Low-Grade Phyllodes Tumor, what to do now?

MyHealthBodyLife

Just received word that I had a Phyllodes Tumor in my right breast, for the second time. This one is low-grade. B/c of rarity, my doctor sent for second opinion. Now waiting, and wondering what my next step should be. She mentioned procedure of shaving a small amount of tissue off from area, and even a Radical Mastectomy. A little confused, a little scared. Any advice?

roseg

Check this thread out.

http://community.breastcancer.org/ubbthr...SID=#Post514210

jgrjunque

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Just received word that I had a Phyllodes Tumor in my right breast, for the second time. This one is low-grade. B/c of rarity, my doctor sent for second opinion.

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It's good that your doctor is getting a second opinion. Phyllodes is a rare type, for sure, and the vast majority of doctors have never seen it (which means the vast majority of pathologists have never had to make the call on phyllodes or not, low-grade or high-, etc.).

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Now waiting, and wondering what my next step should be. She mentioned procedure of shaving a small amount of tissue off from area, and even a Radical Mastectomy. A little confused, a little scared. Any advice?

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I can sure understand the fear (I'm 22 months out on a bilateral mastectomy as the result of a malignant phyllodes). I certainly wouldn't rush into anything, and I certainly would do my level best to get to a major academic medical center where they've got some experience with this.

Unless there's good reason to believe that the tumor is attached to critical muscle, I can't imagine that a radical mastectomy (which removes muscle and underarm nodes) would be required. First off, phyllodes does not spread by way of the lymph nodes, so removing them for phyllodes is overkill in a big way. Second, the chest muscles are rarely involved.

The ordinary treatment for phyllodes of any ilk -- "benign," low-grade malignant or high-grade malignant -- is to remove the tumor and a wide clean margin of normal tissue. It's critical to be sure the surgeon not only gets the main tumor but any little bits that may be in the tissue around the tumor. The usual clean margin should be 1 cm or so. Failure to get a wide clean margin raises the risk of local recurrence and may even risk metastasis to other parts of the body. Most doctors these days give patients a choice between a lumpectomy (taking out the tumor and the wide margin) followed by radiation (see this study by Dr. Richard Barth) or a simple mastectomy.

Now it is possible that, if the tumor is very large or the breast is very small, the only way to get that wide clean margin might be to do a mastectomy. But a simple one, not a radical one.

Hope this helps. You might also want to pop over to the Phyllodes section of the Rare Cancer boards for more help and support. (You will have to register to get access to that section.)

Best of luck to you.

MyHealthBodyLife

Thanks for the advice! I actually just talked with my regular gyno yesterday who has been doing some extra research. It turns out the first time I had one of these removed (Nov. 2005) that my surgeon may have not cleaned the area well enough, and thus another one developed in less than a year. It worries me now, because I haven't received radiation of any kind, after either of the procedures.
I switched surgeons after the first lumpsectomy (on a gut feeling) and now my new surgeon is suggesting a follow-up procedure to remove the 1 cm area of tissue. I think this is the very least I am going to do.
I am assuming that a simple mastectomy takes less of the breast tissue away, than a radical. I have fairly small breasts to begin with (B cup) so I wouldn't be suprise if it comes to one or the other.
Question: Should I have some type of test ran to see if the tumor has moved to another area of my body. It really worries me that the entire part of the first, or second one may have not been completely removed.

Thank you so much for your help thus far. It makes me feel a little better each time I learn something new. I hope your recovery is going well, and I wish the best of health to you in the future.

jgrjunque

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Question: Should I have some type of test ran to see if the tumor has moved to another area of my body. It really worries me that the entire part of the first, or second one may have not been completely removed.

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You absolutely should have some follow-up tests. This tumor type is rare enough that there isn't a real consensus as to just what should be done and how often but, at a minimum, you should have a CT scan of the chest and abdomen and a bone scan. Most likely, they will turn up nothing, but they will provide a baseline for future scans to be compared against. Then you should have scans on some regular basis in the future, probably roughly once a year.

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Thank you so much for your help thus far. It makes me feel a little better each time I learn something new.

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Glad to help. Hope everything goes well for you.

MyHealthBodyLife

Just went for a second opinion, and was recommended a bilateral simple masectomy. It appears as if I have two more small masses forming in my left breast, just a few weeks after surgery. Really nervous because, unfortunately, I don't have tons of confidence in the doc's I have been seeing. I live in a small town in the midwest, and the new doc said he has only seen one PT before. Sheesh! Would you get your car fixed at a place that has only worked on one car??? You ladies on here have provided more sound advice and support and I thank you so much!

roseg

Well, I think your Doc has the right idea. Take it out!

They may not be too fancy but the cure seems reasonable.

LoisO

I contacted Dr. Barth after reading the link on this forum.  He has completed his study and will be publishing it, hopefully, soon.  He studied 48 cases where the tumor was removed, and pt. received 28 weeks radiation therapy. The study started in 1997.  So far there have been no recurrences in the cases in the study.  Just the fact that it took 10 years to find 48 cases to enroll in the study shows you how rare Phyllodes is.  He said there are 500 cases a year in the U.S.  So if your doctor is not up to date on this disease, you may have to do some research and seek out a consult at a teaching hospital.

twirlgirl

I also had a low grade PT, taken out by a small town midwest surgeon who had only seen 1 other in a 24-year career. This was 7 years ago now and he didn't do his research, didn't take margins. Fast forward to this past fall, I had it come back in the same place, a higher-grade PT now and surprise! A DCIS mass inside. I should not have trusted my surgeon and if I could go back, would have driven to Chicago or Mayo for docs who have the experience with these.

Now I live in a big town with fantastic cancer centers and my surgeon has lots of experince with PT...a medical school and I have gotten excellent care. Fingers crossed this is my last round with all BC...rare and otherwise!

Feel free to send me a message if you want to chat or need some support.

vangiesalamatsy

hello. I just had an unexpected total mastectomey left last april 10, 2008 .  after a month the final result from the patholgist was released and it stated there that its a low grade phyllodes tumor. What does it really mean?  Is it a cancer? or just a tumor? The medications i have taken is only painkillers and my surgeon did not require me of any chemotheraphy or any other anti cancer drugs.. and will there be any recurrence? as i will be monitored monthly in 1 to 2 years time..Im a little shy to ask my surgeon but im having some questions in my mind.   please advise.. thank you very much and god bless..  Vangie

tampaphyllodes14

I just received diagjnosis of low grade phyllodes tumor.  Just learnedI will need to have a wider margin removed per review by tumor board. I did have an excission recently.  Would like to chat with other women diagnosed with phyllodes since this is so rare and what they have done and how they are doing after surgery.   

livinggood83

Hello, I would like to talk to someone with a malignant phyllode tumor.  I had a lumpectomy Feb 17.  Margins are clean. 

karen9516

MyHealth BodyLife, I have had 3 open biopsies. One was a benign fibroadenoma and one was a benign Phyllodes tumor and the third was to get clear margins. The Phyllodes tumor was 9 cm and on the ultrasound it said it was 2cm. Great technology huh? She got in there and it was huge.  She didn't want to take my whole breast and have me wake up without it. That biopsy showed ALH and it was then I decided to do the PBM. I had a skin sparing nipple sparing and I have done really well so far. I am having my exchange tomorrow. YEA!!! I had really dense breasts and many fibrous cysts. I didn't want to watch and wait. A phyllodes tumor if it is benign wont turn cancerous but it usually comes back. From what I have read a malignant Phyllodes tumor will never become metastatic but can keep coming back too.These are not cancer and never become spread outside the breast. they are very rare esp the metastic ones.

karen9516

I think that they do radiation sometimes if they are metastatic but from all the articles I researched it isn't cancer and it doesn't spread even if it is malignant.

jodiphyllodesinva

I too, like tampaphyllodes14 just got a diagnosis of low-grade phyllodes tumor...mine in left breat about 2 cm.  Had a lumpectomy...but need to go back in for margins that were not taken during first surgery.  I have an appointment with an oncologist before having the surgeon go back in.  Also scheduled for an MRI before next surgery.  Any other advice?

MaineCoonKitty

Livingood8:

I had a high grade malignant Phyllodes tumor in my left breast and had a simple mastectomy just 3 wks ago.  I live pretty close to you in Ohio - Mt Vernon.  It came on pretty fast - within a few months, my left breast and the tumor that were removed weighed 22 lbs!  I'm currently hooked up to a wound vac and the wound is closing nicely, but I may still need a skin graft to "pretty up" the incision.  I got completely clear margins, even with that large of a tumor.  My breast surgeon and oncologist believe that my lymph nodes are not involved, just irritated and swollen from the infection and bleeding from the tumor and are receding on their own.  I'll have another CAT scan tomorrow to see if that's still the case, but the surgeon did not even feel the need to remove a sentinel node during my surgery.  Email me if you want the particulars about my surgeon and the details of my surgery.  The good news is that Phyllodes does not usually involve the lymph nodes and that's a good thing!

jodiphyllodesinva

Tampaphyllodes14:

How are you doing?  How did the re-excision go?  You haven't written in a while? I hope you are feeling better.

tulip37

Hello jodiphyllodesinva and tampaphyllode14 and the other women concerned !

I've been diagnostised with a benign phyllod tumor on the biopsy, but I must see the surgeon the end of august. The doctor told me that that the biopsy isn't very reliable, that they may find a different result when they analyse the tumor they will have removed. Please, I will be so grateful if you could answer me and tell me about your own tumor

Excuse my writing, I'm french

Looking forward to reading you

Take care

Tulip37

agatha24

Hi Tulip37, How did it go after seeing the surgeon?  I had a very small (.5cm) benign phyllodes tumor removed from my left breast in April 2009.  I am due to return in October (6 mos later) for a follow-up ultrasound.  There was only a 1mm margin on one side from where the tumor was removed.  I have all sorts of strange, 'messed up' feelings (pressure, condensed charlie horses, piercing pain, itchiness, slight nipple burning) that come and go in my left breast and there is a new dense mass further left from where the tumor was now.  I also have a hard, bony protrusion further to the right and near my collar bone... but maybe I'm just getting paranoid! I am concerned. Something is DEFINITELY different in my left breast.  I feel slightly frustrated because I initiated the visit to the Dr before the surgury in April - I felt pressure and weird feelings and the small tumor.  But I felt because I am relatively young (37 at the time) and in excellent health that medical people looked at me as skeptical and rushed me along.  But then they found the phyllodes.  Anyway, nothing for me to do but wait until October.  I wonder if any other people with phyllodes tumors feel anything?  The things I feel drive me a little nuts because they are constant reminders.  Hope all went well for you. 

heatherrae

Hi, My name is Heather. I am 20 years old and have just been dignost with two Phyllodes Tumors in my right breast. I am scared to death too! But, I know what you are going through. Its funny but I was relived when I saw your post.. my doctor said that this was really rare and with that I thought I would never be able to find someone with this same problem. If you ever need help/ advice/ or anything.. PLEASE feel free to email me at hrdyer1@yahoo.com.  My favorite quote in life is "If the big man didn't think you could deal with your hand.. he would of never given it to you!" All the best! -Heather

Sumi_teddy

hello.my mother is having a lump in UIQ at 2'o clock attached to the pectoralis muscle. From Trucut biopsy doctor said she's having a rare type of a cancer . Once the pathology report it says ' possibilities are fibromatosis , phyllode, low grade sarcoma '. Also doctor said it its a low grade . Now waiting for the excision biopsy result .

Trucut biopsy reveals she's having fascicles of spindle cells with bland nuclei extending from strophic skeletal muscles . No mitosis , necrosis or epithelial islands. CK7 negative and Vimentin positive

Is she having a tendency of getting a local recurrence of a distant metastasis ??

djmammo

Phyllodes tumors of the breast: a consensus review