Change in breast appearance - scared it’s recurrence

Hi Elvie

I don't have anything to offer by way of reassurance as to what the change in appearance could be I'm afraid, however I just wanted you to know you're not alone on the worry train.

I was diagnosed with triple negative nearly two weeks ago and I think the uncertainty of it all is the absolute worst thing about it wherever you happen to be in the "journey."

You're absolutely right to contact your care team when you can and I do hope what you've noticed turns out to be nothing.

All the best to you x

Thank you so much for reaching out. It does help, I also spoken to MacMillan help line earlier & they were great. Just let me vent & cry a bit. Mainly I’m scared. I also know that a lot of changes can take a while to come through after treatment & logically, having radiotherapy & immunotherapy whilst I noticed the changes it really probably is nothing. 

For you, the one thing I can say is that the treatment is doable. It’s scary because it’s unknown and can be a long program. Everyone is different with their side effects so mine may not be the same as yours and I’m an over sharer so certain things I didn’t hide.

For instance, not everyone loses their hair, but I did. I found a wig claustrophobic & a lot of bald scarfs kept slipping off, so I just embraced it. Got lots of cheap jaunty hats & caps . Also really good for combating other people’s anti social behaviour. After my surgery I was waiting for my husband to bring the car around the front of the hospital & someone came and stood right next to me & lit a cigarette . Plenty of other places to stand & the whole site is non smoking but she came up to me and lent against the wall under a no smoking sign & lit up. I just took off my hat, scratched my scalp & looked her direct in the face & sad “I think you’re going to move”. she did, very quickly.

Main one I found was fatigue - go with it, do NOT fight it, if you need a nap take a nap. Fighting the fatigue will make it last longer & hit harder (obviously this is only from my experience).

Just remember it’s doable. Everybody at MacMillan & Breast Cancer Now are amazing. The Dr’s & nurses at hospitals & GP surgery are all there to get you through this. Let them help. Even if you feel you won’t need help in a certain area, let them. It will take the strain off when you’re coping with something else. If there’s one nearby get in contact with a Maggie’s Centre. They’re great too.

Feel free to reach out on here as well, lots of lovely people.  

Final tip, lean into your sense of humour, sometimes things will get dark in your head so find a positive. eg. No hair on your head also equals not having to shave your legs, armpits, other areas, waxing/bleaching your tash - saved a bloody fortune on hairdresser appointments & hair care products!

All the best xxx

Hi Elvie , sorry you find yourself in this situation after all that you’ve already been through. So, of course you are right to get any changes checked out. I’ve self referred several times since my diagnosis, in between annual checks. Thankfully all were investigated and were not of concern in the end.

I thought I’d share the changes in my own breast post treatment. My nipple hurt after the op, maybe from the blue dye injection? Mine was done once I was under anaesthetic so I had no idea where it had been given at that point. During rads (3 weeks, back in 2019) my nipple got so sore. I couldn’t wear a bra, just a soft crop top. Post rads it pretty much turned black. I also had the rads sun tan square plus redness under my breast. Did all the moisturising before, during and long beyond. Eventually a huge scab fell off (sorry if tmi!) and my new nipple emerged - inverted, a bit like a belly button. And the areola was almost colourless. My breast has sort of spongy areas now and is a bit bigger than the other, despite being scooped out and zapped. I thought it would shrivel a bit. Turned out I have mild lympheodema in it from the rads. Annoying but manageable. There are dips and dents along the side of my long vertical scar (at the side). I asked at some point about the inversion and the surgeon said that stuff gets moved around during surgery and the nipple can end pointing a different way and/or inverted. And things do change over time as the body heals and adjusts. 
Hope you get checked asap, it’s so horrible being back in the limbo land of waiting. Sending love and hugs, HFxx

Thank you so much. I was told there may be changes a few months after but was thinking I was past that point now. Yes the waiting is the worst - even when I was told it was Cancer a few days after was like, right, let’s do this! It’s the uncertainty that the mind f***. Pardon the language. Hugs back at you.