Have other people experienced difficulty in seeing their original oncologist once their active treatment has ended?
I was diagnosed in June 2008, Grade 3 stage 3; had surgery, chemo and rads and am now on Arimidex.
In Leicester after treatment finishes you are seen yearly, alternating between surgeon and oncologist with mammograms every 18 months on an unrelated schedule. Thus In Jan 2009 I was given an onc appointment for July 2010. (I saw an unknown surgeon for my check in august 2009)
In Feb this year I consulted my BCN re a particular concern that I had and she kindly organised for me to see ‘my’ onc.; I was given an appointment but found on arrival that it was not with my own oncolgist who was ‘not there’
In order to check that I would see definitely him when I had my routine appointment, I checked there and then with the nurse at the clinic and was told that he would actually be on holiday on my appointment day. She was happy to re-arrange my appointment. & assured me that it would be noted that I wished to see him and not the current registrar (who I know is new since 2008)
This new appointment is now set for 2 weeks time- but because of my previous experience I have just rung to check that I WILL see him…to learn that he will actually be on holiday on this revised date!
I understood that a note would be put on my file that I wished to see him but clearly this counts for nothing.
I have now been told that I can re-arrange my appointment (again) and it will be put back a further 6 weeks…and clearly there IS no guarantee that I will actually see him even then, as many patients are seen by the registrar.
I have not seen my oncologist for 20 months; in order to ensure an appointment with him, do I have to go privately?
Hi during my treatment I think I saw my Oncologist twice,once at the beginning and then again at the end, in-between I saw one of his registrar.Since treatment has finished(2 and a half years) I have seen my Oncologist at all of my appointments,started off every six months and has now gone to yearly.I have not seen my surgeon since I got results 2 weeks after surgery.And I have yearly mammograms.
Mel xx
Hi topsymo
For the first year I had no problem and always saw my oncologist - then she went on maternity leave and it has been a nightmare. I have sec’s and need to go back on chemo but am seeing different onc’s ever time I go to hospital and they all say different things!! I have been so upset about it and complained as I just wanted to keep seeing one that knew me but it has made no difference to the extent that I have asked for a second opinion and have an appointment at the Marsden in London for advice about what is the best chemo for me.
I fully agree that we need to see the same onc - you build up a relationship and they get to know you which is so important. Sorry I can’t give you an answer just want to sympathise I fully understand what you mean. Is if worth making a complaint or contacting the manager of that department, particularly when you have been told you were seeing him and then turns out you are not?
Good luck Anne x
Obviously every hospital has it’s own routines, but this sounds similair to what would happen here. Once active treatment (ie, chemo+rads, not hormonal therapies), are completed, the consultant passes the patient on to his registrar, or someone else on his team. He only sees new referrals, patients having ongoing treatment-and patients like myself, who have secondaries, and who are not only on permanent treatment, but who need lots of reviews and adjustments.
It makes sense-it would be virtually impossible for him to keep up with everyone who has had a cancer diagnosis, and continue to treat new patients simultaneously.
Registrars are well qualified and able to deputise competently. If your concern is major-then run it past him in the first instance, and see if he recommends further action. If it’s a less pressing concern, then he would be able to help. So in either eventuality, you would be in a stronger position than you are at present.
Since you haven’t seen your onc in nearly 18 months, he is not going to remember details of your case, and would have to read your notes to familiarise himself with your history. Which is exactly what the registrar would do! I’d stick with your present appointment, and if you find that it is unsatisfactory, then take it from there. But I suspect you may well be pleasantly surprised-when I see my consultant, we are often interrupted by one of his team double checking/seeking authorisation of a point.
Hi
I agree with ElaineD. I work in the NHS and I am currently on treatment. I have only seen the “head onc” twice, once at my 1st pre-chemo appointment and on the follow-up appointment after my 1st chemo. On all my other appointments I have seen a variety of different oncologists, all of them absolutely fine. All hospital doctors see so many people over the course of the year, it would be impossible for them to remember any but the most difficult or very recent patients (if they remember them personally). All your details should be recorded in your notes and a good doctor will read them before seeing you, that would include the “head onc”, as I am afraid after such a long time he is unlikely to remember.
Also we have to realise that with regards to holidays, doctors are human and have families and they go on holiday and sometimes they have to cancel and rearrange holidays to fit in with their family. Also they sometimes have family emergencies the same as we all do, so it is not always possible to guarantee they will be there on the day of our appointment. I feel that as long as a doctor sees me I don’t care who he/she is, only that they are competent and do their job. In fact I have found the more junior doctors listen more and more approachable and I could relate more to them.
Hope you get the answers you want
xxx
Thank you for all your comments; it is interesting that 2 of you feel I am being unrealistic in hoping to see the consultant onc. every 2 years.
I understand from my daughter who also has BC that she sees the same onc and surgeon for all her checks (in Bristol) and although my prognosis was slightly better than hers, I rather assumed that I would continue to see mine as well. If practice varies from hospital to hospital it would be helpful if this was mentioned to patients earlier on: nothing was said that led me to think that I would just be seen by a member of a team- or whoever was on duty that day.I
I had orthopaedic surgery 5 weeks ago, having been seen in outpatients by a registrar and only seeing the surgeon for a few mins immediately before my op and for a few moments on the day following. This was perfectly acceptable for an orthopaedic operation - but cancer is surely a bit different?
Elaine and Bboonie - your comments have left me thinking that I am just another number among the cancer stats … and there was me thinking that I had actually established quite a therapeutic relationship with my onc during our 6 months together!
PS I used to work in the NHS too.
Topsymo-I’m sure you did have a good relationship with your onc. Mots of us do-we rely on them to make us as well as possible, depending on our stage, so it’s natural that we trust them and want to be treated solely by them. The fact that your hospital MAY operate a very similair situation to the one here, in no way negates what has happened in the past-and the value of your relationship…in the past. But there comes a time for many people to move on, and be treated by other members of the team-you must surely see that logistically the consultant couldn’t keep in contact with everyone he has treated in the past. It’s good that you are able to ask to see him specifically-and as you said, you can also go one step further and arrange a private consultationshould you so require.
Why are you so averse to seeing a member of his team? He’ll have been instrumental in training them, and will still be available for them to double check any problems should they arise.
I either saw my Consultant Oncologist or her Registrar. At my very last oncology appointment in 2008 I saw another Consultant who works with her as she was very busy. However, I was told if I wanted to specifically see her I could wait till the end of the clinic, but I didn’t think it was necessary.
I haven’t seen the Consultant Surgeon I was with since 2 weeks after my lymph nodes were removed back in 2006. I now have a yearly mammo and review appointment at a smaller clinic outwith the regular breast clinics, the Consultant there is very clued up on your notes. My breast care nurse told me the more senior Consultants at the clinic prefer to devote their time to seeing the new patients, but they will agree to see you if you are not keen to go to someone else. I found everyone on the team excellent, so was happy with the arrangments, but I do remember it spooked me a bit at the first year review as I expected to see my own surgeon.
Thanks for that Cherub - Elaine has made me feel I am a bit needy in wanting to see my consultant onc.again!
I guess it is down to the usual ‘lack of communication’. I did know as soon as I was diagnosed that I was being treated by a multi-disciplinary team but what I didn’t grasp was that that meant I should not expect to see the head honchos again after active treatment finished- a least not in Leicester where I was treated .
As I mentioned earlier my daughter has BC as well and I have had far too many friends with BC (3 of them now dead)- and their experiences seemed to be different from mine. I saw a lot of my onc during chemo and rads (as I had one or two problems and an admission) and I guess I thought the relationship oncologists had with their patients was of a different order from that between most other consultants and their patients. If I’d been seen frequently after my treatment finished maybe I would not be putting such store by this follw-up - but as I’ve waited 20 months I really can’t see that it is excessive of me to want to see Dr B. in person - whether HE remembers ME or not! Naive of me I guess.
Incidentally, I was seen by on-duty registrars when I was on the ward and also in the chemo suite and I can’t say I was that impressed- they certainly didn’t know my history & only read my file when I was actually sitting in front of them - which is not my idea of good practice.