Hi was just wondering if there was anyone else out there who had been dignosed with metaplstic BC. i was diagnosed about 8 weeks ago and had a mastectomy 5 weeks ago. starting chemo Fri and after that radiotherapy.
i,m still trying to find information about this cancer, but seem to be covering the same old ground. Any info would be gratefully received.
Cheers
Maria x x
Hi maz, have I spoken to
you on a Manchester thread? My friend who doesn’t use this site was dx with that type. She has had wle, Chemo, radiotherapy. She comes to our meet ups. We are in Oldham area.
Vickie
hi vickie
Thanks for responding. Yes you have spoken to me on the manchester thread. You were the 1st person to respond to me when i was first diagnosedand feeling very alone. You were great and made me feel very welcome. Many thanks for that.
It would be great to meet your friend (seems their are very few of us with metaplastic),along with every one else at the oldham meet up. I,m in Chadderton.
i’ve been reading a lot of the threads recenty and posting a few comments lol. Think i,m getting the hang of it now.
i will keep a look out for postings on your next meet up.
Maria x x
Aw maria, you make me blush 
right I will get on to organising a meet up. Possibly housing units cafe. Are you at royal Oldham? Staff there are great. X
hi vickie
i,m at North Manchester, first place i could get an appointment.
Ooh Housing units cafe - what a treat! Looking forward to it.
Maria x
Hello Maria,
I was diagnosed with Metaplastic breast cancer January 2010, had mastectomy,chemo and finished rads in November.
There is a thread on breastcancer.org discussion board dedicated to Metaplastic BC also a wonderful MBC facebook group set up by a lovely lady called Bena which now has 77 members.
Kathy
Hi Kathy
Thanks, i will have a look on breast cancer org. Have recently found the Mbc group on Facebook. Bena really is inspiring isn’t she.
i do hope you feel well after all your treatment.
Have your doctors been able to give you all the information you need regarding MBC? i still feel very much in the dark and am the kind of person who needs to know everything.
Am starting chemo fri, so at least i’ll be able to ask more questions then.
Maria x
Hi Maria,
like you I wanted to know everything I could about this cancer and spent hours trawling the internet,unfortunately as this type of cancer is so rare there is very little information available.
I now just log into the facebook page,there are ladies on there who are long term survivors,if you look in the discussion seection you will find a lot of very useful information.
The specialist just treat mbc the same as invasive ductal bc as there is no tried and tested treatment for mbc.
I am in the Uk and note the ladies in the US seem to have a more agressive treatment than we do.
I am doing very well and feeling good thanks.
best wishes, Kathy
Hi I was dx with metoplastic BC in March 09. I have been through a nightmare for the past two years and still going through it. I was given a lumpectomy after 4 months of being fobbed off by NMGH saying it was a cist. By the time they took it out it was 6.5 cms. I was immediately put on FEC followed by radiotherapy. By the next scan it had moved to my lungs. I have had taxotere followed by capcitabine. All of the chemos have been inaffective. I have been put forward for two drug trials but didn’t have the right gene mutation for either. I am now at a crossroads and I’m being referred to a lung specialist. I have an amazing oncologist who is prepared to think outside the box and explore different avenues for this, dispite the limited knowledge worldwide on this rare cancer. I live in middleton manchester and would love to meet up with some of you, on your next gathering in Oldham. Wishing you all strength and hope.
Love Lor x
Hi - I was diagnosed with metaplastic BC in May 2009, had 4 FEC, lumpectomy, 2 more FEC, then 25 rads and am now on Tamoxifen and Zoladex for the next few years. I found Bena’s blog whilst doing a search for Metaplastic BC and am also in the facebook group. It’s nice to know that I’m not alone anymore. I didn’t really digest the metaplastic bit until after I’d finished my active treatment December 2009 - my oncologist decided my treatment based on its other characteristics (grade, size, hormone levels), which touch wood, so far seem to have been succesful.
Big cyber hugs to those going through treatment and best wishes to everyone.
Bev x
hi everyone
Many thanks to you all for posting. i don’t feel alone with this any more. i have been on bena’s site on facebook but am still not that sure about what i’m doing (never used facebook).
Bev - i,m so pleased that everything is going well for you. please keep me posted.
Lor - i want to say something fantastic and encouraging, but i haven’t got the words. So instead am sending you massive hugs. I will be trying to go to the Manchester meet up also. i Have sent you a private message x
with love to all of you
Maria x
Bumping this up for loupylou, hope it helps xxx
hi
bumping up because i presume loupylou wants to meet other metaplastic BC ladies
Maria x
Many thanks, much appreciated xx
Hey ladies, I’ve just been diagnosed. Would love to hear from any of you. Thanks Heidi x
Hi Heidi,
Welcome to the BCC discussion forums where I’m sure you’ll get lots of good, honest support from the many informed users of this site. If there’s anything you need to know just ask, there’s always someone who’s got some answers! Also for that added extra support there’s BCC’s helpline staff who are only a free phone call away, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2.
Take care,
Jo, Facilitator