Freaked out by Personalised care plan! Please advise!

Dear everyone,

                             I have not posted much recently but read all the threads everyday! I think about you all!

I just wonder if anyone can help me because I have received something in the post today which has really unsettled me and is going to have me worrying all weekend.  I have stage 4 BC with multiple bone Mets diagnosed with a pathological fracture of my left femur.  I am ER and her2 positive.  I had taxotere for 6 cycles from June 2013 and from October 2013 I have been maintaining (hopefully) on herceptin and pertusumab.  Anyway I had a brief chat with my GP on Thursday about my personalised care plan.  She sent details of this through and it says on it that my maintenance chemotherapy, is herceptin and pertusumab is due to end late December 2014.  This has totally thrown me into a panic!!! I suppose foolishly thought and had been led to believe it would continue indefinitely!!! The thought of it ending freaks me out as I can just see myself progressing!  Sorry to be a such a nervous Nerys.  It is typical that a letter like that should come on Saturday.  


Any advice gratefully received!



Wishing you all success in your treatments!!!



Sorry to hear you have this worry about treatment possibly changing/stopping. As far as I know ( and I’ve just started the dreaded tax, Herceptin and Perjeta) this will still be funded by the Cancer Drugs Fund until the Fund is reviewed in 2016. There was talk about them setting different criteria about what is allowed, based on costs unfortunately, buy anyone already on their treatment would not be affected. It could just be a bit of a typo on the letter and its likely your GP surgery wouldn’t know anyway, I’d think the oncology team would be the ones to ask. It’s easier said than done but try not to worry over the weekend, as you say these things always happen when you can’t get an immediate answer!
I recently had my personalised plan appointment and I know the fact we’ve even got one freaks most of us out - there is a thread on here somewhere. But the letter I got from my surgery was very well worded and my appointment was also not scary at all. In fact I’m now glad this is in place as I know I can get an immediate appointment with my GP should I need it and 999 and 111 have all my medications and health history to hand, something that hasn’t been the case in the past.
Take care and try to enjoy the weekend, then get on the phone on Monday morning!
Nicky x

Hi Sue,

Give the helpline here a ring, they’re open until 2pm today, the staff are there to support you through this.  Calls are free 0808 800 6000.

Take care,

Jo, Moderator