Phyllodes tumours

Hi,and Welcome!!

The length of time of your stay will be individual,but the Doctors and Nurses can give you some idea.Coping is individual too,but I took some hobbies in with me to while away the time and you might like to,too.

keep us informed and best wishes Xxx

Hi 

I too have had a large phyllodes removed almost 2 years ago. 

Have they given you an indication of what grade PT you are possibly dealing with?  It sounds as if you are progressing along the diagnostic/treatment pathway if you know already that you will be having surgery and you have had a CT scan. 

Surgery is the main treatment for a PT, be sure that your medical team get acceptable clean margin around the lump as this is the main factor in controlling and preventing a PT coming back, regardless of what grade it is.

I had a mastectomy due to tumour size and was in hospital for just the one night.

If you have any questions fire away, as far as i know i am the only fairly active person on here who has had a PT/recently gone through treatment for it. PT's are pretty rare.

Good luck

Hi   ...to add to what Violetsniff and said, a welcome hug

Take care

Hi, I have just been diagnosed with a malignant phyllodes which they say is rare. I had a core biopsy a few weeks ago which showed some b3 tissue with possible phyllodes. They did an excision biopsy two weeks ago which confirmed it was a malignant phyllodes. I have a couple of other small lumps which they biopsied yesterday to check whether they are phyllodes or fibroadenomas as they first thought. I think if there is more than one phyllodes they will do a mastectomy and if just the one they will just take more tissue. Bit worried about it spreading so I'm thinking I would rather go for mastectomy. Find out on Friday.

Sorry, I've not been in here much over the past few months, and didn't see any notifications. So i hope you don't feel that you were ignored too much. There are not too many people with a PT on here

How did it go? Was it a PT, and how you doing now?

JG

Hi JollyG and the other lovely people on this chat. I hope everyone is keeping well

I know this chat is slightly old but I am new here and have recently been diagnosed with a malignant Phyllodes tumor (PT) in my left breast.  This was diagnosed following an excision of a B3 Breast Lump last month (Feb 2021). 

I keep reading that PTs are very rare and even more uncommon to be cancerous,  Unfortunately, I am also one of the unlucky ones to be struct with it.  I am extremely nervous and panicking as there is very little information out there on it. I was hoping for support and information from yourself and anyone else here.

I've had a small lump in my breast since 2013, had it biopsied twice (2013 and 2017) and it came back benign and diagnosed as a Fibroadenoma.  In Nov 2020 the lump felt different and it had certainly grown so I raised it and I'm now where I am. 

Next steps for me are further surgery to remove the surrounding tissue around the lump to reduce chances of reoccurrence along with a partial reconstruction.  I have an appointment today with my consultant to plan the surgery and discuss reconstruction options.  Following your feedback about getting clean acceptable margins, I have added a question on this to my ever growing list of Qs to ask today - Thank you for sharing this info.

I'm really interested to hear about the options you were given, the route you went down and your journey.  This is for my learning and to also raise awareness and help others.  

Thanks in advance

Hi Lady Dee, so sorry to hear you are going through this.  I remember that stage of initial diagnosis so well and the fear.  Believe me it does get easier and it sounds as though they caught it early.   The great thing is that they diagnosed it before it got too big - so many people end up with fast growing, large PT's because doctors think they are fibroadenomas.

Key is to get clear margins.  I would also ask for a copy of your pathology report and in particular ask them to include the mitotic rate, presence or absence of stromal overgrowth, necrosis, size, and what clear margins they plan to take.  I would recommend being referrred to a sarcoma specialist with experience of phylodes and make sure you get a CT scan of chest and abdomen  every 3 - 6  months for the first year and breast ultrasounds / mammos regularly to check for any regrowth.  If they say you don't need any scans or you only need a mammo once a year then get referred elsewhere asap because you need much more than that.

I was diagnosed in Cambridge in December 2019 and I'm very grateful that they diagnosed it correctly.  It was a huge hospital but they had not seen a malignant PT for 5 years.  They planned to take clear margins and leave it at that.  However, from what I had read online I wasn't very comfortable and wanted some scans to check for metastasis and was also concerned about whether I should have a mastectomy.  I got an NHS referral to the Royal Marsden cancer hospital in London to their sarcoma team and they have been very good.  They took clear margins in January 2020 and said I didn't need a mastectomy - it doesn't reduce the risk of metastasis any more than clear margins would.  They give me CT scans regularly (Feb 2020, May 2020, x-ray August 2020, CT Dec 2020 and MRI of the breast in March 2021).  I also have ultrasounds every 3 months because mammos don't work for me.  

I found it quite difficult to sleep to begin with and I asked the doctor for something to help.  He gave me some amytriptaline which was really good - it is not addictive and is not a sleeping pill but just helps me get off to sleep and is safe for longer term use.

I hope your appointments go well.

Lucy

I'd like to send you a private message but it says I can't message you.  If you'd like further info could you turn on private messaging as I have something I'd like to share with you.

Hi Lucy, sorry I haven't logged on for a few days. Thank you so much for replying to me, I'm very interested in what you share with me and I would love to chat to you for further info.  I'm hoping you can private message me now.