Phyllodes tumor

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.

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

Cp17 said:

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.

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.

TinaV123 said:

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!

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.

hollyhock79 said:

Mother diagnosed and now confused.
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

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.

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!

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

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. 

katejo123 said:

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

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

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

ampaz001 said:

Hello:) Email

Hello!

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

Ashley

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

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

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

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?

I was just diagnosed with a Benign Phyllodes tumor. I had a needle biospy done, but I was told surgery would be needed. So I have been reading all of this and now I don't know what to do. I have not spoke to the surgeon yet, so any suggestion? Should I go on and press for a mastectomy?