Help me help improve treatment and care for those living with secondary breast cancer

Public Archive
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Hello everybody,

I hope you don’t mind me posting here.

My name is Jackie Scully and I have been working with Breast Cancer Care on helping influence government to improve care for those diagnosed with breast cancer.

Back in April, I arranged a hustings with my local MP candidates to discuss how government (both local and national) could help improve the lives of those affected with breast cancer.

 

I’ve now been invited to meet with the elected MP at the beginning of September and this is a real opportunity for me to let the MP know about the issues facing people with bc, and to encourage him to take action.

 

I want to make sure we’re representing the views of people with breast cancer in the meeting and to inform the MP of any problems you may have faced.

 

I’d be really interested to hear your views about what you think needs to improve for people living with and affected by breast cancer, nationally or locally in Greenwich (the main local hospitals in and around Greenwich are Queen Elizabeth Hospital, Woolwich, Queen Mary’s Hospital, Sidcup, The Princess Royal Hospital, and University Hospital Lewisham).

 

In particular, I am keen to source views on:

· Do you have access to a specialist secondary breast care nurse?
· Have you been offered a referral to palliative care for pain management?
· Are there any other comments you have about your care or treatment?

 

If you are able to offer any insight into the above, I would be so grateful. It is such an important opportunity and I want to represent as many views as possible.

Thanks again and look forward to your thoughts.
Take care,
Jackie

 

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Hello Jackie,

I’ve been at QEH for about 6 weeks now, following a transfer from Guy’s due to starting on a trial (not the Belmarsh kind)!

 

To address your questions specifically:

 

It’s a bit different on a trial, as you are looked after by the Research nurses.

I don’t require pallative care (yet), thankfully.

The treatment I have received so far has been very good.

 

My main worry will come if the trial drugs do not stop progression.

 

I think my main concern, like many women with SBC, is around being offered the widest range of treatment options.  I am aware that not everyone posting on these pages is happy with their treatment and quite a few would welcome the opportunity to get a second opinion. In sharing our stories, it becomes evident that treatment varies depending on your area/hospital.

 

Hope you don’t mind me asking… have you been diagnosed with breast cancer?

 

Good luck with your efforts,

 

Julia  

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Hello Anna,

 

Is Jax8 still active? Does she still want feedback?

 

Thanks, 

 

Julia