Phyllodes Tumor - Newly Diagnosed - Lots of Questions

DareToTeach

Hi everyone, I'm new here. My name is Rae, I'm 23 years old and a special ed teacher, hence the username. I went in for a routine gynecological exam on 1/16/15 and my provider found a lump during the CBE. I had a diagnostic ultrasound on 1/28/15 which showed two distinct lesions that were fairly smooth-looking. The radiologist gave me 2 options: watch and wait for 6 months or schedule a biopsy. My family has a history of ovarian cancer, breast cancer, and many other types of cancer, so I chose to get the biopsy right away. I got my pathology results back today diagnosing me with a borderline/low-grade phyllodes tumor and fibroadenoma. I was very grateful to hear that it wasn't another type of tumor but now that I've done a little more research I'm finding out that there aren't a lot of answers on the internet. My pathology report says "The biopsy shows a fibroepithelial lesion with significantly increased stromal cellularity. No high-grade atypia is observed, and mitoses are inconspicuous." I have no idea what these medical terms mean so if anyone could help out by being my dictionary I would greatly appreciate it.

My first question is, are low-grade and borderline actually two names for the same classification of phyllodes tumor? I'm really confused on this point, as I've seen the definitions posted as malignant, benign, high-grade, low-grade etc. but no sites have said if they are the same thing or different.

Secondly, I need to schedule a surgical consultation regarding a lumpectomy. Are there specific questions I should ask at the consultation? I have fairly dense breast tissue, as I'm young and have never breastfed. Will this affect the surgery or outcome at all?

I appreciate your time answering these questions for me. I'm nervous about quite a few things, since this will be my first surgical procedure. I'm also concerned about the costs of lumpectomy, etc. My insurance is not the best and my husband and I bought a house in October so our savings are pretty negligible. If anyone has any experience to share I would greatly appreciate it! Thank you in advance.

moderators

Hi DareToTeach, welcome to Breastcancer.org. We're glad you've found us, and hope you find the answers you're looking for. Until other members come along to post with their own experiences, we hope you'll be reassure with information at these articles from our main site:

Phyllodes Tumors of the Breast

Questions to Ask Your Surgeon About Lumpectomy

Lowering Costs: Start With Your Doctor

We hope this helps. Please, let us know how you're doing.

The Mods

ddfair

Hi there teach,

I've had 4 bouts of malignant phyllodes tumors over a 20 year period. It is confusing on the classification. There has not been a standard for how to distinguish between the classifications until recently. If your tumor had " mitosis are Inconspicuous" that's a good thing. The rate of mitosis seen in a field of 10 power is what determines the classification. Get a Dorlands medical dictionary to help with all the terms. Make sure your tumor is reviewed by a pathologist who specializes in phyllodes. Mine were seen by David Page of Vanderbilt , considered to be a world expert on this.

Your dense tissue won't have any effect on the surgery. How much scar tissue you form inside the breast can cause problems later for mammograms. It can look and feel like a new tumor. I've had 2 lumpectomies for abnormal scar tissue.

Here's hoping all goes well for you.

De

downdog

DareToTeach, have you scheduled your lumpectomy yet? I didn't see your thread until now. I echo ddfair's advice in that the experience of the pathologist is critical to an accurate diagnosis. It is easier to identify and differentiate the tumour as benign/borderline/malignant than it is to differentiate a fibroadenoma from a phyllodes tumour. Six or seven years ago I had a radiologist identify a suspected phyllodes tumour on a mammagram. I did not have a biopsy. I was uncomfortable with the risk rate the first surgeon quoted (and hence my confidence in the pathologist overdiagnosing at that hospital), so I had my lumpectomy at a large breast cancer center where the pathologists would have sufficient experience with phyllodes tumours. The pathology report indicated that it was actually a fibroadenoma.

I researched phyllodes tumours extensively at the time, but have since deleted my research. Fibroadenomas have a true capsule, whereas a phyllodes tumour does not have. For this reason, a wide excision is required to examine the boundary between the tumour and margin. A wide range of histological features are seen within phyllodes tumours with heterogeneity existing between abutting areas within the same lesion. Based on the histological characteristics of the tumour, including its margin (pushing or infiltrating), stromal cellularity (slight or severe), stromal overgrowth (absent, slight, or severe), tumour necrosis (present or absent), cellular atypia (absent, slight, or severe), and the number of mitoses per high power field, they can be classified into benign, borderline or malignant categories.

I am sorry that you have the added financial stress on top of the stress of your situation. If it is viable for you, choose your BS based on the the volume of breast tumours the pathologist at the hospital sees in order to get an accurate diagnosis. Good luck.

ddfair

dare to teach,

Hope you have found a way get insurance to pay for a lumpectomy.  Let us know how you are doing.

De

Lexieb11

sorry to hear of your diagnosis. I was diagnosed in May of last year with a low grade phylode tumor. Make sure you have a dr that is familiar with this type of cancer. This cancer is graded differently then most grades in stages . It is stage as borderline or low grade and malignant meaning high grade. Radiation is sometimes suggested depending on pathology there is a group on facebook called phyllodes tumor this is a great site that helped me a lot ... This is not something to mess around with

Patriciademel-3

hello: I too am new here. I was dx w- high grade phyllodes tumor in May of 2003. I had my tumor path done by the local hospital the mayo clinic and dr Wendy wells at Dartmouth University. Both my Surgeon, Oncologist, Radiologist, and myself spoke with Dr. Barth's Assistant, Dr. Barth, and his pathologist Dr. Wendy wells. All pathologists were in complete agreement concerning every aspect of dx. I took a very proactive stance in my dx and tx. Both my Surgeon and myself found some info the other didn't. Believe me to date there is still little. Dr Barth was doing A clinical trial on Wide local excision with Radiation tx. It has to date been very effective. My Surgeon left staples on all the blood supply to the tumor which also doubled as A tumor marker. To date I believe all they know Is it's mode of travel which is through the blood stream, means of detection, and order of reoccurrence. It took me A long time to get over the where's and the whys of this tumor. I cannot predict anyone else's outcome but for me it was A good one. Do as much reseRch as you can. My best to you.

,

awatts2103

---

Sorry to hear about your diagnosis.

I found my lump in dec 2014 and it rapidly grew. I made the decision to have an excisional biopsy. My diagnosis was also Borderline Phyllodes Tumor 5cm. The stromar mitotic count is 6 mitoses with minimal nuclear atypia.

I try to research more info and just end up with more questions. I'm reading all these comment and I feel I should be more aggressive with my decisions

moderators

awatts2103, Thanks so much for chiming in here. It is really important to hear all different perspectives!

NATSGSG

@dare to teach:

hope you are doing well and getting better....I came here to just want to share this link that contains 768 scientific articles of Phyllodes disease of the breast with you. Hope that you'll find helpful info in there.

http://www.ncbi.nlm.nih.gov/pmc/?term=Phyllodes+Tumor

P.S. Please consider going to this site, the Society for Immunotherapy for Cancer and see if they have anything on this disease using immunotherapy to treat it. You may wish to consider asking them to put you in their mailing list for any latest development.

http://www.sitcancer.org/sitc-meetings/presentations?utm_source=Email&utm_medium=April%20IM&utm_campaign=IM%20PL%20edu%20Opps

PPS. This VIDEO link tells you what the current hot topic in cancer treatment, Immunotherapy is. Fascinating to watch.

http://videocast.nih.gov/summary.asp?Live=15875&bhcp=1 

ILoveLabs

Rae / Daretoteach, I hope you are doing well. The ambiguity of this is not easy to deal with and financial worries compound.

It is crucial to have a very competent pathologist - more than one would be ideal.

Thank you ddfair for the name of expert Phyllodes pathologist:)

Does anyone know any more pathologists / their contact info -that specialize in Phyllodes ? Trying to distinguish between a fibroandenoma and Phyllodes without having to resort to lumpendectomy.

lumpygirl

Hello everyone, i'm Carrie and i'm new here. Late December 2014 I found a lump in my right breast went through the scans and biopsies and given the all clear as a fibrodema. 7 weeks ago, I found a new lump in my left breast, having gone through it before I went through a period cycle to ensure it wasn't hormonal, by which time it grew considerably. I went to the doctors last week and was referred for the tests again. The biopsies missed the lump which is annoying and i'm having surgery to remove it in 2 weeks because of its size. My question is the current measurements are 3cm x 2.5cm x 2cm. The consultant was certain it must have been there longer than I claimed due to it's size in such a short period of time. However when I pointed out i'd had full sans only 7 months ago and it was clear and nothing there he was stumped. He has said because of my age he thinks it's another fibrodema but i'm not convinced. It's grown so rapidly and is so uncomfortable I feel I need to challenge this.

I started reading online (I know it's dangerous!) but due to the rapid growth, the hardness of the lump and the fact it shows on my breast if I lie down, I am starting to think it ticks all the boxes for a phyllodes tumour. Lots of people say it's very rare and not many docs are familiar with it- should I ask my consultant if this is a possibility, if it is a possibility, can I request to be referred to a doctor who is used to dealing with these?

Thank you everyone- stay healthy! Carrie x

moderators

Dear lumpygirl,

We are sorry that you are dealing with such concerns but glad that you reached out here. You may want to visit the Not Diagnosed but Worried Forum for others' suggestions on seeking other opinions. In the meantime, know that internet searching almost always can elevate one's anxiety. Let us know how you do with your surgery. The MOds

ddfair

Hi Carrie,

Sorry you are going through all this. I would absolutely ask your doctor about the possibility of this being a phyllodes tumor. Yes, it's rare. But as one expert on phyllodes told me, no matter how low the percent that any tumour would be phyllodes, if you get it, you have it 100 percent!  Both phyllodes and fibroadenomas can grow quite rapidly and get huge. Phyllodes are usually misdiagnosed as fibroadenomas initially. You probably won't be able to find a doctor who has experience with this because it is uncommon. There are expert pathologist,however.

What became of the first lump on the right side? I hope they didn't leave it in you. How big is/was it?

Please post us all an update. Hoping all turns out well for you.

De

lumpygirl

Hi De and Moderators,

Thank you for coming back to me. I should be clear i'm not usually an internet diagnoser by any means. The consultant looked concerned when I told him the lump only appeared 7 weeks ago and had grown so quickly. I received confirmation last night that he believes that this is the most likely diagnosis, but as you all say the pathologist results post surgery is the only certainty.

De, the lump I found in December was left inside as it's small and the biopsy was clear and was confirmed as a fibroadenoma. However a little more reading says the phyllodes is more common in people who have already had fibroadenomas anyway?

For anyone who has had the lumpectomy/ wide excision biopsy - roughly how long is healing time please? Given that 'healthy' tissue is also removed, is the breast slightly deformed post op? I'm thinking it's unlikely to be as the breast affected has considerably gone up in cup sizes since finding the lump while the other breast remains the same.

sorry if these are silly questions- it's nice to find some people who actually understand how bloomin rare this thing is! I should mention i'm 25 so quite young for this.

Thanks all,

Carrie x

ddfair

Hi Carrie,

I think I can respond to your questions about lumpectomy as I have had 6 wide excision lumpectomies. I was quite small breasted with a very wide rib cage, like a 38 almost A cup. Yeah, they don't really make that size bra   so..... I stupidly got implants so I could be a B cup and feel normal. That lasted 10 years, then got the first phyllodes. Had the implants and lump removed. That was extremely painful!!! Long recovery!!! But mostly the pain was from the implant removal. I had a big dent in my breast as the tumor was about 5x7 cm and my breast was small. Amazingly, breast tissue sort of rearranges in a few months and you couldn't see the dent anymore. You could feel an empty hollow spot,however. And of course, that side was noticeably smaller than the other. If I had been blessed with average size breasts it would have been fine.

For the subsequent lumpectomies, the recovery was pretty easy. I would take the day of surgery off plus 2 days after. If I had been doing an office type job it would have been easier. What sort of work do you do? You won't be able to do any lifting for a week or two. Do you have someone to support you through the recovery process? Has your surgeon said where the incision will be? If possible cutting around the aereola hids the scar nicely and doesn't effect sensation.

Hope this helps. Please free to ask anything.

De

lumpygirl

Thank you De, that really helps.

I work in an office but travel a lot and as it's my inner left breast I think i'll struggle with driving as it's where a seat belt sits so wondering how i'll get about. I couldn't drive for about 5 days after the biopsies as I was so bruised the seat belt dug in too much.

My partner is supporting me, as are my family which is great- i'm very lucky.

In terms of surgery, yes, the surgeon has said he will go around my nipple to minimize visible scarring. In terms of a dent, i'm sort of the other way around, i have a small back and large cup- i guess i'm just concerned about being wonky when it's removed. Superficial in the grand scheme of things I know- it's a lot to get used to in a very small space of time.

Thank you- it really is appreciated.

Carrie

ddfair

Carrie,

Driving may be difficult for a week or so post-op. I had a seatbelt pad from an auto supply store that wrapped around belt and fastened with velcro. Very handy.

As to being wonky, that depends on the amount of tissue removed in relationship to total breast size. In my case the first lumpectomy removed about 25% of total breast. I was able to hid that with a silicon shell over the breast inside my bra. I think I got it from the American Cancer Society mailorder catolog. It is called TLC . Your surgeon's office should have them or call ACS to mail one. Probably available online too.

I'm so glad you have a support system in place. That makes all the difference in a smooth recovery.

You are right, this is a lot to get used to in a short period of time. Like getting thrown into a foreign country!  You have to quickly learn to speak medical terms. And you are much too young to be going through this. But, we are here to help you on this journey. Hopefully you won't have to visit the cancer country for very long

De

 

lumpygirl

Thanks De,

i'm in England so i'll see what i can find over here .

I'll keep you posted after the surgery- all the very best and many thanks once again,

Carrie

ddfair

I look forward to hearing good news from you after your surgery.

De

rebeccaelizabe

Hello! I'm Rebecca, age 24, and I've just been diagnosed with a possible phyllodes tumor after a biopsy of the lump in my breast was labeled "inconclusive". My doctor told me that I had to have a WLE of the mass, because they can't be sure what it is unless they look at the whole mass. I have a huge problem with going under the knife because I might have a tumor which is benign anyway in most cases. Any one have experience with this type of diagnoses? What did you do? Particularly interested in cases where people decided to wait and see with frequent monitoring of the mass.

I cannot wrap my head around letting someone mutilate me, because of something that might be nothing.

ddfair

So sorry you have needed to come here. How large is the area of concern? If it's a tiny lump and you have average to large breasts a wide excision wouldn't be a problem. Removing a large lump on small breasts will leave a definate dent. At your young age I would think a watch and wait with careful monitoring would be ok. However, be advised that fibrioadenomas and phyllodes tumors can grow VERY quickly and get huge!! This site has some excellent information on both. Read all you can before making a decision. Have you considered getting a second opinion? It's your decision, don't let the doctor push you into anything you're not comfortable doing.

De

rebeccaelizabe

Thanks for the reply De! The size of the lump vs the size of my breast is the big consideration for me. Its pretty sizeable, at least 3-cm, and they would want to take an additional 1 cm on top of that. I'm small breasted, and this would be a significant chunk. It really bothers me that the medical consensus here is that the ONLY way to tell is to remove the entire mass. I'm definitely going in for a second opinion. I would be devastated if I had the surgery and it turned out to be nothing. The physical and financial ramifications are so extreme. By that same token, I have a history of breast cancer on both sides of the family so its not something to be taken lightly.

I also found out from my radiologist yesterday that there had been significant growth in the mass from the first screening I had 6 months ago to the recent ultrasound. But fibroadenomas grow too. So much uncertainty!

lumpygirl

hi De

Just to keep you informed, had surgery 2 weeks ago and got path results yesterday. It confirmed a borderline phyllodes tumour was removed. Phew. Bad news was that there were 2 smaller phyllodes in the 'healthy' margin tissue removed so I have more surgery planned in ae

lumpygirl

sent before finished!

Planned for September to remove a much larger margin for analysis.

As the last surgery dropped me a cup size and this one is going to take a lot of tissue I've been offered a liposuction reconstruction. Anyone had one of these?

Rebecca I'm 26 so similar age, if they think it's a phyllodes get it out Hun x

wilsonmarie

sorry for your health crisis. i am new to this group. had a mastec on april15 2015. pathology came back as cancerous phyllodes tumor Im wondering if I ned to get pathologist who is specialized in phyllodes.

ddfair

Lumpy girl,

So relieved to hear from you! Sorry it wasn't a benign tumor, and sorry you have to have another surgery. Is the liposuction also called fat grafting? If so, I think there's a thread here on this site.

Did you get an expert second opinion on the pathology?  

ddfair

Wilson Marie,

Sorry to welcome you to our exclusive club. Hope you are recovering well.

To answer your question, yes, you need a a pathologist who has expertise in phyllodes. I'm a little confused about the classification of your tumor. Phyllodes are classified as benign, borderline ,or malignant. When you say cancerous it must be borderline or malignant. Nowadays they also add a grading from low grade to high grade. You could  have different classes within the same tumor. This site has some excellent info under " less common types of breast cancer" Maybe the moderators will send you a link. I don't know how to do that yet. I am happy to answer any questions.

De

lumpygirl

Hi De,

no, I didn't. My consultant said there was no need as there wasn't any doubt it was a phyllodes. The smaller lumps were also the same structure so no just waiting for the surgery date in September.

I believe liposuction is the same as fat grafting, they will take tissue from elsewhere in my body to reconstruct my breast.

Thank you for your continued support De, it really has helped talked to someone so in the know.

Best wishes,

Carrie

Athulita108

Hello there,
I'm new to the forum and not quite sure how it works yet.
I'm looking to share experience with "you" out there, but not sure how to find you.
I was told of my diagnosed of Malignant Phyllodes Tumor on Aug.25th.2015, the actual biopsy was performed one day after my 49th b-day the week before.
The lump was found on my left breast, accidentally, during sleep, 2 months prior.
It's being less then a month, and I'm still going to have a CT scan on Sep.8th.2015 and lumpectomy surgery is scheduled for Oct.9th.2015.
I have some many questions and I'm trying to have a positive approach to this life changing event, I would like to share thoughts with anyone willing.
I'm embracing the unknown. I'm sure all women w this disease have different stories and experiences to share, and I'll probably have my own, but would be nice if I can feel I'm not alone.
Everything I have found online so far, only encourages my fears, but that I don't believe in feeding it.

I would like to have enough information to make informed decisions, but also share both inspirational thoughts as well a shoulder to cry with... and so, to feed our courage.
My doctor haven't shared much info but she is very proactive and things are moving in good speed (I guess), she is a breast specialist and will perform my surgery, and will then, forward me to a oncologist.

I have Medi-cal and so my resources are limited. I have lost my job and was back in school for a couple of years in hopes of new carrier, which the search is now is on hold.
Hopefully I will get back on my feet, and get better health plan. But for now, Medi-cal is a blessing, otherwise I would not have the chance to take care of it.
I just don't know if there are actually any real treatment yet, or the real chances for survival....I want to be realistic about it , but at the same time, researching and looking for leads on alternative or non-traditional treatments.

If you would like to share some of your thoughts, I'll be happy to continue the conversation.
I would like to meet as many of you as possible, or try to meat you in person if you live in the Bay Area, CA.
For now, I wish you all much love & light. And strength and steadfastness.
Thank you, A

ddfair

Hi Athulita,

Sorry to welcome you to the phyllodes club.Tell me what fears you have from reading online? Have you read the information on phyllodes here on breastcancer.org? This site has some excellent information for the new patient.The good news is that even malignant phyllodes has a very good prognosis. It rarely ever spreds,you won't need chemo,and radiation is rarely used. You will need a wide excision surgery and close follow up. 

I was diagnosed over 20 years ago and I'm still here. Try not to let your fears run away with you. Happy to answer any questions.

De