WOW! I've just had a long conversation with the Nurse Counsellor out of Newcastle Breastscreen re my request to be removed from their email list for mammograms and why!
They have a robust reporting system once they are aware that a woman who showed as 'clear' is then diagnosed with BC. The only way they know of this is either as I did - writing a letter to advise them, or the surgeon sometimes advises them. Otherwise - they just don't know about it at all.
She was a lovely lady & covered most of the points I made in the letter, tho I still can't believe that they are unlikely to advise women with dense breasts that they should have an ultrasound!! They have asked permission to access my scans/reports & will now be doing an in depth review of my Breastscreen film prior to my diagnosis, comparing it to the MG/US I had 6 months later, showing the tumour ..... and will advise me of the results. She will also burn a DVD with my breast screen film & send it to my GP & Surgeon for their records.
I've asked that she email me with a breakdown of the conversation (just so I have a record of it - plus my useless memory will forget most of it anyway!)
I also suggested she read Liz O'Riordan's blog & pass it on to any other health professionals down there to read - as a very realistic and believable account of a health professional's own history of diagnosis and treatment and side effects, plus recurrence.
Breast Screen are notoriously difficult to find an email address for notification anywhere on their websites - so I actually sent my letter to Breastscreen's Facebook page by message!! Otherwise, it is a matter of just putting pen to paper for a 'hard copy' to be posted to them.
It is good to know that it was followed up on - and I would advise anyone else who has received a reminder letter to do the same.
Feel free to use any or all of my own letter in formulating your letter (changing the necessary bits to suit your own diagnosis.) xx
