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Possible phyllodes tumour

39 REPLIES 39
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Re: Possible phyllodes tumour

Thinking of you Boocat!

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Re: Possible phyllodes tumour

Hi all

Just to update you i am scheduled for lump removal tomorrow (after a three week wait while my surgeon was on holiday) i will let you know how i get on xx

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Re: Possible phyllodes tumour

hi boocat

that is good news
so glad he agreed to the clear margins then its done and dusted in 1 go
If it is a phyllodes that is the most important part of the treatment
take care
liz

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Re: Possible phyllodes tumour

Hi all

Well I saw the registrar today and was told my biopsy results were normal/ benign and that I can have Larry the lump removed as soon as the bruising from my needle core biopsy goes down. I have asked for clear margins to be taken and he's agreed to take 1/2 an inch as well as the lump. He's also agreed to copy me in to all correspondence with my GP.

I still don't know if it's a fibroadenoma or a benign phyllodes but either way will just be glad when it's out and the final pathology results are available.

Thanks all for your support,

Boo x

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Re: Possible phyllodes tumour

hi goanna
just read your post how long ago did you have your phlloydes removed and how malignat was yours
I had mine removed in nov 2011 it was 13/10 high power
are you the same anna that wrote annas diary on another site

liz

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Re: Possible phyllodes tumour

Hi goanna,

My fibroadenoma was removed two weeks ago, there is a second lump which is more spread out, not moveable, at first I thought it was swelling from the excisional, alas, it is not, although the consultant was aware of the second one, she told me herself, yet she signed me off!

This is a much flatter, harder mass, (I think lump is too strong a word) not painful at all. Right under the incision which has all healed nicely.

Definitely something that is more prominent, and I can feel this one, I could not feel the fibroadenoma I had removed. Even though it was only 5mm under the skin!

Did they remove the second lump at the same time? How are you doing now?

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Re: Possible phyllodes tumour

HI All,

Totally understand the 'lumpy breast' issue too!!

You should get a copy of your notes anyway - I asked to be copied in on everything, which then allows me to read and reread what's written and, of course, decipher the medical jargon too!

My lump was tested with needle biopsy and results were benign fibroadenoma however a few weeks later when they took out that (larger) lump, there was another and both tested as malignant phyllodes! Since then I have found all sorts of information and support from others diagnosed with phyllodes and medical papers and journals that we have gathered and one of the ladies put into an indexed database!! Amazing what you have to do when there is little research or information out there!

Do get in touch if you'd like more information as I know only too well how 'alone' I felt when there appeared to be little information available.

But certainly ask for copies of all the reports. Hugs xxxx

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Re: Possible phyllodes tumour

Hi wintersocks,

I have just been writing to a young lady over in benign conditions who has been diagnosed with a fibroadenoma. She's 22, which of course, is the "right" age to become more breast aware and conditions such as this can be dealt with, with plenty of time.

You are correct, it is vexing, very. I have never had any issues with my boobs till the discharge in 2003, then this subsequent problem that I have now. While I am 100% certain that what I had removed is an FA, that I am assured of, I do have another two masses, which of course could be completely benign also, but clearly, there are significant changes going on, which have been ignored hence my seeking another consultant. I am pleased in many respects, as it has taught me a few lessons, the worry that something is wrong with me, the waiting for results, the whole process has taught me not to take my health for granted and of course, I have learned from here and many other women, to be breast aware, since I am below UK screening age, then vigilance is the only way to get concerns addressed and it may mean that in future, if anything sinister, I just may be able to d something about it!

Mrs F, I am sory to read that you have been stalked by this enemy... I do hope you're doing well!

Re: Possible phyllodes tumour

Hello all Ladies,

I think this is a vexing issue, I too have been told that I had particularly 'lumpy breasts' and over the years I have been to GP's/
hospital on a number of occasions.

I had a fibrodenoma (SP?) removed whilst breastfeeding, and 'normal breast tissue' biopsy result 5 or 6 years ago.

Role on Feb 2012 and I now have breast cancer.

I wish in retrospect I had paid privately for an MRI, as the dense breast tissue, that I was told I had my well have been the start of all this. The radiographer could barely read it cos of this.

I expect it might have been growing all the time, but who knows?
WS

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Re: Possible phyllodes tumour

Hi boocat,

It is helpful, who else to ask other than women who are going through the same issues... My left breast has always been lumpy, which has never caused me any probelms, they have come and gone with my menstrual cycle. In 2003, I had discharge from my left nipple which was treated with anti biotics, it eventually cleared up, there was no testing done at all.

I can't help wondering if this was the beginning, as many growths take quite some time to present themselves...

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Re: Possible phyllodes tumour

Hello ladies, thank you both for sharing and for the advice - I shall ask to see my notes on Friday and write for copies of my full file too.

It's really helpful talking to others who have had "lumpy breasts"like me, thank you x

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Re: Possible phyllodes tumour

Hi boocat,

I would write to your clinic, asking for copies of all pathology and histology on your fibroadenomas. I asked the consultant if I could see mine, which she showed me after the results of the biopsy. This lot I haven't seen, but I know my GP will give them to me.

What my consultant stated was "Good news, it is a fibroadenoma" What the histology stated on testing of the lump actually came back as a complex fibroadenoma.

Hi Mrs Foxglove,

Good lord, you have been through the wringer...

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Re: Possible phyllodes tumour

Hi boocat

Like you I have previous history of fibroadenoma - 4 removed between 1984 and 2006 (ages 15 to 37). A fifth lump appeared (no pain associated with it) which turned out to be a benign phyllodes tumour. My surgeon performed two surgeries to obtain clear margins as, although the phyllodes was benign, they are rather agressive so he wanted to minimise the chance of a recurrence. No trouble with it since but was diagnosed with breast cancer in November and currently undergoing treatment - my boobs have severely let me down over the years! That said my surgeon has been brilliant and always acted in accordance with my wishes.

Hope you get the outcome you're hoping for. Good luck x

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Re: Possible phyllodes tumour

To be honest, i've never seen any written histology - i've only ever been verbally told "don't worry it's a benign lump" or "it's a benign fibroadenoma".

I'd like to see my written notes really...

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Re: Possible phyllodes tumour

Because I am curious, on the histology from all three that were removed, what were the results?

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Re: Possible phyllodes tumour

Hi Sommer, yup lucky me - first one L removed in 1996, another in 1999 and the third in 2004. All three by different surgeons who diagnosed by u/s and fine needle aspiration only.

Went back in 2009 and saw my current surgeon, u/s and fine needle as before but recommended that it stay in as was under scar tissue of a previous op and would be better to "watch and wait" then to remove.

Noticed before Christmas that either that lump was growing or another lump was growing - the surgeon recommended u/s, mammogram, a second u/s and then the needle core biopsy. It was only when booking the needle core when phyllodes was mentioned and I started researching...

Like you, I'm suspicious of all lumps and take the view "better out than in"

Am tempted to ask for copies of all my hospital reports to see exactly what each lump was... boo x

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Re: Possible phyllodes tumour

Hi boocat.

You have had three fibroadenomas removed? On different occasions?

I have done a lot of research on fibroadenomas, and I feel a niggling little thing about them...

Because they are more common in younger women, and breast cancer is rare in younger women, the watch and wait approach is used. In older women, I do think that they are a red flag that significant changes are going on, and that they should be removed. I know that they cannot turn cancerous, but like any other tissue, cancer can develop in them, we don't need them, so why leave them in, especially as age increases risks as we age. Because the cause of breast cancer is not yet known, there are only risk factors, I wouldn't want to harbour any risk at all, and it is proven that they can hide tissue.

Chronic pain is not funny, why should we have to live with pain? Aside from taking endless painkillers, if a person is in pain, then there is a reason for it! I have had chronic pain for six months, more painful now since my surgery, more lumps, am just not happy. I can talk calmly to my GP, and get out my frustrations, which she understands and she agrees with me that there are significant changes in my left breast to warrant a second opinion.

If Larry is causing you problems, then that should be addressed and I hope you find some relief from that soon. I am more relieved today, because my GP listened to my concerns, rather than the "Good news, it is a fibroadenoma" The one that was removed, stated on my histology "complex" my G told me that, not the breast cancer nurse. She said "fibroadenoma" There is a difference and I am very vigilant around it all.

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Re: Possible phyllodes tumour

Hi Somer,
sorry you are not having much joy - fingers crossed your GP will help you with that.

I agree with you the pain is definitely the pits (excuse the pun) - I've had persistent and worsening pain in breast, underarm, shoulder, bicep and chest for over a month now whilst Larry grows and it has been much worse this last week since the needle core biopsy.

I've already had three fibroadenomas removed, and one left in situ, but Larry is unlike anything I have had before in size or presentation and that's why I'm not reassured by any "not untoward" comments - I want Larry gone!

Take care for now, boo xx

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Re: Possible phyllodes tumour

Hi boocat,

Oh wouldn't it be nice if they kept us informed??? I have asked for another surgeon via my GP, as I am very unhappy with mine. Getting the NHS to work for me, rather than me fighting it!

So you have pain in your arm and shoulder? I too have had that, chronic now, since my excisional and it has driven me to distraction...

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Re: Possible phyllodes tumour

Hi Sommer,
I am just venting I think cos this has been going on a while now, it would have been nice for the surgeon to mention last week when he did the biopsy and said "come back in a week for your results" that he would not be available to be seen personally. I'm a medical secretary myself so I know the score but it's different when you're the patient I guess...
I still intend on having Larry removed at the earliest opportunity as he's still growing and giving me pain in my arm and shoulder!
Thanks for your best wishes and take care,
boo

Ps - thanks for the further info Lizzy, I'll let you know what Larry is when he's been taken out!

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Re: Possible phyllodes tumour

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.

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Re: Possible phyllodes tumour

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!

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Re: Possible phyllodes tumour

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

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Re: Possible phyllodes tumour

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

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Re: Possible phyllodes tumour

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

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Re: Possible phyllodes tumour

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

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Re: Possible phyllodes tumour

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

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Re: Possible phyllodes tumour

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

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Re: Possible phyllodes tumour

hey boocat i will say Get well soon to you.

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Re: Possible phyllodes tumour

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

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Re: Possible phyllodes tumour

Forgot to say that's fantastic news for you xx

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Re: Possible phyllodes tumour

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

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Re: Possible phyllodes tumour

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

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Re: Possible phyllodes tumour

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

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Re: Possible phyllodes tumour

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

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Re: Possible phyllodes tumour

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

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Re: Possible phyllodes tumour

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

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Re: Possible phyllodes tumour

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

Re: Possible phyllodes tumour

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

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Possible phyllodes tumour

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