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.

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.