Phyllodes tumor

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

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!!

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!

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?

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?

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.

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.

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

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.

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.

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!