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Phyllodes tumor

Osullybird
Posts: 3
Joined: Jan 2010

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

charleegirl
Posts: 2
Joined: Feb 2012

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!

stacy_harp
Posts: 44
Joined: Jan 2012

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???

booboo64
Posts: 8
Joined: Apr 2012

How are you doing now?

booboo64
Posts: 8
Joined: Apr 2012

How are you doing now charleegirl?

booboo64
Posts: 8
Joined: Apr 2012

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
Posts: 1
Joined: Jun 2012

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
Posts: 8
Joined: Apr 2012

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
Posts: 8
Joined: Apr 2012

How are things going?

heaven1021
Posts: 7
Joined: Mar 2012

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
Posts: 8
Joined: Apr 2012

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.

amritbedi
Posts: 2
Joined: Sep 2012

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
Posts: 1
Joined: Sep 2012

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
Posts: 1
Joined: Dec 2012

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
Posts: 2
Joined: Jan 2013

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!

musictchr440
Posts: 2
Joined: Feb 2013

Hi, Everyone,

My name is Cindy, and I had surgery for at least a dozen fibroadenomas before being diagnosed with benign phylloides in 2001.  The treatment that my doctor recommended was a lumpectomy with wide margins.  In 2005, I found a lump in the same place where the benign phylloides had been.  Again, I had a lumpectomy, and 4 weeks later, and after review by 2 pathologists, the pathology report showed a malignant phylloides.  I needed wider margins, so my doctor recommended a mastectomy.  Since I had endured so many surgeries for various breast issues, and because I had a family history of breast cancer, I wanted this over, and I opted for a DOUBLE mastectomy, over objections from my surgeon. My husband and I insisted.  We decided that since the standard treatment is surgery we would attack this cancer with a sledgehammer and not a feather!   I am glad that I insisted on a double mastectomy, because the pathology report from the double mastectomy proved that I had a borderline malignant phylloides in the opposite breast.  These tumors can go from benign to malignant, and they are not to be taken lightly.  Before 1970, the standard treatment was mastectomy, and I think they had it right back then as the tumors do not respond to chemo or radiation.  I have had several PET scans, and to date, (and this is 2013) I have had no recurrence.  Thank God!  

So little is known about this rare cancer, and I have had to explain it to doctors and health professionals many times.  I wish more research and treatment options were available. Please just keep on top of all doctor visits, your exercise and nutrition, and your scans. Good luck and may God bless you.

 

 

TinaV123
Posts: 2
Joined: Jan 2013

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!

loves3
Posts: 2
Joined: Feb 2013

I do not think you are making a big deal about this. Phyllodes tumors can be aggressive whether they are benign or malignant. This means that they grow very quickly. These tumors can grow back and usually in the same place they were removed from. There isn't enough information out there on these types of tumors. My daughter is only 13 and has had 2 surgeries because of a malignant phyllodes tumor. Be as aggressive as you need to be to get the care you deserve. If it turns out to be bengin or to be a fibroid adenoma then oh well to anyone who does not like you pressing the issue. If you are concerned, then make sure someone addresses your concerns. If your health care providers aren't addressing your concerns then find new ones but do NOT stop seeking answers for your health concerns. Please make sure you are on top of your after care also. They should be giving you breast ultrasounds at least every 6 months to check for re-growth.

Cp17
Posts: 1
Joined: Jan 2013

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.

loves3
Posts: 2
Joined: Feb 2013

Hello All.

My 13 year old found a lump in her breast in November 2012. I immediately made an appointment with her pediatrician. We recieved a referral for a breast ultrasound. The soonest appointment we could get was for a month in December. At the ultrasound appointment, the radiologist came in to talk to us. He look at the images and said that it looked like a fibroid adenoma. He said that its common in girls during puberty, not to worry and that we would recieve a referral for a surgeon to discuss if we wanted to remove it or not. The ultrasound measured the lump at 2cm. Unfortunately, the staff in my daughter's pediatrician's office were incapable of filling out the referral form correctly. It took another month for them to get it right. Finally we got an appointment with the surgeon in January. The surgeon also looked at the imaging and agreed that it looked like a fibroid adenoma. We were given the option to watch and wait to see if would grow or to just have it removed and be done with it. We chose to have it removed and be done with it. The next week my daughter was in Outpatient Surgery having the lump removed. At the post-op check-up, the surgeon sat us down to talk to us. When I looked at the surgeon's face my stomach started to turn. In my head I was saying, "I'm being paranoid. My baby is only 13". The oncologist/surgeon explained that the mass removed was 5cm and that they originally thought (this is where my heart jumped in my throat) it was a fibroid adenoma but it wasn't. (My heart started racing.) The surgeon said it was a malignant (this is where my ears stopped working for a second because as a nurse I know malignant means cancer) phyllodes tumor. She went on to explain how rare it was and that the pathologist couldn't believe he sample was from a 13 year old girl and how they had a 2nd and 3rd pathologist confirm the diagnosis. (I swear she must have said "malignant phyllodes tumor" about 5 times before I heard the two words after malignant.) She consulted with 4 of her colleagues and they all agreed that because my daughter was so young that a second surgery would be needed to take out any remaining tissue from the tumor and to remove a 1cm margin around where the tumor had been. So the next week we were back in Outpatient Surgery. The surgeon removed a 4cm margin around most of where the tumor had been and a 2cm margin on the part that was right under the skin. It's been a week since the second surgery. The surgeon says my daughter still has fluid in that empty space and that it wouldn't resolve for a few months. My daughter has numbness in the area where the tissue was removed right up to the skin. Doc says the nerves have to regenerate which could take about a year. In the meantime, my daughter's oncologist/surgeon wants her to have a breast ultrasound every 6 months for the rest of her life to check for re-growth. Phyllodes tumors can grow back and whether they are benign or malignant, they are aggressive and grow quickly. If malignant, they could grow rapidly and spread to the lungs, lymph nodes and bone. Please make sure you are doing monthly BSEs and insist on frequent breast ultrasounds.

musictchr440
Posts: 2
Joined: Feb 2013

My name is Cindy, and I have survived malignant phylloides since 2005.  I just posted my story.  Please keep us up to date on your daughter.  I am praying for her, and for your family.  I live in Atlanta.

hollyhock79
Posts: 1
Joined: Feb 2013

Hello Ladies,
We still have a lot of misconceptions and conflicting advise out there. My mother was just diagnosed at Region's Breast Center here in MN with benign phyllodes tumor. Her surgeon called it cancer and did a lumpectomy. She got a second opinion from another surgeon who told her that it wasn't cancer and just a tumor.

Now, the first surgeon wants to go back in and remove more tissue to be sure it is all out. She doesn't know what to do or who to believe.

Everything I have read makes me believe that this isn't really rare, just that it has been misdiagnosed for so long. I lost my father to lung cancer back in 2005 and don't want to lose her to something we caught early enough because she makes a wrong choice now. Should she see an oncologist ? I feel losing a breast is better then her life, but she is the type that feels a yearly checkup is good enough because she don't want to believe it can hurt her. She told everybody from the start that it wasn't serious. I think she believes that if she thinks it away she won't have it. Please help me help my mother.

Thanks,
Holly

booboo64
Posts: 8
Joined: Apr 2012

 

Holly,

please go to Facebook and join the phyllodes support group page. So much more information there from women all over who have had Phyllodes tumors. Great info.

booboo64
Posts: 8
Joined: Apr 2012

Please join the Phyllodes Support Group Page on Facebook. It is private for members only to see. It has so much wonderful information from women and 1 man that have experiences with phyllodes tumors. It will give you more information than you can find anywhere. It has really been helpful. If you have any questions, just email me.

Kimbie45
Posts: 1
Joined: Apr 2013

I was diagnosed with a low grade PT in August 2011, so getting close to 2 years now.  I had a lumpectomy and then when they found it was low grade, they went back in to get wider margins.  Since then I have been followed with twice-yearly mammograms and physical exams and have even had a breast MRI with contrast.  So far nothing else of concern.  Will have my next mammogram in July and see what happens then.  I was about 41 at time of diagnosis, so right in the usual age group for this.

I was diagnosed with papillary thyroid cancer when I was 37, so I'm quite the specimen.  Yell

Stef_13
Posts: 1
Joined: Jun 2013

Hi I just turned 14 and got my results back on a biopsy and the doctors diagnosed phyllodes tumors...I have 4 on my right breast and they are groing rapidly. I am confused with all of this but my mother thinks I should keep myself informed. I am looking for as much information on this and am open for any recommendations on this matter. I am scheduled for surgery with a doctor that really has never treated any patient my age, I have not had blood work done but my biopsy report states phyllodes. Please advise...

maryjb
Posts: 2
Joined: Sep 2010

I am not sure where you are but my doctor is great. I had a mammogram in Aug 2010. They said I needed a biopsy. At first I made an appointment at the imaging place that did the mammogram but when I got home and the reality hit me I decided to check around to see the best place I could go. My sister has breast cancer and she went to Moffitt Cancer Center in Tampa FL. I had all of my records sent and saw them about three weeks later. They set me up with Dr. Laronga. She did another mammogram and exam. She set me up with a biopsy. After I had the biopsy she called about a week later and said I had a benign Phyllodes tumor. I was relieved but then she told me that it is cancer even though it is rated as benign. She gave me a list of sites to visit and told me to do research on Phyllodes Tumor. I went and had a lumpectomy. She has been great ever since. She put me on a 5 year follow-up. For the first 2 years she did mammograms every 6 months. She has done chest x-rays every year to check my lungs. She considers it cancer and has even called my GYN and she said it was not cancer. She said she has had patients that have had benign Phyllodes and have had it metastasis in the lung. If you are anywhere close to Tampa, Fl or can travel there she is fantastic. Sitting in her office is like sitting in your own livingroom talking to a friend. Here is a youtube she talks about what she does. https://www.youtube.com/watch?v=q08alFd5BEU and her fact page http://moffitt.org/research--clinical-trials/individual-researchers/christine-laronga-md-facs

leightidwell
Posts: 1
Joined: Sep 2014

Hi all! I'm new to this site and wanted to ask some questions about a left lung nodule that was discoverd at the er visit after haveing a ct scan. My dr called me and said it was nothing to worry about, but after reading some reviews' I'm a little concerned. It is 10cm. Should I have a second opinion? And if so by whom?

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