METAPLASTIC-A rare breast cancer at aged 33!!

[Heidi00123]

Hiya I have just been diagnosed with triple neg Metaplastic breast cancer. I'm 32 (33 in nov). Found lump 5th August and initial biopsy showed grade 3 IDC. Had WLE 30th August and SNB, margins and node clear. The lump was 24mm it grew 1cm in less than 2 weeks. Surgeon seemed upbeat but it concerns me that it rare type of cancer. I will meet oncologist next Wednesday and plan to start chemo 26th. I hope there is a treatment for this type. The info on Internet seems very bleak.
Hope all are well and any info would help me thanks xx

[Leah_BCC]

Hi Heidi - found your post and published it but now it's out of sequence - hope it's not too confusing!

[bigbear]

Ps Heidi, there is a fab Facebook group you might like to join (if you haven't already).It has some lovely and caring ladies in the same boat as us and some are like u just starting out with treatment so it would be good for u to talk to them. Xx

[bigbear]

Hi Heidi,sorry u have to join the MBC Club.so how is treatment going? I hope you aren't finding it too difficult. My best advice would be Try and keep as busy with nice things as u feel able to but rest up when your body needs u to And drink plenty of fluids. Xx

[Heidi00123]

Hiya ladies, my post didnt come out, I too have MBC, age 32, start chemo Wednesday, get in touch xx

[Amore_Dulcie]

Keeping this going..hi BigBear how are you? I am off to the Royal Marsden..i also have a 'spread' too!
I hope you are doing well?
Dulcie xxxx

[June_BCC]

Hello Heidi00123

Welcome to the forums. I'm sorry to hear of your diagnosis, the first few weeks are always difficult when coming to terms with your diagnosis and treatment.

As well as the support you will receive on the forums you might find it helpful to order the BCC resources pack. It has been specifically designed for those newly diagnosed and contains information to help you understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-
http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/resource-pack-primary-early...

You may also like to talk things through with one of the helpline staff, they are there to offer emotional support as well as provide information. The free phone number is 0808 800 6000 and lines are open 9-5 Monday to Friday and 10-2 Saturday.

Best wishes

June, moderator

[bigbear]

So very sorry to hear your OH is very poorly....life is so unfair at times but I hope you continue to try and stay as positive as you Can. Xx

[Amore_Dulcie]

Hi Bigbear thank you for your good wishes...xx We have more dreadful worries now ..my OH is not well and we didnt realise just how unwell he really is..Tests for him hopefully next week...

Dulcie xxxx

[bigbear]

Amore, how r u doing?Hope u are coping ok with things.just Wanted to wish u good luck with your op in july. xx

[bigbear]

Hi krissel, just wondering how u are getting on since u had your op? hope things went as well as they could for u. Feel free to make contact with any of us if u wish. Xx

[Amore_Dulcie]

Bump

[Amore_Dulcie]

Hi Krissel xx how are you now? and where have you gone too! Please PM and the other ladies on this thread..i am having a masectomy in July..
Dulcie xxxx

[krissel]

I am 38 and was diagnoised with Metaplastic Breast Cancer,triple negative 3 weeks ago. I am having surgery to include mastectomy and removal of lymph glands on the 24th May. Just to confuse matters last year was diagnoised with nuro sarcadosis basically again a very rare condition - basically a non cancerous brain tumour on my piturity gland and englarged lymph glands in stomach and chest. my parents have been away and are due back on saturday - which is when i have to tell them whats been going on as they have no idea.
Had my pre op assesment on monday - got my "comfy" but i refuse to touch it or look at it - have hiden it in a draw - all seems a bit unreal at the moment

[bigbear]

Hope everyone going through treatment r doing as well as they can. Sending best wishes to u all. Xx

[libsue]

As I had chemo first followed by a lumpectomy my Onc wasn't aware my tumour was metaplastic, though he did know it was TNBC.

What chemo regimen are you having Dulcie? Good luck.

I start rads on Thurs.

Libby

[Dulcie]

Hi ladies i hopefully start chemo tomorrow..only now a blip as OH has a cough and cold...so fingers x..
Good luck to you with your treatments...and must keep this thread going!

[loupylou]

My Onc is of the same opinion, i had dose dense AC and Paclitaxel which i gather is what they give in USA as well. I hope you are all ok! Lou

[libsue]

Hi everyone,

I'm feeling more relaxed now. My Onc explained that though little research has been carried out on Metaplastic BC, the chemo I had (tax) plus the WLE gives me as a good a chance as anyone with TNBC.

I hope he's right!

[bigbear]

Hope all you ladies who have commented on this thread are doing ok. Xx

[Dulcie]

giving this thread a bump

[loupylou]

Hi Dulcie and Libsue, just adding to what bigbear has said. The FB site is really friendly and there's always someone who's got helpful advice from experience about treatment etc for MBC.

[bigbear]

Hi libsue, sorry to hear you've just been diagnosed with this type of breast cancer&really hope u get any questions u want answering from your onc. Please feel free to contact me, I'm more than happy to try and help u. Wishing u all the best&like I've said already u may like to join the facebook group as there's lots of lovely ladies in there.

[libsue]

Hi all,

Following my WLE last week I had an appointment with my Breast Surgeon yesterday and was told my tumour was Metaplastic. This was the first time I'd ever heard the word. I am now awaiting an appointment with my Onc for a fuller explanation of what Metaplastic BC is. I've already had chemo 2xEC and 4xTax, moving on to Rad's in about six weeks.

It's been interesting reading the posts here, thank you.

Libby x

[Dulcie]

I find the FB site quite a scary place when you are only just new to the whole idea of cancer never mind a rare one! The ladies are lovely over there and i am glad i joined!
I am 64 nearly 65...and i have the same as BigBear in size of tumour..one lump is a 2/3 th other a 3..and i was told that drugs will not work on me. estrogeon?
I need more advice please..after a catalogue of errors and being told cancer free in November..it has grown rapidly in a few weeks..but i have decided to NOT have surgery at all..i hear this will not be good in the longer term....

I REALLY feel for you young ladies ..its a real bummer isn't it?

[bigbear]

Hi nicm& dulcie,

There is a group in Facebook for ladies like us with this type of cancer and I'm sure that if you join you will find lots of supportive advice on there. All the best to you both with your treatment plan. Xx

[Dulcie]

I have been diagnosed with the same cancer today...my head is still reeling! i am down for a masectomy on the 23rd them chemo and rads...no drugs...it wont work on me....

[loupylou]

I hope everything went ok for you Nic

[NicM]

Many thanks June, I will send for the pack.

Nic

[June_BCC]

Hello NicM

Welcome to the forums. I'm sorry to hear of your diagnosis, the first few weeks are always difficult when coming to terms with your diagnosis and treatment.

As well as the support you will receive on the forums you might find it helpful to order the BCC resources pack. It has been specifically designed for those newly diagnosed and contains information to help you understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/resource-pack-primary-early...

You may also like to talk things through with one of the helpline staff, they are there to offer emotional support as well as provide information. The free phone number is 0808 800 6000 and lines are open 9-5 Monday to Friday and 9-2 Saturday.

Best wishes
June, moderator

[NicM]

Hi All,

I have just been diagnosed on Monday (13th) with this type of cancer. Very scared knowing it is so rare. I am having a mastectomy next Thursday (23rd) and keen to get it removed as soon as possible.

Feel comforted to know there are others out there fighting this cancer.

Nic
xx

[mazbaz]

Hello bigbear

I,m now 43 and was diagnosed with MBC last November.

To both you and Bev - there is a metaplastic site on facebook. The site now has about 140 members from all over the world. As you will already be aware MBC is extremely rare, so this site gives fantastic access to other sufferers at all stages and ages. Feel free to join us.

I have got a few medical journals, but they are more related to spindle cell MBC as this is what i have. If you would like me to pass them on to you - feel free to pm me. I am away now for just over a week, but i will pass anything on, on my return.

Maria x

[loupylou]

Hello Bigbear, I'm a bit older than you but I'm also metaplastic triple negative. Thanks Sandra for bumping. I've just found out I don't have the BRCA gene but they said there could be other genetic faults they don't test for. My mum had breast cancer at 29 but we don't know what type it was as it was quite a while ago. Xx

[bigbear]

I have also just found out I'm brca2 positive.

[sandra4]

Bumping this up for loupylou, hope it helps xxx

[bigbear]

Hi Beverley thank you so much for contacting me.I have sent you an emailed-hope u get it.xx

[beverleys]

Hi Bigbear
I'm so pleased to hear it's not just me! I was also diagnosed with Metaplastic BC aged 33 in May last year. I have found one other lady with it so far, she's of a similar age and in germany at the chemo stage of her treatment.
My medical team didn't really explain what this type involves, just treated it aggressively (like you, had 6 FEC then 25 rads and now on Tamoxifen). Anytime I've asked about it I don't get much information as it is rare, but they put my mind at rest about it a bit. I have been trying to research it on the internet and not found much out. Thanks Tina for the information you found out.
Do you know anything else about it? I've got another appt with my onc in May and plan to ask again about it.
Bev xxx

[Tina45]

Hi bigbear,

I hope you get more information given to you by your medical team, being diagnosed with BC is a tough time and you need all the support you can get! This forum is wonderful and has been a lifeline for me since my dx with ILC in Feb10.
xxxxhugs, Tina.

[Sam_BCC]

Hi bigbear

Welcome to the forums, I am sure you will find it helpful and supportive.

If you would like to find out more about your diagnosis or have any questions please do give the BCC helpline a call. Here you can talk to one of our trained members of staff who will be able to provide you with additional information and support.

The number is 0808 800 6000 and lines are open 9-5 Monday to Friday and 9-2 Saturday.

Best wishes
Sam, BCC Facilitator

[bigbear]

Tina, thanks so very much for taking the time to find some info for me. xx

[Tina45]

Metaplastic breast cancer, also called metaplastic carcinoma of the breast, is a rare type of breast cancer that is very different from the typical ductal or lobular breast cancer. It describes a cancer that begins in one type of cell (such as those from the glands of the breast) and changes into another type of cell. Metaplastic carcinoma of the breast describes a range of cancers of mixed epithelial cells (cells that line the breast) and mesenchymal cells (the connective tissue of the breast). Most cases of metaplastic breast cancer start in the epithelial cells, and then change into squamous (nonglandular) cells. Because the cells that give rise to metaplastic breast cancer are not part of the normal breast gland, this cancer does not have estrogen receptors (ERs), progesterone receptors (PRs), or HER2 (a protein found in 25% of breast cancers).
Metaplastic breast cancer is considered an invasive cancer, meaning that it has already spread beyond the duct or lobe at the time of diagnosis.

Extract from Oncologist-approved cancer information from the American Society of Clinical Oncology

Hope this helps.xxxTina

[bigbear]

Finty, Thanks very much for helping push this up the list.

[finty]

Sorry I can't help with this - just wanted to bump it up the list so others see it. Maybe it would be worth putting metaplastic in the title of the thread as well?

[bigbear]

Hi, has anyone else been diagnosed with a rare form of breast cancer called METAPLASTIC?
I was diagnosed with a 3.1cm, grade 3, slightly hormone driven BC july 2009 at aged 33.went through 6 sessions of FEC and 15 sessions of radiotherapy and now on tamoxifan 20mg. But I don't seem to be able to find anyone of any age who has had this type of BC.
So it Would be really good to hear from other people if you have had this cancer too and how you are coping with having a rare BC that appears to have so little info.

Thanks very much.