Benign Phyllodes Tumor, Facing Mastectomy

RockyStorm

Hi everyone,

I'm 30 years old and recently diagnosed with a benign phyllodes tumor in my left breast (ultrasound measured it at 7cm by 9cm large). I previously had issues with fibroadenomas in this breast. Had three previous surgeries to remove the fibroadenomas (2011, 2013, 2014). After my last surgery in December, 2014 I thought the regrowth was just scar tissue, which is typical, but by March when my partner and I realized that my breast wasn't returning to its normal shape (and I say this lightly because after having the previous surgeries, my breast shape had already become distorted). Finally saw a specialist in June and it was suspected that either my previous fibroadenomas had been misdiagnosed, or this new development was a phyllodes tumor (which was confirmed after having an ultrasound, and a core needle biopsy). Because of the size and location of the tumor (it rests right behind my nipple, and I can not only see how painfully lumpy, swollen, and distorted my breast is, but I am also able to feel the lump poking out of the bottom of my breast as well). Needless to say the pain I feel when doing simple activities like hitting potholes, exercising, bending down to tie my shoes, etc. just brings on a whole other level of anxiety. The recommendation from my doc is a mastectomy because of how aggressively this thing has grown, and the likelihood that it will grow back if more aggressive action isn't taken. I am also planning reconstruction as well. I guess I'm just looking for support or advice from anyone who has been through anything remotely similar. I feel pain, embarassment, anxiety, even anger at times, but I also sometimes feel as thought I don't have a right to be upset because thankfully this is benign, but the mixed feelings can't be denied.

Any encouraging words or advice?

ddfair

Oh Rocky! I really feel for you:(  You are so young to have to deal with this. Sounds like it is VERY aggressive.

As someone who's had 4 malignant phyllodes tumors I can offer some advice.

First make sure your tumor is sent for expert pathology by more than one pathologist. These tumors are very tricky to grade.

Second, be prepared that most people won't understand why a benign tumor would need a mastectomy. So gather your supporters around you now and educate them so they can deal with the busybodies.

Has your medical team said anything about radiation?

Feel free to ask anything.

De

 

RockyStorm

Thanks for your reply DD! Your advice is very helpful. I think I will definitely look into your first suggestion, especially considering the trickiness of these types of tumors. I have started gathering, and will continue to gather my little support system. I tend to be a very private person and so far I've filled my mom in, and she of course has filled in other family members who have already reached out with their support and encouragement.

No real mention of radiation thus far. At my last visit when I found out the diagnosis, my doctor briefly mentioned that it may be a possibility, but honestly I think I kind of went into a sort of shock after he said mastectomy that I kind of zoned out. But now that I've accepted the situation for what it is, I think I'm in a better state of mind to have that conversation again. I definitely plan to ask this at my next follow up.

You don't know how helpful your post has been.

Question: you said you've had 4 malignant phyllodes tumors. I'm so sorry to hear that. What was your experience like as far as treatment, surgery, radiation?

ddfair

Rocky,

So glad to hear you have begun to process all of this and rally the troops for support.

As to your questions about my treatments, I had multiple lumpectomies, 6 of them, then a mastectomy when there wasn't enough tissue left to get wide margins. Did not like being uneven so I had other breast removed a year later. Also had radiation.

I guess you know these tumors like to come back again and again. They are like weeds, only need 1tiny cell left behind to regrow in no time. For that reason, I would wait at least a year before having any reconstruction. I would also think carefully about any type of implant. At best they last 10 years. Do you want to have surgery again at 40 years old, then 50, 60 , etc? I had implants before cancer. I can tell you that having them put in and having them removed was WAY more painful than a mastectomy. The recovery was way longer too!!

JBird06

Hi Rocky!

Sorry to have found you so late! I was diagnosed with a malignant 9cm phyllodes last June and had to do a mastectomy because of the size. I was 30 at the time and 27 weeks pregnant at diagnosis. I feel those same feelings because I watch others go through more treatment for other types of breast cancer, but when you are talking about cutting off a body part you have a right to feel all kinds of feelings!

I had my first mastectomy in July of last year, and my second in April. I just completed my reconstruction a week ago! It's a hard road no matter how you look at it, but it feels good to know I won't have to deal with the tumors again! Radiation was a choice I was given, but after much thought and prayer I decided not to do it and my doctors supported that decision because radiation is not proven to have much effect on phyllodes tumors. Also my recurrence chances are about 15%, and radiation would have only knocked it down to about 12%...wasn't enough margin for my liking. You also cannot radiate the same area twice so with radiation being my frontline of defence for recurrence I'm hanging on to it.

Hope you are doing well! Let me know if you have any questions!

Jenn

Moderators

Dear JBird06, Welcome to the BCO community and thank you for sharing your story. We hope that you will stay connected with this caring group of others who share the experiences and knowledge that comes with a breast cancer diagnosis. We look forward to hearing more from you. The Mods

RockyStorm

I know it's been a while and I first want to thank everyone again for taking the time to have a dialogue with me about everything that's been going on. I wish I could say that things are better than ever, but unfortunately that's not the case. I really wish I had not been so impatient and had taken your advice DD, with regard to waiting for reconstruction. I had a nipple delay/exploration in December with the hopes of keeping my left nipple after the mastectomy, which went well. I had my mastectomy the first full week in January along with a DIEP reconstruction. My initial pathology report from my first visit, as well as the results of the sample taken from my nipple delay were benign. Good sign right? Well, fast forward and it turns out that this tricky tumor had something under its sleeve. Turns out that even after removing my breast with wide margins of healthy tissue, the final pathology report revealed that the tumor is malignant, and the final size at removal was 13 cm. I'm also faced with full nipple removal/loss, as well as chemo and radiation. To be honest I am terrified. I had consults with a radiologist and chemo doctor earlier this week. I was feeling pretty hopeful after the consult with the radiologist, but it was the consult with the chemo doctor that floored me.

For anyone who is dealing with/has dealt with a malignant phyllodes tumor and treatment...I can only assume that you know what my upcoming battle looks like. I was told that even with an aggressive treatment plan, I still have so much to worry about, on top of fighting this thing. Things I never thought I'd have to consider as a relatively healthy 31 year old (fertility, my heart, my hair, etc.) are not all I can think about. I haven't even returned to work yet. I'm on the edge of my recovery from my mastectomy, and now, knowing the battle that I face, I'm trying to muster the strength and courage to go out and face the world, even though I know that I will have to take more time for treatment and recovery. Right now the plan is for the nipple removal, chemo, and then radiation.

I guess more than anything I just want to know what your experiences were like. What have your best days been like? Your worst? How did you handle work? Family? (I've been stoic in all this...have had my moments, I've always been a private person, emotionally reserved...usually the one who holds it together for everyone else...)

ddfair

Rocky,

So so sorry to read your post. (((((hugs!)))) Wow have you been through the wringer! I can't even imagine how stressful your life has been since we last heard from you. I'm having a hard time getting a mental picture of what your surgery involved. You had a DIEP but were able to keep your own nipple? And now they have to remove the nipple? Is that right?  Also what type of chemo are they planning for you? I had always been told there was no chemo protocol for phyllodes,but that was 10 years ago at my last reoccurence.

I think you are going to need some time off from work to recover. Depending on the type of chemo you may be able to work through it. I only had radiation but I'm such a baby I took the last half off from work. At the time I didn't need the paycheck that badly. Turned out I could have managed the job and radiation physically. It was just a long drive to radiation everyday, they were never on time, I couldn't handle the stress of will I make it in time for work each day.

Please let us know how how things are going.

De 

RockyStorm

That's exactly right DD, I did initially keep my nipple. But now the concern is that since the pathology was malignant, that any traces that may still be in the tissue in/around my nipple could be an issue. My oncologist has recommended AIM treatment, which will be daunting to say the least. In-patient chemo essentially for 3-4 days each month, for about 3 months. The plan is for aggressive treatment since this thing was so large and grew so aggressively, and to hopefully lower the risk of it spreading and being even harder to treat later.

I'm definitely taking time from work to recover. Right now I'm still in the planning stages for the surgery and treatment. I think my main concern is making sure I have enough leave to cover my absence from work, especially with all these copays! I really don't want to be that person that's in and out, but I know that I have to do what I have to do.

I will certainly keep you posted though. I really, really appreciate you sharing your experience and advice, it helps more than words can even express.

RockyStorm

MS08

Hugs and blessings to you all! I was diagnosed with a golf ball size Phyllodes tumor in May. I had a Lumpsectomy a week ago. Yesterday I found out it's malignant. I've been emotionally numb. After reading alot about Phyllodes tumors, and all of your stories. I believe my best bet is to get a mastectomy, so I do not have the reoccurring phyllodes tumors, and procedures over and over again. I am a strong career woman with a good job and insurance and maintain my household for the most part. My husband and I just moved to another state and he is having a hard time finding consistent work. I'm so scared to get really sick and lose my home, etc. How do Cancer patients do it? I read some cancer patients have to choose treatment over food, and some people die because of the financial stress of medical bills. What can we do to help those in serious need? Is there a cancer grant etc? Thank you for reading. Keeping the faith.

Emmiecakes

From what I can see on the internet not a huge deal of information about Phyllodes is available. I am 25 years old and have had one lumpectomy in the past for a benign phyllodes tumor. The doctors said they would keep and eye on the breast for any recurrence and in less than a year I had two new 5cm tumours in the same site which came back malignant, I have just undergone a mastectomy, yet the tumors were so close to the skin they were almost protruding which led them to take the skin with it and form a new flap using back tissue and muscle. It all happens so fast that you don't even think about how you are going to feel after you lose both your breast and nipple not to mention the fear of another recurrence...

Although your diagnosis is benign there is a chance of a malignant recourance which can be so so nasty due to the fact they dont spread to lymph nodes like some breast cancers, they spread to the lungs and blood stream, from there they are not responsive to chemo or radiation so the diagnosis is bleek after that. I have been told by doctors that benign or malignant, phllodes need to be taken in the same seriousness as they are so unpredictable and possibly fatal.

Moderators

MS08 and Emmiecakes, thank you both for joining us here, and welcome!! We're sorry for the circumstances that have brought you to this wonderful community, but we hope you're finding great information and support here.

Please let us know if can be of any assistance.

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MS08

Emmiecakes, after your Lumpsectomy did you change your diet?

Did you feel any symptoms or sick before they found your 2 malignant Phyllodes tumors? These tumors are scary. If they are so rare why do I keep reading about more people having them?

fleur-de-lis

I had a benign Phyllodes tumor removed back in 2009....although on the last path slide there was some atypia....on the next stereotactic biopsy that I had, about 6 months after the tumor removal they found the typical benign findings and some ALH.

The Phyllodes has not returned...it was 9cm and literally grew over The weekend. I had just had a mammo and US the week before...all was normal. Was sent in as soon as I felt the tumor.....Radiologist found it on the US and sent me right away to get it removed. I had no follow up tx. Did not pursue a PMX.

All radiological reports have been normal up until now....when a MRI came back Bi-Rads 4. I am having the biopsy tomorrow.....we shall see.

I have access to the Bi-Rads MRI lexicon manual....the results are suggestive of DCIS, or LCIS......but ILC is also a possibility due to it 's location and other indicators. Lefty has ALH, and that finding is almost always in both breasts.

What is interesting, and of note to the current thread conversation is the visit that I had with my hemotologist yesterday. We stated that this lesion "might" be in fact benign. He mentioned the possibility of a hemangioma. They can become malignant. They also seem to ride side saddle with angiosarcomas, these are truly vicious creatures.

Follow the yellow brick road here.....Phyllodes are actually Cystosarcoma Phyllodes.......their growth and activities in breast tissue resemble that of a sarcoma....the leaf like spread, etc. The Phyllodes was so large ( and I am a A- small B cup) that it definitely grew into ductual and lobular tissue. I can "feel" the large cavern left behind in lefty....nary a cyst grows there..not much left. Yes, the ALH was largely excised..but, you know it still lurks there. Hard to see on mammo, and US, even MRI, unless growing and active....and not always then.

I had a well known and respected geneticist tell me that there is a genetic profile for Phyllodes...they just do not know what it is yet, and funding goes to the more common breast neoplasms. sad, as I keep hearing about more Phyllodes.

I tested neg. for BRCA 1+2 as well as the P10 and P53 mutations. I have yet to research the genetics behind breast sarcomas.

I did get him to admit that there are insulin receptors on Phyllodes. We know glucose fuels many tumors. I decided to go on metformin, especially since my testerosterone has always been on the high side. PCOS DX. In my mid-40s due to ovarian tumors. Slightly insulin resistant due to being reactive hypoglycemic ( yes, low blood sugar, not high) good diet and daily exercise on most days. Bad genetics on my maternal side, mother passed from Ovarian cancer. It should be mentioned that I have always had low estrogen levels and never use birth control pills, or smoked....barely drink

But I do have a methylation genetic mutation, as I am heterozygote for the MTHFR mutation. In simple terms, I do not covert my methyl donors correctly. This might suggest that I do not " detox" my sex hormone down the correct, healthy pathway. I have used DIM and other supplements to help with this.

I already pursued a doctor to remove my ovaries....DH just started a new job after two years in early retirement...so I wanted to wait till around the holidays...at 55 they have done their job.

But, depending on what they find on Wednesday's biopsy, and then if those findings change per the excisional biopsy....I might be during a MX, followed by tx. for whatever they find.

Big hugs to anyone going thru this.....too many decisions to make....it is overwhelming to say the least

rachel68

Emmie...

Your post seems to most closely align with my situation -- I had what i was told were 2 fibroid benign tumors, one in 2003 (about golf ball size) & removed -- and it grew back again in 2009 twice the size (i let it get too big) & it was removed - both grew fairly rapidly - , then it grew back again in 2015 & this time I let it go for about 2 1/4 yrs, & when i finally got it biopsied, the mayo clinic called it a phyllodes borderline benign tumor & it has grown to size of a fist, taking up a little over half my boob (according to mammo's & how it feels) and it's been protruding out of my skin this last year -- but b/c i haven't had insurance these last several years, i let this one grow so large, thinking i could still get a lumpectomy like the other 2 -- yet this time, the doctors are saying i need a full mastectomy, nipple & all -- which really surprised me!! i didn't think i ever needed a mastectomy if there is no cancer?? I have C cup breast .... so i read you saying it could always turn into cancer at any point & it's not worth NOT taking the whole thing, if it means having to possibly deal with worse prognosis later -- I really just hoped to have a nipple-sparing big lumpectomy & they say getting a DIEP Flap reconstruction from abdomen to fill in ?? Also, there is some calcium deposits in my other breast - so they thought to do some removal of that breast too at the same time --- with it being this big & protruding out of skin an inch from the nipple, is there any chance i could still save my nipple? ..... another thing i wanted to mention b/c I think it's interesting, is that western medicine says they don't know WHY these tumors form -- and I have a friend who is getting her doctorate in chinese medicine in europe, and I received a 'treatment' from her when she was in town last August - which involved her pressing on my organs in my stomach area to check for proper QI flow of my organs, and she said my liver QI was blocked (which she says also blocks proper blood flow) - so she unblocked it -- and the mammogram from August compared to the mammo I got 2 weeks ago late December showed NO growth of the normally "fast-growing tumor" !! .. I think that is kind of fascinating! - my doctors could not explain why it hasn't continued to aggressively grow, and when I told them she "unblocked my liver QI" which is right below my right breast with the big tumor, and that she thought it could be a reason why it grew in the first place, they scoffed at that possibility -- but with chinese medicine being around for 1000's of years & western medicine only 100 yrs, I think anything is possible!