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Metaplastic breast cancer

Caroline1978
Posted by

Hi,

Newly diagnosed stage 2 metaplastic breast cancer. I can't find any info (that doesn't seem out of date) on prognosis- could you point me in the right direction?


Thanks,

Amy

Kelly A - Macmillan

 

Hi Amy,

 

Thanks for your post. It can be difficult finding up to date information when you have been diagnosed with a rare type of cancer.

 

If it’s okay with you I have asked our Librarian and Information Specialist to see if he can find you some up to date information that can point you in the right direction.

 

This may take a few extra days, but we will get back to you at the beginning of next week.

 

Take Care and we will be in touch soon.

 

Kind Regards

 

Kelly -Macmillan Information Nurse Specialist

Caroline1978
Posted by

Thank you!! That would be so helpful, I would love to feel as educated as possible on what I've got.

Thanks again for your help,

xx

Kelly A - Macmillan

Hi Amy,

 

Thanks very much for your patience over the weekend. Our librarian and information specialist has managed to find some information which may help point you in the right direction.

 

There are very few studies available about metaplastic breast cancer (MBC), so any solid information about prognosis by stage is difficult to come by.

 

Therefore, some studies may seem out of date, but are still relevant to help doctors build upon their knowledge of MBC and which treatments may promote better survival outcomes.

 

Two recent studies have looked at predictive factors which could affect outcomes in MPC.   You can find them here and here.

 

Both discuss tumour size, stage and cell type (histotype) when trying to assess how responsive the cancer will be to standard treatments such as chemotherapy and survival outcome.

 

Research into targeted therapy through clinical trials is also showing promise. These are drugs which may be able to target mutations or changes in genes found in MBC which may improve outcomes.

 

Getting back in touch with your breast team to talk through any concerns you still have might give you more reassurance at this time.

 

I also found a charity called the Metaplastic Breast Cancer Foundation. Although this is an American based charity many women share their personal stories on the online forum.

 

Please don’t hesitate to get back in touch if you have any problems opening the links to the two studies. We can always forward these to you through your email.

 

Best wishes, Kelly (Macmillan Information Nurse Specialist).

PLASTIC
Posted by

I also have Metaplastic Triple Negative B C---also have Lupus.

I found this on line I'm trying to get in touch to see how she was treated , she is in America.

Site called Living Beyond  Breast Cancer.www.lbbc.org/.../rare-diagnosis-alysia-pringle

Found it quite reassuring the date was Dec 13 2016 so quite relevant to today.

If you cant find it mail me back and I will send more details

Just going out to have my Picc line in.

C J

mamma3
Posted by

Hi Caroline

I’ve recently been diagnosed with metaplastic cancer. Haven’t got the HER2 back yet but consultant predicting triple negative. I’m booked in for a lumpectomy on Friday. Wondered how you were getting on.


Emma x

Mamma xxx

Caroline1978
Posted by

Hi Emma,

Sorry to hear that - metaplastic is usually triple negative, so you may have the same treatment as me if that happens. I had lumpectomy, followed by six rounds of FEC-T, then radiotherapy. I've finished now, and all is well, just six monthly checkups now - NED (no evidence of disease).


I also found another lady who had metaplastic breast cancer (triple negative also), and she is cancer free three years on. 


There is a metaplastic Facebook page run by a lady called Bena Roberts if you want to check it out. Ask me any questions if you like, I remember how rubbish it is getting the 'rare' diagnosis, more than happy to talk through it all.


Good luck for the lumpectomy xxx

mamma3
Posted by

Thank you so much for replying - especially after the week I’ve had. 

Having any cancer is bad enough but when it’s a rare one you do feel there’s less out there to help you. Medically.


I’ve been given the same treatment plan as you. Just hoping the margins are clear and nodes. It’s making me so anxious. Just want to get on with it.


Did you try the cold cap treatment?


Thanks for coming back to me and I’m so pleased you’re well. I hope to get used to the term NED!


Emma xx

Mamma xxx

Caroline1978
Posted by

Hi Emma,

How did it go yesterday? Hope you're recovering at home now. If I recall I got the results about a week or so later, hope you get good news. Did they have an idea of how large the tumour was? 


One of the good things about metaplastic bc is it is less likely than other types to have spread to the nodes, so hopefully that will be clear. If not then FEC-T will blast it!!


I didn't cold cap. Actually that is my only regret, that I didn't at least give it a go. Nothing to lose by trying it I think. My last chemo (T) was at the end of December, and only in the last week have I got a bit of a covering of fluffy new hair coming through. My hair is unusually slow though, most people have more than me by now! My eyebrows and eyelashes didn't go until the end of chemo, and they are coming back quite well now.


The shittiest bit is the beginning when you've got the diagnosis and chemo and rads all ahead of you. You can do it though. There's lots of support out there - where are you in the country? - there are Maggie's Centres, Breast Cancer Haven centres, Look Good Feel Good courses, Ellie's Friends, Something to Look Forward To...and if you're under 45 I'd recommend the Young Breast Cancer Network on Facebook. Little things to keep you going.


Good luck, you can do it. The surgery is the main thing, so hopefully now you are already cancer free and the chemo and rads are just to make sure xxx

mamma3
Posted by

Hi

Well it’s done and hopefully all out. It seemed to go well. My surgeon (who is lovely) came to see me after and did say I might have to have another operation as he wasn’t happy with the feel of the skin around the tumour - it was knotty. Although he did say that it could be that I just have quite knotty skin. Well why not? I have always been very active and danced until being 20 and also had a physical job (renovating furniture) until a year ago so hopefully it’s another one of my bloody quirks! 


I had the operation on the 23rd and it was my birthday (45) on the 24th. I see it as the best birthday present I could have had - lump free! It was a biggy, 34mm which we knew before surgery.  This is one of the things that I felt so annoyed about - how could I have not felt it before. 


I’m going to try the cold cap - my hair is halfway down my back but I’m going to have it cut shoulder length so that if it doesn’t work I’ll have my wig ready. I tie it back a lot anyway. Just don’t want it noticeable for the kids (I’ve three boys).


I feel fine, bit sore but totally doable. I’m really glad that it’s started because the “nothing happening” has driven me insane. I’m in Yorkshire.


Thank you for such a positive mail - onwards and upwards x

Mamma xxx

mamma3
Posted by

Hi again

Just been for my results today and I’m over the moon.


Nodes clear and on to the next stage. I was incredibly anxious and was convinced that I’d have to have another operation. I even checked with the surgeon on the margins! It was 4mm so massive margin.


Just feel so relieved and needed to express it!


Hope you’re well.


Emma xx

Mamma xxx

Caroline1978
Posted by

Great news!! Must be such a relief. You are now cancer-free :-) Now to double down... Well done, that was the important step!!

Let me know how you get in with the next steps. Take a look at Young Breast Cancer Network on Facebook if it helps, there are lots of women a similar age there.


Good luck and congrats and WELL DONE!! xx

mamma3
Posted by

It’s me again!

Just got my letter through to see my oncologist and it shows as diagnosis “invasive ducal carcinoma (medullary like), triple negative. I’m now confused.


The original diagnosis I was given was metaplastic, yet on this letter it doesn’t. Can a diagnosis change further to the removal of the tumour?


Obviously I’ll ask my oncologist next week (going on the 19th) but just wondered what your oncology appointment letter stated.


Eeeeeeh - it’s never straight forward is it?!


Best - Emma x

Mamma xxx

Elise-Macmillan
Posted by

Hello Emma,

It’s great news about the clear margins, you must be so relieved.

I thought it might be useful to provide some reassurance before you see your oncologist next week.

The answer to your question is that yes, a diagnosis can change when a pathologist can analyse tissue in more detail. Following surgery, the pathologist can look at more tissue and carry out a more comprehensive assessment. Some types of breast cancer can look quite similar on biopsy and that is why a further analysis of a tumour is needed.

I’ve no doubt your oncologist will discuss this with you in detail next week and I’m so glad that you’ve been able to discuss things with Caroline78. There’s nothing quite like the support of someone else going through a similar experience.

 

Best wishes

Elise

Macmillan Information Nurse

mamma3
Posted by

Thank you Elise.

I did a quick recce on the medullary like sub type as I want to be better versed on this as previously I’d only delved into the metaplastic variant. I did think that it may be the case that with more of the tumour to examine things could change.


I shall get myself info armed for both for next weeks visit.


Thank you so much for your mail - very much appreciated - Emma x

Mamma xxx