aftercare
aftercare nhs N I C E
posted on 21.07.06 8:21 pm
twizzle
i wonder if anyone has looked at the guidelines “Improving outcomes in BC care”
It seems to advocate that once patients have finished their treatment they should have less contact with the hospital staff and rely more on GP’s.
I don’t think my GP would be that useful to tell you the truth and if you want to see them waiting times not good, they palmed me off last time when I had infection ended up in casualty because they told me to make an appointment.
If anyone cares to have a look lread.http://www.nice.org.uk/page.aspx?o=csgbcpublicinfo
Hi twizzle As I’m on annual check-ups lasting less than 5 minutes, I don’t see how I could have less contact with the hospital!
Seriously though, my GP sees very few cases of bc, and I’ve been able to tell her a thing or two, so unless this is a cunning plan by NICE to get us to educate our GPs, I can’t really see it working.
Hi Gandalf I agree with you. However I could imagine this as a way forthe NHS to cut costs again.
after treatment my treatment finished sept 04 My ck.ups were three monthly (6monthly at b.care unit and 6 monthly chemo /rad unit)Jan this year was told at bc unit that I’ll now only be seen by them yearly with mammogram but any worries or concerns and I,m to go straight to them,not my gp I’m not on tamox but my er++pr+ friends who had chemo with me are still attending the breast clinic regulary.
Check ups I finished chemo and rads Jan 2004 - Oncologist signed me off.
I have a yearly appt with the breast surgeon who did my two ops.Well, I have see him in between, because I had a long ropey lump in my breast that was Mondor’ s disease.
They are both adamant they will only do 2 yrly mammos because they say radiotheraphy from mammos can cause breast cancer - makes me wonder why I had 25 weeks of radiotherapy! As I had a non palpable 2 cm tumour, this disturbs me. How will I know if I get a recurrence if the next lump is non palpable? Beats me.
Josey, as you are er/pr++ why have you not been prescribed tamoxifen or Arimidex? I would question this. I would also ask for your HER2 status. I had mine done privately in Nov 2005, as the NHS did not do this test when I was diagnosed in 2003. Thankfully it was negative which put my mind at rest as I would not benefit from Herceptin. It is a much better prognosis my Onc told me than being positive.
Along the line, I still have a great supportive bc nurse whom I can contact for any problems and she gets me an appointment within a couple of days - had some unusual problems, which they have always sorted out.
Hope you can contact your bc nurse or doctors and get on to some kind of hormonal medication - tamoxifen, arimidex, aromasin etc. Your chances of recurrence will be greatly reduced.
Take care, Liz.
herceptin pos? twentyfive weeks of rads is an awful lot Liz-I thought I had enough!unfortunately I’m er-pr-. when I asked about my herceptin statis in Oct 05 consultant said I hadn’t been tested Jan04 when I had my op as it wasn’t routine then, and it wouldn’t make any differance now as I was 12mths over chemo.He said i could be triple neg. I didnt even know anyone hormone neg so he told me to go on the net. I’ve kept remarkably well since considering the amount of stress I’ve had and as for my breastcare nurse- she was non existant.never seen or heard from her except when in with my onc.I honestly think she didnt like me.
Herceptin/rads Hi Josie,
sorry, I must have have a senior moment when last posting to you - I meant to say 25 treatments of rads, not weeks! Must get my brain checked out. My short term memory, and in particular, using the wrong words in context, is appalling.
Like your consultant, my Onc said as I was more than 12 months since chemo, even if I was HER+++ he would not prescribe Herceptin. He refused to get the test done on the NHS and it cost me £125, but worth every penny for my peace of mind. I was HER2-. He said in his letter confirming the test results that this is a much better prognosis than being +.
Breast cancer nurse - could you ask to be transferred to a different one? I had a dreadfully arrogant and patronising Onc - the first two visits ended with me in tears and my husband very embarrassed. Next visit for chemo I asked the nurse if I could see another Onc, and there was no fuss, nor even a conversation, and I was transferred within minutes to a lovely young female Onc. Guess this must have happened before with this particular Consultant.
My bc nurse has been my mainstay - she sorted out every problem I had and I had a few - a seroma in my back that needed draining every 3 days for about 3 weeks, septicaemia in my leg and the arm where I had the chemo, Mondor’s disease in the breast where the tumour was, hip pain that turned out to be arthritis, etc. etc. She has become a good friend and I know I can always count on her in times of need.
I do hope you get your problems sorted - particularly with the bc nurse situation.
Take care,
Liz.