is why I started this post (on the day of my second surgery) to reach out to others in the same situation.

Thank you to all of you who have replied to me!



 

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Mar 2, 2010 04:26PM lizflygirl wrote:

I called Northwestern Memorial Hospital in Chicago for a 2nd opinion consult appointment.  I am set to go 3.23 with my pics, slide, pathology report and all.  I will let you know the outcome.  I like my current doctor but I am not comfortable with her follow-up advise.  When I called I spoke with a nurse at their breast cancer site and asked her a few questions on phyllodes tumors.  She seemed very knowledgable and mentioned they average 10 to 20 patients a month with phyllodes tumors. That seemed kind of high because everything I have read about them stated they are very rare.  I asked her again and she said that's the number.  That made me feel better knowing they see this more often than most.  If you are in the area and want a 2nd opinion call and see one of their Oncologists.

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Mar 3, 2010 02:35AM jenrio wrote:

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.

more details in my blog http://killerboob.blogspot.com

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Mar 3, 2010 08:12PM ps1968 wrote:

Hi jenrio,

The number of people who are seen at your doctor's office for phyllodes did seem very high.

The article from the link you gave was interesting.  You seem to be a good detective in finding good material! I have read quite a few articles about the tumors and from what I could guess, I think shelled out means that they remove the tumor and as much surrounding tissue as possible to leave a "shell" or empty space.  Course, that is just a guess. 

I got a call from my doctor's office yesterday.  Had my second surgery on 2/26 and the pathology report is back already.  The surrounding tissue that he took is free of any trace of the tumor!  I go back to remove the bandages next Thursday and will learn then about what the future holds for me. 

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Jun 16, 2010 05:48PM kennabean wrote:

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?

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Jun 22, 2010 10:39PM noworriesbehappy wrote:

Hey kennabea, You're not alone! I might have a phyllodes tumor as well. I just had a core biopsy and they are not sure so I have to get it all removed. We'll be OK!!! My surgery is on 6/30. Please keep me updated!  And yes, there are not many lay articles on PT. I found many research articles as first hits! That just shows you it's not common enough for webmd to do a little blurb on them.

God bless you my beautiful ladies. God is good. Be Patient, smile, and remember it could be worse. 

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Jul 13, 2010 10:52PM lizflygirl wrote:

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.

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Aug 21, 2010 10:48PM SS095 wrote:

Does anyone know if there is any kind of genetic component to Phyllodes tumor? I posted my story under "am I overreacting". Basically I have a dimple that seems to be getting bigger with a firm movable round little lump under it. I am going to a Breast Cancer clinic next week for work up. (screening mammogram a month ago showed some kind of  "asymmetry" but follow-up mammo was clear.) The mammograms were done before I discovered the dimple and lump.

I have lots of history on my dad's side of the family for breast and ovarian cancer. I just found out from my mother that the benign tumor she had removed many years ago was actually a benign Phyllodes tumor. I'm trying to learn if that matters at all for my family history.

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Sep 2, 2010 12:59AM madeitthrough wrote:

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. :)

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Jan 5, 2012 11:01PM hillowee wrote:

I was just told the 28th that it is a a phyllodes. The doctor told me that i could have it removed when it works for me no hurry. From everything i read it should be out asap. The doctor i am going to is one of the best breast surgeons in northern california i just worry if she does not know the guidelines for this type of tumor. friday i should get a call for my procedure date. Bad part is i have a jerk boss who will not respond to when i can take off.

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Feb 8, 2012 01:41PM Morethanenoughjoan wrote:

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!

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Feb 13, 2012 02:39PM, edited Feb 13, 2012 02:42PM by Ceyda

Hi all, great to connect with you on this forum. 

I am 29 yrs old. I had an ultrasound, mammogram, core biopsy... etc. in the last 6 months, concluding that I had 3 fibroadenomas in my right breast, which were not growing (at least in the 6 month period we were watching them).  Long story short, my doctor decided to remove them. After the surgery, she sent all 3 masses to pathology (I guess that is standard practice). One of the fibroadenomas came back as a benign phyllodes tumor (2cm). Now, I am going back to the doctor so that she can remove the surrounding tissue in the area that the phyllodes tumor was removed from. 

A part of me is a little suspicious- I am wondering if the phyllodes tumor is actually a fibroadenoma. I am 29 & the size of the mass was not changing much. I read online that phyllodes tumors are mostly seen in women in their 40s and that phyllodes tumors grow rapidly in a short period of time, whereas fibroadenomas are common in women in their 20s and may or may not grow much. Is that true?

Wishing you all the best! Good luck with everything! 

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Feb 13, 2012 04:27PM cinnamonsmiles wrote:

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.

Mastectomy without reconstruction was NOT the worst or only available option. I chose it and am happy with my decision.

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Apr 6, 2012 11:09AM CocktailMom wrote:

In one week I feel like my world has shifted. 

I was planning on having a breast reduction and had to have a mammogram before surgery. Monday I had a mammogram and they found a mass in my left breast. I then had an ultrasound which determined I needed a core needle biopsy. Did the biopsy on Tuesday. Thursday I heard from the radiologist that it's a benign phyllodes tumor. I'm scheduled to meet with a breast surgeon on May 3rd. I am also having nipple discharge in the same breast that they are concerned about as well. I'm searching the Internet for more information and found this discussion thread. Thank you all for sharing your stories. 

I am feeling as though I want to be aggressive about this...has anyone just had a mastectomy instead of a lumpectomy?  I am worried about having a recurrence. 

Feeling very scared and confused.

Any further insight would be wonderful!!!

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Apr 9, 2012 05:51PM kaytsmommy wrote:

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!

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Apr 10, 2012 04:22PM gina99 wrote:

Hi, I am new to this site, and trying to read everything I can about phyllodes.  My ultrasound biopsy results came back as "fibroadenoma versus phyllodes tumor" and I am meeting with my surgeon April 16.  

@CocktailMom, mine was pretty quick too, from just a routine mammo to biospy results, so scheduling with a breast surgeon in a week. I am just trying to soak up any information I can, as people around me keep saying 'you're going to be fine'.  

I'll keep everyone posted, and thanks to everyone for sharing, I really appreciate hearing your stories.

 

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Sep 19, 2012 11:08PM x2011skm wrote:

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. 

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Sep 24, 2012 07:31PM Mindyandgang wrote:

X2011skm. I am very surprised that the Dr. Told you that you have a phyllodes by only a ultrasound. I would not count on that. I found a lump 2weeks ago, went to OB on the Monday, mammo and ultrasound on the Tuesday, met with the surgeon on the Thursday of that first week, the second week I had a miraluma scan (nuclear) on the Tuesday pre-op on the Wednesday and excisional biopsy on Thursday last week. They told me it would probably be benign. I got my results today and it was a benign 2cm phyllodes tumor. The only reason I can see why they think it may be a phyllodes is that maybe it isn't symmetrical. Usually fibroadenomas are almost perfectly oval. What type of biopsy are you having? I would insist on excisional because they would remove it which will have to be done anyway. The information I have found says that they grow fast and even if they are malignant it has to be removed. Chemo and radiation will not cure it. I feel and hope that it is just a fibroadenoma that you have. BTW I am 42 yrs. and as you say phyllodes are already rare but in an 18 yr. old i think even rarer. These usually hit women 40-50 yr olds. Surgery wasn't too bad, I have a 4 inch incision because he took out surrounding tissue, swelling and bruising but I hear from others that have had both needle biopsy and lumpectomy (excisional) and I hear the needle biopsy hurts more! Good luck! P.S I am only four days post-op

Surgery 09/20/2012 Lumpectomy (Left)

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