Confused

Hi mounties, have you been given a breast cancer nurse? 

No. Was promised I would be given one but nothing

Hi again , I wonder if your GP could chase it up for you??? It might be worth a call to your surgery. 

Hi 

I'm sorry that I have nothing useful to tell you  but I just wanted to commiserate. I also had excruciating shoulder pain for almost 18 months - this started 15 years after a mastectomy. My GP shrugged it off over and over again - eventually telling me to stop wearing my prosthesis and stop using my arm since that made it worse. Managed to get into a different GP who instantly recognised lymph node secondaries - a subsequent CT scan revealed liver involvement as well. I've since met another lady whose GP ignored shoulder pain and she too had secondaries in her bones.

WHEN will GPs realise that shoulder pain in post-mastectomy women can be serious? It makes me so angry.

As for your not knowing what's going on - that is unacceptable,  If I were you I would phone them and ask what the next step is. Ask them who your breast care nurse is. One thing I've learned is that sometimes you really have to be your own advocate (or drag a daughter/friend etc along with you to be an advocate for you). If you are not happy with your current doctors you can always ask to be referred somewhere else or to someone else. I hope you get some resolution and answers soon. 

. 

Hi

Re your ONC appt, I would definitely ring his/her secretary and say you need an appt 2 weeks after your CT scan to discuss all your test results and plan treatment. You could wait till then and ask for a referral from your ONC to either Pain Clinic or Palliative Care for your pain. If you can't wait that long go back to your GP and ask them to sort out referral. Your GP is the one ultimately responsible for your overall care. (I went to Pain Clinic initially and got Gabapentin but have since been referred to Palliative Care and changed to Pregabalen which is working for me.)

The Denusomab is working on your bones, if Letrozole wasn't right for you there are other treatments available - I swapped to Exemestane when Letrozole stopped working.

Most importantly don't suffer in silence. If the Onc secretary fobs you off speak to nurses who do your Denusomab and if still no joy speak to PALS.

Big hugs xx