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Topic: Phyllodes Tumor - Newly Diagnosed - Lots of Questions

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Feb 4, 2015 09:28PM

DareToTeach wrote:

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. <3

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Posts 91 - 106 (106 total)

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Jun 13, 2018 12:20PM Moderators wrote:

Raesouth, so sorry you find yourself here.

Here are some links that you may find helpful. Hang in there, and definitely find a doctor that you feel good about!

Symptoms and Diagnosis of Phyllodes Tumors of the Breast

Treatment of Phyllodes Tumors

Phyllodes Tumors of the Breast

Follow-Up Care for Phyllodes Tumors of the Breast

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jul 24, 2018 02:41AM - edited Jul 24, 2018 02:53AM by Boyd748

hey Ladies,

I'm joining your board. I had a lumpectomy almost 2 weeks ago to remove what my surgeon thought was another fibroadenoma (have had 3 previous). Well a week later I get a call, it's not a fibroadenoma to her surprise is a phyllodes tumor but she said is completely benign. She said it may come back so we have to be watchful but it wasn't anything to worry about. She said if it does come back it will have to be removed along with extra which she didn't do this time. Anyone have any suggestions? Thinking of having a masectomy if possible my left breast is pretty deformed, the first fibroadenoma was peach size and when that surgeon removed it he stapled me shut, I was 17 anyways I just don't want it to grow back as cancer which the surgeon said could happen. Also this phyllodes tumor they removed was on my chest wall so that scares me. Please let me know if anyone has had this experienc. Thank

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Jul 28, 2018 10:30PM sm627 wrote:

Hi Boyd748,

If I were you I would have a mastectomy ASAP. I had a Borderline Phyllodes tumor that grew to be 3lb and 7 inches long, so I had no choice but to have a mastectomy. These tumors have a bad habit of growing very fast and big take care of it now before it gets to big. My surgeon had to take a lot of extra skin away during my mastectomy and, in turn, that is making reconstruction breast surgery very challenging.

For me having less surgeries is the way to go. I think they should give the phyllodes a nickname the weed tumor for how quickly it can grow back again.

Wishing the best.

Hugs,

Sara

Diagnosed at 32 years old. DX 5/30/2017 Borderline Phyllodes Tumor 17cm. Surgery 6/27/2017 Mastectomy(right). Hormonal Therapy 9/25/2017 Tamoxifen
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Jul 30, 2018 12:17AM Mkriddle wrote:

I just had my biopsy and I got the results back today. I have phyllodes tumor on both breasts. One of them is benign and the other is high risk, risk high but nothing else. That makes me super worried that something they are not telling me like pre cancerous or something like that. It has pretty much doubled in size since October and I'm hoping they take it out soon.

I haven't spoken to my Dr yet but will this week.

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Sep 6, 2018 09:28PM StillLearning123 wrote:

Hi all, I just recently joined. About a month and a half ago I went to the doctor for a lump that ultimately led to a lumpectomy and the pathology said it was a benign phyllodes. About 5 1/2 cm. I was in the process of moving for a job before this all started and officially moved about three weeks ago. I've been trying to learn more about this kind of tumor since and figure out the best way to move forward. My surgery was in my old town. I learned my surgeon only took out 1 mm of tissue but there was a portion where she could not take out any tissue because the tumor was right up against my skin. I'm trying to determine if I can watch and wait or if I need to go back to get a wider margin? How would that work if part was right against my skin? I'm also not sure what kind of follow up I need to do. Is every six months for a few years fine if I don't feel a new lump? I'm 30 by the way. I'm also concerned because I have two other lumps in the same breast that have not been biopsied. I know one has been there for five years because it was on a previous ultrasound (i have a history of Fibroadenomas) but I'm not sure how long the other one has been there. How quickly after a lumpectomy could I get a biopsy on the other lumps? My hospital does mammos before ultrasounds but can I push to have them just do an ultrasound and biopsy if it's too soon after the surgery to do a mammo? Or would it be better to get a mammo to make sure there are no other unknown lumps?

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Sep 7, 2018 05:54AM - edited Sep 7, 2018 05:54AM by Moderators

StillLearning123, we're sorry that you have to be here for this reason, but glad you've found and joined our wonderful Community!

We hope you'll get responses, support and advice from other members soon. Until then, you may find these pages helpful regarding Phyllodes Tumors of the Breast and Follow-Up Care for Phyllodes Tumors of the Breast.

Please, let us know how you're doing. We're thinking of you!

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Oct 28, 2018 07:16PM Boyd748 wrote:

update: my surgeon didn't take extra tissue, my pathology report doesn't say. Anything about margins, she said she thinks she got it all. SHehas me. sCheduled for ultrasound every 6 months to check to see if grew back. My surgeon retires in de member so I wil like ex rein get a new one in her office

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Oct 29, 2018 09:24PM sm627 wrote:

Hi Boyd748,

Thanks for the update. I am so sorry to hear that your surgeon did not get extra tissue. and that you will be needing to find a new surgeon soon. This must be so frustrating and scary too. How are you feeling about everything? What kind of Phyllodes did you have again. Personally I would find it nerve racking to wait 6 months to see if it comes back again. Is there anyway you can convince your surgeon to go back in again and get more and better margins. Did you get a Mastectomy?

Sending you good thoughts and lots of Hugs,

Sara

Diagnosed at 32 years old. DX 5/30/2017 Borderline Phyllodes Tumor 17cm. Surgery 6/27/2017 Mastectomy(right). Hormonal Therapy 9/25/2017 Tamoxifen
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Nov 15, 2018 12:15PM Angel111 wrote:

Hello ddfair,

Your story is giving me some hope. I am 45 yrs old and have 5yr old son. I have been diagnosed with high grade malignant phyllodes tumor 3.5 cm in my right breast. My surgeon did lumpectomy with 1 cm margin on 11/06/18.  Pathology report shows clear margin. My surgeon is saying Chemo and radiation therapy is not so effective. But there are  information that Radiation has low chance of recurrence. Not sure what to do. Every time I look at my son's face I feel like crying just thinking what will happen to him if I am not around.

Can you pls advise how should I proceed in this situation. 

Any piece of advise will shed some light in my life.


Angel111


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Nov 15, 2018 09:00PM ddfair wrote:

Angel,

You need to see a doctor with some experience treating phyloides patients. There is some data showing radiation does lower your odds of having a recurrence. You need to gather all the information you can about your particular case. It's hard to make any decisions without all the risk vs benefits explained.

I completely understand what you are feeling regarding your son. I was 41 when I got my first tumour. My youngest son was also 5. I felt I had to make plans for him to go live with my brother in another state as my husband wasn't being helpful or supportive. It was a very difficult time. But knowing that I had a plan for the worst helped me get through it.

I've been tumour free since 2004. I know there's a chance it could still come back. That's true of any cancer. Sending you hugs. Feel free to ask anything.

De

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Nov 16, 2018 06:49AM Angel111 wrote:

Thank you De for your reply. My Dr. called me yesterday and told that she will be talking to the hospital board regarding my case and will let me know the treatment plan.

I am trying not to think about this and get back to normal life but it's being so hard.

Angel111

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Nov 16, 2018 06:14PM sparrowhawk wrote:

Hi ladies, I made a separate post but realised it may be easier just to write here.

I'm 26 years old and have a history of multiple fibroadenomas (14 at last count) in both breasts, with the first diagnosed at age 19. In July I noticed that one fibroadenoma (actually, the one I first ever felt all those years ago) had seemingly doubled in size overnight. That led to doctor's appointment, ultrasound (where the lump was identified as unusual and documented as two growths, not one), core biopsy (where radiologist assured me it was a fibroadenoma), surgical consult (again, reassurance of fibroadenoma), and excisional biopsy on 8/11.

Today my lump was diagnosed as a benign phyllodes tumour, measuring just under 5cm. I know it's not malignant, but I still have some questions:

My surgeon took a small surgical margin around the tumour (5mm). I'm thinking it's probably because she was sure it was a fibroadenoma and I am small-breasted. She did tell me that phyllodes do have a tendency to grow back, especially if the margins are not big. I am wondering: is it honestly likely for these tumours to reoccur? Are these margins too small? What does the approach tend to be if it grows back - just removal again, or more serious treatment like mastectomy?

How often should I go for screening? Every 6 months, every year?

27yo who loves life. Dx Phyllodes tumour and 13 fibroadenomas. Surgery Lumpectomy: Left
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Nov 16, 2018 07:55PM ddfair wrote:

Hello Sparrowhawk,

Let me tackle your questions one at a time.

Is it likely for a phyloides tumour to reoccur? Absolutely! That's one of its hallmark traits along with growing extremely fast.

Are these margins too small? Yes, you need 2 cm clear margins all the way around. Don't be surprised if your doctor suggests a re-excision to obtain wide clear margins.

What is the approach tend to be if it reoccurs? Lumpectomy with wide margins. Don't let them push you into a mastectomy. With small breasts, male doctors will tell you that a lumpectomy with wide margins will leave you with "cosmetically unacceptable results". I told more than few doctors that I am the only one who gets to decide what is unacceptable. I had 6 wide margin lumpectomies before finally having a mastectomy. I only had A/B cup breasts.

How often should you be seen? Every 6 months for at least 18 months, then once a year if there's no reoccurance.

BTW, I've been following your original thread from the beginning. I thought it was a phyloides pretty early on in your posting. So I wasn't surprised when you got the diagnosis. Read up on the information here on BCO. You will need to become your own expert as this is rare and most doctors have never treated one.

De

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Nov 16, 2018 11:29PM sparrowhawk wrote:

Hi De,

Thank you so much. I am feeling at the moment that I have a seroma (hard and tender in the breast), so that may affect how much I can feel for a while.

To be honest, my surgeon said nothing about the margins, there was no note on biopsy - I only found they may be too small after I read up on phyllodes. I am wondering if the surgeon has even seen a phyllodes before, given how rare they are. What would you recommend as next step? Should I just watch and wait, or actually ask about re-excision?

I really don't want a mastectomy if I can avoid it. As for cosmetically unacceptable, my breast is now scarred and has a different shape following surgery, so it's already on the way!

My doctor told me to have an US in a year. This concermed me, as following my original US (before they knew it was phyllodes) they told me to come back in 3-4 months as I have many fibroadenomas. And after reading about how fast these things grow, one year seems very long. I have a referral already, so will go back in March/April.

One more question. Even though this was benign, it doesn't make me feel much more relieved given how rare and unpredictable phyllodes are. The surgeon was upfront and said it can grow back. Everyone is saying it's great it's benign and it IS, but I just can't help being aware of the fact that I'm really not in the clear. I don't even know at this stage if I'm ready to read more about it. Am I focusing too much on it? What are some good ways to chill out?

27yo who loves life. Dx Phyllodes tumour and 13 fibroadenomas. Surgery Lumpectomy: Left
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Mar 6, 2019 08:50AM Firefly8 wrote:

Hello Everyone,

I just had a question. How was your tumor diagnosed? Did they correctly identify it from a Mammo/US? Or, was it a biopsy that determined it?

When I saw my OB/GYN in 2017, he looked at the results and his opinion is that it may be Phyllodes Tumors, as I have too many for it to be fibroadenomas as the US suggested. I'm seeing a new breast surgeon next week. I did not get my Mammo/US done last year as I'm very ill.

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Dec 12, 2019 08:24AM Athulita108 wrote:

Hi Firefly,

Sorry I haven't visited the group for while. In my case, in both times I had malignant phylodes, it was the biopsy that gave the final diagnosis.

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