Phyllodes Tumour & future mastectomy

Hello - at 38 I was horrified to hear last week that the lumpectomy to remove my phyllodes tumour ( 10cm x 12cm) and was tested turns out unecpectedly cancerous. I now have to have a mastecomy using fat from my stomach to reconstruct during the operation. I am a busy single mother with a managerial job that I have just been promoted to. I am concerned to read about other women who have had this done and have been unable to so much for weeks and weeks afterwards - work have been great and tell me they will pay me throughout no matter how long it takes… but I am so active … my 8 year old already misses giving me the usual ambundance of cuddles because of my sore, post op boob. This is all such a shock - you never think it will happen to you… has anyone else had this done? how did you feel? how long does it take? Im terrified and its turned my world upside-down :frowning:
I have been assured that it will be like a tummy tuck - so what little silver lining there may be - I guess thats it…

Hi Jenny

I’m sorry to read of your recent diagnosis, you may find the BCC resource pack helpful, it has been designed for anyone newly diagnosed. If you would like a copy just follow the link below:

BCC have also written a publication on breast reconstruction, the link follows:

If you feel you need to talk to someone in confidence, please give the helpline a call, the staff here are all either breast care nurses or people who have personal experience of breast care issues and are able to offer you advice and help or just a ‘listening ear’ The number to call is 0808 800 6000 the lines open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.

I hope this is of some help to you.

Best wishes

am I the only one with this sort of tumour?

Hi Im Alison 56 years young and jusr been diagnosed with a Phyllodes tumour, hopefully benign, a core bi-op was done and came back non malignant but there is always that little doubt that they got it wrong and reading Jenny’s experience i’m keeping my fingers and everything else crossed they got it right. Meeting the surgeon on Wednesday 11th to arrange op. Doing a bit of research i’ve discovered this type of tumour is very rare but you are not alone Jenny. I hope your recovery is quick and be able to give all those cuddles xxx

Ah thanks Alison - Yes I have heard its quite rare and I hope yours is ok. I am meeting with the plastic surgeon ( Mr Nduka - apparently very good) on 26th June to find out which option of reconstruction he feels is best… still cant get my head round this!

I know exactly how you feel Jenny, i had a week of not knowing, until the results came back, my daughter gets married next year and was thinking how i was going to look awful and spoil the photos and would have to wear a wig, the things that go through your head. The reconstrustion ops they do now are great, gone are the days of stuffing a sock in your bra lol and i’m sure yours will be fine and make you feel your old self again, i hope all goes well. Alison x

Hi Jenny,
i was dx with a phyllodes 6 yrs ago at the age of 36 , which was benign . last year i was dx with lobular bc in the same breast which wasnt so good .

hi, saw the surgeon today, getting my op on Tuesday, a bit nervous but glad i dont have to wait too long, he sounds confident that he can remove everything without being too invaisive as the tumour is near the surface, lets hope he is right. Alison x

good luck Alison - I had my lumpectomy a few weeks back now and all has settled down nicely ( not that it matters as they are whipping the whole thing off soon!!)
My lumpectomy was far less traumatic than I had imagined so I am sure you will be fine . Keep us posted xx

ps - seeing my plastic surgeon on 26th June to discuss options so perhaps I will finally get a date…

well had the dreaded lump removed, you were right Jenny not as bad as i was expecting, stitches all inside so wont have too bad a scar, though the bruising is horendous, now have to wait for the pathology, surgeon confident he got everything so hears hoping. Hope your meeting with your surgeon goes well. Alison xx

hooray for getting through the surgery - well done! The brusing wont last long… all my stiches were inside too - but I had a few that stuck out which I panicked about… if you get any DONT pull them!! ( it hurts!!) In the end i used nail clippers and just clipped them flush with the skin and put a bit of savalon on afterwards - possibly not the recommended course of action, but worked for me!
5 days til meetng with plastic surgeon… 7 days til I go to Tunisia for a weeks holiday… want to look forward to holiday but know it will be operation mastectomy time when I get back - so its a wierd emotion… perhaps if I just run away and stay in Tunisia it will all just go away…

when do you get the results?? please let me know and fingers crossed for you xxx

hope the holiday was great and you managed to relax and enjoy it, i get my results 9th july, cant wait to get it over and done with its like a black cloud hanging over me, how did u get on with your surgeon? Alison x

well been back to hospital and thankfully got the all clear, starting back to work next week, not realy looking forward to that but the bills have to be paid. Hope you are well Jenny and everything is going ok. Alison