Hello
I’m 36 year old and have a history of fibroadenomas (three were removed and the fourth left in situ two years ago). I now have a new lump growing on the site of the one I left in - I’d noticed that it started to get bigger and was getting pains in my breast, armpit and biceps. The specialist who I’ve seen before seemed surprised that my lump was bigger/growing and immediately referred me for a mammogram and ultrasound.
The results of both were inconclusive and he told me that it was either another fibroadenoma or could be a phyllodes - the first I’d heard of it and to be honest everything I’ve read on the internet and forums like this is pretty damn scary! Anyway I’m due a needle core on Monday and fretting and freaking out!
Has anyone else been through this? Boo x
Hello Boocat
Welcome to the forums, this must be a very worrying time for you but you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.
In the meantime maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information.
The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
Best wishes
June, moderator
hi boocat
yes i have had a phlloydes tumor it was a high grade cysto sarcoma phlloydes i had a lumpectomy in october 2011 and then an emergency mx in nove 2011
any questions please feel free to ask
liz
Hi Lizzy, thanks for answering. I’d never heard of phyllodes before last week - do you mind me asking how you were diagnosed? All the other lumps I’ve had were a simple US and fna so I was surprised when I was sent for a mammo! I’m not even sure how long I’ll have to wait for results after the needle core on Monday so any info gratefully received!
Boo x
hi
iam a little older than you so i was
called in 2009 for over 50s mammo my fibro was spootted on this very deep against the chest wall would never have known about it ! because they couldnt get a clear picture of it on the isle of man i was sent to liverpool to the lynda mcartney breast cancer clinic i had mammo ultra sound and core biopsy i was then diagnosed with a fibro they said to leave it this was in 2010 in oct 2011 i was at work on the night shift answered the priority phone and the cradle of my arm touched the left side of my left breast it was sore i felt a hard moveable lump i left work 0500am thinking all would be fine in the morning i went to tescos as you do but when i came home the lump was larger it grew overnight no word of a lie i had sharp pains in the breast and a dull ache under the arm i also had a heavy full feeling in the breast with a large blue vein very visable near the surface i went back to the breast clinic
i had more mammos( ouch )and ultra sound they said i would need a lumpectomy as the fibro had grown considerably no Sh**t they took a 4.5 cm tumor from my breast
4 days later surgery done and dusted i went on holiday whilst there i felt the same sort of pains as before surgery my husband said thats just you healing so i agreed
2 days after i returned from holiday i had my surgery check up to hear the famouse words " sorry to tell you you have a very rare and aggresive type of cancer called cysto sarcoma phlloydes" we need to do an emergency mx first we need scans to see if you have any spread
1 lymph node showed signs of swelling so was advised of mx with chest muscle removal and lymph node clearence all done within 5 days the lymph nodes were all clear but in hr 3 wekks after surgery the tumour had regrown to 4.3cm in size in 21 days
the most important thing with any phllodes benign border line or malignant is clear margins my surgeon obtained 5cm clear margins thank god i did breast exercises when i was flat chested !!!
with phlloydes there is no other treatment chemo is not known to work and radio is not noted by nics in the uk although america use it it has not been proven and accepted by nics in the uk
sorry to hear phlloydes has been mentioned to you and hope this helps you by the way i am the only person in the isle of man to have had cysto sarcoma phlloydes the only good thing about it is i get first class traetment as for a doctor /surgeon to come across this type of cancer in theire lifetime is amazing to them !!!
anything else please just ask i hope this helps good luck with your results if phlloydes is dx stay strong be positive and get rid
take care liz xx
apoligies for any spelling errors just come back from a good night out back in the land of the living
Hi Lizzy, thank you so much for replying and for sharing your experience - sounds like you have had a hell of a time…
My emotions are all over the place at the moment and I am not really sure of anything until the results of my needle-core biopsies are in (the biopsies are at 12.30 tomorrow) but it really helps knowing that this is something copable …
I’m going to try and ask my specialist some more questions tomorrow, will let you know how I get on x
hi boocat
to be perfectly honest mine all happened so fast i didnt have time to think
I got my dx on the thursday morning 11.00am got home 12.10am was back at the hosptal that afternoon for ct scan ,got called friday to get results of scan , bone scan tuesday results there and then and mx wed 13.30 I was home friday lunch time .
I was panicking about my twins birthday which was the day of my surgery so they put it of till the weekend that nmade me determined to be home by then . My surgeon was brilliant he was a locum from london and did every step of my treatment himself .because this cancer is so rare most surgeons dont come across it in theire time they do come across phlloydes but not the sarcoma ones I am the only person on the Isle of Man to have this one the Breast cancer nurses had to read up what little there is to read and learn
when i went back to the doctor to get signed back to work he read my notes and said ive heard the name in med school but that is as far as my knowledge goes !!!
What part of thr UK are you in and has your surgeon handled any sort of phlloydes before ? the most important part of the removal is to get clear margins I had 5cm clear margins thankfully for once i was glad i was big busted .I have got my 3mth check up tomorrow where they will discuss reconstruction and any issues so this time i am going to ask some more questions I just said crack on last time I just wanted cruella out of my breast my first one was 4.5cm and the second one that grew in the 3 weeks between the lumpectomy and the mx had grown back to 4.3cm the mitotic count which was highly malignant was 13 over 10 highfield power They say that most phlloydes are benign so i hope yours is in this belt if it is you will stil need the clear margins as these little bu**ers have a habit or recurring if the margins are not big enough ,any idea what size yours is or where it is situated in your breast ?any pains or blue veins can you feel it near the surface ?
I had my biopsy done in Liverpool Royal in 2010 on the tueday morning and they rang with the results on the friday am so there wasnt alot of waiting .
anything else just shout i hope your turns out to be something less sinister keeping my fingers crossed for you
lizzy c
Hi boo
how did you get on today ? I hope it was good news ?
my check went very well dont have to go back for 6 months now
just a mild start of lymphodeemia so being reffered to clinic for lessons on how to massage and what creams to use hopefuly will nip it in the bud quick
lizzy c
Hi Lizzy, sorry for not replying sooner - had needle core at 4pm yesterday after long wait at hospital( was last on surgery list) and will get my results in the next 7-10 days. Not sure if my specialist has dealt with phyllodes before or if just checking cos of my age, history and symptoms etc. Lump was approximately 2-2.5cm when I saw my GPS now about 4-5cm and easily felt through the skin! Surgeon took four samples yesterday so should get definite answer soon, we had already agreed on a lumpectomy, just need to know what it is so he knows how much to take out - am a C to D cup so hope I’m busty enough to allow for wide margins!
Hope this makes sense and thanks again for all the info x
Forgot to say that’s fantastic news for you xx
WELL THAT WAS SHORT LIVED
the surgeon that seen me said next check up 6 months but the senior consultant over ruled and insisted on a 3 month check up
bit of a bummer but i know its to my benefit
i just hate hospital doctors etc just cant be bothered with the sitting and waiting ,always been impatient suppose i always will
never mind
liz
hey boocat i will say Get well soon to you.
Hey Lizzy, looks like I spoke too soon, but good that your specialist is keeping a close eye on you…
Hey alley, thanks for your good wishes!
I’m recovering from my needle core biopsy - am absolutely exhausted and in quite a bit of pain - and waiting for my appointment to come through for my results…
Will let you know how I get on x x Boo
hi boocat
not nice is it having your boob in a vice and almost a feeling of a nail gun hitting it ! hope its all ok is it feeling like its growing anymore any pains and have you named it ? I called mine cruella !!! yes sad I know
liz
Hi Lizzy, I think Larry the Lump is still growing and he’s certainly giving me loads of pain! If I hadn’t already agreed that he was coming out I’d be begging for the op by now… just need the biopsy results to tell the surgeon what he’s working with!
Boo x
hi boocat
where is larry situated (in the breast)?
cruella was deep against the chest and within 3 weeks was to the front of my boob measuring 4.5cm i was not small breasted 40dd the only good thing was they got 5cm clear margins well of to bed had a brill night out meal then good group at local night night
liz
Hi Lizzy,
Larry started off hiding under the scar tissue of a previous lumpectomy in the top part of my boob near the armpit (I’m sure there’s a technical term for this!)
Anyway he’s now noticeable just under the skin and feels to be about 5cm?
Had already agreed to take him out because he is right under where the underwire of a bra would sit and so v uncomfortable but now he is so much bigger the surgeon has tobe sure what larry is 
Boo x
hi boocat
i sounds like it coud be a phlloydes if it is fingers crossed for benign wont be long now for results
i have read that if it grows close up to the skin and streaches it enough you can see the typical leaf pattern of a phlloydes on the surface of the tumour I couldnt see this although it was close to the surface and the skin was streached and transprent cruella had grown inside the phlloydes so it was a suprise to everyone when the cut it open and found it the patholigist wasnt expecting to find this and the surgeon was even more suprised by it think they where all expecting a giant fibro
liz
So frustrated!
Just spoken to my surgeon’s secretary, he is on study leave this week and then on annual leave until 16 April!!
She said that she has seen the results and there is “nothing untoward” but that I can either wait til April or see his registrar.
I said I wasn’t prepared to wait as we need to agree a surgery date so I have an appointment this Friday at 11am to see the registrar. Argh!!!
not a happy bunny!
Hi boocat,
Unfortunately, surgeons have annual leave… As frustrating as that is…
Also, the secretary is not medical, so am not surprised you are feeling unhappy.