5 years on- what to ask at final hospital checkup?

I am 21/2 years into my treatment. Have been taking Tamoxifen and having Zoladex injections four weekly for 2 years now. Have had to stop both for 2 months ready to have a blood test to see if I am post menopausal! Had to do this a year ago as well. I have no idea what the blood test will show but am now of the opinion that if the chemicals I am having are not doing their job then maybe I should push to have my ovaries out. I know thats final but I am nearly 51, don’t need them for reproduction so if they are putting up a fight against the medication maybe they should be removed. What does anyone else think?
Also, my night sweats are becoming less and less now. The main problem I have now is that I am hot most of the time, doesnt matter what the air temperature is, I am hot. Can anyone tell me if my internal thermostat will ever correct itelf or not.
Finally, having read some of these comments it’s obvious that seeing an oncologist regularly depends on where you live. I have not seen mine since my medication was started and I have had to keep on top of my treatment myself. If I was not on the ball I feel that my oncologist would have overlooked me for each stage of treatment, because I have had to remind him about the blood tests and have only been made aware of the process because I have prompted them for the information! Has anyone else had this issue?
That said, I am lucky that I found the lump early and it could have been worse so I generally don’t complain. I just get a bit vexed sometimes that the system can sometimes be a bit sketchy because it could be difference between the cancer returning or not!!

Seems a bit of an obvious question but what is the definition of a “Centre of Excellence”? Are most BC patients being treated in hospitals that are NOT excellent?
I had my treatment in Leicester (which someone has said is a C of E ) Don’t want to be churlish but can’t say that my experience there was that special. There have certainly been no blood tests or scans and only 18 monthly mammos since active treatment finished. Onc apps are bi-annual, alternating with surgical apps but I have not seen my own surgeon since my op in 2008 and have only seen a registrar at onc appointments.

Very good point Topsymo - well said. I was thinking the same. If consultants, BCNs etc. like to brand their centre is a “Centre of Excellence” and that makes them feel good about themselves and the service they offer, fair enough. Likewise if patients like to believe they’re being treated at a “Centre of Excellence” and this helps their psychological recovery, fair enough. However, I don’t think you’ll ever hear a consultant claiming that his/her centre is a “Centre of Ordinariness” or a “Centre of Mediocrity”!

I think that the key to this is that everyone’s case is different, consultants will approach things in different ways and if a patient feels uncomfortable with his/her treatment/follow-up plan then he/she should dig his/her heels in and insist on what he/she feels is appropriate and request to move to another consultant’s team/another hospital if not satisfied.

Hi again Topsymo, just re-read your previous post - if you feel strongly that you’d rather see a consultant than a registrar you are entitled to insist. I have done so occasionally in different specialties including oncology, surgery and orthoapedics.

All the best.

Hi, if you do a bit of research, it appears to me that the centre of excellence title is awarded by another body to a hospital or unit and they seem to be connected to research projects they carry out. I am not sure it can be one unless it has research projects going on, so were you offered to go on a research project at your hospital? We have quite a lot running at ours and I went on one myself and have a research team of nurses as well as the usual BCN.Mine was fab and at the time cancer patients had to pay for all their steroid and drug prescriptions but mine were all free as on a trial. I may well be wrong as I have not read it thoroughly but I have seen things like, awarded centre of excellence by the leukemia society for example. They get awarded for a part of their work for example their radiotherapy but this does not necesarily mean they are or indeed are not centres of excellence in other areas like the whole care of bc or any other cancer.My hospital is a centre of excellence for bc reconstruction and there were newspaper articles about this. Maybe do a search with centre of excellence and your area and see what comes up, if you are interested. I am not sure that hospitals offer the survival stats for their treatment of patients but I was told ours several times by the research team. So I presume there may be a league table and they compare their results to the national survival averages. Wouldn’t we like to know that one! PWC I agree it seemed too small an amount but it was other patients who told me it was brilliant and the same as usual so I will check it out if and when i get to the point of being refused a mammo by the NHS. At present I have annuals so don’t need another unit. Chrissyt another route is to have rads to blast your ovaries into decline if you want to find out more about it. Hope you are all ok Lily

Thank you Puffy White Clouds and Lily for your helpful comments. I will certainly check up re the Centre of Excellence thing- i agree that it is probably applied to the larger hospitals who are doing research and trials etc - though I wasn’t involved in any myself.
I guess the reason that I don’t react very well to the title is because being a “Centre of Excellence” was trotted out to me as an excuse for poor nursing practice when I made a complaint about poor practice. ie “this is a C of E and therefore very busy and with large numbers of patients. We are sorry if you are not happy (about the lack of privacy and long waiting times and people being treated like numbers rather than individuals) but it is not possible HERE, to offer the kind of individual attention and privacy that you may have seen in other, smaller units” That really is the gist of what I was told by a modern matron (whatever that means!) As a nurse myself I was a bit hacked off to hear that, as you can imagine.
I agree with you Lily- would be good to see the league table of BC survival!
W P Clouds- thanks for the advice re asking to see my consultant in person. 2 years ago, wanting to ensure that I saw him in person, I actually changed my appointment date when I found out that he was to be on holiday that week. (I rang his secretary to check) ) I asked her to note down that I really wanted to see Dr. B - but when I got to the clinic I was still scheduled to see the registrar. I asked if I could change and this was arranged - but I had to wait until the very end of a 3 hour clinic for the privilege!