Anyone with phyllodes?

sparrow_

Hi there!

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. Soon I began to see visible veins spreading across my breast. That led to doctor's appointment, ultrasound (where the lump was identified as irregular, lobulated and having peripheral vascularity, 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.

On Friday my lump was diagnosed as a benign phyllodes tumour, measuring just under 5cm. Very rare and very aggressive. I have learned that they are always viewed as having malignant potential (actually in a couple of places I read that they are always treated as a form of breast cancer, regardless of their grade). There's a chance it can come back, and more aggressively, especially in the next few years. My surgeon took very small margins (5mm at most) when she removed the lump; I'm thinking probably because she was sure it was a fibroadenoma. We were both very stunned that it wasn't. She also told me to go for screening once a year for the next two years, but I have since read that it's more advisable to go every six months. It looks to me as though once you have a phyllodes, it stays somehow in your system. To be honest, my surgeon didn't tell me much and I am wondering now how much she really knows about phyllodes. I don't blame her though, as they are so rare.

I'm just wondering if anyone out there also has an experience with phyllodes. I'm feeling a bit alone in this. People who know I've had an issue are saying it's great it's not cancer. Well, of course; I am so happy it's benign, but the possibility of recurrence (which is looking more likely for me, given my small surgical margins) means I'm not yet in the clear. I'm recovering well physically from the surgery, but emotionally I'm still struggling a bit. I'm trying to take it one day at a time and not worry about something that might not happen. 

Any help, any words would be so meaningful!

kmakm

We have had someone here a couple of months ago with Phyllodes. I tried to find the discussion but the search button isn't working today.

Just a word on margins. My BS kept saying "small but clear" about my re-excision surgery. I queried him on it. He was talking about 1mm in my case and explained that in Australia the minimum margin standard is set at 2mm. He said tecnichally clear by one cell is a clear margin. In the US they don't set a standard, so 1 - 2mm margins are very common there. So to me, your 5mm sounds generous!

sparrow_

Thanks so much. That's really interesting about margins, because all the phyllodes info I read said at least 1cm is recommended. Someone even said 2cm is best (hence my concern).

kmakm

Ah well, that could be a completely different standard. Why don't you get onto your GP and ask him/her to find you a Phyllodes specialist? Might be reassuring to have a chat to one with more experience and knowledge of the condition. K xox

arpie

Sorry to see you here @sparrow_ ... there have been a couple of posts on BCNA in the last 2 years .......
https://onlinenetwork.bcna.org.au/discussion/19010/phyllodes-tumour

and

https://onlinenetwork.bcna.org.au/discussion/17181/phyllodes-tumour

I am not familiar with the tumour ... but hope the discussion here may help you with forming a battle plan xxxx

Take care xx

sparrow_

@kmakm, that's a great idea. My breast surgeon is lovely but I just don't know how much she knows, especially as her perspective of 5mm margins being ok/ultrasound once a year differ quite largely from whst I have read: at least 1cm margin/ultrasound every six months for first 18 months. I guess it always helps to get a second opinion!

sparrow_

@arpie, thank you so much. Those links did help. Before I found out I had this tumour I had no idea what it was. Never heard of it. When I started reading about it, I went: Hey! That's what I had! And now I feel like I could write my own book about it. Ah, the good old days! It does feel good in a way to have a diagnosis. I just had the feeling it wasn't a fibroadenoma...that, or a rogue fibro.
You have both really helped me already. These past few days have been a bit lonely. Most people have no clue about PT, and who's to blame them, but it means I'm going through a lot on my own.
It's been wrecking me emotionally, particularly thinking how it could come back and even worse than before, but I'm determined that will stop as much as it can by living one day at a time and being thankful for each day. 

socoda

Hi @Sparrow, I know that phyllodes-tumor is different from BC but you have still come to the right place for support and are most definitely not alone. I think recurrence is a huge worry for all of us and we can relate to the anxiety this can cause and totally get where you are at. I like kmakm's idea of finding a specialist for your tumor, just be aware that even specialists can have differing opinions on what is recommended standard care and practise. Perhaps also look at some yoga, meditation to try and reduce anxiety levels. Hope you can find some peace of mind and let us know how you're going. Sending big hugs. Xx 

arpie

Keep putting up any queries/vents on here, @sparrow_  ...... you could even 'message' those in the previous 2 threads with Phyllodes .....with a bit of luck, they'll get back to you. 

The thin margins is a bit of a worry .... sometimes it is due to the position of the tumours - if close to the chest wall or immediately under the skin .... 

The whole diagnosis of BC is a Wrecking Ball & I find that the longterm emotional toll is way more severe than the actual diagnosis, surgery & active treatment.  It just keeps mucking with your brain!   Ring the BCNA Help Line if you'd like to get another perspective .... also chat with your GP and/or Breast Care Nurse if you are unhappy with things 'as they stand'.  (Otherwise, it WILL muck with your brain.)   

Take care & all the best for your ongoing treatment xxx

sparrow_

@socoda, thank you! It is different to BC. Even a malignant phyllodes is not dealt with the same way; I read it doesn't respond well to chemo and radiation. I think I will seek another opinion but follow your point in considering all options and my own choice. I feel really physically tense. I think stretching may help.

@arpie, great idea to message others. My phyllodes was, as far as I could tell, close to the chest wall on one side and very close to the skin on the other (I could see it through my skin and it caused veins to become visible and my skin to be discoloured). 

Thank you so much for all the encouragement and support. It's really made me feel better. Xx