Hi DJ43, 

Just want to say hi. I was diagnosed with metaplastic tnbc in August. Just halfway through my radio. I'm very sorry you are in the same boat. I think the metaplastic part is what frightens me the most.

Also the effect on my kids breaks my heart. Mine are much younger so they have been shielded from a lot. 

I'm trying to hold on to the thought of the end of treatment and everything going back to normal. I guess you are in the middle of your chemo now. I hope its not too rotten. 

Hi Metaeak,

Nice to hear from a fellow metaplastic person, we're few and far between.

I'm almost finished my chemo, ( just had my 2nd last docetaxel last week, last one due on the 26th) 

I've already had my surgery ( lumpectomy) though do have a little problem with it completely healing, it dries up n then breaks again with every chemo, I should be starting my radiotherapy in April but I think it depends on how this wound does. But yes, very much looking forward to getting it all over with and trying to get some sort of life back.

So will that be you all done after radiotherapy? I bet you're glad, which chemo did you get?

I've only just found out my sub type...matrix producing, did you find out what type yours was? Seems to be a bit hit or miss with metaplastic how much info they give you. It's a scary old situation having such a rare and seemingly aggressive type isn't it. 

I just wish they knew more about it. I think my planned follow up is just yearly mammograms but I really feel they should offer full scans for the first 2 or 3 years with this one too.

Hope your radiotherapy is going smoothly and that you're getting your strength back after chemo.x

I'm so sorry to hear that, how disappointing just when you think you're throught it all! it does seem to be not uncommon for there to be early recurrences with and metaplastic that's what is worrying me with this wound not closing.

My surgeon isn't concerned because I had clear margins but you're not the first metaplastic patient who has got in touch and had an early recurrence on the scar area! I really feel that they need to take this one a lot more seriously as it doesn't behave quite as predictably as tnbc. I gave my small wound a wipe last night and a crusty small lump came away so now the opening is bigger. I think if it hasn't healed by my surgical review next week I'm going to ask for a tissue biopsy just to check that the reason it's not closing isn't because there are cancerous cells present 

I hope your mastectomy goes well, do you have a date yet?

Xx

No date yet, have to have my scans first. Just taking each day as it comes. 

Sounds like a big pain with your wound. Hopefully will be fine once the scar is healed. How old are you by the way? I'm 33,so all this was a huge shock. Everyone else in the waiting room is so much older than me. Very rare to see someone my age. Are the other metaplastic people who have got in touch in the UK? 

I'm 44, diagnosed at 43. Yes I've been in touch with some people from the UK. If you're on Facebook there is a good metaplastic Facebook page, membership only, it's a lot of American and Canadian  ladies but a few UK ones too. 

But encouraging to see a lot of women years down the line from this. Obviously there are some not so good stories but that's the case in all cancers isn't it.  

Are you on the breast cancer now forum? it's easier to send private messages and I could give you my details to keep in touch. I can't see how to do it in this.x

I've sent you a friend request on this site but I think you need to approve it before I can send you a message.x