Have just heard on the news about a Macmillan report saying that follow-up appointments for Cancer patients after treatment has finished would be better provided in the community rather than in hospital- - freeing up specialist staff t o concentrate on those who are still having active treatment. This is so much in line with my own line of thinking - except that it is also my view that there should be a least one hospital/oncologist appointment within 3 months of completing active treatment.
After that I really cant’ see the point of going back for yearly appointments which fill up huge clinics and seem to be just there to meet some hospital or NICE box- ticking protocol.
By co-incidence I had written to my onc on this subject only last week after waiting for 2 hours to see him in Leicester - having previously seen him over 20 months ago.
What do others think?
I just heard the end of an interview about this on Radio 4 this morning - I was wondering of anyone would post about it, so thanks topsymo:) The snippet I heard was also suggesting that it would mean a quick appointment if there was something worrying you - rather than waiting for up to 3 or 6 months for the next scheduled check up with the onc - which is far too long if it something potentially serious. This makes so much sense - I hope they implement this policy.
I also attend the Leicester hospitals and having had 3 recurrences have spent hours sitting in the waiting rooms especially at Glenfield. They are run off their feet with yearly check ups and I think it would be wonderful if something more local was available.
Someone waiting for results as I was recently has to sit there for hours feeling nervous, I think this should be dealt with separately.
Will be there next Thursday might as well right the morning off.
Fine to go to your GP if you ever see the same one twice. Which I don’t. I personally value seeing the people who treated me in the first place. And yes it means a wait but yes I have had further problems.
I really feel for the NHS with this. And have volunteered with MacMillan at my hospital and still do. But this is a bit broad brush for me.
Let’s all wait until we hear what is actually the truth>
I only see a consultant surgeon for a review once a year, about 3 weeks after my mammo. My last oncology appointment was 3 months after I finished Herceptin. I wouldn’t be that happy if I had to go to my GP surgery as I found they were quite ignorant about breast cancer and the drugs used to treat it. The GP I saw regularly was surprised when my skin broke down and started weeping at the end of rads as he didn’t know this could happen. He also thought Herceptin was a one a day tablet!
Hi
This is an interesting post-I can see the argument behind streamlining follow up appointments, but I wouldn’t be happy to see my GP at all-there just isn’t that specialist knowledge there.I had false reassurances for ages, and the GP I now see since bc-who is great- is the first to recommened I discuss certain things with the hospital team. Like Dylis I value seeing the specialist team.
c
This is interesting. I didn’t hear the report on the radio but spotted this story on the bbc website which relates: bbc.co.uk/news/health-11241407
It doesn’t specifically say that GP route better for follow up care - I for one would not be happy with that as have also been badly let down by them - they absolutely don’t have the specialist knowledge. Neither do I feel that the once a year check is very helpful either. The two I had before my secondaries were diagnosed were very brief after another long wait (I’m another Leicester girl so have experienced the very long anxious waits at Glenfield and the Royal) and with doctors I’d never seen before. I like the idea of the doctors identifying those likely to be at higher risk of recurrence and tailoring follow up accordingly, though recognise that of course there are always going to be some that had a very good prognosis but who nevertheless had a recurrence. it will be interesting to see how this pans out and if action is taken.
By the way, does anyone see a breast care nurse rather than a doctor at their follow up appointments? I gather this is starting to happen in certain hospitals though I think for those who are a few years post initial diagnosis.
I wouldnt like this at all, there is something very reassuring about haveing regular check up appointments after a cancer DX. It gives people a chance to express any new concerns or any ongoing SEs from treatment ect with the medical teams that know and treated them . There are also times ect as in my case when my hormone therapy was changed because of a change in menopause status , i doubt my GP would have even realised that my meds needed changeing, apart from anything else i think the time after treatment finishes is the most worrying time of all for a lot of people as they can ofen feel after such intensive treatment cast adrift and left to"get on with it"
This is Cancer we are talking about after all, not a Hip Replacement,( no offence to anyone with a Hip Replacement) and the risk of recurrence is at its highest in the first 2 yrs post DX gradualy decreasing as time gos on ,though as we all know we are never told we are cured.
To me GPs are GPs “jack of all trades, masters of none” some are good and some not good, mine asked me what MDT meant! didnt give me a whole lot of confidence.
Im 3 yrs post DX and seen every 6mths alternating between breast clinic and onc and will be having regular appointments at the breast clinic for 10yrs ,and very glad too.
I think the responses to my post indicate the breadth of different experiences we have had at different hospitals. I am particularly interested in the people who are being treated in Leicester as I have been quite unhappy over many aspects of my experience there - not least the awful waiting which I do not think occurs routinely everywhere else. I too remember waiting over 2 hours for results at Glenfield and being in a real state by the time I was eventually seen- a very poor patient experience.
I accept the point that many people would be unhappy with just being seen by their GP- I certainly do not have a great rapport with mine and I know GPs are very often not clued up about BC (I believe the average GP only sees one case of BC every 2 years -so how could they be expert? It may be different in large practices where each of the doctors has a specialism)
Maybe one answer would be to train many more BC & other specialist cancer nurses - and for them to hold their own drop-in clinics? (as with the nurse practitioners in other areas of medicine) I certainly think they would have more knowledge and experience than most GPs & they could be more accessible to patients -and with good access to the hospital teams if referral was thought necessary.
lindiloo - I think your 6 monthly appointments are more frequent than average: I was seen 8 months after the end of my rads (I am stage 3 so my prog isn’t particularly good ) but since then I’m only seen yearly - and with no guarantee of seeing anyone I know or have seen before, so there is no personal relationship that might in itself provide reassurance.
I really don’t see how yearly appointments can reassure anyone- if one has queries about one’s medication, side effects etc , waiting for 12 months for advice or reassurance isn’t much good is it?
Hi topsymo,
I guess ive been lucky in that at nearly all of my appointments i am still seen by my onc, and on the rare occasions that i havent i know i could have still requested to see him personaly if i had wished, i have also always had telephone access to my oncs secretary if i do have any concerns and would be seen in clinic quite quickly if nessesary between appointments ,so that is very reasurring for me too.
I was at the clinic earlier this month and asked while i was there "would i be discharged from oncology after 5 yrs, they said proberly yes , but they were also keen to tell me that i would always remain a patient and should i have any future concerns i only had to ring up and an appointment would be made for me to be seen in the clinic usealy within a week .
The Mermaid Centre (my breast Clinic) have already given me my followup letter which says i will continue to have appointments for check ups with them for 10yrs and mammos every 2 yrs for life.
I know every area seems to be different (im in Cornwall, treated at Treliske) but it seems a bit of a lottery again unfortunately doesnt it, which just isnt right, re appointments and protocol , im realy sorry that you havent had a good expierence at the hospital where you have been treated and can understand why you feel as you do.
all the best to you
Linda x
The first GP I saw after my diagnosis just said “whoa - can you stop there, because I don’t know anything about breast cancer” - not exactly confidence inspiring. Another GP refused permission for me to be referred for counselling by my breast clinic and was overruled by the oncologists. The psychologist I saw kept it absolutely private and said she did not have to inform the GP, so they don’t know about it. My OH was absolutely furious as I was really struggling emotionally at that point. I also had letters sent to my file marked “no action”, yet the Consultants had recommended something (one said I would benefit from some counselling). At the time one of their receptionists had BC, so I hope they were a bit more sympathetic.
I’d change, but it’s very difficult getting into another surgery where I live, so it’s a bit “better the devil you know”.
I know its a hassle going to the hospital and yes, lots of waiting and I haven’t seen the same oncologist twice (probably because I am low risk, so I accept this happily). But no, no, no I would not want to see my GP. In fact, they are so ignorant when it comes to cancer, its scary. I had to fight to get my initial appointment and my son, who has just been diagnosed with testicular cancer was turned away with a possible cyst until I kicked up a fuss and was diagnosed later that week with four tumours! In my opinion, GP’s are OK if you have a common chronic condition or the flu, or a in growing toenail, but other than that, give them a wide berth.
Good point finty. Important to read what Prof. Maher actually said.
I do think the idea of more specialist nurses really could be the answer.
I know I would rather be seen ‘properly’ by a specially trained & experienced nurse (as with the excellent nurses in the lymphodoema clinics) than go to my GP …or to see my oncologist for 15 minutes a year
I have had a lot of problems since treatment and really value seeing my surgeon or oncologist in follow ups. Their specialist knowledge is invaluable and does a huge amount for peace of mind. I think if everything is straightforward then it sounds great but being realistic there must be a large number of people with problems or anxieties that the Onc or surgeon can alleviate straight away or order the appropriate test etc.
If I hadn’t been having this follow up it would have double workload with me first having to go to my GP to be referred and then on to hospital. I live in a rural location and getting to my GP and hospital is not easy, so two appointments would be a complete nightmare.
I have a fantastic GP with excellent knowledge but she isn’t a cancer specialist. I think I am extremely fortunate that if I am having any problems I can get an appointment with my surgeon or Onc usually in the same week.
I think a ‘one size fits all’ approach is never going to be okay.
That BBC link is interesting, and a well balanced report I think. I feel that my hospital have been pretty good at some of the things mentioned-such as having in place support post-treatment,recognising the psychological impact, having appts to discuss signs and symptoms to look out for.