phyllodes tumor pain?

[maryjane37]

I am 42, and have had a phylodes tumor in my right breast since I was 21. I have had two biopsies on it - fine needle at 20, and core at 34 (both neg). and annual mammograms/exams since 34. Other than it's large size (10cm - and it hasn't changed size in all those years), it has never bothered me. I have had different opinions over the years as to whether I should have it removed or not - some say it would disfigure my breast, one GYN told me "she doesn't like to cut into them" ?

A few months ago, my nipple started to itch. Just mildly, and it was also tender and irritated by my bra.  Now I am having pain in that breast, and it's getting severe at times.  It seems hot and swollen to me, but no redness, rash, discoloration or puckering, no nipple changes. My mammo indicated no changes (but a lump in the r side, whcih I am having biopsied later this week). My GYN referred me to a surgeon, who said it was probably cyclic changes and I am blaming the tumor for it.  I never had these pains before, and they worry me a LOT.  It hurts all the way over my shoulder, armpit, and side, severely at times.  My GYN thought maybe mastitis, but my kids are grown and I have never breastfed.

Can phyllodes become painful>? The surgeon said they can sometimes degenerate to cancer, but it's rare. He didn't seem concerned, but WAS concerned with the new lump.  The radiologist said maybe the new one may also be a phyloodes.

I am very scared and in a lot of pain. Please help.

[hopefultwo]

A related discussion, malignant phyllodes tumor was started.

[hels]

I had a malignant phyloddes tumor removed. It turned out to be malignant and  then I had a large amount of tissue removed on the second surgery. There was talk of removing the breast.  At first the surgeon said he thought it was a fibroid, it resembled one. Then he set me up for radiation and then I got a second o***ion and the findings were that this kind of tumor does not react to radiation or chemo.  That was four years ago and since then I have been fine. I have regular mammos but less as time goes on.  At first every little lump I was running to get tested, but I am calmer now and trust that I will know when, and if, it comes back.  It felt like it was on a stalk like a little cauliflower or broccoli, much different from the other cysts I get all the time.  ALWAYS get a second o***ion.  It tends to come back to the lungs, or so my medical informants told me. Good Luck.
hels

[hels]

I had a malignant phyloddes tumor removed. It turned out to be malignant and  then I had a large amount of tissue removed on the second surgery. There was talk of removing the breast.  At first the surgeon said he thought it was a fibroid, it resembled one. Then he set me up for radiation and then I got a second o***ion and the findings were that this kind of tumor does not react to radiation or chemo.  That was four years ago and since then I have been fine. I have regular mammos but less as time goes on.  At first every little lump I was running to get tested, but I am calmer now and trust that I will know when, and if, it comes back.  It felt like it was on a stalk like a little cauliflower or broccoli, much different from the other cysts I get all the time.  ALWAYS get a second o***ion.  It tends to come back to the lungs, or so my medical informants told me. Good Luck.
hels

[wickedwaters]

hi all (waving)  New phyllodes here (malignant)  so glad that I found you.  I just had a lumpectomy and now they want to do a mastectomy.  The lump popped up quickly, aspiration showed negative.  My instinct was to have it removed, due to the fast growth.  The pathology came back positive.  I am currently in the process of discussing a radiation/lumpectomy clinical trial with a hospital in New Hampshire before making the decision to have the mastectomy.  I am still in the panic and shock stage so forgive me if this post is not as coherant as it should be.  I am so glad that I found you all.  My e-mail is ***@**** if anyone wishes to write.

[nicknameinuse]

Two years ago I had a lump removed from my L breast -- the path report was not definitive as to whether it was a phyllodes tumor or fibroadenoma and the surgeon who performed the lumpectomy did not get clean margins.  Another surgeon went back in in order to get clean margins and still there was no certainty as to what it was but the doctors were leaning more toward fibroadenoma.  I have been followed for the past two years and in January mammogram and  u/s revealed "something" in the same breast which the radiologist concluded was a "lymph node".  I returned in July of this year and again, something was noted in the L breast but this time it was characterized as a cyst.  I have noticed that my breasts (both of them) are increasingly sore -- sometimes for two to three weeks before getting menstruating.  In addition to being increasingly nervous about the "cyst" that was initially thought to be a "node" I am curious as to whether the pain I am experiencing is a symptom I should be concerned about.  The pain I experience is bilateral and affects my nipples, as well as the surrounding areas (breast, armpits).

[maryjane37]

I'm sorry for the excessive posting - I meant to say that the phyllodes in the left breast, and the new lump is in the Right.  Just to clarify and to assure you all I am not a total dingbat. :)

[maryjane37]

Thank you so much for your fast response.  I have a tough time finding anything but very basic info on phyllodes tumors.  Even my surgeon, who has over 20 years of experience and seems to be very well respected, told me he has only seen three of them during his entire medical career.

Did you mean that after removing the tumor that it has a high reccurance rate in the same breast or did you mean high reccurance in the other breast?  I would love to find the new spot (can't be felt, only found by mammo and ultrasound) is a harmless phyllodes like the other, but I guess only the biopsy will tell.

A general question to all - I am having a Mammotome biopsy Thurs. - any thoughts, experiences, advice truly appreciated.  I have to drive myself home - 35 miles, afterwards, too - doable? Thanks!

[surgeon]

It's been my practice to remove phyllodes tumors when first found, because they often grow and become more difficult to remove. However, since yours has been stable for so long, and because recurrance is more likely with the larger size, I guess a good case can be made for leaving it alone. You seem to be describing pain throughout the breast, and not just in the tumor area; so I'd think the tumor has nothing to do with your pain. It's more likely due to fibrocystic change; as menopause approaches some women experience increased breast pain, and it may not always be in both breasts. It sounds like the right thing to pursue the newly found lesion. Usually generalized breast pain does not denote cancer. Some things that can help include taking vitamin E, eliminating caffeine and caffeine-like products, using good support, even at night. If there were a reason to remove the original tumor, even a pretty large area can be removed with minimal cosmetic impact: the old methods of re-approximating the edges of breast tissue, and draining the area have given way to not closing the internal defect, not placing a drain, and letting the area fill in. It often gets pretty black and blue for awhile, but usually heals without much impact on shape.

[CCF-RN,MSN-rf]

Dear MaryJane37:  Phyllodes tumors are rare breast tumors that arise from the stroma (connective tissue) of the breast, in contrast to carcinomas which develop in the ducts or lobules. Phyllodes tumors are usually benign, but on rare occasions have been found to be malignant (cancerous with the potential to metastasize). These occurrences are extremely rare, with fewer than 10 women dying each year as a result of this breast cancer.

Phyllodes tumors do not respond to hormonal therapy and are less likely to respond to other breast cancer treatments such as chemotherapy or radiation therapy. As a result, benign phyllodes tumors are treated by removing the mass and a narrow margin of the surrounding breast tissue. Malignant phyllodes tumors are removed in the same manner with a wider margin of breast tissue, or by mastectomy.

Certainly, your new symptoms may or may not be related to the phyllodes.  Phyllodes tumors are not known to be especially painful.  Our recommendation is that you see a breast specialist.