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BCC booklet on secondary bc now updated

4 REPLIES 4
Guest user
Not applicable

Re: BCC booklet on secondary bc now updated

While I never seen a BC nurse on diagniosis, I have a phone call every 2-3 weeks now.
The support I get now is fantastic - any thing - every thing explained to me. district nurse phones on occasion - just in case I need her.
When I had my primary diagnosis the BC nurse was gentel - she told me having chemo was no worst than a bad cold and radio therepy no owrse than mild sun burn.
I felt a real wimp.
Going to down load the booklet as there is always new info coming though.
vercors
Member

Re: BCC booklet on secondary bc now updated

Thanks Leah.
I understand that the original aim was to have a printed version, but also having an electronic version is great. It gives faster access to information. I just now hope oncology departments will hand it out to newly diagnosed secondary ladies.
I did not see a BC nurse on diagnosis, and I understand that they are short staffed. They could email this pack once they are notified of a newly diagnosed patient.

Guest user
Not applicable

Re: BCC booklet on secondary bc now updated

Hi mrsblue and vercors - I passed your feedback to our publications team and they will take a look at the PDF and make sure that the blank pages etc have been removed, so thanks for that.

The resource pack is designed primarily for people to order (or be given by their team) and read the printed version. The PDF is on the website an alternative (and lots of the information is on standalone web pages as well) but please do order the printed version if you'd like to read it in its proper format.

vercors
Member

Re: BCC booklet on secondary bc now updated

Hi Mrsblue,
I have started looking at it and sofar so good, but creating a pdf copy of a print document does not work when it is such a big document. Too many blank pages, big graphics etc. As for the content I have only read 1/3. I also wished I was given such a document upon secondary diagnosis.
Unfortunately I was in no state to look for such information if it was available then (2011). I will try to talk to the BC nurses to see if they could push oncologists to at least mention this document to patients.
On primary diagnosis, we have Breast cancers nurses but there is no one around when the secondary blow hits you in the face.

mrsblue
Member

BCC booklet on secondary bc now updated

I just noticed this
http://www.breastcancercare.org.uk/digital/SecondaryBreastCancerResPack.pdf
Available also as a printed booklet
http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-resource-pack-bcc...
Looks good so far - 137 pages! (though a small point I've noticed, on p.31 I question the statement that bisphosphonates work in the same way as denosumab for bones).
I wish there had been something like this when I was diagnosed with bone mets in 2006. Back then, I had never heard of "secondary" breast cancer !!!

What do others think about the new booklet?