Phyllodes tumor
Comments
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PTalliswell said:Feeling Conflicted
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.
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.0 -
PTalliswell said:Feeling Conflicted
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.
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.0 -
Malignant Phyllodes TumorJunerip said:PT
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.
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!!0 -
worriedalliswell said:Feeling Conflicted
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.
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.0 -
I had a mastectomy afterSMhope8 said:worried
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.
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.0 -
How are you?SMhope8 said:worried
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.
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!0 -
HootieGirlHootieGirl said:Malignant Phyllodes Tumor
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!!
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, June0 -
PhyllodesJunerip said:How are you?
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!
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.0 -
PhyllodesKris2009 said:Phyllodes
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.
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 listening0 -
Happy 17th birthday you have malignant phyllode!
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!0 -
Hey all... sounds like we
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 tumours malignant and borderline malignan.pdf
And here's the one for benign Phyllodes:
http://www2.breastcancercare.org.uk/sites/default/files/Benign phyllodes tumour LP.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.edu0 -
PhyllodesMNHokie said:Hey all... sounds like we
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 tumours malignant and borderline malignan.pdf
And here's the one for benign Phyllodes:
http://www2.breastcancercare.org.uk/sites/default/files/Benign phyllodes tumour LP.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
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.0 -
Phylodes Tumor nutritional programDiane Nave said:Second Phyllodes Tumor Surgery
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.
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 1977.0 -
Hi Diane,Diane Nave said:Second Phyllodes Tumor Surgery
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.
I hope this
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!0 -
phyllodes MNHokieMNHokie said:Hey all... sounds like we
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 tumours malignant and borderline malignan.pdf
And here's the one for benign Phyllodes:
http://www2.breastcancercare.org.uk/sites/default/files/Benign phyllodes tumour LP.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
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.0 -
Hootiegirl- question
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?0 -
new diagnosisSMhope8 said:worried
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.
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!0 -
pyllodes tumor
I am new to the site, but like you, not new to the disease. I found a lump in 2007. After a biopsy, my surgeon knew exactly wht it was and I had a lumpectomy of the left breast. I had good wide, clean margins and believed it to be gone. In the summer of 2010 I found a lump along the scar line. I knew what it was and immediately saw a breast surgeon. I had a total left mastectomy and a tram flap reconstruction. In March of 2011 I found 2 lumps in the exact area of the last tumor. I immediately saw the brest surgeon and they exised both with clean margins, again. They left the tram flap as it will not grow in "belly tissue". At this point I didn't care at all about reconstruction and asked them to be as aggresive as necesssary with the surgery. I had 35 radiation treatments and again I felt fine. My husband and I took a wonderful well deserved vacation in the fall. I had been getting CT scans every 6 months and in January 2012 they found a metastasis on my right lung. I was shocked as I feel so wonderful. I immediately had surgery to remove the tumor and had a wedge of my lung removed. They again have good clean margins. The surgery was much easier that the previous 2 surgeries. Surprisingly. I again feel terrific and am waiting to see the oncologist later this month. My surgeon said he will probably try a pill. I am not sure what kind of pill. Has anyone out there had a metastasis of a phyllodes? Has anyone had chemo for this. I have not seen any real encouraging statics on line for metastasis and some days it is hard to stay optimistic. I have looked on the rare cancer forum and there are lots of stories about women with phyllodes. For such a rare tumor I was surprised how many posts there are. If anyone has experience with a chemo for this cancer, please respond. Thanks, and good luck to all of us!0 -
Phyllodes Tumorcharleegirl said:pyllodes tumor
I am new to the site, but like you, not new to the disease. I found a lump in 2007. After a biopsy, my surgeon knew exactly wht it was and I had a lumpectomy of the left breast. I had good wide, clean margins and believed it to be gone. In the summer of 2010 I found a lump along the scar line. I knew what it was and immediately saw a breast surgeon. I had a total left mastectomy and a tram flap reconstruction. In March of 2011 I found 2 lumps in the exact area of the last tumor. I immediately saw the brest surgeon and they exised both with clean margins, again. They left the tram flap as it will not grow in "belly tissue". At this point I didn't care at all about reconstruction and asked them to be as aggresive as necesssary with the surgery. I had 35 radiation treatments and again I felt fine. My husband and I took a wonderful well deserved vacation in the fall. I had been getting CT scans every 6 months and in January 2012 they found a metastasis on my right lung. I was shocked as I feel so wonderful. I immediately had surgery to remove the tumor and had a wedge of my lung removed. They again have good clean margins. The surgery was much easier that the previous 2 surgeries. Surprisingly. I again feel terrific and am waiting to see the oncologist later this month. My surgeon said he will probably try a pill. I am not sure what kind of pill. Has anyone out there had a metastasis of a phyllodes? Has anyone had chemo for this. I have not seen any real encouraging statics on line for metastasis and some days it is hard to stay optimistic. I have looked on the rare cancer forum and there are lots of stories about women with phyllodes. For such a rare tumor I was surprised how many posts there are. If anyone has experience with a chemo for this cancer, please respond. Thanks, and good luck to all of us!
That's what my pathology report says. I refuse to get myself freaked out on google before meeting with surgeon on Monday but knew the ladies on this site would give me better info. Any Info is greatly appreciated. Questions to ask surgeon etc???0 -
Hi DawnmistyDAWNmisty said:Happy 17th birthday you have malignant phyllode!
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!
I was just
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. xxxxx0
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