Phyllodes Tumour
Phyllodes Tumour I have been asked to move this in order that it is better seen. Happy to do so
BCC Moderator
posted on 1.03.06 11:54 am
geanie
I was diagnosed last March 05 with a Phyllodes Tumour after having a fibroadanoma removed. Had WLE and so far so good. Have just had surgery in the other breast to have another lump removed just waiting for results.
Is there anyone else out there that has had a Phyllodes Tumour diagnosed? Noone seems to have heard of it.
Geanie
—reply to the above posted on 9.03.06 1:32 pm
lucyj
You are correct in saying that very few people have heard of this type of tumor. I recently had one removed and found it hard to find information in medical books.
I went to the hospital for my results, and was told my lump was a Phyllodes tumor. I recieved no information at all except that i will need another oeperation to remove tissue around the same area, which they have since told me by post I won’t be needing. I still have alot of unanswered questions but i’ve found the internet to be fantastic. I hope you have better luck.
Additional information You may be interested to read the further information available on the website. The link is below
breastcancercare.org.uk/content.php?page_id=427
Hope you find this useful
Kind Regards
BCC Host
Yes, I have had 3 removed and I have just grown back another 5.I had a wide local excision the first time round but that didn’t seem to remove it all even though the margins were massive.
I would love to speak to you. Did you know Cancer Research UK are currently studying phyllodes tumours?
I am sorry to hear darkfairy that you have had so many Phyllodes tumours. Your story shows that they are not a one off thing as thought of by some doctors.
I have had no regrowth yet in the side after my WLE after 1 year so I have got my fingers crossed that it will take a long time if ever to regrow. They did tell me very vaguely that there are some areas in the breast that will need further surgery maybe at a later date but nothing more than that.
I had what they thought a was another Phyllodes in my other breast removed in March 06 but thankfully it was just a fibroadanoma. However this is how the other side started.
It seems that women who have Phyllodes have suffred a fibroadoma first, so there must be a link mustn’t there?
I did not know that Cancer research were studying Phyllodes tumours how did you find this out?
Thanks for replying.
Geanie
i am in the process of having a diagnosis made on a lump i recently found. the surgeon i am seeing seems to think that from a FNAC its a Phyllodes Tumour but wants a core biopsy and u/s done to confirm. I am fretting like you woudn’t beleive, and i thikn my husband is in mass denial. Am i alone or are there others who can talk to… i feel so freakish!
becclescake I am so sorry that you have found a lump and all the stress that goes with it.
My husband too is in denial he thinks if we don’t talk about it it won’t come back.
The only thing I can say to you is that if it comes back as a fibroadenoma and they try and tell you its ok to leave it where it is, don’t, have it removed because I too Had FNA u/s, core biopsy and a mamagram and was told it was just a fibroademoma( my second in that breast) and to just leave it. But I insisted they take it out which they did and it was then that it was diagnosed as Phyllodes. So then I had to go back and have a WLE.
As this website proves you are not alone and there are always people who will talk.
Good luck with you results let me know how you get on.
My thoughts are with you
Geanie
Sorry I haven’t been on here for a while
To geanie - my specialist put me in touch with Cancer Research UK as they had sent him a letter asking if he had any patients with phyllodes
To becclescake - yes, I have multiple phyllodes tumours. I’m a bit of a freak case so I’m not sure if I would help or hinder your concern!
I’m on the phpbbserver.com/breastcancer forum under darkfairy so if you want someone to talk to who’s already been through surgery, then please drop me a private message and I’d be happy to speak with you 
If you do have a phyllodes tumour - they show up as “abnormal cells” under FNACs - then it’s a very rare condition.
Geanie - what is WLE? Thanks for your post - but being a newbie - some of the slang or abbreviations are way over my head! What is a WLE?
Should i be stealing myself for surgery if its is Phyllodes tumor?
I guess my main concern is i am still b/f my little one - he’s 11 months but is milk protein intollerant, so refuses all formulas… hence i am still feeding him… i hope to give up at a year, but i guess the outcome of the test will determine if its sooner!
Also will this hinder b/feeding in the future if i have another baby?
So many questions whizzing round - and my brain just cant seemto articulate them! Thats it, I have had enough - I am going to get my nails done!
Later ladies!
Becclescake x
to dark fairy no hinder at all- need to know what i am in for here… post away!
BTW, whats the ettiquette on emailing each other here - is it a strict “forums only” conversation or do people actually make “real” friends here too!?
Ok, i really am off now
TTFN
B x
For becclescake!
Ok, WLE is a wide local excision - basically this is a lumpectomy where they take some of the good tissue away as well as the lump. Normally for phyllodes, the margins are about an extra cm or 2 around the lump. The reason for this is because phyllodes have a reoccurance rate if you don’t remove all the cells.
if you have a phyllodes tumour, you will need surgery, yes. They shouldn’t be left as they can grow very large. I assume you only have a phyllodes in one breast so it shouldn’t affect breast feeding although you’ll obviously have to be careful after the op because you’ll have general anaesthetic and painkillers in your blood that could be passed through your milk. Depending on where the phyllodes is situated, a lumpectomy shouldn’t affect your milk ducts anyway. Cancer Research UK are currently studying phyllodes tumours so I would definitely recommend you speak with them as well.
As for email, I would rather not give my personal email address out in a public forum on the internet (and I wouldn’t encourage you do to the same either!) but if you go to the phbb board then you can send me a private message there and we can message each other. My log in name is darkfairy there as well.
for darkfairy Hi Darkfairy
Thanks fro the extra info…
At least I know what might be ahead of me… I still have not got the results. Both my radiologist and surgeon/consultant are on hols, and their usual guy at the path lab is away too - so its not like i can find out and book up to see them when they return… I have to wait and wait and wait! I hate it!!
The lump is in one breast - the left, and at about 3 o’clock as you look at it - if that makes sence. Its about 2cm in size, and frustratingly, when they took a biopasy, they puctured a milk duct, so i am milk leaking constantly (i thought those days were behind me!)
I guess now is a good a time as any to stop the breast feeding - its only gone on as long as it has as little one refunsed the bottles…
How do you talk to people at Cancer Research? As I am not diagnosed, would it be cheeky for me to talk to them? Sorry, so new to all fo this!
How long have you been a sufferer? Whats your story?
I agree with you re: emails - i was just wondering if people on here actually struck up relationships as it were - or whether its all anonymous postings…
I shall visit the other site you suggested, and have a poke around…
Thanks again for your help!
Becclescake x