Hello everyone, I found a lump on 5th August. Diagnosed 2 weeks later at the breast clinic with grade 3 IDC following a ultrasound and biopsy. My world crumbled as we had been trying for children and had 2 miscarriages, the last one in may.
Anyway I had a WLE/lumpectomy and SNB on 30th August. I received all my results last week, now diagnosed with Metaplastic breast cancer and triple negative. I am going to see the oncologist tomorrow but it appears they don’t know very much about this rare type of cancer. The plan is to start chemo on 26th.
The breast care nurse rang on Monday and asked if I was ok, my op site is very lumpy and sore still after nr 3 weeks since surgery, also nipple still sore, inverts at times so she going to ask the surgeon to take a look at the end of clinic. I hope it nothing. I just want to get the treatment over and done with. Very scared of losing my hair and being sick.
Hope someone out there sharing my diagnosis, hate the fact its rare, hope they know how to treat it.
Thanks for reading, Heidi x
Hi Heidi
In addition to the support you will soon have here BCC can offer other support ideas such as our helpline and one to one support whereby you may be able to be put into contact with someone with a similar diagnosis as you, the following link will take you to further infroamtion about this service:
breastcancercare.org.uk/breast-cancer-services/someone-talk/one-one-support
Take care
Lucy
Hello Heidi,
Firstly, welcome to the forums. You have been through so much, and it would be hard enough to cope with your miscarriages, let alone a breast cancer diagnosis.
I have triple negative cancer, but not metaplastic breast cancer. However, at the bottom of this opst is the thread where you will find some other women with this type of breast cancer. I believe it has its own site, and the details are on here.
I have just finished treatment for a second breast cancer, so I remember only too well how frightening it is to get a b/c diagnosis, esp when you have a rare type. I think things are a bit easier when you have a clearer plan, and while chemo is hard it is do-able, ssp with support, and there is lots of support on this forum. You could join in one of the threads in ‘undergoing chemo’ with other women going through chemo for example. They have very good anti-sickness drugs, so you should not be sick, alhough you can expect to feel unwell for a few days afterwards. Yes, losing your hair is hard, but it is surprising how quickly we adapt and you cope. You could try a ‘cold cap’ too.
Heidi, I am not sure your post is in the best place to get attention (BBC can you help with this?). Although I dont have the same type as cancer, I wanted to offer you support and encouragement.
Rattles x
Home » Forums » Talk to others in a similar situation » Triple negative
Hiya thanks for the link!! I am finding it hard to navigate this site. Anyway I have found a couple of people so hopefully they will get in touch. Hope your ok, best wishes xx
Hi Heidi,
I’m afraid I can’t help with the metaplastic side of your cancer - but hopefully someone else will come along. There are a couple of other young women I’m in a Facebook group with who are metaplastic TN and are also in a group for metaplastic women. I’ll ask them to get in touch.
I just wanted to say that I empathise with the children thing. I haven’t had a miscarriage - that must have been very upsetting - but my husband and I had just started trying for children when I was diagnosed, so I know what it’s like to not only have to deal with the fears surrounding a cancer diagnosis, but also how horrible it is to feel that your life is on hold as the whole baby thing is on hold. And also the worries of potential infertility caused by the chemo. If you haven’t been put in touch with a fertility clinic, ask your breast care nurse or GP for an urgent referral as you might be able to do egg preservation. However, the ability to do this seems like a bit of a postcode lottery and will also depend on the pathology of your cancer and how quickly you need to start chemo. I had to start immediately and the fertility clinic weren’t prepared to delay my treatment.
I was also terrified of losing my hair and being sick. However, I used the cold cap through my 8 sessions of chemo and although it thinned I managed to keep some (my pic is me about 5 months after my final chemo. I’d chopped it short as thought I was going to lose it). Most ladies aren’t sick. The antisickness meds nowadays are fantasticI have a fear of being sick and honestly thought I was going to have my head stuck down a toilet for 5 months - but although I felt a bit queasy, it was similar to a hangover - not bad enough to stop me from stuffing my face (unfortunate side effect! Most women gain rather than lose weight!! But not all). Some women work throughout chemo and have very few side effects.
I’d wholeheartedly recommend one of the Breast Cancer Care Younger Women’s Forums if any are in your area.
Wherecountry in the country are you based? If south, you could also consider getting a second opinion at the Marsden. Just get your GP to refer you. They’ll have dealt with metaplastic BC before - and you wont have to have your treatment there if closer to home is more convenient.
On a lighter note, life does get good again!! Not the same as ore-diagnosis as it robs you of your safe conviction that you’ll live until you’re grey and old (but don’t forget that most of us will!). But reminds you to make the most of life.
X
Sorry about typos. Flipping iPhone…
Hiya sandy, yes I have joined a Facebook group but most of the ladies appear to be in America, although I have managed to speak to one lady from uk. USA treatment is difficult to compours to ours here. To be honest I’m struggling with all the terminology lol!
I live in Liverpool. I have now met with my oncologist and she has explained a lot. It appears I’m being treated for the triple negative side of cancer rather than Metaplastic, mainly because very little is known about it. Although this worries me slightly I am not going to get hung up on it cos at this present time the cancer is gone so the chemo is just to help prevent it coming back.
The oncologist has spoken to other doctors at local hospitals to check if there treatment plan would be different and they all come up with same thing. She also is reading literature on it, although cos it’s rare there isn’t much data on it.
I was offered IVF prior to treatment but it would delay chemo by 4 weeks. So I couldn’t bare to take the risk. No point storing a load of eggs if I not around to use them! I am very up and down, yesterday I was extremely relaxed about starting chemo (start 26th) then last night I got very tearful after i collected my friend and partner from airport. They had been away to fueterventura and looked amazing and brown. They too are now starting for a family, I just know they will get preggo straight away. I didn’t want to feel jealous but we had to cancel our holiday as diagnosed just 2 weeks before holiday departure and needed surgery. I was upset thinking how easy there life is and that all those things have been taken from us. I feel quite angry at myself for having these feelings because most of the time I am just getting on with it.
I am glad life does get good again as at the mo it feels quite crappy!! Thanks for your reply xxx
Hi Heidi,
I came on to see how you got on. Am glad you found the other ladies.
It is not my place to say this, but I wanted to ask you to make sure in your decision not to harvest eggs and maybe if I share my experience it will help you understand: My daughter was 2 and a hlaf when I was first diagnosed with BC in 2009. I was so scared that I would not be alive for her that there was no question of my taking up any fertility treatment. I was so terrified of the cancer that this was my priroity. A year later though when my life was back on track, and there were family having babies and other mums at the school gate, the loss of my fertility really had an impact on me.
Clearly any decision to delay chemo is very serious and only you and your team can weigh up the risks. There is also another drug they can give you to try and protect your ovaries, but I cant remember what it is!
I have mostly got to a point where I accept that I wont have another baby, and I just feel extremely lucky to have my daughter.
Rattles
Thanks Rattles for ur post. We opted for natural egg retrieval (only get one egg if lucky). This was the way my cycle fell and this would not delay treatment. It has a 20% chance of working but anyway luckily I had an egg and it fertilised the next day. So we have one embryo in the freezer. We now have one tiny chance for the future. I’m glad I did that cos at least I’ve tried.
With IVF I would have got like 10’eggs so more chance but hey I’ve done what I felt was right for me and followed my gut instinct. Pas I’m triple neg the chances of recurrence are more likely within 3-5 years so may have to wait that long to see anyway.
Will ask docs about the drug for ovary protection. Thanks for your input, now quite worried about the chemo. So glad that your 3 years post diagnosis and doing ok. Best wishes xx
Hi Heidi,
I hope you didnt mind. I just think that from experience, when you are first diagnosed you are so frightened, you no longer think of the future. You dont say how old your are, but your periods may return and I have come across a surprising number of ladies who had got pregnant (see above this one!).
This is my second diagnosis of breast cancer, but although I had a triple negative cancer (both times), I had a brca1 mutation- its an inherited fault that increases the risk of breast and ovarian cancer, so please dont let that scare you. In any event, I have done 2 lots of chemo and I am still here. Just picking up after my chemo finished. You will do this. I promise.
Highly recommed joining one of the chemo threads where you can cyber chat to other women having chemo. Or, just read one (ours was the May 2012 one).
Just to wish you good luck and say do ask if you haveany specific questions.
Rattles
Hiya Rattles, no I didn’t mind at all you saying. I am 32. We had been trying for children for 4 years and experienced 2 miscarriages. I do feel bitter that this may be taken from us. But life has thrown some really awful things at us and this is just another blip to get through. I believe everything happens for a reason. So just gotta ride out my cards and see what happens.
I am terrified of what the chemo will do to me. But I hope n pray it will work and I get thru. Thanks so much, take care and I hope u recover quickly from your treatment. Heidi xx
Hi heidi,
Just been reading your posts, I am so sorry you have had to join us here. I am 31 and was diagnosed in may, i have 2 more chemotherapies left, and really it isn’t too bad. You have up and down days, but now I’m getting at least 2 weeks each session of feeling completely normal which is great. The anti sickness tablets are great and there are a handful of different ones, so you can fine tune them!
I have found the hairloss the easiest thing to deal with ( could have done with leg hair loss, but sods law it stayed put), people don’t stare at me with a scarf on and my wig looks pretty good ( infact nicer than my real hair)!
On this site there are loads of younger women going through this and it has helped me loads. Friends are fantastic, but they just don’t quite get it!
all the best for your treatment xox Claire
Hello Heidi,
Very sorry this has happened to you. Don’t know where you live, but have you thought of asking for a referral to the Royal Marsden in London? They have experts there who specialise in Metaplastic BC, and as it appears to be a fairly complex disease, with special treatment requirements, that may be a better option.
There is another member on the forum called Amore Dulcie, who has metaplastic BC, and I’m sure she would be a great help if you contacted her by pm.
Hiya Claire, thanks for your post. Yes I have found these forums amazing and so helpful. I really hope I cope as well as u do, I am such a wimp!!! All the best for your final 2 cycles. Would love to hear your story, take care xx
Hi lemongrove, yes I did try to send Amore a MSG but not sure if she received it. As it happens I have found a group on Facebook and most of the women there seem to be getting same treatment I will be getting and appear to be doing fine. So I gotta hope n pray it all works. Thanks x
Bump xx
bumping up 