I went for my third routine follow up appointment yesterday expecting to see an oncologist, but instead saw a nurse. I was a bit miffed mainly because I specifically requested to see the registrar I had seen previously because of continuity of treatment. Does anyone else only see a nurse at follow up or is it just my hospital that is doing this?
Hi Cathy
I saw a mix of nurses and doctors throughout my treatment last year. It seemed that it was a real honour if you got to see the consultant. The only people that were constant were the radiotherapists. It’s now 2 months since my radiotherapy finished & I’m still waiting for my 3 month follow-up appointment. I’ve phoned several times trying to hurry this along as I’m really struggling with fatigue & my bowels plus something suspicious was found on my liver following a GP arranged scan to look at my bowel problem. I feel quite let down by the hospital. They put you through an agressive treatment programme which was 10 months non stop for me but have given me no support since. The BC nurses have been poor & I’m fed up with being fobbed off with “that’s normal” & “it’ll take time” Here endth the winge.
So what you’re experiencing applied to me too.
Mildred
Hi Cathy
I’ve had one check up - a thorough breast examination but nothing more - the consultant surgeon disappeared and there was no opportunity to talk to him. There were no nurses available and so in the end I had to write a letter to him with my queries about tamoxifen. I think the procedure for checkups needs reviewing and there needs to be some national guidelines.
Hi Lovelypen
couldn’t agree more. Why do they do this? Do they think we are so stupid that we won’t understand what they say or are they so restricted for time that they dread anyone asking questions. Whatever the reason, it has to stop as we need to know the answers. I appreciate that everyone has different information needs but they should give us the benefit of the doubt and this is why a bit of continuity with the same doctor or nurse would be so useful, mainly because we would feel more relaxed and confident to ask questions. I have to practically bar the door to stop them escaping to get any info from anyone I have seen!
I’m gobsmacked!
I’m living in Twickenham and wonder if areas are different?
I ‘finished’ treatment - surgery/chemo/radio on Xmas Eve 2005. I saw either the consultant or registrar, then the Onc or registrar every 6 months for the first year ( so someone every 3 months).
Since then to now I see them alternatively every 6 months. They always say to get in touch in between if I need to.
I thought this was the norm? Obviously not!
Love Caz xxx
Hi Cathy
Long time since I have spoken to you.
My next appointment is with the breast care nurse in April,(I was expecting to see Consult.) I know it shouldn’t but it felt like it was a cheap way of ticking boxes for an overstretches NHS. I made a throwaway comment about this when appointment made, and they were not impressed. I do however know that if I am worried about anything new I can call and they will make appointment, the fact that when I do see them it feels as though they are paying lip service… sort of go away and deal with it… I now try and ignore any worries about discomfort in breasts, cyst, etc… When I last saw regist. not the consultant who did surgery (have not see him since secnod op. back in Feb. 08). It does feel like a lottery and sometimes you have to kick up such a fuss and end up feeling like an idiot. I have not been very happy with the deaf ears in the NHS and has contributed significantly to my current mental health difficulties.
Hope you are well
Alicex
Hi Cathy
I’m now 2 years away from diagnosis and have had WLE, chemo and rads and up until very recently have been symptom free. Due to being on the TACT2 trial I see the oncology clinic every six months and always see either the oncologist or a registrar (never the same one twice). They always say if I have any problems to get in touch with either them or the Breast Care Clinic. I see my sugeon once a year, but this time when I turned up I was seen by a Nurse Practitioner who told me everything seemed fine. (All this in a hospital with a very poor reputation).I really can’t complain about my treatment or follow up.
However, just before Christmas I noticed some hardening around my scar and immediately after New Year I rang the breast clinic as I had been worrying about it for over a fortnight and wasn’t getting any sleep. The surgeon himself drained off what seemed like an awful lot of old blood and took a biopsy from the chest wall and asked me to come back next week for the results and another look to see if it needs further draining. He seemed to think the swelling was caused by an injury rather than anything else and I can only take him at his word until I get my results. I took the dressing off the biopsy site as instructed and realised the bleeding hadn’t stopped. As it was still leaking next morning I went back to the clinic where they gave me a bag and some dressings and said I could go back any time if the problem continued. Has anyone else had anything similar happen?
Ollie
I’ve had an appointment almost every three weeks for three and a half years, and I would think 95% of the time I have always seen the oncologist. Not always the same one, but two or three - whom I know quite well now 
. They generally have a bc nurse in attendance, who answer all the little queries for me.
Jenny
x
Thank you for all your replies. It would seem that policies vary from hospital to hospital and like you Alice, I do feel “fobbed off” being seen by a nurse, especially as they had the results of a mammogram to tell me. I have no doubt they know their stuff, but they are not an oncologist and for that reason, I don’t feel comfortable being seen by a nurse. Maybe they feel that I am low key in terms of clinical need, but if I thought I was going to see a nurse every follow up, I think I would just not bother. After all, I can do a clinical examination myself and report any anomalies. What I am going to do is write to the consultant (whom I have never laid eyes on yet - and am beginning to seriously doubt if they exist or are just a ficitional figurehead!) and ask s/he why patients are not told at the start of their follow up what to expect. If at the beginning they said, well, you may see a registrar, a nurse or whoever is alive and still standing on the day of your appointment, then I wouldn’t be so disappointed. Sorry if I sound cynical, but I am!
When i asked why I was seeing different doctors/nurses I was told that oncologists spend most of their time seeing secondary patients because
qoute: ‘they are more seriously ill and in most need’
I was shell shocked at the time and it was only when I got home that the implications for me sank in. I agree with you Cathy I think they decide who to see in terms of clinical needs. I have only seen my oncologist once when he made the decision with my agreement to curtail chemo and start me on femara.
At my first 3 monthly check up i waited 3 hours (the clinic was manic that day ) only to be asked a few questions and told to make my next 3 monthly appontment.
Sometimes I feel that primary BC with a moderate prognosis is seen to be low priority in terms of the big picture. If this is the case then there is an obvious need for more oncologists.