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Phyllodes tumor

Osullybird
Posts: 3
Joined: Jan 2010

Hi all,
I'm new to the site but not new to the disease.
I had my first partial mastectomy in June of 1996 at the age of 26. After finding the lump and it being passed off by the first Dr as a cyst, then a fibroadenoma by the second Dr, I finally got a third opinion. Although reluctant this third Dr agreed to take the lump out. Turned out it was a benign Phyllodes tumor and by the time it was taken out it had tripled in size and was making it way through my chest wall. What was supposed to be a simple lumpectomy turned into a partial mastectomy.
On my follow up visit I was told by this Dr not to worry, they got clean margins and it will NOT grow back, just a fluke. Back then there was NO literature on this type of tumor, I mean none so I had to believe what the Dr had told me. Two years later I found another lump, in the same place. I went back to the Dr who did the original surgery. Once again a core biopsy showed a fibroadenoma and I was told to watch and wait. Seeing as this Dr was a professional in the field of breast cancer and breast issues and worked for a clinic that only dealt with breast issues I waited. Six months later it was still there. They once again did a reluctant surgery and removed yet another Beging Phyllodes tumor. Long story short I just had my Fifth surgery to remove a Phyllodes tumor in the right breast, even though it is in the exact same spot the first one was found not one Dr I have seen will call it a recurrence. This time the Tumor is malignant.
I've been told absolute different opinions now from many, many Dr's in regards to this disease. I have been told that this type of tumor is NOT cancer although it has been proven to spread to lymph nodes and also to metastisize to the lungs and spine. It is NOT cancer although a benign tumor can turn malignant. I have been told that it is NOT cancer because the tumors do not respond to Chemo or radiation, Show me the studies that have been done to prove that, there have not been any. I have been told not to worry, it's not cancer although the life expectancy of someone with metastasis is three years.
Why is this disease being ignored? Because it doesnt effect enough people. So to all of us out there who suffer from this, Don't worry, It probably wont happen to your kids or the Dr you're seeing, you could die from it but who really cares, you're one in a million.
Sorry folks, first time I have vented my frustration for the simple not caring attitude of every Dr I have had. I want a mastectomy, I want radiation but I probably wont get it due to the lack of concern from Dr's and insurance company seeing it as too invasive for such a rare disease.
My thoughts and prayers for all of you dealing BC of any type and if anyone knows of a Dr that would show interest in my case, please free to email me personally.
Thanks for listening,Sue :)

hmom226
Posts: 1
Joined: Apr 2010

Hi Sue,
I am just checking to see how your are doing and if you found the info and a doc? I was diagnosed in 12/2009 after a lumpectomy. In contrast to your nightmare, I have had great treatment. I even knew before surgery that a "rare phyllodes tumor" might be a possibility, 99% chance it would not be... but if so, I would have to have a wider margin taken with another surgery, at minimal. I ended up getting a second opinion at the Mayo Clinic...I just needed to consult with more docs and they are the experts at the rare tumors. The doc's there agreed. They said radiation is still experimental and chemo doesn't work. When the surgeon at mayo told me that she believes these tumors should ALL be considered malignant (even "benign" ones) because they are so unpredictable...this confirmed the decision I had already been leaning toward. She said they are harder to control surgically than invasive BC. They agreed that a mastectomy was be best course of treatment as my chance of having a local recurrence was 20-30%. So, I am recovering from a bilateral mastectomy and am weathering the reconstruction well. I am truly blessed by the great care I have received at The Piper Breast Center in Minneapolis. The team there is wonderful. Mayo clinic was great too but I chose to stay closer to home. There is another discussion board on the rare cancer alliance web site that is for phyllodes survivors.. lots of good info and many ladies who have experienced what you have had to suffer through. I am sure someone would know a doc in your area. Please let me know how you are doing! It is so rare to find any message of our cancer on a cancer web site.. even breast cancer! Any yes, we do have a "cancer" diagnosis... just not the typical breast cancer. Take care!!

knitwitte
Posts: 2
Joined: Apr 2010

I have just been diagnosed with benign phyllodes tumor. I am very atypical for this diagnosis. 76 years old, 2 pregnancies, breast fed each for 9 months. I did use hormone replacement therapy until 6 years ago. I believe my age alone puts me at the far end of likely subjects. I am currently dealing with doctors who express no urgency in treating me. As I am a very healthy, active 76, I would like to see a bit more interest. My Primary Care physician didn't even know what Phyllodes Tumor is, but she zeroed in on the "benign" part. She said she would "look it up." Reassuring.

All of the literature I have read emphasizes that the only treatment is removal of the tumor and a "wide" margin to prevent recurrance. I have rather large breasts and will encourage my surgeon to err on the side of too much, rather than too little.

I am still waiting to see the surgeon. It was a one month wait, and will see her on May 5, so do not even know when the surgery will be done. Waiting is the worst part.

It is helpful to communicate with others who are experiencing this situation. I would like to keep in touch with you. I am located in So. California and am wondering about getting a second opinion.

Best wishes for you recovery.

hope4strength's picture
hope4strength
Posts: 3
Joined: Sep 2010

Hi Sue,
This is my first day on the CSN site. I was diagnosed with a malignant phyllodes tumor on 8/1/10. My surgeon was very knowledgeable about this cancer and honest about the risks and treatment options. On 8/18/10 I had a simple mastectemy. My pathology results was the best that my surgeon could of asked for. I am scheduled to meet with a radiologist on 9/14/10 to discuss radiation treatment. Like hmom226 I was truly blessed to have a surgeon who did not minimize my disease and provided me with the knowledge and care I needed.
Please keep searching for a doctor who will provide you with the medical care you need and deserve.

Diane Nave
Posts: 1
Joined: Sep 2010

Hello everyone,
I am presently sitting in VCU/MCV hospital recouperating from my second PT surgery here. In mid 2006 I was clinically diagnosed with a benign breast cyst after mammogram, fine needle aspiration and ultrasound diagnosis. My doctor didn't even bother to call me with her final diagnosis as she was relocating far out of the area. I then was referred to a oncologist who had a stellar reputation and he said he had looked over my path and lab results and confirmed a benign breast cyst and to stop drinking coffee. He said that a study had been out for some time that wherever Starbucks coffee is popular, there is a higher incident of breast cysts. I don't drink coffee anyway and stopped Starbucks coffee after reading the same report, but nonetheless I had a cyst anyway. Ias told to watch the cyst and come back if anything changed.

In mid 2009 I was hit with overwhelming exhaustion, edema, kidney region pain and aching of joints. I also noticed that the breast lump had increased in size and called VCU in Richmond, VA to make an appointment. I was referred to the Massey Cancer Center and after financial screening (I have no insurance) I was given an appointment for September 2009, which was a long way out, timewise. By the time I made the appointment for the initial exam, had a mammogram, CORE NEEDLE biopsy,an MRI and was at my diagnosis appointment at Massey Center, the "cyst" had grown to the size of an orange. Surgery was scheduled for two weeks out. The exhaustion and pain was on a scale of 1-10, an easy 9.

By the time I got to the operating room, it had grown another 20%. I had a total masectomy of the left breast with no complications. Pathology had confirmed the tumor to be indeed, a phyllodes tumor. Surgery took nearly six hours and I went home the next day. I returned for follow-ups and everything proceded very well...until late July of 2010.

I had been noticing some of the early warning signs I had been experiencing, i.e. swelling, pain, exhaustion, had slowly returned and felt a need to make an appointment with my oncologist. By the time the day of the appointment arrived, I noticed a lump just south of the incision line, about the size of a marble had appeared visually, seemingly overnight. The oncologist was astounded that it had appeared so suddenly and ordered a core biopsy right on the spot, radiological diagnostics a few days and a return trip to his office the following Tuesday. By the time I returned to his clinic, the SECOND confirmed phyllodes tumor was the size of a tennis ball, but this time was different in shape and over the days became maroon in color and seemed as though it was about to burst out of my skin. This time it was painful in the adjacent region and my surrounding muscles were stinging.

This most recent surgery was eight days ago, and involved removal of margins nearly down to my ribs, pectoralis major total removal and surrounding skin. I had a large piece of donor skin harvested from my right thigh for the skin graft as there was not enough skin surrounding to close the wound. I am hooked up to the amazing Wound VAC since surgery and am still in Critical Care at VCU in Richmond, VA.

I changed my diet twenty days ago to an allergen free diet. It was under the recommendation of Dr. Elizabeth Dean in South Hill Virginia who I contacted for suggestions on starving the tumor by changing from an acidic body to an alkaline one. This means no gluten, dairy, eggs and many other foods are excluded. Being in the hospital I can follow it pretty tightly which makes me happy and the staff at VCU are very kind, considerate and accomodating. My staff of doctors (there are MANY who attend me all throughout the day) are interested in my thesis about nutrition and I must admit I am noticing many changes on my wellness. I believe that eastern as well as western medicine should play an important role in the management of this disease. I also am taking many herbs and vitamin/mineral supplements which are aiding me considerably.

I am taking a very aggressive approach to the phyllodes tumor because of conflicting information and general lack of information. There is also much false information out there as well as snake oil salespeople. I am nowhere at the end of my conquest and I am well prepared to battle this all my life, but it won't get my spirits down or take me out without a noble fight.

Please contact me if you'd like to keep in touch with my journey with this tumor.

bethhawkins
Posts: 1
Joined: Nov 2011

Are you still aggressively using nutrition to combat PT? How is that working out for you. I am on a vegetable nice diet where I juice my vegetables and eat lots of salads. I would love to know how you are doing now since it has been over a year since your post. I live in SC and graduated from VCU in 1977.

Gettagirl11
Posts: 1
Joined: Dec 2011

Hi Diane,
I hope this message reaches you well, I see that your last entry was in 2010 so I am not sure if you are still connected to this network.
I am sorry to hear about your battle with PT...I hope your treatmentnhas been successful and you are seeing positive results.
I recenty had a wide excisional biopsy this past Friday for PT and am awaiting the results. I was reading your entry and noticed that you had mentioned "kidney like back pain" ...I have been experiencing the same pain over the past few months and even was misdiagnosed with a kidney stone 1 week before my surgery. Was there ever any correlation with this and the tumor that the doctors were able to comment on?
As you are aware, it's so hard to find out any information about this disease.

Thank you!

knitwitte
Posts: 2
Joined: Apr 2010

Dear Sue:
I have read your posting and am appalled. I am seeing a bit of that attitude in regard to my own diagnosis. The internet is such a blessing, but I imagine it wasn't available to you when you received your first surgery. The only minor surgery is the kind someone else is having, right? Benign diagnoses seem to remove all the urgency from the treatment plan. I have been waiting to see a surgeon and will finally have my first appointment with her May 5. Then the surgery somewhere down the line. My PC didn't even know what Phyllodes Tumor is. She zeroed in on the "benign" part and said she would look it up.
At my age (76) I am not even in the normal age range of this cancer. I would like to keep in touch with you to hear how you are doing. Best wishes, Marlene.

Tristi
Posts: 1
Joined: Jul 2010

I was just diagnosed on Monday with this tumor. I am appalled already at the lack of concern and knowledge in the healthcare community. I live in Texas, a few hours from MD Anderson Cancer Center. They won't see me until September and said the only treatment is surgery. I have not been set up with an oncologist or anyone who recognizes the need to check for mets. I am so overwhelmed with the reality of this diagnosis at age 33. The added stress of advocating and designing my own treatment is only making matters worse. I do have an appointment on Monday with a surgeon, but he has never seen a MPT. I don't know what to do. I am so scared and so tired and so frustrated. If anyone has any information to offer, it would be so appreciated. Thank you.

susanconcerned8
Posts: 1
Joined: Aug 2010

Hi- I was diagnosed w/a malignant phyllodes tumor in March of this year. I am 72 and was so shocked! Like you, I learned all I could re treatment and the nature of the rare tumor. I opted for a simple mastectomy and found that the staff of Froedtert Hospital in Milwaukee took me seriously. My surgery has healed well. I am seeing a counselor for help in adjusting to this total surprise as well as a wholistic physician for lifestyle assistance although supplements don't cure cancer. I don't know what the future holds but I'm doing all I can to be a strong advocate for myself. I surely went through a storm of emotions at first..... a terrible time as I tried to learn about something I'd never heard of!
You might consider the Mayo Clinic or Froedtert if your circumstances permit this. Please let me know if you want more details re my disease and I hope to hear how you're doing!!

cool49
Posts: 27
Joined: Feb 2010

iam so sorry i have not what you got but mine came from skim cancer on my leg 18 years ago its basal cell carcianoma that mestastised to my lungs and ribs i have four tumors in mt right lung and lots of mets i have about two years to live but we dont know only god knows when it is are time.mine i 0.1% 300 hundres cases since 1895.it is a very rare care like youre i cannt take radtion chem .ilooked all ove for clinic trails it ticksme off to evern though are is two seprated cancer that are very rare they are working on a hedgehog inhibtor GDC 0449 PUT OUT BY CRUTIS AND GENETECK.the guy that is helping me is mike gray@ curishis #is 1 617 503 6632 maybe he can led u to some one that is having a clinic trail on this may they have a compaassion where u can get a clinic trail for that even if it is rare.reefereal# 1 888 662 6728.maybe they can help u god please you and i will be praying for you and youre familycool49 may this information will help

cool49
Posts: 27
Joined: Feb 2010

iam so sorry i have not what you got but mine came from skim cancer on my leg 18 years ago its basal cell carcianoma that mestastised to my lungs and ribs i have four tumors in mt right lung and lots of mets i have about two years to live but we dont know only god knows when it is are time.mine i 0.1% 300 hundres cases since 1895.it is a very rare care like youre i cannt take radtion chem .ilooked all ove for clinic trails it ticksme off to evern though are is two seprated cancer that are very rare they are working on a hedgehog inhibtor GDC 0449 PUT OUT BY CRUTIS AND GENETECK.the guy that is helping me is mike gray@ curishis #is 1 617 503 6632 maybe he can led u to some one that is having a clinic trail on this may they have a compaassion where u can get a clinic trail for that even if it is rare.reefereal# 1 888 662 6728.maybe they can help u god please you and i will be praying for you and youre familycool49 may this information will help

maryjb
Posts: 2
Joined: Sep 2010

Hi,
Moffitt Cancer Care called me yesterday with the results of my needle core biopsy with the diagnoses of Phyllodes tumor. The nurse that called said that all samples showed benign but it has to be removed. They gave me the websites to research it so that when I met with them for my appointment Sept 30th I could ask questions. I have researched even calling the American Cancer Society as instructed by insurance companies health line. Every site I go to and every authority I talk to tells me how little is known about this. They read off the same few lines. I need help compiling questions even though I have more questions than answers. Here is what I have so far:

Questions:
1. Will excision be by lumpectomy or mastectomy? (Which would be better?)
2. Will reconstruction be necessary?
3. What is the reoccurrence rate?
4. Is this genetic?
5. How much research has been done on this type of tumor?
6. Is there enough data to show any type of definitive results?
7. Is there any type of clinic trials being done?

I am meeting with the head doctor of the womens breast cancer division at Moffitt Cancer Hospital (13th in the US in Cancer Care) so if you have any questions you want answered please post them and if I get answers I will post them. This will help both me with questions to ask and you with any answers that you are trying to get.

Io
Posts: 2
Joined: Nov 2010

maryjb,

Perhaps some of this is helpful for some of your questions...

I joined this site today. I was diagnosed w/phyllodes tumor (also referred to as cystosarcoma phyllodes, among other names) in early September, 2010. I am 59. As with many others, I, too, was initially advised to "watch" a growth on my breast. That went on for more than two years. (My husband was never comfortable with that "treatment plan.") Eventually--almost suddenly--the tumor began to grow. I had another mammogram and then a sonagram followed by an immediate needle biopsy that same day. The needle biopsy suggested that the tumor was benign. Nevertheless, I was immediately (thankfully) referred to an oncology surgeon who specializes in cancers of the breast. A week later, after seeing the doctor, I was in surgery to remove a growth that had ballooned from 10 cms. to 13.5 cms in a matter of days. The pathology report on the removed growth confirmed that it was phyllodes tumor, and, that it actually was malignant.

Another week and I was again in surgery for a mastectomy of the one breast. I'm recovering now from that surgery and I will shortly begin a precautionary regimen of radiation--five and one-half weeks of 5 treatments per week that will target the "tumor bed" in the remaining chest tissue. Apparently, there are only anecdotal studies--not true academic ones involving a control group and other statistically required elements. The anecdotal studies apparently involve too few participants, as well. Anyway, my oncology surgeon and oncology radiologist advise going ahead with radiation even though the pathology reports and CAT scan suggest a more than adequate "clear margin" in my case. I'm inclined to agree, supposing that I will be erring on the side of caution, if nothing else.

I look forward to reconstruction and "symmetry" surgeries upon completion of the radiation regimen. Anyone with useful insights on the relative merits/drawbacks of the various reconstruction methods available? I've been advised by a plastic surgeon, but I'd rather hear about the alternatives from others who have personally experienced reconstruction. Thanks. Io

dragon1945
Posts: 1
Joined: Jul 2010

I had a lump removed several years ago after a routine mammogram. They thought it was a simple benign tumour [fibroadenoma?], which actually turned out to be a benign Phyllodes tumour. I had to go back in for a wide excision, and was told it wouldn't recur. I had no follow up checks at all.
In November 2009 it was back. They decided to "wait and see". I went down with Swine Flu, and the wretched thing went into overdrive and burst out of under my breast. I haemmhorraged and nearly died, and was rushed to hospital. I had 2 more haemmhorrages and my daughters were called out each time to be told I wouldn't last the night. My daughter told them I was a stubborn b**ch and wasn't about to die because they said so. I was in hospital for 4 weeks, then moved to another hospital for 2 weeks. Over 30 surgeons from all over the UK came to have a look and suggest treatment. I was advised that the only hope was a mastectomy, which I had in April. The Tumour weighed almost 1 stone. I was told that I was clear, and it had been borderline. In June I noticed 2 lumps came up over a couple of days. They tried to persuade me it was just lymphoid swellings but I insisted on seeing at least the Senior Breast Care Nurse. By the time I got an appointment at the Breast Cancer Clinic I had 4 lumps down my ribs. She took one look and ushered me in to see the Oncologist. 2 biopsies later I was informed the Phyllodes was back and malignant in a very aggressive form. I had the lumps removed on July the 18th . 2 weeks later at the post op check up I pointed out I had 3 more lumps. They decided against another lumpectomy. On 14th September I started Radiotherapy. 8 down, 7 to go. I was told that I would have the maximum dose my body could take, and it could never be repeated - so what happens if it doesn't work?
To get them to take you seriously you have to fight. Not enough is known about Phyllodes Sarcomas. Chemotherapy is generally considered useless. Radiotherapy hasn't really been studied so I guess that makes me a guinea pig. The only thing left if this doesn't work is Brachytherapy, but they don't wish to discuss that at the moment. I gather it could be up to a month after Radiotherapy before they know if it has worked. At least my bone scan was clear, and the lymph glands they took from under my arm were both clean too.

alliswell
Posts: 2
Joined: Mar 2011

I am so grateful for this forum. I have had a recurring PT since 2007. Actually it probably started well before then, as I had a lump since 2001 but was told it was a fibroadnoma. I had 3 lumps removed from the same site: one in 2007 (benign), one in 2009 (benign), and most recently in January 2011 (borderline, later called "benign" by a 2nd opinion). Each time the tumor was bigger and bigger; the last one grew pretty quickly. No margins were ever taken until this year, when it was diagnosed borderline. When he took the margins, he found residual evidence of the tumor, as well as Fibroepithelial cells (which are the germ cells of phyllodes). Thus, the margins were NOT clear. The doctor told me I could opt for a simple mastectomy or continue to monitor the situation every 6 mos. He told me that there was no need for alarm. I sought a 2nd opinion from a respected Cancer Hospital. I was told basically the same thing. I feel incredibly conflicted because I don't want to have major surgery if I don't have to, but I also don't want to foolishly take chances on my health and life. I have been told the chances my my dying from this is "very low," which makes me want to go on monitor status, but there is part of me that is frightened by it going out of control. As of now, I am scheduled for a mastectomy in another month, but I continue to waver back and forth.

Sister101
Posts: 1
Joined: Dec 2010

Had a tumor grow from a quarter sized lump to the size of a baseball in a week. Two weeks after my first dr's appointment I had a mastectomy. It was a malignant phyllodes tumor. Now they are testing to see if there are any genetic markers for cancer in my blood. If the results are negative, I will have to go through radiation therapy for 5 weeks. They've told me there will be complications with reconstruction of the breast if I go through radiation therapy. I need to know all my options, if they are letting me know everything, if what they are telling me is the truth and I'm just not being put through random expensive tests for nothing.

Thank you.

Sister101, 18 yrs.

lizflygirl
Posts: 3
Joined: May 2010

I was diagnosed with a benign Phyllodes tumor in my right breast last February after a routine mammogram. I was 36yrs old at the time. My first doctor removed the tumor with a lumpectomy and 1cm margins. They noticed another lump in the U/S and labeled it as a cyst. I never thought anything about it. After surgery I decided to switch doctors and went to a breast surgeon at a larger, more reputable hospital. She reviewed the pathology, mammograms and ultrasounds. The radiologist called me in for a biopsy on the "cyst". The results came back fibroadenoma. I am now due to go back this month for follow-up mammograms and my yearly on my left. I'm worried about the fibroadenoma because in researching I read that there is a slight chance of it becoming a phyllodes. I have thought about having a bilateral masectomy but my surgeon thinks I am nuts because it was benign. After reading the above post about the woman that had it done at the Mayo clinic I am seriously considering calling them to determine if a doctor would do it up there. Did insurance cover the surgery even though the tumor was benign? After masectomy what are the chances of the tumor coming back? There aer all these questions and unfortunately no answers for us trying to deal with this and the aftermath these tumors cause. If anyone has any information on a doctor willing to do a masectomy in the Chicago area please let me know.

lizflygirl
Posts: 3
Joined: May 2010

I was diagnosed with a benign Phyllodes tumor in my right breast last February after a routine mammogram. I was 36yrs old at the time. My first doctor removed the tumor with a lumpectomy and 1cm margins. They noticed another lump in the U/S and labeled it as a cyst. I never thought anything about it. After surgery I decided to switch doctors and went to a breast surgeon at a larger, more reputable hospital. She reviewed the pathology, mammograms and ultrasounds. The radiologist called me in for a biopsy on the "cyst". The results came back fibroadenoma. I am now due to go back this month for follow-up mammograms and my yearly on my left. I'm worried about the fibroadenoma because in researching I read that there is a slight chance of it becoming a phyllodes. I have thought about having a bilateral masectomy but my surgeon thinks I am nuts because it was benign. After reading the above post about the woman that had it done at the Mayo clinic I am seriously considering calling them to determine if a doctor would do it up there. Did insurance cover the surgery even though the tumor was benign? After masectomy what are the chances of the tumor coming back? There aer all these questions and unfortunately no answers for us trying to deal with this and the aftermath these tumors cause. If anyone has any information on a doctor willing to do a masectomy in the Chicago area please let me know.

lizflygirl
Posts: 3
Joined: May 2010

I was diagnosed with a benign Phyllodes tumor in my right breast last February after a routine mammogram. I was 36yrs old at the time. My first doctor removed the tumor with a lumpectomy and 1cm margins. They noticed another lump in the U/S and labeled it as a cyst. I never thought anything about it. After surgery I decided to switch doctors and went to a breast surgeon at a larger, more reputable hospital. She reviewed the pathology, mammograms and ultrasounds. The radiologist called me in for a biopsy on the "cyst". The results came back fibroadenoma. I am now due to go back this month for follow-up mammograms and my yearly on my left. I'm worried about the fibroadenoma because in researching I read that there is a slight chance of it becoming a phyllodes. I have thought about having a bilateral masectomy but my surgeon thinks I am nuts because it was benign. After reading the above post about the woman that had it done at the Mayo clinic I am seriously considering calling them to determine if a doctor would do it up there. Did insurance cover the surgery even though the tumor was benign? After masectomy what are the chances of the tumor coming back? There aer all these questions and unfortunately no answers for us trying to deal with this and the aftermath these tumors cause. If anyone has any information on a doctor willing to do a masectomy in the Chicago area please let me know.

katejo123's picture
katejo123
Posts: 4
Joined: Jan 2011

I am 21 years old and in July had my second phyllodes tumor removed. I had my first phyllodes tumor when I was just 17 in my right breast. They removed this. Then when I was 20 they found the second abnormal lump in my left breast, and they removed it. It turned out to also be a phyllodes tumor. They now check me every 3 months via ultrasound because I am too young for a mammogram to show anything. Last check up they found another abnormal lump and told me theyll check it again in 3 months, and if it has grown remove it. If it is another phyllodes tumor I am wondering what my other options are because I feel as if having these one after the other at such a young age are increasing my chance of cancer as well as slowly deforming my breasts. Do some doctors perform masectomies for these even though so far they have all been benign? I am also wondering if that is being too drastic since they are not cancerous yet.

twomoms
Posts: 1
Joined: Jan 2011

My mom (49) discovered a lump in May 2010 however she did not get it looked at until Jan 2011, last week she had a lumpectomy and today she went in and they told her that it was cancerous, there is no information online about this. Is there anywhere/websites, that I can look to find out anything? I live in Salt Lake City and am going to call the Huntsman center tomorrow.

alliswell
Posts: 2
Joined: Mar 2011

I am so grateful for this forum. I have had a recurring PT since 2007. Actually it probably started well before then, as I had a lump since 2001 but was told it was a fibroadnoma. I had 3 lumps removed from the same site: one in 2007 (benign), one in 2009 (benign), and most recently in January 2011 (borderline, later called "benign" by a 2nd opinion). Each time the tumor was bigger and bigger; the last one grew pretty quickly. No margins were ever taken until this year, when it was diagnosed borderline. When he took the margins, he found residual evidence of the tumor, as well as Fibroepithelial cells (which are the germ cells of phyllodes). Thus, the margins were NOT clear. The doctor told me I could opt for a simple mastectomy or continue to monitor the situation every 6 mos. He told me that there was no need for alarm. I sought a 2nd opinion from a respected Cancer Hospital. I was told basically the same thing. I feel incredibly conflicted because I don't want to have major surgery if I don't have to, but I also don't want to foolishly take chances on my health and life. I have been told the chances my my dying from this is "very low," which makes me want to go on monitor status, but there is part of me that is frightened by it going out of control. As of now, I am scheduled for a mastectomy in another month, but I continue to waver back and forth.

Junerip's picture
Junerip
Posts: 4
Joined: Apr 2011

Hi alliswell, I was just diagnosed with malignant low grade PT, and I am 99% sure that I will move forward with billateral mastectomy....if my insurance approves. I personally do not want to push my luck to wait and see what happens. It is my understanding that 25-30% reoccur more aggresively than before; I do not like those odds. I have looked at some survival rate studies on line; I do not like those numbers either. Chances of dying = very low; that's to high for me. I, like you, have mixed emotions about this, but my heart tells me I'm doing the right thing. I think you are too and wish you the best! Enjoy a long healthy life.

HootieGirl's picture
HootieGirl
Posts: 85
Joined: Feb 2011

I was diagnosed with a malignant phyllodes tumor back in September. My dad is actually a radiation oncologist and one of the head doctors at the Proton Center in our city. After being diagnosed, we flew to Boston to see the heads of the Sarcoma Department at the Cancer Institute at Harvard. They really had never seen anything like this before. My tumor had elements of rabdomiasarcoma as well as carconoma as well as phyllodes. In all honesty, the reason most oncologists don't know much about phyllodes tumors is because only 1 in 50,000 phyllodes tumors are malignant. If you don't like what your doctor is telling you, I would get a second opinion. After my 4th month of inpatient chemotherapy, my tumor came back (even though I had a mastectomy back in September). I actually finish up my last radiation treatment on Friday, the day before my 20th birthday! I have so much knowledge on phyllodes tumors (about as much as is out there) and would love to talk to any of you about what you're going through!! Praying for you all!!

Junerip's picture
Junerip
Posts: 4
Joined: Apr 2011

I am shocked to see several young ladies with PT. It sounds like your dad is taking great care to see that you have the best care possible. How are you handling your mastectomy? Are you going through reconstruction? I am, and I had no idea the process would take so long. All in all....the worst part of the surgery was first week post-op. I was able to return back to work after 3 weeks. Keep in touch, June

charleegirl
Posts: 2
Joined: Feb 2012

How are you doing now? What type of chemo did you have? Has it worked? I have had 5 surgieries in 5 years. I now have multiple mets on my lungs and am waiting to see a sarcoma oncologist.

caybarbe
Posts: 1
Joined: May 2012

HootieGirl- it sounds like you had had some tough luck, I can't imagine going through that all so young! I was recently diagnosed with a borderline phyllodes tumor. Cancer rates in general in my family are very high though, and although my surgeon just wants to treat with wide excision,i feel very nervous it just isn't enough. I just turned 22. I would love to hear anymore opinions on treatment of a borderline phyllodes.

ampaz001's picture
ampaz001
Posts: 1
Joined: Jul 2013

Hello!

My name is Ashley and I am 28 years and have been recently diagnosed with a  malignant phyllodes tumor as well. I have under gone two surgeries in the last 30 days to remove the tumor and to try to get "clear" margins. I am so happy I found this forum because for the last 60 days I have been so lost and confused...not to say I'm still not. I was hoping you could personal email so I could pick your brain A bit. I feel like I've been left in the dark by my doctor. I can honestly say I really don't know what is going on with me other then what I've been diagnosed as and that I've had two surgeries to remove the tumor. Other than that....I don't know much. I've asked her what the next step is her reply was nothing...exactly just that....NOTHING! So I'm basically just playing the waiting game and praying every night I won't ever have to deal with this again. In reality I know this probably won't be the case. My doctor went from telling me it was nothing to worry about to telling me my pathology report came back from my first surgery as "looking really nasty" under the microscope and that it was malignant. Anyhow I can go on in circles about how lost I am but here is my personal email AMPAZ@LIVE.COM and if you ever have the time to email me I'd greatly appreciate it. I hope all is well with you and you are as healthy as can be :)

Ashley

facePT
Posts: 1
Joined: Sep 2013

It being found on me 10 month ago and it all took out of my body as the doctors told me. But my biggest concerning is how it comes on me? The next, what should I do to protact me to avoid it comes back. 

All what my doctors tell me are the machine (PETsca, MRI,CT) told them about the condition of me, they are all great doctors but, I want to dig deeper. I can not wait till it comes back. Somehow I found some materials of Chinese medicine and reading them now. The theory of it is a healthy body should balanced on Ying & Yang, as we known Estrogen & Androgens. If they are not balanced the weakness like a door opened for something bad come in and grow. So they will deal to make the patient get a good condition body to let the bodyself to against the desease. Of cource there are some Chinese medicine like leaves roods have an abiliity to kill cancer cell also. Their theory is set up good conditin of body like a good foundition then use some herb medicine to against or protact body from the desseas.

There is a doctor named Dr. Deng. His interests is in Intergritive Medicine. I visited him twice he give me some Medicine close to Chinese herb medicine and some new info. and advices too. I think is better than other doctors for me, hope it can help you a little.

Junerip's picture
Junerip
Posts: 4
Joined: Apr 2011

Hi alliswell, I was just diagnosed with malignant low grade PT, and I am 99% sure that I will move forward with billateral mastectomy....if my insurance approves. I personally do not want to push my luck to wait and see what happens. It is my understanding that 25-30% reoccur more aggresively than before; I do not like those odds. I have looked at some survival rate studies on line; I do not like those numbers either. Chances of dying = very low; that's to high for me. I, like you, have mixed emotions about this, but my heart tells me I'm doing the right thing. I think you are too and wish you the best! Enjoy a long healthy life.

SMhope8
Posts: 1
Joined: Jun 2011

Firstly I hope you are well. I have as well had three lumps and was told they were fibroadnoma until they continued to grow. I have now had them removed and have found out that the three of them were benign phyllodes. I also have another two lumps which I am told that they are fibroadnomas and the dr. is happy to monitor them. I am now very concerned about them considering I have already had three phyllodes. I prefer to monitor the situation but like you I am very frightened and don't want to take the risk to the point that I am starting to think about a mastectomy. I was wondering what your decision was and how you are feeling to date.

HootieGirl's picture
HootieGirl
Posts: 85
Joined: Feb 2011

I had a mastectomy after having a malignant phyllodes. If yours are just benign, you might talk to your doctor/surgeon about removing the marginal breast tissue surrounding where the tumor was. I think that is your best option as opposed to a mastectomy. The best treatment for phyllodes tumors is surgery, but before you put yourself through a mastectomy, I would talk to your doctor about alternative options.

Junerip's picture
Junerip
Posts: 4
Joined: Apr 2011

Hi SMhope8,
Last month I moved forward with bilat mastectomy. I made that decision based on my age (51)as well as considering the amount of information out there on PTs. If I were younger, I would probably looked into being involved with the clinical trials going on in Dartmouth. As it turned out, I made the best decision of my life by moving forward with mastectomy. It was discovered that another tumor was growing in the same breast, which was phyllodes as well. I say wow....that happened fast! Now I am recovering and have had not feedback on further treatment/monitoring so I am back to the "being proactive" on my own health care. I will ask my physician to send me for pet scan every six months for two years to monitor. It's rare, but this can grow on the chest wall....from what I understand anyway.
Bottom line, research as much as you can and go with your gut feeling on your own care.

I wish you the best!

Kris2009
Posts: 2
Joined: Sep 2011

I had my first phyllodes removed in Oct 2009. They thought it was just a fibroidenoma but my Mom had fibrocystic disease so they decided to go ahead and remove it. The pathology report said was part fibroidadenoma and part benign phyllodes tumor. It was still small about the size of a jelly bean maybe. They did not get clear margins so in 2 weeks I was back in surgery. They did find out they missed some. The surgeon said he had never seen a pathology report like mine and it was the first phyllodes tumor he had ever seen. A few months ago I had a lump come up under my arm in the lower half of my armpit. I went to the same surgeon's office and there was a new surgeon. He had never seen a phyllodes. He truly believed this lump was a lymph node. He said to come back in 3 to 6 months if I felt the need to have it monitored. I went back in 4 months. I could tell he was a bit irritated and again he told me it was a lymph node. He did however notice that it had grown. He sent me for an ultrasound. It was 2 cm on the ultrasound and the radiologist said he did not know what it was and was not characteristic of a lymph node. I had surgery on 8-10-11 to remove it. It was hilarious to see the surgeon's face when he said "guess what?". It was again a phyllodes and was benign. He sent it to the lab labeled as a right auxillary lymph node. He is now referring me to Emory's Winship Cancer Institute in Atlanta, GA. I see the Dr on Sept 13th and I really hope they take this seriously after all that I have read. I want a Dr that understands phyllodes and the possibilities. I have found a Facebook support group. There are now 142 members in the group with benign, borderline and malignant phyllodes. Please search for Phyllodes Support Group if you have a Facebook account. I have learned alot so far by joining. I have also gone to www.23andme.com and signed up for the phyllodes genome study. I just received my kit this week.

janet50
Posts: 1
Joined: Sep 2011

I had my phyllod removed on July 7, 2011, and my surgeon said it benign, the dr who did the initial ultrasound also thought it was a lymph node. After my surgery he stated it could grow back and would NEVER be Malignant. I went home jumped on the internet and started reading. I can't believe he told me that!!!! This was local rural surgeon, I rely on Indian Health Services for my medical needs, since I don't have insurance. But the reason I am here, on this page today is because yesterday as I was driving home from work I started thinking about THE LUMP, and I have not in all these months tried to even touch my surgery spot, because I am scared. I did not even try to go back and see the surgeon to let him know what I found out and ask him if he got every thing out because he did not know what is was when he did the surgery, I actually had to request that he take out some extra tissue that had been growing around the tumor! I guess I need to get some courage, or maybe just to care about myself a litte more than to let this go. thanks for listening

Orange42
Posts: 1
Joined: Feb 2012

I have been recently diagnosed with a benign phyllode tumor. I have an appointment with a breast specialist next week. Is there a list of questions tha I can ask?

Before I had the biopsy I thought I had a fibroidoma. I am in my late 40's and scared about this process. Both the gyn and radiologist mentioned surgery to take it out. Is the recovery difficult? Should I do the surgery ASAP?
All answers and comments are greatly appreciated.

Thank you!

aradiantreflection
Posts: 1
Joined: Jul 2013

Hi, I was reading your story and mine is very similar to yours. We are the same age I think. I have had at least 15 fibroadenomas removed and 1 very large phyllodes removed in a lumpectomy in 2011. I am wondering if you ever got any information on other options. Like you, I am so sick of doing this every few months and the anxiety is taking me over. I know we must be increasing my chances of something worse popping up. I have been trying some wholisitic options but I am now leaning toward a double mastectomy. This was recommended to me from my very first doctor when I found the large phyllodes. Three years later and many more surgeries and scars, I am ready to be done with this and not experience it until menopause. 

I would really love to hear where you are now in your journey and anything you found out about treatment options. Thanks, fellow survivor! Smile

DAWNmisty
Posts: 2
Joined: Oct 2011

My daughter has just turned 17.We went to the oncologist who did an immediate bisectomy and 3 days later still did not hear results. I called the doctors office who told me she would have the nurse call me back with the results. The nurse called back and said the oncology report was vauge and could not tell me if she had cancer. I went to the doctor's office and picked up the chart note which said she had a biphase fibro...malignant pyllodes that was 5cm. She is only a B cup. The surgen called that day to set up a meeting. We met w a general surgen. The general surgen did not say anything about cancer except she slipped up and said she usually works on older women as breast cancer patients. She was very notulant about the whole thing like it was nothing and she would only remove the 5 cm and then biopsy the tumor and possibly have to go back and remove an additional 3 cm. She would not discuss any reconstructive surgury with us. I hate PPOs! There has got to be a specialist out there!

sandy12345
Posts: 1
Joined: Apr 2012

Hi Dawnmisty

I was just wondering how your daughter is now doing? I really do hope things are going well for her. My daughter who is 19 was diagnosed 2 weeks ago with a malignant phyllodes tumour. She has had this removed and apparently has clear margins which I guess is good so now we are at a stage where I guess we wait. Her next appointment is in 3 months time for scans etc. Thinking of you. xxxxx

Amie1006
Posts: 1
Joined: Oct 2012

It's interesting that you're hesitant in your doctor's confidence. I am now 30 years old, but have my first tumor when I was 22 which turned out to be a phyllodes tumor (benign). It took a lot of doctors and a head pathologist at the Medical College of WI to figure out that my tumor was a phyllodes. 8 years ago, there didn't seem to be a lot of information about phyllodes... still doesn't, but there is far more now than just 8 years ago. I was basically told that it was benign and they would need to go back in to remove the surrounding tissue. That's all I knew and moved on in my life not thinking much of it after my surgeries.

Since my orginall surgery, I have undergone a 3rd surgery (3 years ago) to remove two carcinoma in situ tumors which they considered "pre-cancerous." I have since learned that tummors have a rating scale called Birats Scale. Not a bad idea to find out your Birats score.

I had an MRI done on both of my breasts 3 days ago and found out that I have suspicious masses again. 2 in my left breast (which has been the host for my last 3 tumors) and 1 in my right. Thank goodness for my MRI. Despite my requests to have my right side checked (all my tumors have been in my left side), no one has ever checked because "there was no reason." I also go in for the removal of my right ovary because I have a teratoma in my ovary.

I guess my point is that I do not find a lot of comfort from doctors. I have been through a lot of doctors and even a topic of a cancer conference with top doctors from my state. With being so young when they found my first tumor, I felt as though no one took me seriously. Since then, I have been a host of numerous issues. I am not sure if these are all related or not. With any phyllodes, it should be considered serious, benign or not, because it's capability to become malignant and probability of regrowth.

Be sure to push doctors and if you're not satisified with your doctor, don't be afraid to move on to the next one. It was my own voice at a young age and because of my determination, I have been able to catch other abnormal/pre-cancerous areas.

At this point in my life, doctors are starting to become more cautious with me. If you are able to afford a MRI or your insurance will cover it, I would inquire about having one done. Young female's breast tissue is to dense for a mammogram, that's often why ultrasounds are done. But MRIs are the best.

It was nice to find this thread of info on Phyllodes. As stated often in others' posts.... doctors don't know much about phyllodes. It seems to be all of us who has the most knowledge on this subject. We're the experts.

Question for all of you out there!!!!

1.) How old were you when you had your phyllodes/
2.) Benign or Malignant
3.) Did you have a full mastectomy?
4.) If you had a full mastectomy, was it bilateral (both)?
5.) Did you have reconstructive surgery?
6.) Are you satisfied with your reconstructive surgery?
7.) Any downfalls to a full mastectomy & reconstructive surgery?

Thank you for your answers. I am considering a full mastectomy but I am completely frightened by the idea of loosing my breast(s).

mariaantoniettex
Posts: 2
Joined: Mar 2013

At 19 the last thing i ever expected was to have breast cancer let alone any type of tumor. I had noticed a lump that appeared out of no where so I got worried. I gave my doctor a call and the next day I was getting checked out. A couple of days later I had an appt to get a ultra sound done, it was a benign tumor but as told I would need surgery because it was farely large. I got a couple of opinions from doctors who all said it was a fiberdinoma because of my age. The last doctor who I spoke to has been the one I've stuck with, her name is Doctor Carla Fisher and she is a doctor at the university of penn. When I spoke to her she said that it was either a fiberdinoma or a phyllodes tumor, she breifed me on the tumor and all and pretty much said that if I wanted a 100% answer as to what this lump was surgery would be the best option. Three days later I was in the surgery room getting this done. The day she called to let me know what the results where she was so upset, she let me know that it was benign but in this case it really doesnt make a huge difference and that we would have to schedule another procedure to do a partial masectomy. Well lets just say the first surgery didnt go as smooth because the tumor had already implated roots and she had to remove tissue than and there. When I went to my second surgery apparently I had another tumor growing right next to the first so I had alot more tissue taken out than what I was told. She said she was able to remove the other tumor as well as enough tissue. She did advise me that although we removed the tumor and tissue it doesnt mean that it wouldnt or couldnt come back in the future. She did mention that although it was benign if untreated it could of become melignant. When I went to look at information on this tumor I got very little information and the fact that they dont know how this tumor can form and all worries me. There is very little information and I cant help but worry that this is going to be a life time struggle. I have recently been getting pains around the same location the first tumor was but currently I am waiting for insurance from work and im just all around worried of what the out come could be. at 19 I never pictured I would be in this position but you never know what could happen. The scary thing is that this tumor is so rare that doctors often times dont even mention it. When my doctor told me I was cleared and that I shoul make the follow up appt 6 months from now she turned around and said you know I usually get women in there late 20's to late 60's in my office, your the first teen I have had who I treated for breast cancer. She then turned around and said I have seen your face here way to much, and although your a sweetheart I dont want to see you back here let alone treat you any time soon. She was just as shocked as I and my family was when I was diagnosed. I wish this tumor was put out there more often so woman of all ages could be aware of.

MNHokie
Posts: 1
Joined: Oct 2011

Hey all... sounds like we are all going through a lot of the same thing. A couple of things I'd like to share.

First, my story. I had a lump growth I noticed about a year ago, told to watch it. It was still growing at my yearly pap exam so the gyno did a breast exam, noticed the one I'd found and one other, sent me for mammogram. Mammo showed two lumps, left one suspicious and was scheduled for surgery. That was end of March 2011. Went fine, diagnosed a fibradinoma. Life went on... until August, when I noticed something growing in the same spot, it felt like a fluid collection but so long after surgery!? I called my surgeon, already had an ultrasound scheduled for the right breast lump they found originally... so she looked at both sides. Large lump that grew seemingly overnight... literally noticed it one day, then it was HUGE... they removed it, thinking it was another fibroadinoma that grew in the old bed of the one removed. Came back a borderline/low-grade malignant (miotic level of 10/10HPF) Phyllodes... of course they then had to go back in and take margins. Surgeon felt it was nothing to worry about and it wasn't cancer, wouldn't come back. I'd already done my research and had requested a referral to a radiation oncologist (see below article)... she agreed but didn't want to. So, I went to Mayo clinic for a second opinion. They are amazing and I would highly recommend them... they've seen it before, a fair amount of cases and they take it seriously without going overboard. More images found two new lumps... so they did core needle biopsies of all three (the right one that was lingering from March included)... all benign but the radiation oncologist at Mayo recommends radiation to try to keep this from reoccuring, because next time I'm looking at a mastectomy and I'm a pretty large girl, 42 DD/E cup.... mine grow large and fast.

Here's a couple of things I'd like to share with you for research and support:

1. There is a paper, a well done trial, which shows the benefit of radiation after breast conserving surgeries (lumpectomy instead of mastectomy)... http://cancer.dartmouth.edu/breast/breast_phyllodes_partial_radiation.html

2. There is also a clinical trial with these same doctors currently recruiting participants: http://clinicaltrials.gov/ct2/show/NCT01089374

3. There are two facebook groups with some GREAT women and an amazing amount of collective information, experiences and support... please consider looking into them:
http://www.facebook.com/groups/126241111043/
http://www.facebook.com/groups/57766909888/

4. There is a wealth of information online, but it all conflicts... here's a good 'handout' version of the borderline/malignant information (basic patient info):
http://www2.breastcancercare.org.uk/sites/default/files/Phyllodes%20tumours%20malignant%20and%20borderline%20malignan.pdf
And here's the one for benign Phyllodes:
http://www2.breastcancercare.org.uk/sites/default/files/Benign%20phyllodes%20tumour%20LP.pdf

5. You are going to get people and doctors who don't consider this a real cancer. Some will call it a sarcoma, not a breast cancer. Some recognize it as a breast cancer. Some just don't know anything about it at all. Even those who know a great deal, can't seem to agree on how to classify it... or even how to grade them (there's about 5 current systems for 'grading' the tumor from benign to malignant)... this is your body, keep making noise and asking and calling and go to the next person if this one doesn't listen. If you need an advocate or more information my email is at the bottom of this... please use it. It is difficult at best to deal with anything like this, even worse when there is so little info and what is available conflicts... add in insurance companies and uneducated medical professionals and it becomes overwhelming... deep breath... educate yourself and be your best advocate.

6. Here's some of the sites I use for people and doctors to examine:

http://www.breastcancer.org/symptoms/types/phyllodes/diagnosis.jsp

http://www.hopkinsmedicine.org/avon_foundation_breast_center/breast_cancers_other_conditions/phyllodes_tumors.html

http://www.mayoclinic.org/medical-edge-newspaper-2011/apr-29a.html

http://community.breastcancer.org/forum/83/topic/749000?page=1#post_2447588

Please, feel free to contact me for more resources, questions... or just support from someone who's been there and currently... still there... :) just one day at a time.

katelynn@vt.edu

yvonne47
Posts: 1
Joined: Nov 2011

Here's my story.. I was seventeen when this happened.. Right breast became large very fast and looked deformed. I went for exams and nothing was found. I even went for a mammography. Nothing showed on the xray.. Next step was to go to a plastic surgeon to do a reduction because the size difference was so huge. I was a small girl... about 100 pounds. I went in for plastic surgery and a huge tumor was found. The size of a large grapefruit i was told. The surgeon removed the tumor and put an implant in.. To this day I wonder if a plastic surgeon knew enough about this tumor to properly diagnose if it was cancer or not. Shortly after my surgery the tumor grew back around the implant. Same thing.. I now am 47 and for year's my mammography showed no breast tissue or hardly any.. Just the huge implant. Suddenly my last one shows a lot of breast tissue.. I dont know how that can be.. and once again I am wondering if maybe thats not it. Hopefully someday this crazy tumor will be figured out even though it's so rare.

in it to win it
Posts: 2
Joined: Jan 2012

Thanks for the posting and the info. I went through all the test and final dx is a malignant tumor in the left breast, Removed Nov 30/11 and (4.5 cm and it grew very fast!) good margins were acheived but not at the chest wall--it grew on the underside of my breast right where the bra sits (fun for post lumpectomy recovery)
Bottom line MNHokie, are you having radiation therapy? I am scheduled to see rad onc next week.
The surgeon seemed very happy with the result though I just had an appointment with my GP and she really, really scared me even more than I have been--back to long bouts of crying--don't really like the me that has become--where did the me go that took everything in stride and dealt with things--excuse the little rant.

luvmy4h
Posts: 1
Joined: Sep 2012

Hi All.....I was diagnosed with malignant phylloid Feb. 2011. I chose to have bilateral mastectomy with reconstructive surgery. I did have chemo for this tumor. My rad. oncologist did not think I needed radiation. My medical oncologist said they do the chemo and treat it like a sarcoma. I went through 4 chemo treatments of 2 different types of chemo. Since it travel through blood vessels because it starts in the connective tissue. I get bloodwork drawn every 3 months and have been doing well so far. I hope everyone else is doing well.

amritbedi
Posts: 2
Joined: Sep 2012

Hi - My wife was detected a Malignant Phylloid in 1st week of Sep'12 and was advised mastectomy of her breast. She underwent the mastectomy surgery in 2nd week of Sep'12 and during the process 1 of the 21 lymphnodes was also detected with malignancy.

We are now in double minds on the way ahead i.e. Radiotherapy only or a combination of radiotherapy and Chemotherapy? Can you please help advise basis the process you underwent

jc78's picture
jc78
Posts: 1
Joined: Feb 2013

hi i was recently diagnosed with a fibroadenoma  with ",leaf like" pattern possibly low grade phyllodes. i went to see a dr today to discuss surgery to have it removed and this dr said phyllodes is just scar tissue?! i really dont think he knew much of this since he is a plastic surgeon, my question is does phyllodes cause pain because i have had pain in my right breast everyday for a week now and should i take this seriously because i keep hearing benign tumor or fibroadenoma so im just wondering if phyllodes might just be of no real concern? can somebody help me please?

mariaantoniettex
Posts: 2
Joined: Mar 2013

My doctor put both a fiberdinoma and phyllodes tumor down on the table for me because i was 19, diagnosed on sept 2012. Once I got surgery it came back as a phyllodes tumor that was benign. It doesnt hurt to get a second look becuase regardless if its benign or melignant it seems like its just the same procedures done. My doctor mention that although it was benign it doesnt mean it could turn melignant. Mine was a bit painful and I now am feeling pain where I had the tumor as well as partial masectomy done. I'm not sure if its just scar tissue or if it could be something serious again. If It is another tumor I am deciding to get a masectomy done.

Eln5
Posts: 1
Joined: Apr 2012

Thank you for all of this information. This site has had the most information than any that I've found, and I've been searching for a while.

I have had four surgeries in the exact same spot in the past two years, all diagnosed as phyllodes tumors, ranging in size from 1 cm to 6 cm. I just made an appointment for a sonogram because suddenly I can feel a lump in the same spot again (last surgery was three months ago). I just know this is going to be surgery number five. I'm seriously running out of tissue that can be taken and I'm thinking mastectomy is not far off. It sounds like some of you have already crossed that bridge and I think it might be the logical next step. I have no idea if my insurance will even cover that. Can anyone share their experience? If they do cover it will they only do the affected side?

The rare nature of this type of tumor makes it very hard to find others in the same boat, but at least this site lets us know that there are others out there. I'd like to send good thoughts to all who are on this site who are up against this.

Kp89
Posts: 1
Joined: Feb 2012

I recently went to the Dr. for eval. on a breast lump that seems to have grown quickly. Since I'm 22, the first reaction was of course to brush it off and call it cysts. I insisted to have further eval and was scheduled for a Mamo/ultrasound. It turned out to be a solid nodule, non cystic. I got the news that I needed a core biopsy. But of course, again, bc of my age, the radiologist insisted that it was just a fibroadenoma. I just received the results from the biopsy and it looks suspicious for a phyllodes tumor. So next step is a lumpectomy to confirm diagnosis. It's frustrating to see the laid back attitude that drs. show when you're having these problems at a young age. And I'm going through alot of anxiety now. Because I feel like once I know the diagnosis, whatever it turns out to be, I can do something about it. So my question for those of you who were diagnosed at a young age is: did you receive the same reaction from your doctors while the diagnostic testing were still in progress? Did they continue to tell you that it's "probably nothing because of your age". Or was there a more serious approach?

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