hi there!

I’m sorry to hear about your diagnosis and I hope you’ve recovering well. I can only explain about my experience I went through. I was only 12 yrs old when I was first diagnosed so i wasn’t really familiar with medical terms so sorry. At the time the doctors weren’t sure what to do so we eventually came to decide to have an operation every time my tumor came back. So thats what I did for like for the first 3 yrs and they sent it to lab each time to make sure its benign and not anything malignant. After that it stopped growing and it went from 3 months to 6 months to yearly checkup appointments. I go for my checkup appointment regularly and i also check my own breasts regularly to see any changes and if i do i explain it to the doctor the next time i see him. Check your breast regularly and make an appointment with gp if you’re concerned about anything or any changes and make use of any help available from the hospital like the breast care nurses etc. Its your body youre the best at knowing whats changing/happening. When i went for a routine appointment the doctor asked abt any changes i told him he examined and said its fine blah blah but I knew my tumour came back again and i had to convince and get the doctor to examine my breast again and they agreed with me. The lump was v small and taken out but thankfully it was fibroadenoma and today I've officially been discharged from the hospital. I hope this helps you and reassures in some way. There will be difficult and hard times but i hope youll get through it and i wish you all the best! If theres anything you wanna ask you can ask  

Hello, I'm new to the forum but wanted to respond as phyllodes tumours are not the most common of things. I recently had a so-called fibroadenoma removed. Pathology showed it to be a borderline phyllodes tumour. My surgeon was very keen to go back in and get clean margins of at least 1 cm. This hadn't been done in the original surgery because, at that time, they thought it was an FA.  I had a second surgery in February. Limited studies have been done on PTs, but obtaining a good amount of clear margins (commonly reported as 1 cm)  is considered to be an important factor in helping prevent recurrences (from several studies). In general, this seems to be thought 'best practice' for all grades of PTs where a lumpectomy is done (although some individual  surgeons might have different ideas). I wish you the best, and listen to your Aunty!!

Hi,

I am in the same situation - I'm 32. Positive margins, benign phyllodes. What happened in the end with you? What did your surgeon say?

hope all went well

X

Hi

There is a huge amount of information on the Facebook phyllodes forum. This is a connective tissue problem, so more in the category of sarcoma than carcinoma (only if your phyllodes is classified as malignant - most are benign). Surgery is the mainstay as chem doesn't usually work unless you have malignant phyllodes with mets. So, for all categories, (benign, borderline, malignant), it is essential to get them removed. There are differing views on margin clearance (and somewhat depends on whether benign or not) but any category with positive margins should be re-excised (recurrence rates can be significant and, occasionally, they can return at a different grade i.e. benign to borderline ). I am on my second borderline phyllodes and will need more surgery for better margins. Even if benign, I would be asking my consultant/surgeon about minimum 5mm margins (current thinking, I believe, is that the previous 'gold standard' of 1cm clearance may not be required for benign, or indeed, borderlines). Follow-up is important. Always ask what this will be. I have researched a lot on phyllodes. Please ask if you think I can be of any help.

Hello, I was just wondering if you had 2 borderline PTs in the same boob? I have had one PT left boob and 1BLPT right boob all within 6months im the first my consultant has seen with a PT in both boobs.

I had surgery again this Wednesday for a shave of the area of the borderline PT so I'm hoping that's it got to have a CT scan with thorax end of the month  I just worried now that another one might pop up somewhere else. 
Hope your keeping well 

Regards 

Louise 

Hello Louise, I have had two borderlines in the same breast (left breast) but at different locations. One was in the upper breast quite near the surface - the other was only found on imaging as it was very close to the chest wall and couldn't be felt. Despite being told I would get 10mm margins for my chest wall tumour, I only got 0.6mm margin i.e. virtually nothing. The surgeon has now refused margin surgery. Being left with a negligible margin especially when I was assured it would be approximately 10mm has taken a huge toll on my mental health. I have no checks except an annual mammogram. With phyllodes, you just can't tell what will happen and many surgeons (like mine) don't appear to know what they are dealing with. Hopefully you will get your surgery/scans and this will be the end of your phyllodes journey. I would certainly be asking your surgeon what monitoring is planned for you once your surgery is complete, given you have had two pts. In my case, I am paying for 6-monthly ultrasounds myself as I wouldn't be able to feel any recurrence at the chest wall. I wish you the best of luck - having a consultant/surgeon with phyllodes expertise is very important. If you want to ask anything, please do. I hope that my bad experience can perhaps help someone else.

Thank you for your reply are you in the uk? 
I have never asked what margins have been took I do feel I'm getting looked after and I will be getting checked up for the next 5 years but I was to thinking of paying for a 6 monthly check etc as it's piece of mind and we must look after our mental health too.. 

keep in touch 

Louise 

Yes, I'm in the UK - north-east Scotland. there has been a lot of discussion /research papers on margins. If the tumour is benign then some papers state small margins are acceptable. For fully malignant, then wide margins are needed. The jury is out on borderlines but most surgeons with phyllodes knowledge will want to play safe with wide margins (5-10mm?). Mine was half a millimetre so that's why I'm so distressed. Ask your about margins - they may be very important. If you don't mind, could you let me know your surgeon's view on margins for borderlines? I'd be really interested in his/her opinion. Thanks.

Hello ladies 

[@Mcvikki]‍ , [@sky_lights]‍ , [@Opal9]‍ , [@JessieL]‍ [@Louisesjc13]‍ 

may I please kindly ask what your Phylloyd tumours felt/feel like?  I.e. round/jagged, oval, hard/soft, mobile/immobile etc I am currently waiting for my breast clinic appointment on Monday and trying to cling onto all the hope I can get about the lump I have found (although I have a very bad feeling it's going to be bad news).  Just need some little bit of hope this will turn out to be a FA or Phylloyd :(