Does anyone know where it is possible to view the ‘code of practice’ that indicates how our treatment should be undertaken?
For example, I know that we should be seen by a specialist breast clinic within 2 weeks of reporting a lump to a GP - and the NHS regularly exceeds this target which is fantastic - but I don’t know anything about targets for subsequent treatment.
Any ideas?
grumpy
Hi Grumpy
Sorry I don’t know the guidelines but I recently was very unhappy about the length of time I was given to get my first lot of Chemo. The onc had told me it should happen within two weeks but the Chemo Dept said they couldn’t fit me in before 4 weeks had elapsed. After the combined efforts (apparently) of the onc, breast specialist and BCN failed to move the Chemo Dept I took matters into my own hands (at the BCN’s suggestion) and directly (and politely) emailed the Chief Exec of the hospital and also contacted PALS. Within an hour of my emails the Chemo Dept phoned me moving my appt forward by ten days.
So that’s a long winded way of saying maybe, if you have concerns, if worth getting them in writing to the top.
D x
Hi there, if you Google NICE guidelines for treatment of breast cancer you will find a massive document that covers the what, when, how for England and Wales. The guidelines in Scotland are much the same I think.
We need to be careful not to confuse ‘guidelines’ and ‘beast practice’ with absolute rules… so, for example there are guidlines on how long you should wait for rads, but the hospital where I was treated has a waiting list double that just down to the ridiculously large area it has to serve and the vast number of people needing rads. Also, we are all individual, and sometimes there are good reasons for small delays.
If you are conerned that your ttreatment is not up to scratch, then it would be helpful to speak to the PALS people at your hospital.
Hi I have been told by my Onc that I don’t need a CT scan until August, this will be a year since my last one, which was given at the end of Chemo, I had Neo adjuvant chemo,Mx and Rads finished in mid Nov 2011.I am stage 4 ,and although the treatment I have had was very effective I still have a Lung met, very tiny but still there, I am curious how long others have had to wait to see if things are stable ?
Jean
Hi Jean,
This is so weird cause I am on this at the moment my last ct scan was oct last year after mx surgery, I was initially told I would have a ct scan every 3 months and then as time went by every 6 months then eventually once a year but I’m still waiting for my ct scan that was 5 months ago the last one and I’ve since done rads that I think was treating the lungs although this is not confirmed, obviously I want to know what is happening with the lungs and have been to my GP asking him to contact my onc and ask when I was having my next ct scan, my GP told me he would write to my onc asking what was happening with it.
Love and light
sarahlousie xx
Hi Sarah, I was sure I was told I would have a CT scan every 6 months at the beginning, my Onc was confident I did n’t need one , but I would prefer to know that things are stable for my peace of mind. As it happens I have a frozen shoulder at the moment and can’t raise my arm above my head so prob can’t have one at the moment anyway, I wonder if cost is the issue ?
Jean
Hi Jean - ummm I wonder if cost is the real problem as well but we can’t take any chances with this sneaky cancer, and our worries are real, like i said before I think I will go back to my GP next week and see what response he has had from my onc at the hospital, still taking tamoxifen and having herceptin administered to me at home, feel ok at the moment but then I felt ok before I was dx!!!
Glad too hear you are doing ok and you only have one met left thats fantastic news, mine are now tiny and stable as of the ct scan last june, really would like to know if they are getting any smaller or if I am god willing NED that would be a dream come true.
Sending you all the best
Love and light
sarahlouise xx
Thanks to you all for your comments.
I am thoroughly satisfied with my treatment so far - and it’s nearly all over, I’m NED, and it has been absolutely fantastic - it’s because I’ve seen so many posts from others whose treatment seems to be delayed etc that I wondered what the guidelines are.
Revcat - thanks for the link, I’ll look that up.
And of course we all understand how individual we are, and hence our treatment, so I’m sure no-one wants to thump tables and shout unless absolutely neccesary. Where there are difficulties the problem is usually financial/management NOT clinical …
grumpy