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Has anyone here been dx with phyllodes tumor?

cheyennedawn's picture
cheyennedawn
Posts: 70
Joined: Sep 2009

I went to my doctor because I had a lump in my left breast, that grew very large, very rapidly. Of course my doctor sent me for a mammy and ultrasound. I was referred to a general surgeon who said that because of the size of the tumor (it was the size of an egg) and was freely movable that he was almost positive that it was a phyllodes tumor. I was scheduled for a biopsy the following week, but unfortunately that was inconclusive. Next came the partial mastectomy, but the results from that came back that it was a malignant phyllodes tumor, and while all of the tumor was removed (it was the size of a lemon by then), the thing had alot of (roots) that was left in the breast. So I had a complete mastectomy of my left breast. This has been horrible. I feel lucky that I did not have to go through chemo, or radiation treatments, but on the other hand, to be told that you have a tumor that was treatable only by surgery is very scary. What if the thing has spread? My lymph nodes were all clear, but after reading about this type of tumor, it appears that usually there is no lymp node involvement, the chest wall and lungs are usually affected first. This is apparently so rare, that there is not much info on it (not useful anyway), and it seems that there is no standard treatment for it. Has anyone else been treated for this type of cancer?

hugs, cheyenne

mimivac's picture
mimivac
Posts: 2147
Joined: Dec 2008

My radiologist suspected that I had a phyllodes tumor at first, but it turned out to be invasive ductal carcinoma. I agree that there's not a lot to read up on when it comes to malignant phyllodes. Is your oncologist experienced in this type of cancer? If not, I would seek out an expert in the field so you can get the best care. Have you a chest x-ray yet?

Mimi

VickiSam's picture
VickiSam
Posts: 8255
Joined: Aug 2009

I agreed 100% with Mimi. Call schedule an appointment. Had mri ? ask and insist. Check out specialist within your insurance group ..

It's your body ..

Take Care.

VickiSam

cheyennedawn's picture
cheyennedawn
Posts: 70
Joined: Sep 2009

Thanks for your advice. I don't have an oncologist, I guess because I don't have to go through any further treatments, except possibly more surgery. My general surgeon is wonderful, and is experienced with this type of tumor. No, I haven't had a chest x-ray or an mri, and am wondering if those are standard tests?
Thanks everyone for the support and advice. It seems like I am living in a different country or something, this is so unfamiliar to me. And, while my friends and family have been great, they don't have any idea what I am going through, and I can't explain it to them. It's nice to be able to talk to others that have or are going through the same thing. It means so much!

Cheyenne

MyTurnNow's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

Cheyenne, I just wanted to welcome you. I don't have any experience with your dx but I'm sure there are women/men on here who do. Keep asking away.

aurora2009's picture
aurora2009
Posts: 545
Joined: Jun 2009

I'm sorry I can't help you with this but would like to welcome you to the group, please post often and let us get to know you. You'll find great support here.

Good luck
Aurora

cheyennedawn's picture
cheyennedawn
Posts: 70
Joined: Sep 2009

Thanks to everyone for being so welcoming. It is so nice, expecially at a time like this. I feel like my life is in limbo right now. It takes all I have to get up and function every morning, get my kids off to school and me to work. I am so exhausted, my housework has fallen by the wayside. Sometimes I feel so lazy, all I can do when I get home at night is fall into bed, or the couch. Some nights I am even to tired to eat. My brother lives with me, so luckily he makes sure the kids have done homework and had dinner before I get home, but I feel so guilty because I don't have the energy to spend time with them. It is especially hard on my 5 year old little boy. He is a mamma's boy. All I want at this point is to be here to watch them grow up, and live happy, full lives. I'm not saying that I think the cancer will get me, but I have to admit that sometimes when I let myself think about it, it scares me to death. Not really for me, but for my kids. Who would take care of them? It is the question that keeps me awake most nights. Sure, I have friends and family that would be glad to take them in, but I am shelfish, I want to be the one taking care of them.....
I'm sorry, I just kind of started rambling on. I just don't have anyone here to talk to about these things. My friends get upset if I bring the subject up. Don't get me wrong, they are very supportive of me, they just don't like to hear that I have been thinking in that direction, but of course I have. I'm human. But, I will continue to pray, and hold onto my faith in God, that through him, we can overcome all things.

Thanks for letting me vent!
Hugs,
Cheyenne

Akiss4me's picture
Akiss4me
Posts: 2192
Joined: May 2009

I hear what you are saying. Sometimes I think who will be here to take care of my husband? (kids are grown). Funny thing, he can take care of himself, as he has done an awesome job taking care of me. Your feelings are normal. It sucks though when thoughts of our mortality creep into our little heads. I just finished rads so I know all about being tired.. hang in there. You came to a great place for support and venting. As a matter of fact, whatever is on your mind has probably been on someone else's mind at one time or another. So, come her anytime and for any reason, and we will do our best to walk through this journey with you! Pammy

denisegreen
Posts: 3
Joined: Sep 2009

Hey Cheyenne:
I was diagnosed back in December with the Phyllodes Tumor.  I underwent surgery to remove it and then had to have a second surgery to remove more tissue.  After the second surgery the pathology showed the tumor to be boarderline but they showed clear tissue all the way around the tumor.  Thought I was done except for reconstruction and was in the process of setting up the reconstruction surgery when my six month checkup showed another tumor.  It had returned within six months and this time my doctor recommended a mastectomy.  When they took it out last month it was 7cm and was malignant.  Because this tumor is so rare and that it reoccured so quickly my doctor sent me to an oncologist.  My doctors were concerned because of how fast it reoccured, the size it was in such a short time and that it was malignant.  They did however show clear tissue all the way around the tumor again this time and they also tested 3 lymph nodes and found no cancer present.  The oncologist I saw thought that since it was so aggressive that he thought I should have radiation therapy, but he wanted to consult with a specialist in New York that handles rare cancers.  Unfortunately they both recommended that I have radiation therapy as a precaution to make sure that it does not spread through my blood or come back in the chest wall.  I don't want to scare you but you do need to keep a very close watch to make sure it does not reoccur and maybe you need to consult with an oncologist.  They tell me chemo does nothing for this tumor but radiation has been done in the past and may help prevent it from spreading to the chest wall or lungs.  I feel good about my treatment path, especially since my doctor consulted with the specialist in New York who has treated these tumors before.  It is scary facing a disease that is so rare especially since there is no standard treatment. Good luck with your recovery process and I hope I helped!

Good Luck!
Denise   

cheyennedawn's picture
cheyennedawn
Posts: 70
Joined: Sep 2009

Hey Denise,
Thanks for the advice, and it is nice being able to talk with someone who has actually had the same diagnosis. But, I am so sorry that you were dx with the same thing, and have had a recurrence. Are you still going through radiation treatments, or are you done already? It is very scary having this diagnosis, even though it was what my doctor was hoping it would be. I don't know, I guess he thought that it would be the lesser of the evils? But, I do trust him, he has had over 30 yrs of experience in this field, and has dealt with these types of tumors. But, I can't help but wonder if enough was done. The more I read about this, the more that I am worried, because I read that there is usually no lymph node involvement, the first place it is likely to spread is the chest wall or lungs.
I wish you well, and thanks again for the advice. It was really helpful. I think I need to make a call to my doctor about this. I will keep you posted.

Hugs,
Cheyenne

denisegreen
Posts: 3
Joined: Sep 2009

Hey Cheyenne:

I have not started radiation yet. We are still in the process of tissue expansion, I have about 3 or 4 more weeks before that is completed. I am currently scheduled to begin radiation around the 2nd of November or possible a few weeks earlier depending on the tissue expansion. I was told that most of the time these tumors are benign and when they are malignant that it is more of a concern because of how they spread and how aggressive they can be. I know that when my surgeon first told me that he was sending me to the oncologist that it really freaked me out. But now that I know what the radiation treatments will be and the possible side affects I feel better knowing that I am having this treatment and will be doing everything that is possible at this time to keep it from spreading further. All the research I have done and friends of mine have done on the subject have yielded the same information that you have obtained. There just is not much out there on this cancer. But it is good to talk to someone else with this diagnosis and confirming the same information that I am being told, just wish there was more. If I hear of anything new out there, I will let you know. You may also want to tell your doctors that my oncologist consulted with a specialist in New York who works with rare cancers before we decided to treat with radiation. I hope all goes well with you and hopefully you will not have a reoccurence!!!!

Keep moving forward and all will be well!!!!!
Denise

cheyennedawn's picture
cheyennedawn
Posts: 70
Joined: Sep 2009

Good luck with your radiation treatments. Since you are having tissue expansion, does that mean you are going to have reconstruction? That is not an option for me at this point, and something that I am not concerned about. Maybe that will change in the future.
It is so frustrating to me not to be able to get the information I want about this disease! And, as you know, it is so scary being dx'd with it. Because there is no standard treatment, I feel like not enough is being done. I did put a call into my doctor this morning, telling him that I have some unresolved concerns. Hopefully his nurse will get some answers and get back to me soon. Thanks for keeping me informed, and if I get any new news, I will do the same.
I hope all goes well with you also. We just have to take it one day at a time. God bless!

Hugs,
Cheyenne

denisegreen
Posts: 3
Joined: Sep 2009

Hey Cheyenne:

I am having reconstruction, but the radiation will be putting a hold on the final stages of the reconstruction by about 6 months. My general surgeon did the mastectomy and then my plastic surgeon finished with the placement of the tissue expanders all in the same surgery. When the second tumor was found I was in the process of reconstruction then, to even both up. But we found the tumor first and had to do the mastectomy. I opted to have both sides taken just because I didn't want to face it possibly spreading to my right side or any other issues. I had fibrocystic tissue in the right side and already had a scare on that side before all of this happened. It may have been a radical choice but I feel better knowing that I have tried to do everything I can to keep this from spreading or coming back. I hope that in the future you will have more options and if there is anything I can do to help you, please let me know. If you have any doubts about your doctors, don't let it go get a second opinion.

Good Luck and keep on pushing for answers!
Denise

cheyennedawn's picture
cheyennedawn
Posts: 70
Joined: Sep 2009

I'm sorry that your reconstruction got pushed back in order to deal with this annoying, and scary situation. But, I trust that you will recover quickly and will be able to get back on track. Just be patient and hang in there. I think you made the right decision is having the other side taken too. Better to be safe. I appreciate all your help and advice. I have an appointment on Friday with my primary care doctor to talk about some referrals. I will let you know how that goes. Keep me posted about how you are feeling as well. Good luck and take care.

Cheyenne

heaven1021
Posts: 7
Joined: Mar 2012

Hey Denise:

I see it's been quite sometime since you've posted. I too had a malignant phyllodes tumor removed in Feb this year. I had a lumpectomy and a wide excison along with 6 weeks of radiation. I'm just wondering have you had any reccurence since your treatment? I'm feeling great how are you doing?

Heaven1021

Marietta.V
Posts: 2
Joined: Sep 2009

Hello, my name is Marietta and I am officially scared to death. My 21 year old sister has just removed an intermediate grade phyllodes tumor from her right breast and I am not sure she is getting the best treatment available. This all started a couple of months ago when my sister called me to tell me that she had a lump in her right breast. Eventually this lead to a sonogram and biopsy which told us that there were actually four masses in her breasts (two in her right and two in her left) but that they all appeared to be fibroids. They recommended surgery to remove the biggest fibroid (the big lump she felt in her right breast- 4.5cm by 4cm) and to leave everything else as is for the time being. So she had the surgery, and they actually were able to remove both masses in her right breast. Unfortunately, although one was just a fibroid the other has now been classified as an intermediate grade phyllodes tumor. The doctor told us that only 50% come back and that her recommendation was to wait and see with no additional surgery. This made me uncomfortable because I have done quite a bit of research on this condition and that did not seem like the right move to me. Although the phyllodes tumor was removed, because the initial diagnosis was wrong, no border was removed with it during the surgery which as I understand it would increase the likelihood for the tumor to return. So finally, I basically talked the surgeon into doing a second surgery this week to remove a border around where the phyllodes tumor was removed in the hopes that this will lessen the chance of the tumor's return. Am I doing the right thing? I feel like my doctor doesn't really know a lot about this condition and that I am teaching her about it myself. I live in New York and I truly want to do the right thing for my sister. I heard one of you (Denise) mention a cancer specialist in New York, could I please have his or her name? I need to speak to someone I can trust, because right now I am worried that I am dealing with a surgeon who has no idea about what this is, in addition, I am very uncomfortable with the fact that initial diagnosis was wrong, what if one or both of the tumors that they call "fibroids" in her left breast are actually phyllodes tumors too, they were wrong about her right side- why should I trust them now? Maybe the two masses in her left breast should be removed too since it seems like these people don't really know exactly what these things are until they take them out?

I'm hoping that after this second surgery on wednesday, a clear margin around where the intermediate phyllodes tumor in her right breast was removed will be the end to this nightmare. However its been a week since her initial surgery (tumor removal) and I am hoping that this second surgery is being done in time to have the desired effect. From what I know, taking a 1 to 2cm margin is usually done at the time of the tumor removal not a week later. Anyway, if anyone could recommend a specialist in New York or anywhere that I could go to for some guidance, I would VERY MUCH appreciate it! I hope that pushing this surgeon to do this second surgery was the right call, I only wish I had someone that I could trust to talk about it with, is that what you guys would have done? My sister means the world to me, I don't know what I would do if anything happened to her, my dad left us when we were teenagers and as the oldest of three girls I have done everything I can do to protect both of my sisters, I feel so helpless right now because it seems like I finally have found a problem that I can't totally handle by myself and thats what keeps me lying awake at night.

Best,
Marietta

cheyennedawn's picture
cheyennedawn
Posts: 70
Joined: Sep 2009

Marietta,
Welcome! I am sorry that your sister has been diagnosed witht this disease, because there is just not alot of information about it. I am having the same problem that you are having with your surgeon. Although mine has over 30 years of experience, I still am not reassured. I had a lumpectomy performed to remove a large lump in my left breast. The pathology comfirmed that it was a malignant phyllodes tumor, and because the thing had roots that had grown throughout my breast, my surgeon recommended a mastectomy. This was a very fast growing tumor, and I was taking no chances. So, according to him, once the breast was gone, so was the cancer. I am not to comfortable with that, so am now in the process of getting a second opinion. I wasn't even referred to an oncologist.
A "wait and see" approach with this is not a good idea. Because it is such a rare type of cancer, there is not a lot of info available, and I feel that your sisters doctor is not very knowlegable. Yes, I think you did the right thing in pushing for the other surgery. As I am finding out, you have to push for the proper care, especially with this. Denise mentioned a specialist in New York, maybe she will be able to get you that doctors name. We will keep searching and asking til we get through this. I will be praying for your sister. Best wishes to you both. Keep us posted on what you find out! Wish I had more advice to offer, Im sorry. Hang in there.

Hugs
Cheyenne

survivorbc09
Posts: 4378
Joined: Jun 2009

Bumping this thread for the newbie expresslove. I hope this helps you some!

HUGS

cheyennedawn's picture
cheyennedawn
Posts: 70
Joined: Sep 2009

Thanks survivorbc09! You are too sweet.... :)

Marietta.V
Posts: 2
Joined: Sep 2009

Cheyenne,

Thank you for your kind words. I am glad that you agree with my choice of pushing for the second surgery. I think that in your case, getting a second opinion can only benefit you, and I am happy that you decided not to take any chances by having a mastectomy. In the long run this is probably the best thing you could have done to ensure a long and healthy life for yourself. Stay strong and I will keep you posted with the aftermath of tomorrow's surgery.

Best,
Marietta

cheyennedawn's picture
cheyennedawn
Posts: 70
Joined: Sep 2009

I just saw this post, I hope your sisters surgery went well today. Keep me posted on how she is doing. This is such a scary and confusing journey, all we can do is do the best that we can, and trust our decisions. I think you did make the best decision. And, I believe that I made the best decision for me. But, I am not happy with my follow up care, so I am dealing with that. Just don't give up in your quest for answers! Tell your sister to hang in there. This will get better. She is very lucky to have a sister like you, who is there for her.

Take care,
Cheyenne

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

*bump*

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

*bump*

cheyennedawn's picture
cheyennedawn
Posts: 70
Joined: Sep 2009

thanks dawne.hope

pgsmpsn
Posts: 1
Joined: Oct 2009

I've since turned 29 (yesterday) but was dx with Phyllodes in May and had my surgery in June. At the time of my lumpectomy, it was 6x6 cm and had attached to my chest wall. My doc wasnt able to take a clear margin from my chest wall, but the other sides were clear. I have a 4 inch scar above my nipple that is now forming horrible scar tissue, and another lump is forming where the other was removed....like a seed forming from a root.
BC is so prominent in my family, this is such a frightening experience for all of us. My 5 year old still asks if my scar is there...
I have an U/S on monday to take more pics of the tissue and the new lump I found. The doc I have is so certain of her work, that she refuses to consider it growing back, and has reassured me the lump I feel is just fluid filling the area she scooped out. I'm terrified.
Does anyone know of any Phyllodes docs in AZ? I'm limited with my insurance but would got to anyone at this point.
Paige

cheyennedawn's picture
cheyennedawn
Posts: 70
Joined: Sep 2009

Im sorry that you have had to go through all that. If you have any doubts, get a second, or even third opinion. It doesn't matter if your doctor is certain, if you have doubts, then you need to follow up on them. And, hopefully, it will just turn out to be just fluid filling the area, but you have to be absolutely sure of that. I live in North Carolina, so I am not familiar with docs in your area, but maybe you could get in to see an oncologist, or at the very least your primary care physician. That is were I went for my second opinion. My surgeon would not listen to me either, I was not happy with my follow up care, he was sure that he got the whole tumor, and that there was no chance that it had spread. I wasn't sure, and so my PCP sent me for a chest CT scan and MRI...everything turned out well, thank GOD, but I wasn't convinced til then. I wish you well, and a speedy recovery in all of this, and pray that you will get the answers you need. Please keep us informed on what is going on with you. This is a wonderful site, you will get lots of support and advice here. But, as I'm sure you are finding out, there is not a lot of info on the phyllodes tumors. This is a very rare disease. But, very treatable.

Sherri125
Posts: 2
Joined: Oct 2009

Hello Cheyennedawn! I'm also a Phyllode's patient. I discovered a small lump on the right side and even though I was previously diagnosed with fibrocystic breast changes, this particular lump seemed to feel a bit more firm to me. I waited for a month, to see if it would disappear with my hormonal cycle (I had a supracervical hysterectomy but still have cervix and ovaries so I still have the monthly hormonal thing) like usual, only this lump didn't go away. It was only the size of a pea, but nonetheless I was still concerned. I went to my PCM and she also confirmed that she could feel what I was talking about as well. She thought it was nothing since she thought it was moveable, but she still referred me to radiology. The mammogram they took showed nothing but I have dense tissue which makes reading mammograms a bit difficult. My PCM also referred me for an ultrasound, and that is what picked up a 1cm tumor. I had a core needle biopsy, and had a huge hematoma develop and had to wait 3 weeks for my body to absorb some of that blood, but while waiting my core biopsy results came back as a benign phyllodes. Then I was referred to an oncological surgeon. I just had the rest of my tumor removed wide local excision and the tumor appeared to grow to 3 cm in 3 weeks time. I am about to go for my first post-op mammogram following the surgery and then apparently my doc wants to follow me at 3 month rechecks for awhile. I think you hit the nail on the head. You have to advocate for yourself. Since being diagnosed, I have alot of doctors, residents, medical students sitting in on my appointments with my onc surgeon. Apparently, at my hospital I am the 2nd case of Phyllodes of any ilk they have ever seen. It seems strange, but prior to this diagnosis, I usually only saw one doctor and maybe a nurse chaperone. Now, 2 techs take me to get my vitals, and usually 2 student doctors examine me, and then my onc surgeon comes in to talk story. Has anyone else experienced this in your appointments?

Sherri125
Posts: 2
Joined: Oct 2009

Hi Paige! I'm so sorry to hear that you are going through this. I was also diagnosed with Phyllodes (mine was benign) and I have a Y shaped (also near 4 inches maybe more) incision that's about 2 inches above the nipple. My onc surgeon also removed tissue from where radiology performed the core needle biopsy. They were concerned that some tumor cell seeding could take place so they removed it during my wide local excision. I am having horrible scar tissue forming as well. At least, my onc surgeon thinks it's scar tissue. I'm going in next week for a post surgery (first baseline) mammogram. I'm hoping that the mammogram and ultrasound will confirm that it's just scar tissue and not the phyllodes trying to grow from any residual cells that may have happened during the core needle biopsy. I had a huge hematoma happen during that core biopsy and am concerned what I feel now is the phyllodes recurring. I'm sorry, I don't know of any Phyllodes docs in the Arizona area. There is a board called Rare Cancer Alliance Support that has a Phyllodes Tumor board. The address is http://www.rare-cancer.org/forum/index.php

mmoore61
Posts: 1
Joined: May 2010

Hi my name is Mallory i am 21 years old and 5 months pregnant i was told that i may phyllodes tumor in my right breast. my surgery is scheduled for May 26th they said they will need to take out about 5 inches or more of tissue i'm not scared at this point more anxious to just get the tumor out. i just want to be healthy for my new baby i am married and two daughters ages 2 and 1. just thought it would be nice to talk to others in the same boat.

jadore35
Posts: 1
Joined: May 2010

Hi Mollary... I'm in similiar situation has yu with phyllodes tumor... I've noticed a lump in my right breast for over 6 months when i visit the Dr they told me it harmone and menstrual cycle i monitored the lump for 3 months until may 4 i notice the side of my right breast where the lump is was swollen and hot... I visited my Dr the following day but was told it was a cyst and was recommended to see breast Dr at the hospital.. I went the foklowing week i had an ultrasound/ core needlde biopsy and mamaogram.. The ultrasoubnd showed a 5 cm phyllodes/fibrodenoma tumor... But aftere going to see the Dr for the result i wastold it was phyllodes tumor and i need a exision to remove it... Its been 3 weeks now and still await the operation... But i'm feeling tired chest pain and shoulder pain in the right breast. Did you have any of these symptoms? I found it frustrated not having much to read on this type of tumor.. Its rare and i believe they should spend more money finding cure and how to control it seeing that radiation dont really work well. I'm 35 yrs and have no kids so i'm very upset with my Dr for not checking me when i first visited him 6 months ago. Love jadore Xoxo

tigerfish
Posts: 1
Joined: May 2010

denise:
now i am really afraid b/c we have similar case.
I discovered I had a hard lump end of March and did mamogram, ultra sound and needle biospy and had surgery may 4th
and after surgery the pathology discovered it is contain a bit of phyllodes, so that explained why the lump grow so fast. my dr was just as shocked as I, so he advice me to have a second surgery which is exactly 2 weeks later. this time he removed even more fat tissue and 1-2 lynph node and all clear. so now he wants me to see a oncologist.
so is that all necessary?
does it mean in 6 months this can all grow back????????????????????

I am scared

Daisy

GregStahl
Posts: 188
Joined: Apr 2010

for information on this.....

emilyjane91
Posts: 3
Joined: Sep 2010

I have recently been diagnosed with a malignant phyllodes tumour at only 19 years old, I was told a year ago after having a biopsy on a lump in my right breast that it was a fibrodenoma too and that it would disperse by itself, but it didn't and grew bigger quite fast. I returned to the hospital and had the lump removed only to be told a fortnight later that it was a malignant phyllodes tumour. Very confusing as a year previous to this they were telling me it was something different and benign but now malignant. It is so confusing as I have been told chemotherapy and radiotherapy do not work for this type of tumour and doctors I have seen haven't been sure on what the best treatment for this tumour is as it is so rare. I have had more surgery to remove the surrounding tissue leaving clear margins. I am now awaiting results to find out the outcome of surgery and what happens next. I have been told radiation works in some cases, so may be given it when I go back to see results. I know how frustrated you must feel about the situation because I am in the same boat. I have been given all sorts of information from all sorts of specialists. But I have always been told it is cancer, borderline and malignant means cancer but it is so different to any other form

Kellz
Posts: 1
Joined: Oct 2010

I haven't been diagnosed with a phyllodes tumor yet but my surgeon said it is possible. I am scheduled for a lumpectomy on the 25th. I feel like a lumpectomy may not be the right choice. My lump is 4x4 cm (and I feel like it's getting bigger) and I'm barely a "B" cup. Should I go ahead and do a mastectomy even though it may not be a phyllodes tumor? Or should I just stick with my surgeon and do the lumpectomy? Just from reading all the stories of multiple surgeries and ending with having to do a mastectomy anyway, I was just curious. I'm only 26 yrs old with no family history of any breast cancer. So I know little to nothing about breast cancer. I don't know what questions to ask, how to feel, what to do....

Melendm
Posts: 1
Joined: Nov 2010

Hi, everyone. I'm new to this site, and I want to share something. Please visit www.rare-cancer.org ....lots of info from blogs and research on phyllodes tumors. I was dx'd in 2005, had a WLE, had a recurrence 3years later...currently not being treated. Please take care of yourselves, get a second opinion, do your research.

Kellz: I would suggest a wide local excision (WLE) for now, unless your PT is malignant. A mastectomy is so major and life-changing, and unnecessary unless the diagnosis is confirmed. I'm sorry that all of you are going through this. I'm glad I'm not going through it alone. I hope that we can all help each other with this. :0)

sandy1234
Posts: 2
Joined: Mar 2012

My 19 year old daughter has just been diagnosed with malignant phyllodes today and is having more surgery on Saturday. We are all really scared. Could you possible help us. How are you feeling now. Good I hope. I hope you don't mind me asking x

jessiesmom1's picture
jessiesmom1
Posts: 711
Joined: Jun 2010

Sandy, I am so sorry to hear that your daughter has a malignant phyllodes tumor. There is a young woman (20 years old-college student) who posts here fairly regularly who might be able to give you some insight on this type of tumor. Her screen name is Hootiegirl. We also know her as Kat. Perhaps you can send her a private message. Also recently stacy_harp was diagnosed with a phyllodes tumor. Hopefully you can reach these ladies via a new thread or private message. Good luck to you and your daughter.

IRENE

SDRAKE0021's picture
SDRAKE0021
Posts: 1
Joined: Dec 2011

Hey I'm 18 and I've been dx with Phyllodes tumor!

Here is my background information:
1. I found the "knot" on 8/14/2011
2. Went for my first ultrasound on 8/18/2011, it was 1.4 cm big. One month later I went for my second ultrasound on 9/22/2011, and it was 3.4 cm big. My tumor felt very smooth and mobile.
3. I went for my biopsy on 11/15/11, the x-ray guy who was performing my biopsy had a very hard time getting the needle through my tumor (which at the time we thought it was a regular cyst, and he couldn't believe how encapsulated it was.) Once they have started the biopsy it was supposed to take roughly around 5-10 minutes and it took him 45 minutes to get three samples.
4. One to two days after my biopsy I noticed that there is a very large "ball" feeling thing to the top of my original tumor, but dismissed this assuming that it was a bruise.
5. I had my surgery done on Thursday December 8th, 2011. The surgery took longer than expected because from where the biopsy was so forceful to get the needle through it actually distorted my tumor and he had to "hunt" down all of the pieces and also during this surgery he found another "cyst" (actually tumor) above my original cyst/tumor which is that "bruise" that I found one to two days after my biopsy.
6. A little over two weeks I went back for my two week check- up on Tuesday December the 27th, 2011 and that is when he told me about Phyllodes Tumor. He told me so much information and I've been doing research online and I've never came across this information that he told me in the office. He said that the reason why my tumors keep forming (I've found three more tumor including the one he found) is because my breast tissue is so firm and dense that it kinda resembles Swiss cheese. So the holes of Swiss cheese are actually tiny pockets which is where the tumors form. I don't know how accurate that is and how helpful all of this information is since there isn't much research done on this rare type of breast tumor. I am sad to say that I don't know where my samples are that they took from me, and I don't even know where to send it too anyways. I will try to find more information and call him regarding my samples and see if he can send them off somewhere for research.
7. My doctor told me that I will have to have mammograms done once every year for the next several years of my life and that if I notice any of my current tumors start to grow then I will have to get a mammogram done immediately.

Now I've read on some sites saying if it is benign it is still considered cancer because of the chance it has turning into cancer and some doesnt say that at all! so is it cancer or not if its benign?

cinnamonsmile
Posts: 1049
Joined: Dec 2010

Hi,
I went to the American Cancer Society webpage and found this information for you.
If you read it, it would appear that some phyllodes tumors can be cancer, some are benign.Your pathology report will indicate whether or not yours are cancerous.

Phyllodes tumors

Phyllodes (also spelled phylloides) tumors are rare breast tumors that, like fibroadenomas, contain 2 types of breast tissue – stromal (connective) tissue and glandular (lobule and duct) tissue. They are most common in women in their 30s and 40s (slightly older than for fibroadenomas), but they may be found at any age.

The tumors are usually felt as a painless lump, but some may be painful. They may grow quickly and stretch the skin. They are often hard to tell from fibroadenomas on imaging tests, or even with fine needle or core needle biopsies.

When seen under a microscope, the main difference between phyllodes tumors and fibroadenomas is that phyllodes tumors have an overgrowth of connective tissue. The cells that make up the connective tissue part can look abnormal under the microscope. Depending on how the cells look, phyllodes tumors may be classified as benign (non-cancerous), malignant (cancerous), or borderline (looking more abnormal than benign tumors, but not quite malignant). These types of tumors can behave differently.

Phyllodes tumors are usually benign but in rare cases may be cancerous. Less than 5% of these tumors spread to other areas, such as the lungs, or come back (recur) in distant areas after treatment. In the past, both benign and malignant phyllodes tumors were referred to as cystosarcoma phyllodes.

Phyllodes tumors (even benign ones) can sometimes come back in the same place if they are removed without taking some of the normal tissue around them. For this reason, they are treated by removing the mass and a 1 to 2 cm (about 1/2 to 3/4 inch) area of normal breast tissue from around the tumor.

Malignant phyllodes tumors are treated by removing them along with a wider margin of normal tissue, or by mastectomy (removing the entire breast) if needed. Malignant phyllodes tumors do not respond to hormone therapy and are less likely than most breast cancers to respond to chemotherapy or radiation therapy. Phyllodes tumors that have spread to distant areas are often treated more like sarcomas (soft-tissue cancers) than breast cancers.

Because these tumors can recur, close follow-up with frequent breast exams and imaging tests are usually recommended after treatment.

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