Phyllodes

Sorry to hear that.   I too face a similar problem.  My mammogram and ultrsound says probably benign "complex fibroadenoma" on my left breast, inner mid/upper quadrant, not near areola.   it grew rather fast, more than doubling in the last 3 months.  and it's now 3cm across.   My surgeon offered me 2 choices:

1. core biopsy with optional lumpectomy if results are bad

2. excisional biopsy (no margins taken) with optional lumpectomy (if results are bad)

 Personally i'd prefer a single lumpectomy, since i'm pretty sure i want excision, and don't want 2 operations in the worst case.   but the surgeon seems very unwilling to do so.

Oh well.   Mind telling me how fast does your tumor grow?  how big they are currently and in the past and how long have you noticed them etc.?  And any other information?

The problem with phyllodes is that it's such a rare tumor (1% of all malignant breast tumors), very few docs have seen a lot of them and specialize them.   very few drug companies would customize drugs/therapy to target them.   That's why chemo/radiation doesn't work on them, and death rate quite high for malign tumors.   So patients need to find each other and share information, like growth rate, size of tumor, location, pathology report.

 Also, remember, if you had your tumor excised, remember to ask how you can access the left-over samples.   so in future if more genetic results are available, tests can be done on them.

I just created a google group

 http://groups.google.com/group/phyllodes-patients

Ladies,

I hope you are still out there somewhere. I was also just diagnosed with this type of cancer and am terrified. I have had this lump for probably a year. Just figured it was another cyst and I have always had a lot of cysts in my breasts. I finally decided to ask for a needle aspiration, again thinking it was a cyst that was growing. I waited a month because the receptionist at UNC said my insurance wouldn't cover the mammogram unless it was one year from the last one, so I made the exam for exactly 1 year from the last mammogram. After having the mammogram and an ultrasound, it was determined that I had some kind of tumor. Doctor said it was most likely a fibroid adonoma. They did a needle biopsy that came back atypia, so he did an excision biopsy and this came back as cancer. I'll be going back on Friday for 2nd surgery to widen the margins. 

After reading many articles, forums, etc. I'm now more afraid of it coming back and that this might be fatal. Am wondering what's happened to the two of you after one year. I'm hoping you are both well and have not had any recurrance. 

Mariah,

My surgeon also thought I just had a fibroadonoma, and when they did the needle biopsy they saw some cells that were aytpia. He took the tumor out and had the whole thing biopsied and that's when it was determined it was Phyllodes. If that's what you have, welcome to being literally one in a million. My surgeon then had to go back in for a second surgery to widen the margins. It was frustrating, but glad I had all of this done and the good news in my case at least was that it was a low grade phyllodes, so it hadn't spread anywhere and they were able to get good margins, so no radiation. By the way, chemo is supposedly not effective for Phyllodes. You may also want to look at the rare cancer website and search for Phyllodes as there are many more folks over on that forum than this one. 

Best of luck to you! I hope for your sake that it is not Phyllodes, but if it is, we are here to support you. 

Amy, Welcome to the very special Phyllodes club. We are each one in a million! There is some good information you can find on the rare cancer forum, http://www.rare-cancer.org and look for Phyllodes.

The only doctor I know who has done some studies on this is Dr. Barth at the University of Dartmouth-Hitchcock in New Hampshire, here's the URL to the study: http://cancer.dartmouth.edu/pf/clinical_trial_CTG/D0929/

Seems like you have the right attitude. I had my second surgery to widen the margins in March and try to keep myself busy and occupied and have the same feelings as you do. This is over now. Time to move on. However, no reason not to be more careful about diet, exercise and generally keeping the odds in our favor!

Hi ladies and phyllodes tumor sisters. I am new to this forum and desperate for info. I was diagnosed with a PT after a lumpectomy when I was 23 years old. It was benign and, of course, the surgeon thought it was a fibro and didn't take enough margin. After many years of follow up, scares, etc. I thought I was safe. Last week, 11 years later I found another lump in my other breast. Went quickly for an ultrasound and met with the surgeon within 24 hours. Turns out he suspects it is another PT, and doesn't think it is self-contained.

I am 34 years old with 2 kids - and absolutely terrified. This one is already 3.5 by 4.75 cm after 3 weeks of notice and isn't the perfectly round mass that I had before. He put in the surgery orders as "cancer" to quote "make the schedulers jump," so I suspect I will get scheduled tomorrow for this week. He said that at a minimum, the scar will be ~6 inches long, but that the disfigurement should be minimal.

 My fear is that it is cancer - a cancer no one really seems to know anything about or really care about since it is so rare. I am trying to stay positive, but the truth of the matter is that I am 34 years old and I adore my life. Please - any support or information would be very helpful. All the articles I can find are very contradicting.

Hi Everyone,

I'm looking at all the phyllodes posts on this site, I'm scheduled to meet with my surgeon next Monday, 4/16 after my ultrasound biopsy results showed "fibroadenoma versus phyllodes tumor".

Thank you for sharing your stories.  I'm very frightened.  

I was recently diagnosed with a borderline phyllodes tumor... they did an excisional biopsy, it turned out to be borderline, so now I need to go back in to have more taken out and have the option of radiation.... I am curious if anyone has had radiation for a phyllodes before, and their experience on that.  I think Phyllodes is difficult to be diagnosed with because it is hard to explain to friends and family as well.  It just this whole ball of uncertainty!  My next surgery is scheduled for mid June.  My surgeon did say, because we are doing two surgeries there is more likely to be scarring and have the breast look irregular... Do people often get reconstruction for a phyllodes?  I am lucky the tumor was very close to my nipple, so it was easy to detect, and the surgeon can cut in a half moon shape around the nipple to access everything, which leaves a little less scarring!  I was suprised after the first surgery that my breast actually looked pretty good.  I would also love to hear if anyone has had the phyllodes tumor reoccur.  After having been through the surgery once, the second one doesnt seem as scary.  If anything now I feel like I want as much removed as possible, as soon as possible.  I did have a month or so to accept that I may completely lose the appearance of my breasts though.  I find the tumor at the end of february and it was around 4cm.  They started with an ultrasound, a biopsy, then the excisional biopsy, and now are going in to remove more tissue.  The first biopsy did say it was benign, or that it could be a fibroadenoma, so I was expecting good news.  I got pregnant in mid april, and unfortuanately lost the baby a few days ago... however I am wondering if the hornmones from it had anything to do with the results changing, or if it the first biopsy is commonly wrong.  I'm glad this thread has started .

Hello! I am 23 years old and I have had a lump in my left breast for about 6 months. I had a baby about 5 months ago and have been breastfeeding and I assumed that the lump was related to lactation until it started to grow. I had an ultrasound and the doctors said they had never seen anything like it and so they sent me to a specialist. I saw him today and he did a core needle biopsy but he says he suspects phyllodes based on the way that the tumor looks in the ultrasound. It is a solid mass with tiny cysts throughout it about 3cm wide. It is painless and moves a little bit. The two things that looks weird about it to them is the fact that it is part solid and part cystic and that part of it has well defined edges and part of it doesn't. The original radiologist who saw me said she had no idea and got another doctor and he said it was the most unsual thing he had ever seen. Then the specialist today mentioned phyllodes but I am pretty young for it. Does this sound like phyllodes? He is expecting the biopsy reports monday or tuesday but the waiting is driving me crazy. Is there anything I should know?

@nlv23

you're not too young to have a phyllodes tumor. I had a lumpectomy when I was 20 and it was a phyllodes tumor that was turning malignant. 6months later I had more growing but oj both breasts and i recently had a double mastecomy so i wouodnt have to deal with anymore internal scarring than i needed (turns out i was a high risk when i got the patjology results a week after surgery).

Anyway, that does sound unusual, however I'm not an expert. Have they done a biopsy on you yet to know if it is a phyllodes? I never had pain when I had the phyllodes but cysts can cause some discomfort or pain. So it could be part phyllodes and part cyst (it that's possible. Good luck!!

@ Kathyhong

Thanks for your reply. I'm large framed and a bit overweight but i only have small B cups.

I will be talking with my sugeon about having both taken, I brought it up, he didn't, my sister asked me first...i don't want that but it might be the best thing to do. I'm even leaning against recon right now, even after talking with the PS. Both surgeons really think i should do recon but i read that if you are over a BMI of 30 it's risky. I've been a moderate smoker for a long time too so i'm afraid of being under for a long period of time.

Are implants with expanders really a 4 month long process? How is it coming along for you?

@TessaMe:
I don't know about the BMI part, but I can understand the smoking part and being under for too long.
Depends my surgeon says about 3-4 months because the breast have to form a scar capsule to hold the implants in place for the TE and implant exchange.
It's coming okay for me now. My exchange is in December. It works out well since I have classes now and I can do it during winter break and back to school in spring. I think recon. would be a good thing for all women, no matter what age we are, we do have some degree of insecurity about losing our breasts.

@Betsy-
I don't think you're alone about it reoccuring. I had my lumpectomy at 19 on my right breast and six mths later I found more on my left and right. So I skipped the biopsy and did a bmx. My pathology report said it was baby benign tumors this time. I'll be 22 this year. Why don't you consider of having a bmx instead??

Hi x2011,

I do not know much about phyllodes, but I know it is rare and occurs more in young people? I really hope and I'll say it pray today that your biopsy goes really well and they can just take care of everything. I hope your mom or a friend or sister can go with you. Take care of yourself and I am thinking of you!

Love, Amy Lynn

Hope you get good news. There is a really good, very active group of us Phyllodes folks on Facebook. Just type in Phyllodes to find it. Your membership is confidential. I have found it a good group to be in.

Hi, ladies!  Does anyone still post here?  I had a Borderline Phyllodes tumor removed by WLE (2nd surgery for margins) three years ago.  Now I'm back with Invasive Ductal Carcinoma with significant node involvement.  Totally different experience this time . . . going from ridiculously rare to ridiculously common!

Hi, Annie!  Phyllodes seem to crop up in young women but, fortunately, they are easily taken care of if you get to them before they get out of hand.  Sounds like yours was caught good and early!  I, too, had shooting pains from the incision for a few weeks or even months.  It takes a lot longer to heal completely than I realized!  My surgeon told me the other day that it will be a full year before my body is fully healed from the mastectomy I had in September (fortunately it has nothing to do with the phyllodes!).