New Phyllodes diagnosis

Time_hope

I found out today that the lump I had removed is a malignant phyllodes tumor. The surgeon isn't really quite sure how they are going to treat it yet. I had a lumpectomy last month, but they didn't do the full 1cm border removal because they thought they were working with a fibroadenoma so we will probably have to go back in at some point.

If you have been through this, I would love to hear from you. I could use some support right now.

Beesy_The_Other_One

Time_Hope, I'm thinking you won't find too many fellow Phyllodes tumor friends, as they are rare. I had one in 1997 when I was 35. At that time, my major cancer center only saw 2-3 a year! My Phyllodes was considered "borderline," but at that time, wide excision was the standard of care, which in my case ended up being about half the breast. Are you being treated at a National Cancer Institute Hospital? I was then and am now, but back in 1997 the Internet was in its infancy so it wasn't much help to me, but it was clear I should have a few pathologists check my slides. My second opinion knew a pathologist with a considerable amount of experience with Phyllodes tumors so he checked my slides and agreed with the original pathologist. By the way, I'd had a needle biopsy on the Fibroadenoma (PT's are usually found in Giant Fibroadenomas--mine grew fast and large) and they missed the Phyllodes cells. It wasn't until they removed the whole thing that they realized what was going on and then later I had the wide excision.

If you were to search the word Phyllodes (sometimes spelled Phylloides or called by the full name Cystosarcoma Phyllodes), you will find others should you want to PM them--I know there are a few on here. You'd want to note whether they are currently active, also, as in when they were "last seen" here on the forum, because they may no longer be active. I'm happy to answer any questions I can via PM also, of course.

Best to you,

Beesy

Time_hope

Thank you for the response, Beesy.

Basil77

Time_Hope - I was diagnosed in April of this yearwith an 8 cm Borderline PT. I detected a palpable mass in January which grew very quickly. Core needle biopsy in late March confirmed Phyllodes, but it looked benign. My surgeon did an enucleation, hoping full pathology would confirm benign and we could just do close surveillance for a few years. The path came back borderline, and based on the size of my breast, relative to the tumor, mastectomy was the only way to get the margin needed. I had a unilateral, nipple-sparing mastectomy just over two weeks ago, with direct to implant reconstruction. No radiation recommended for BLPT.

Beesy is right that phyllodes are very rare - I've not connected directly with anyone with the same diagnosis yet. This is all super fresh for me, and I'm happy to share anything you'd like to know. One of the hard parts of phyllodes is the invisibility - it's not even an option on the list of diagnoses in the user profile! There's also not a lot of research data or specific info or support on most of the advocacy and support org sites. I'm very happy to share the resources that were most useful to me in making my treatment and reconstruction decisions.

ddfair

Hi Time Hope,

Sorry to hear that you you are in this group. I've had 4 phyloides tumours starting in 1995. Began as borderline and progressed to malignant over the years. Last reoccurance was 2004. Also had DCIS and LCIS within the tumours. Had 39 radiation treatments. I think I've finally killed Phyl as we say. Happy to answer any questions you have. Check out the other phyloides threads here , they are older but still have good info.

De

penny22

Hi, Time Hope! I’m a 36-year-old woman who just (3 weeks ago) completed 25 radiation sessions for a borderline phyllodes tumor in my left breast. I’m really sorry you’re going through this, especially because, to echo the other responses, it’s so damn rare.

In a nutshell, my treatment went like this, starting in February of this year: found the lump by feeling my breast, went for ultrasound in urgent care, sent to mammogram, sent to core needle biopsy, diagnosed with borderline PT, sent to breast surgeon, underwent wide excisional biopsy with 1cm margin removal, biopsy dx confirmed and margins were clean. After this, my surgeon explained to me that because these tumors are so rare, there’s never been a proper clinical trial to reach consensus on treatment, but that research suggests that radiation treatments can reduce the recurrence rate significantly for borderline malignancies. I met with the radiation oncologist, and received 25 rounds of radiation on my left breast only, in a prone position (meaning my boob was hanging down and away from my body) so that there was no chance of the radiation affecting my bones or organs at all. I’m lucky I had a wonderful hospital and kind, empathetic doctors and nurses and radiation technicians so I encourage you to “shop” around if you can to find a place that feels good to you.

I don’t know what your doctor has explained to you, but from what I understand, these tumors very rarely metastasize, so I hope that can take a bit of stress off your mind while you wait this process out.

As for radiation, the physical effects were significant (I’m still feeling the fatigue though it’s not debilitating), however the mental and emotional effects can be much more so. I’d encourage you to find a therapist if you can or want to to help you sort through all of your emotions and thoughts. It’s a lot!!!! Best of luck to you. I’d be happy to keep talking if you find it helpful. :

littleone9699

Good morning! I was just notified yesterday that my pathology results from my surgery Friday show it is a phyllodes tumor. I felt a lump on July 15 and after a mammogram and ultrasound, they did a biopsy on July 22. It was determined from the biopsy that I had several fibroadenomas. They suggested come back for another mammogram/ultrasound in 6 months. I asked about surgery to remove them, I think the thought of them just bothered me. I went for my surgical consult August 12 and with my new job and other people being off, I finally scheduled surgery for Sept. 27. It was done outpatient and after it was over the doctor told me it had grown in the time he had last seen me and that he didn't think it was a fibroadenoma, but a phyllodes tumor. He was right! They were not sure on whether it was benign or malignant at this point and sent it to the pathologists at the Mayo Clinic; he expects to hear back from them in the next 5 days, but his recommendation at this point is additional surgery to get clear margins (although he said he would not do it until he had heard back from Mayo). I'm trying to educate myself as much as possible as to treatments before I go any further. I am very small chested and I wonder if a mastectomy might be in my future. I live in rural area and also wonder if going to a larger hospital might be a good idea, at least for a second opinion? I'm curious to see what Mayo has to say.

I appreciate all of your posts and hope I can connect and be supportive!

ddfair

Hello Littleone,

So sorry you find yourself needing this site, but glad you found us.

A second opinion is always a good thing. With a phyloides tumour it's pretty standard. The usual next treatment step would be a re-excision surgery to obtain wide margins. I understand your feelings about being small chested and getting clear margins. I was very small too, like 38 almost an A cup. However, I still had 6 lumpectomies before getting a mastectomy. So don't resign yourself to a mastectomy just yet, unless that's what you truly want.

Make sure to read all the information here on this site. Knowledge is power.

De

PTAmomTX

Hi! New Phyllodes here. They think the part they tested is benign, but they found more on my MRI that they didn’t see on the US or Mammogram. Combined with a really bad family history and variant detected, I’ve decided to go ahead with a BMX. I will end up there anyway, might as well get it over with. I’m having surgery on 12/16. They are going to send everything to a pathologist once they get it out, then we will see if I need radiation. I’ll be doing reconstruction via the implant route, and will be removing the nipples. Right now, I’m trying to focus on what I can control, like packing for the hospital and re

ddfair

Hello,

Sorry you find yourself in this group. Did you have some type of needle biopsy? Were you offered the option of a lumpectomy instead of a mastectomy? I would highly recommend getting a second opinion before making a final choice. Implants rarely last more than 10 years before you have to replace them. Mammograms can be difficult with implants too. Just some things to consider from someone who has been down this road a few times.

De

Beesy_The_Other_One

Brashich, I'm with De wishing you did not find yourself here. My breast surgeon at MD Anderson in Houston always says they only see two cases a year. That statistic always amazes me.

I had my Phyllodes tumor in 1997 and lost half a breast then at 35 because standard of care was wide excision. Then in 2018 I was diagnosed with Invasive Ductal Cancer in the other breast and I've wondered more than a few times whether I should have done the BMX back in 1997, considering my mother had already been diagnosed and treated (and was still fearing for her life--though all these years later she is very much alive, despite her early and frequent suggestions that the cancer would kill her).

I never worried that the Phyllodes would come back and kill me, but I can't say the same for the IDC. I understand completely why you've made your decision and hope you can get this behind you and move on.

PTAmomTX

I had my BMX on Monday and got home from the hospital today. I have huge family cancer history (all women on mother’s side) and a genetic variant that the BMX was the way to go for me. Plus, my husband’s job moves us around every 2-3 years, usually overseas, so I am really happy that this happened while we were in the US and not elsewhere. Getting this albatross off my neck is wonderful.

Right now I’m in pain, but this too shall pass, right