Hi Sarah

Please contact your breast cancer nurse regarding the information you should have but haven't been given.  Whilst there is some excuse for shoddy communication re cv you should still be given adequate communication re appointment times at least.  And don't let cv be an excuse not to chase things...don't feel guilty about making a noise (it never stopped me!).

The least your BCN can do is manage your expectations as to when you can expect results which will hopefully make things a little less uncertain for you.

And if you don't feel you're getting anywhere with your BCN then try your hospital PALs service, they should be able to get things moving.

Good luck

Sam

Hi Sarah, 

As the others have said contact your breast care nurse...honestly mine has been brilliant. I'm a bit further along then you as I am having a mastectomy in the morning...but it has not been easy getting here.

Was told last july the limp in my breast was fine but had recurring problem with the right nipple at christmas had to be referred back to clinic and then they found aggressive dcis and some other bits and Bob's that they dont know what it is until they go in.

I was suppose to have surgery 2 weeks ago and went for my covid test which they lost and informed me at tea time the day before surgery. Rang my bcn and she was brilliant and they want you to ring with any worries or problems.

I am on the nhs app patient knows best and all my appointments come onto there as well so I know where I am and i get a email when it is updated...do you have anything like this?? 

Hope you can get some answers soon and once you get going they move quite quickly x

Hayley x

Hi Hayley,

Thanks so much for your reply. I spoke to the nurse today and she was really helpful and put my mind at ease. Chemo start date is now Tuesday due to the bank holiday.

Our situations do sound similar - I found a lump when I was pregnant with my now 16 month old daughter and had an ultrasound and was told it was fine. Then had another scan on the lump after she was born and again I was told all normal. Then, a few weeks ago my nipple started to bleed a tiny bit. Everything kind of went from there really - I have DCIS as well has invasive cancer measuring 10 cm. 

I'll look into the app you mention. 

Good luck with your surgery tomorrow. Keep in touch and take care.

Sarah 

Thank you. I have been in touch with the nurse today and I feel a bit better. I just want to feel like things are moving forward, rather than sitting around waiting. I guess everyone must feel like this though when they're waiting to start treatment.

Hi Sarah,

Had surgery and in Thursday and feel fine...the build up was worse than the op itself.

Amazing surgeon and I look exactly the same just with no nipple and a 4 inch scar....put a expander in so roughly the same size x 

Thinking of you today as you start treatment and fingers crossed it goes to plan x 

Big hugs 

Hayley xx

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