Phyllodes tumor

Eln5

MNHokie 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

4 Surgeries and Counting
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.

charleegirl

HootieGirl 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!!

How are you doing now? What
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

HootieGirl 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!!

HootieGirl- it sounds like
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.

booboo64

Phyllodes tumor
In April I was diagnosed with a borderline phyllodes tumor. I had a wide excision with .07 cm clear margins. My surgeon said he would check me again in a year. I had been reading online and I didn't feel comfortable waiting a year. So, he sent me to a medical oncologist. I went to him and he talked with me for an hour and a half about phyllodes tumors. He said that the new studies were showing that radiation drastically reduces recurring tumors. So he sent me to the radiation oncologist in his own building. He told me I didn't need radiation. The medical oncologist said if I did it, he was 90% sure I wouldn't have a recurrence. So, when I left the radiation oncologist, I felt do confused. I waited a week and called the medical oncologist back and told him what the other doctor said. He told me that I absolutely needed radiation and he would call the other doctor and tell him. So, I got another appointment with the radiation oncologist to discuss my treatment plan. He said that we were going to do it just because I called and asked for it. He made me feel like crap and I felt very good with the medical oncologist. I had even emailed Dr. Barth who is doing a study at Dartmouth. Anyway, I will be starting radiation next week for 6 1/2 weeks. Has anybody already done this?

booboo64

charleegirl 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!

How are you doing now?

How are you doing now?

booboo64

charleegirl 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!

How are you doing now
How are you doing now charleegirl?

4gnee

booboo64 said:

Phyllodes tumor
In April I was diagnosed with a borderline phyllodes tumor. I had a wide excision with .07 cm clear margins. My surgeon said he would check me again in a year. I had been reading online and I didn't feel comfortable waiting a year. So, he sent me to a medical oncologist. I went to him and he talked with me for an hour and a half about phyllodes tumors. He said that the new studies were showing that radiation drastically reduces recurring tumors. So he sent me to the radiation oncologist in his own building. He told me I didn't need radiation. The medical oncologist said if I did it, he was 90% sure I wouldn't have a recurrence. So, when I left the radiation oncologist, I felt do confused. I waited a week and called the medical oncologist back and told him what the other doctor said. He told me that I absolutely needed radiation and he would call the other doctor and tell him. So, I got another appointment with the radiation oncologist to discuss my treatment plan. He said that we were going to do it just because I called and asked for it. He made me feel like crap and I felt very good with the medical oncologist. I had even emailed Dr. Barth who is doing a study at Dartmouth. Anyway, I will be starting radiation next week for 6 1/2 weeks. Has anybody already done this?

Phyllodes -- Help for my siter
I am actually here for my sister Jeanie who was diagnosed with a phyllodes tumor in the fall of 2008. From there she soon found her second tumor in the other breast. After that it was in the lymph nodes and now it has spread to the lungs. Nearly two weeks ago she underwent her second lung surgery and the surgeon elected to do nothing as they found more tumors than the three they initially saw from the PET Scan. She now has an appointment at Vanderbilt University Hospital next week. It seems everyone is dumbstruck by the way this tumor (which they are still referring to as pyllodes) has spread. Does anyone have any information that may be helpful and offer us some hope?

booboo64

4gnee said:

Phyllodes -- Help for my siter
I am actually here for my sister Jeanie who was diagnosed with a phyllodes tumor in the fall of 2008. From there she soon found her second tumor in the other breast. After that it was in the lymph nodes and now it has spread to the lungs. Nearly two weeks ago she underwent her second lung surgery and the surgeon elected to do nothing as they found more tumors than the three they initially saw from the PET Scan. She now has an appointment at Vanderbilt University Hospital next week. It seems everyone is dumbstruck by the way this tumor (which they are still referring to as pyllodes) has spread. Does anyone have any information that may be helpful and offer us some hope?

What treatment did they give
What treatment did they give her when she was first diagnosed? I had mine remained with clear margins and now I am doing radiation. I am on my 8th treatment and I have 25 more to go. You should definitely find an expert who know about this. There are not many places that do. Please keep me posted. Praying for you and your sister!

booboo64

4gnee said:

Phyllodes -- Help for my siter
I am actually here for my sister Jeanie who was diagnosed with a phyllodes tumor in the fall of 2008. From there she soon found her second tumor in the other breast. After that it was in the lymph nodes and now it has spread to the lungs. Nearly two weeks ago she underwent her second lung surgery and the surgeon elected to do nothing as they found more tumors than the three they initially saw from the PET Scan. She now has an appointment at Vanderbilt University Hospital next week. It seems everyone is dumbstruck by the way this tumor (which they are still referring to as pyllodes) has spread. Does anyone have any information that may be helpful and offer us some hope?

How are things going?

How are things going?

heaven1021

booboo64 said:

Phyllodes tumor
In April I was diagnosed with a borderline phyllodes tumor. I had a wide excision with .07 cm clear margins. My surgeon said he would check me again in a year. I had been reading online and I didn't feel comfortable waiting a year. So, he sent me to a medical oncologist. I went to him and he talked with me for an hour and a half about phyllodes tumors. He said that the new studies were showing that radiation drastically reduces recurring tumors. So he sent me to the radiation oncologist in his own building. He told me I didn't need radiation. The medical oncologist said if I did it, he was 90% sure I wouldn't have a recurrence. So, when I left the radiation oncologist, I felt do confused. I waited a week and called the medical oncologist back and told him what the other doctor said. He told me that I absolutely needed radiation and he would call the other doctor and tell him. So, I got another appointment with the radiation oncologist to discuss my treatment plan. He said that we were going to do it just because I called and asked for it. He made me feel like crap and I felt very good with the medical oncologist. I had even emailed Dr. Barth who is doing a study at Dartmouth. Anyway, I will be starting radiation next week for 6 1/2 weeks. Has anybody already done this?

Phyllodes Tumor
Hey Booboo64, I was diagnosed with a Malignant Phyllodes in February of this year. Like you I had a wide excision with clear margins. The mdical oncolgist I went to said I did not need any radiation, but my surgeon insisted I needed radiation because he felt without it there would be a possible recurrence and he sent me to the radiation oncologist which agreed with my surgeon. My Surgeon and Radialogist seemed to be very knowledgeble on Phyllodes, as for the MD Oncologist I can't say the same for. So I have completed 6 1/2 weeks of radiation. Keep your fingers crossed in hopes this thing does'nt return.

booboo64

heaven1021 said:

Phyllodes Tumor
Hey Booboo64, I was diagnosed with a Malignant Phyllodes in February of this year. Like you I had a wide excision with clear margins. The mdical oncolgist I went to said I did not need any radiation, but my surgeon insisted I needed radiation because he felt without it there would be a possible recurrence and he sent me to the radiation oncologist which agreed with my surgeon. My Surgeon and Radialogist seemed to be very knowledgeble on Phyllodes, as for the MD Oncologist I can't say the same for. So I have completed 6 1/2 weeks of radiation. Keep your fingers crossed in hopes this thing does'nt return.

Hi Heaven 1021. I am
Hi Heaven 1021. I am currently getting radiation. I have 33 treatments in all. I have already done 22. I am hoping this will stop recurrences. It's nice to talk to someone else with the same kind of cancer. There is no one around here that has ever heard of it besides my doctors. Thank goodness for a team of doctors. I am glad you are doing well now. Keep in touch.

luvmy4h

in it to win it said:

phyllodes MNHokie
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.

Hi All.....I was diagnosed
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

luvmy4h said:

Hi All.....I was diagnosed
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.

Did your lymphnodes also detected malignancy?
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

amritbedi

heaven1021 said:

Phyllodes Tumor
Hey Booboo64, I was diagnosed with a Malignant Phyllodes in February of this year. Like you I had a wide excision with clear margins. The mdical oncolgist I went to said I did not need any radiation, but my surgeon insisted I needed radiation because he felt without it there would be a possible recurrence and he sent me to the radiation oncologist which agreed with my surgeon. My Surgeon and Radialogist seemed to be very knowledgeble on Phyllodes, as for the MD Oncologist I can't say the same for. So I have completed 6 1/2 weeks of radiation. Keep your fingers crossed in hopes this thing does'nt return.

Chemotherapy for Phylloides Tumor?
Hi - My wife underwent for Matectomy on account of the Phylloides tumor that was detected. Since, cells of malignant phylloides have also been detected in one of the 21 lymphnodes, her surgeon has advised to undergo chemotherapy as well as radiations. The treatment will start in a week from now. Hope all will be well for my wife and everyone in this group and elsewhere

Shilpa_H

amritbedi said:

Chemotherapy for Phylloides Tumor?
Hi - My wife underwent for Matectomy on account of the Phylloides tumor that was detected. Since, cells of malignant phylloides have also been detected in one of the 21 lymphnodes, her surgeon has advised to undergo chemotherapy as well as radiations. The treatment will start in a week from now. Hope all will be well for my wife and everyone in this group and elsewhere

Benign Phyllodes Tumor
Hi All,
I was diagnosed with the benign phyllodes tumor in my right breast on June 2010. I had the lump for 3 years and I never felt any pain or discomfort. But last year, I decided to go doctor. I was referred to the breast surgeon. After the needle biopsy and core biopsy, my doctor said that the lump was a benign tumor and because of the size (2.7cms), he recommended to remove the tumor. I was scheduled for a wide local excision within 2 weeks. When the tumor biopsy result was back, my doctor scheduled a meeting and informed me that the tumor was Phyllodes and they had to do the re-excision to get the clear margins. I didn’t had any other choice and agreed to the re-excision. The re-excision was scheduled in August 2010. After the operation, the doctor said that they had the clear margin and the chance of re-occurrence was very low. I was scheduled for yearly checkup. Last week I had been to my first after surgery checkup. Everything was normal and my next appointment is scheduled for next year.
All the best for the people who are fighting against phyllodes tumors.

Amie1006

DAWNmisty 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!

Questions about Mastectomy/Recontruction
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).

Becks21

Shilpa_H said:

Benign Phyllodes Tumor
Hi All,
I was diagnosed with the benign phyllodes tumor in my right breast on June 2010. I had the lump for 3 years and I never felt any pain or discomfort. But last year, I decided to go doctor. I was referred to the breast surgeon. After the needle biopsy and core biopsy, my doctor said that the lump was a benign tumor and because of the size (2.7cms), he recommended to remove the tumor. I was scheduled for a wide local excision within 2 weeks. When the tumor biopsy result was back, my doctor scheduled a meeting and informed me that the tumor was Phyllodes and they had to do the re-excision to get the clear margins. I didn’t had any other choice and agreed to the re-excision. The re-excision was scheduled in August 2010. After the operation, the doctor said that they had the clear margin and the chance of re-occurrence was very low. I was scheduled for yearly checkup. Last week I had been to my first after surgery checkup. Everything was normal and my next appointment is scheduled for next year.
All the best for the people who are fighting against phyllodes tumors.

Phyllodes Tumor
Hi all,

i found my first lump around 2 and half years ago i went to my doctor where he was convinced it was a cist and insisted in sticking a needle in it to suck out the inside and then it would go away he realised it was was very painful and wasnt working he reffered me to the breast clinic. They decided it was a fibrodeamia (i cant spell lol) they decided to remove it after they realised it was a phyllodes tumor but was not cancerous, they put me on yearly check ups after but didnt operate a second time to make sure i had the clear margin. i had my last yearly appointment this year where they discovered another lump which they did a biopsy on a said it was a fibrodeamia. they said it was not worth operating but if i wanted to do it to put my mind at ease i could. after feeling i was making a big deal out of nothing i decided to stupily leave it, now i have changed my mind as i have 2 lumps in one breast (one where the phyllodes tumor use to be and another lump in the other breast (the lump they declared was a fibrodeamia. now when ringing my breast specialist they say i have to go back to my doctor to get re reffered as im no longer a patient.

but i feel worried as they first said my lump was a fibrodeamia and it wasnt it was a phyllodes tumour could they have made the same mistake again??
also as ive only just turnt 21 these phyllodes tumour normally occur in people in their 40-50's am i making a big deal out of nothing? i havent booked my doctor appointment yet but its been really encouraging reading all your comments as i have never heard of this before or anyone else that has had it.

thank you and sorry if you've read this and ive rambled on,
all the best to everyone!
Becks from england.

TinaV123

Becks21 said:

Phyllodes Tumor
Hi all,

i found my first lump around 2 and half years ago i went to my doctor where he was convinced it was a cist and insisted in sticking a needle in it to suck out the inside and then it would go away he realised it was was very painful and wasnt working he reffered me to the breast clinic. They decided it was a fibrodeamia (i cant spell lol) they decided to remove it after they realised it was a phyllodes tumor but was not cancerous, they put me on yearly check ups after but didnt operate a second time to make sure i had the clear margin. i had my last yearly appointment this year where they discovered another lump which they did a biopsy on a said it was a fibrodeamia. they said it was not worth operating but if i wanted to do it to put my mind at ease i could. after feeling i was making a big deal out of nothing i decided to stupily leave it, now i have changed my mind as i have 2 lumps in one breast (one where the phyllodes tumor use to be and another lump in the other breast (the lump they declared was a fibrodeamia. now when ringing my breast specialist they say i have to go back to my doctor to get re reffered as im no longer a patient.

but i feel worried as they first said my lump was a fibrodeamia and it wasnt it was a phyllodes tumour could they have made the same mistake again??
also as ive only just turnt 21 these phyllodes tumour normally occur in people in their 40-50's am i making a big deal out of nothing? i havent booked my doctor appointment yet but its been really encouraging reading all your comments as i have never heard of this before or anyone else that has had it.

thank you and sorry if you've read this and ive rambled on,
all the best to everyone!
Becks from england.

Phyllodes Tumor

Hi everyone,

I found my first lump when I was pregnant with my youngest son in 2008. We couldn't get a biopsy done until after he was born and then I was breastfeeding so we waited. I soon lost milk supply in that side so we decided to take it out. That lump was diagosed as a fibroadinoma and I didn't have any problems for 2 years. In 2010, the lump came back again in the same place and they figured it was the same thing so they took it out because it was really painful and it too was a fibroadinoma. Last year, I had a small lump come back, but it wasn't painful and wasnt that big yet compared to my other ones, so we did a US guided core biopsy and it came back as a fibroadinoma. So we watched and waited because they basically said that as long as I could handle it, then we didn't need to take it out. In August/September of 2012, I noticed that it started to grow and by late November is was visible without my bra on and uncomfortable. It was about the size of a softball when I got in to see the breast surgeon in December. He was the first one to even mention the word phyllodes tumor to my husband and I. I had it removed with wide exicision last week and am home recouperating. We got the results back yesterday that it was malignant and most of it was low grade but there were 3 high grade spots in the interior of the tumor. We also found out that he didn't get clear margins on the superior portion, but there was a tumor there yet, the tissue was discolored and he took out everything he could  see but there were still malignant cells in the margins. I am getting a CT done tomorrow to make sure it hasn't metastized anywhere else. My doctor has been really great about giving us all of the information he has, but he admits that there is not much research on this. He gave us 2 options, get the mastectomy now, or get the CT and then wait for it to come back so he can actually see what he is going in to take and then he will take really wide margins. If it comes back after that he said it would be a mastectomy for sure. I just can't wrap my head around getting a mastectomy right now I am a fairly large breasted woman and he said it is harder to reconstruct for us if I would choose to reconstruct. I'm so glad for this website, because no one does know what this is and its nice to tell me story without having to explain everything about what it is. Any further help or information would be appreciated. thanks!

TinaV123

Becks21 said:

Phyllodes Tumor
Hi all,

i found my first lump around 2 and half years ago i went to my doctor where he was convinced it was a cist and insisted in sticking a needle in it to suck out the inside and then it would go away he realised it was was very painful and wasnt working he reffered me to the breast clinic. They decided it was a fibrodeamia (i cant spell lol) they decided to remove it after they realised it was a phyllodes tumor but was not cancerous, they put me on yearly check ups after but didnt operate a second time to make sure i had the clear margin. i had my last yearly appointment this year where they discovered another lump which they did a biopsy on a said it was a fibrodeamia. they said it was not worth operating but if i wanted to do it to put my mind at ease i could. after feeling i was making a big deal out of nothing i decided to stupily leave it, now i have changed my mind as i have 2 lumps in one breast (one where the phyllodes tumor use to be and another lump in the other breast (the lump they declared was a fibrodeamia. now when ringing my breast specialist they say i have to go back to my doctor to get re reffered as im no longer a patient.

but i feel worried as they first said my lump was a fibrodeamia and it wasnt it was a phyllodes tumour could they have made the same mistake again??
also as ive only just turnt 21 these phyllodes tumour normally occur in people in their 40-50's am i making a big deal out of nothing? i havent booked my doctor appointment yet but its been really encouraging reading all your comments as i have never heard of this before or anyone else that has had it.

thank you and sorry if you've read this and ive rambled on,
all the best to everyone!
Becks from england.

Phyllodes Tumor

Hi everyone,

I found my first lump when I was pregnant with my youngest son in 2008 at age 25. We couldn't get a biopsy done until after he was born and then I was breastfeeding so we waited. I soon lost milk supply in that side so we decided to take it out. That lump was diagosed as a fibroadinoma and I didn't have any problems for 2 years. In 2010, the lump came back again in the same place and they figured it was the same thing so they took it out because it was really painful and it too was a fibroadinoma. Last year, I had a small lump come back, but it wasn't painful and wasnt that big yet compared to my other ones, so we did a US guided core biopsy and it came back as a fibroadinoma. So we watched and waited because they basically said that as long as I could handle it, then we didn't need to take it out. In August/September of 2012, I noticed that it started to grow and by late November is was visible without my bra on and uncomfortable. It was about the size of a softball when I got in to see the breast surgeon in December. He was the first one to even mention the word phyllodes tumor to my husband and I. I had it removed with wide exicision last week and am home recouperating. We got the results back yesterday that it was malignant and most of it was low grade but there were 3 high grade spots in the interior of the tumor. We also found out that he didn't get clear margins on the superior portion, but there was a tumor there yet, the tissue was discolored and he took out everything he could  see but there were still malignant cells in the margins. I am getting a CT done tomorrow to make sure it hasn't metastized anywhere else. My doctor has been really great about giving us all of the information he has, but he admits that there is not much research on this. He gave us 2 options, get the mastectomy now, or get the CT and then wait for it to come back so he can actually see what he is going in to take and then he will take really wide margins. If it comes back after that he said it would be a mastectomy for sure. I just can't wrap my head around getting a mastectomy right now I am a fairly large breasted woman and he said it is harder to reconstruct for us if I would choose to reconstruct. I'm so glad for this website, because no one does know what this is and its nice to tell me story without having to explain everything about what it is. Any further help or information would be appreciated. thanks!

Cp17

Phyllodes tumor

Hi Sue, I'm Clarissa and I was diagnosed with a borderline phyllodes tumor when I was 16, now it still hasn't  been a year since my surgery and the doctors tell me not to worry, but it's really hard not to. On top of the tumor being rare, it's rare for people my age to have it. My doctors really didn't help me fully understand my cancer, but they said I'd be okay ??? Whatever that means. my surgeon was surprised by the size of my tumor it was huge, bigger than what they had felt origanally. I just don't know what's gonna happen to me, I just have 0 experience.