Disappointed re: Peer Support

I rang the Helpline requesting Peer Support as I wasn’t sure if what I’m experiencing after bilateral mastectomy and immediate reconstruction with tissue expanders is normal or not. I explained that I was experiencing a LOT of pain and tightness in my chest to the extent that I wasn’t sleeping or resting during the day and that I wanted to speak to someone who’d been through the same process, for reassurance basically. 3 weeks later I got a letter saying that it hasn’t been possible to find me anyone!!!

I am so disappointed. My surgery was almost 7 weeks ago and the discomfort isn’t really lessening, in fact my Consultant has increased my pain medication and started me on Tramadol and Lorazepam which makes me feel sick so I’m now on anti-emetics too!!

I spoke to my Breast Care Nurse on Thursday ans she told me that ut’s unusual to still have this much discomfort at this stage. She also told me that some women are left permanently able to feel their implants in the way that I describe.

Needless to say I’m feeling very down. On the Anerican website Continued Expander Pain seems to be a hot topic with lots of women in the same position as me but I don’t find it talked about much on here. Why is that? Am I SO unusual?

They didn’t find me anyone either!

Sorry you’re having such a tough time. Maybe your BCN might be able to find you someone local to talk to instead ?

Rx

I did mention it to her but she said that a) her Senior colleague doesn’t like them doing that and b) she knows that other people have had a more straightforward recovery than mine!!!

Sorry you are having such a rough time.

I had just the left side done and recon on the other, 4 weeks post op. I can sympathise with you on tightness, I sometimes release my bra to find that it’s me not the bra, feels like a tight band around my chest. Cannot lie on the left as i now am aware of my port. I don’t walk but glide and now I suffer with indigestion! the pain is excruciating and I get relief when I burp like a navvy!
For pain I find Nurofen more effective and I religiously do the exercises. I’m not quite ready for it as my nerves in my back are still like tinfoil on a filling! but a friend who also has BC swears by massage.

Good luck,
OC x

I had bilaterals and recon over 3 years ago, due to an infection had to have them removed, then start again with expanders. Last surgery was December 05 and I still have pain and discomfort from time to time. At the moment left side is really getting me down, it’s a nagging awful pain that makes me feel nauseous, then it will gradually settle again after a while.

Because I’ve put on a bit of weight since they were done about a stone, the breasts are creasing at the top, so I am due to go in for lipo infill later in the year.

You have to be vigilent in the early days just in case of infection, but sometimes I think the discomfort is just one of those things. At the end of the day we basically have foreign bodies in our chest. It’s far less painful just to have the mastectomies and no recon, but then I was 48 when I had mine done, and certainly wasn’t ready to do without my breasts at that stage. I take Ibuprofen 400 mg to help, that often seems to help.

Julie xx

Hi thetrumumshow,

Sorry to hear about your experiences with expanders. I can certainly sympathise so don;t feel you are alone on this.

I had bilateral mx with immed recon using expanders 3 months ago. As the surgeon fully inflated the implants immediately I found the tightness unbearable and couldn’t take a deep breat for 4 weeks at least. I thought things were settling down, but over the last week both sides have been so uncomfortable it has got me down. I have an appointment with the surgeon at the end of Jan to talk about swapping for the permamnet implants - this feels a long way off. Reading Julie’s comments above that 3 years on she still has discomfort doesn’t give me much hope. I don’t want to make a fuss but neither do I think it is right not to be able to lie down to sleep in comfort. The best I can get is half sitting up using V pillow. I’ve tried different support bras but the most comfortable I have found has been secret support vests.

Are you fully inflated? I think it is especially hard when you’ve had bilateral as you can’t rest one side and use your good side, and I definately think this slows recovery overall.

Hope you find something to work for you.

Regards
Misha

Hi Misha

Sorry, I didn’t mean to worry anyone unduly. I have good spells for quite a while and then suddenly get aching for no reason. They have been grotty lately, but I would stress as well I have had some sort of bug of some description as well over the weekend, and I find if I am run down or have some sort of infection of any description then they ache.

I have no problem sleeping, well if I do it’s not down to the implants, but I can get to sleep, however, if I turn over quickly as you would with your normal boobs, then sometimes I feel a bit uncomfortable. I don’t have to prop myself up or anything like that. I am always conscious of them though. I would like to forget they are there altogether, but somehow don’t think that will happen. At the moment they feel a bit hot and achey, but as I say could well be down to infection. I work in a busy hospital and there are so many bugs going around.

Julie

Hi Thetrumumshow and Mum2two

sorry that you could not get a match with a peer supporter they do try there best but unfortunately they sometimes don’t have the right match. I am sure you wouldn’t have wanted to speak to some one who hadn’t been through the same as you and if they are not there well you can’t get them.
I am doubtful if a peer supporter would have been able to tell you if the pain was normal or not as they are are not allowed to give out any medical information they would have probably referred you back to you bc nurse or you could ask the nurse on the bcc website
Hope this helps
Joanni