Another question. When I go to my pre chemo clinic app I never see a doctor (only on first pre chemo app, but she wasn’t an onc, but a GP that helps out at the clinic). The last two times I always only see a clinic nurse specialist. She is very nice and checks my breast and asks me about side effects I had and gives me advice re the drugs I have to take, BUT if I ask her a specific qustion like “can you point out to me where T9 is?”, she can’t and says the onc could, or what the results excatly mean from my CT scan, she says she can’t answer that. So I find myself leaving the clinic app with unanswered questions just because that onc is too busy to see me and I think I’m not ill enough to get her attention, but how ill can you get than having cancer? But it’s only locally they say and I know there are a lot worse cases for her to see. I get all my info from here and the helpline, so I’m glad this exists for us. But I’m a bit disappointed to actually not see a specialist docotr. They said I can see the onc if I request it, but I need to wait hours for her, but if I don’t request to see her i automatically don’t. How is it with you all?
I am only at the start of my chemo treatment so have only had 2 onc appointments but like you I havent met my oncologist. 1st time I met the Nurse and 2nd time his registrar.
The Professor who did my lumpectomy is fantastic and was totally different, I think its more reassuring if you know and meet who is responsible for your treatment.
I am in Glasgow and saw my onc twice before treatment started. The day before every chemo I have bloods done and see the Clinical Nurse Specialist who asks about SE and prescribes any medication I may need. She is also very good at explaining why the SE affect me and how to manage them.
I haven’t asked her any questions re diagnosis so don’t know whether she could answer them or not.
She also has a calendar of my future tests and told me last time I will have a full review at the end of May with the heart scan before then.
I think she is there to take the pressure off the oncs and I’m happy with her but if you’re worried ask for an appointment with your onc.
It’s just a strange feeling that a doctor is treating me only acc to the papers and results she is getting through, she doesn’t know me. Maybe not important to her, but I feel like more of a number and not like an individual. The clinic nurse specialist (or whatever she is called) checked my breast three weeks ago after 2nd FEC and thought the onc should see this, so she flew in, had a feel around and flew out again, so at least I know what she looks like LOL. But to be fair to her, after my bone scan she phoned me on the same evening to discuss results with me and she was very patient and talked to me for 11 minute which I thanked her for very much. She seems as precious as gold dust in that place.
I have had a wle and snb followed by a double mx, ct scan, bone density scan and liver ultra sound on the way, but I have had no contact at any time with an oncologist. I should add that I was lucky enough not to need chemo or rads. If I had I am in no doubt that I would have spoken to an onc at some point.
It does not bother me that I didn’t because I think that breast cancer is now such a specialised field that the consultant surgeons who deal with it are very knowledgeable re what they find. At least I hope so.
This thread, like so many, illustrates how things vary from place to place. I am in Glasgow and my treatment/follow-up has involved three different hospitals. My oncology was at Beatson (as was rads) and I saw an oncologist every time. My consultant was brill but not always available. One time I saw a useless registrar who really upset me, however after I contacted the BCN I was given an extra consultant appointment and an apology plus had it written on my notes - at his request not mine - that I must only see a consultant. I saw two other consultants, both of whom were excellent.
In Glasgow (and elsewhere I’m sure) they have regular Multidisciplinary Team Meetings (surgeons, oncs, BCNs) which I am sure acts as a safeguard against things getting missed and, as Yamslass says, ensures the surgeons and oncs are all knowledgeable across the board, so to speak.
I think the thing to do, if you are unhappy, is to ask to see an oncologist or a consultant… you may be given a rubbish appointment time as a ‘pay back’ but it might also put your mind at rest.
I would have to say, I found all the nurses, oncs and surgeons I met really superb (useless registrar excepted!). A lot of my follow up is with a fantastic BCN… I guess I’m just a very lucky woman.
I had my last of six chemo’s yesterday. I saw an Onc twice, registrar twice and nurse twice. Although it was reassuring to discuss my case with an Onc they did seem to be over stretched and rush things, whereas my allocated Nurse gave me however much time I needed and the app was more relaxed and leisurely, my Nurse never examined me but she was very informed, and had access to my case notes so was able to answer my questions and offered useful advice on how best deal with S/E’s and what was causing them. The onc and registrars’ gave me confidence in that my interests were important but did seem to speak fast to end the app as soon as possible. That said, my Clinic was always very busy.
As others have suggested, if you are unhappy ask for an Onc appointment. Good luck.
I have seen my oncologist twice, first time to say I would be having rads and tamoxifen and he gave me a couple of leaflets and that was it really, the second time was last week towards the end of my rads and to be quite honest I found him patronising and he wouldnt answer my question with a direct answer - I wanted to know the % risk of recurrance. I will ring my BCN at some stage when I am less angry with the doc and see if she will get the info for me.
The consultant surgeon I have seen once and have had about 10 appointments with a guy they call an associate consultant - I have had so many appointments as I got cellulitis and an abscess - to be honest I have very little faith in this man and have yet to decide if I should talk to my BCN about refusing to see him again, I must admit I feel I only ever contact my BCN with moans and problems.
My biggest complaint is they do not seem to give me information unless I ask a question, I am not an expert so often do not know what to ask and I have little confidence in them giving me all the info I need
Sorry that turned into a bit of a rant, I just find it so frustrating
I also have to pull everything out of them. If I don’t ask I’m none the wiser. I asked re the blood test result and the nurse said she thought I would ask for that and she had it at the ready, but I know she wouldn’t have told me if I wouldn’t have asked.
My hospital also has a multi -team meeting every week, I know because the breast surgeon told me so at DX and said the onc knows now about me. He was very lovely and took 50 minutes to speak to me and my husbnad about my DX, but maybe this was because I paid a private appointment at the time?
All my appointments were via NHS. In my area the Breast Care Unit and Oncology Unit are based at different Hospitals but there is cross site consultations, all chemo and radio is dealt with at one site and Breast op’s at another. My first appointment after diagnosis with my Breast Care Consultant was at a leisurely pace and everything explained, I was asked how much I wanted to know as the consultant said not all patients can cope with the all facts in the beginning, I wanted it all and was given very detailed info and my consultation was not rushed. Then, approx a week later I had an appointment with my Onc at the Breast Care Unit as this Hospital is where the BCN is based and she sat in on the consultation, again this was not rushed, he was very keen to know I understood exactly what my treatment entailed. After the consultation the BCN took me and my husband to a very serene and comfortable private room, she put us at ease and went through EVERYTHING, talked to me about options, wanted to ensure I was OK with the proposed treatment plan, told me all about S/E’s, explained about hair loss and arranged a wig prescription, gave me a very useful and comprehensive folder to refer to which had lots of info regarding dealing with breast cancer, chemo and surgery, lots of contact numbers too. She also pushed for an early pre-op assessment for my sentinel node biopsy to be carried out quickly. She is a very warm and compassionate lady and always hugs me when I’m leaving. Since I started chemo at the other Hospital I haven’t seen my BCN as my care then transferred to the chemo specialist nurse, but my BCN rings me to ask how things are going. Next month I have my lumpectomy so back in the care of the breast team and my BCN, she rang me yesterday to say she would organise an appointment soon to discuss my op, but if I wanted to speak to her sooner I could have an earlier appointment as well. It seems I’ve been lucky, and I haven’t encountered any big problems. My overall experience has been great and I can’t praise the NHS highly enough, from porters up to consultants I have been treated with courtesy and compassion.
Your experience doesn’t sound good, Christine. If I were you I’d contact your BCN for advice, as she maybe able to suggest who you contact to ensure you get some satisfaction, or may (mine would) intervene on your behalf. I hope you get satisfaction soon, whatever, don’t stay silent YOU matter and you must impress that.