has anyone else been diagnosed with myoepithelioma of the breast ??
my surgeon and oncologist keep telling me that its rare but thats no help in trying to come to terms with it as I can find no useful information anywhere
Hi Janet and welcome to the forums.
Whilst you await replies I am posting to let you know about our helpline and ‘Ask the nurse’ service which you are welcome to use, our specialist nurses may be able to offer you further information about your diagnosis and can also offer support and a ‘listening ear’ at this difficult time.
The number is 0808 800 6000 Mon-Fri 9am-5pm and Sat 9am-2pm, the Ask the Nurse’ servcie can be accessed via the ‘Support for you’ tab at the top of this page.
Best wishes
Lucy
Hi, Janet, you are amongst an elite - a report in 1985 reported only 4 known cases.
There is an abstract here which indicates a treatment method: tinyurl.com/42r7h7
This is another useful abstract: tinyurl.com/4pc8vg
Hi Pheobe, thanks for your response
I suppose I feel so frustrated as from the onset things didn’t go well. I was referred by my GP 2nd November and went for the usual tests, mammogram, FNA, ultrasound. I was then recalled for a deep core biopsy, when I went back for the results they couldn’t tell me anything but suggested that removal of the lump was the best course of action. My op was then cancelled due to an infection i managed to pick up from a work colleague, it finally went ahead 11th feb. i then went back to the hosp 3 times for results to be told “sorry they are inconclusive”. Finally everything was sent to Barts and a diagnosis was given 1st april- 7 weeks after op !! Now I have the diagnosis I can find no info, my oncologist is a bit vague and I am supposed to decide about treatment !!
Thanks again for the links
Jan x
hi janettep,
i’m sorry to hear you are having such a hard time. its difficult when you have something rare to cope with. i’m not sure where you are having your treatment but i note you say that your samples were sent to barts for review. would it be possible for you to ask to be seen at a cancer centre of excellence like christies, marsden or barts before you have to make decisions about treatment. wishing you all the best, keep us posted as to how you get on.
take care, rivergirl x
Well its now 11 days since i asked for a second opinion regarding treatment. The referal letter was scanned the same day and yes you’ve guessed it, still waiting. I phoned hospital yesterday to see if there was any news and got told that 10 days isnt very long and that I must be patient grrrrrrrrrrrrrr. This all started for me November 2nd how patient do I have to be ?? do they not realise that the waiting is the worst part !
rivergirl…I did ask to be referred to Barts as they already have my histology and as its 10 wks + since my op am now worrying that i should have started treatment by now.
On a lighter note I have a 3 yr old granddaughter who insists on kissing my “booby scar” better whenever I see her, will have to put a lid on that one before she tries to whip my top up in a public place…
Take care xxx