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

25 REPLIES 25
topsymo
Member

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

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!

Lily200
Member

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

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

Guest user
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Re: 5 years on- what to ask at final hospital checkup?

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

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.
topsymo
Member

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

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.

Guest user
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Re: 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!!
Guest user
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Re: 5 years on- what to ask at final hospital checkup?

I'm a big believer in "you get what you pay for". A fully reported mammogram for twenty five quid??????!!!!!!! I certainly wouldn't feel confident in any organisation offering such a service.
pollym
Member

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

Hi everyone,
like many of you I have just passed the 5 years of Tamoxifen. I had a blood test to see whether I was post-menopausal. The blood test showed I was peri-menopausal apparently. So, the doc said that was it, no Tamoxifen any more and nothing else either!

Originally, I had grade 2, 4 out of 6 lymph nodes positive, her 2 positive and oestrogen positive. She said my outlook was good but that it could still come back. She said there was no benefit to taking Tamoxifen any longer.

What I dont understand and perhaps some of you clever ladies could tell me is why you get treatment for longer when you are post-menopausal? Is it more likely to come back if you are post-menopausal. I always thought it might be the opposite.

I am glad to stop taking it as I have some symptoms which I think are due to Tamoxifen and I would love to get rid of them! However, I am also scared at the thought of all that Oestrogen romping around my body!

Pauline

Lily200
Member

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

Hi, lemongrove thank you for your kind words and I shall just be thankful that I can keep it in mind and hope to be fortunate to stay that way.My best wishes to you and for your current treatments.Hazelmary it is good that we are both reasonably happy with what we are given and I think the best thing any team can do is to make people feel confident that their treatment is as good.I complained about a chemo nurse who approached my port with her great big needle and said I don't think I am going to be able to do this and then missed the whole port and stuck it in me instead and not just once either! I had heard that mammos are expensive privately and I have not followed the lead up yet but it was to another area locally where it was offered for £25 to anyone. Seems cheap so i will have to look closely at who checks the results of them. I don't really understand what little things could show up that they would not be able to identify. If they couldn't identify them as not being BC then I sort of feel I would want to know so they could be checked. That is most likely simplifying the issue as my medical knowledge is limited, did they say what the little things were? I thought the NHS mammos were every 2 years so i will have to check that too when i go next month. Cherub i note you are on anuual ones in your area. MandH I was sorry to hear that you were upset on the day and still have unanswered questions, the GP sounds a good idea or the BCN? I am on letrozole and there are several manufacturers so I am careful to keep the same ones as I have no side effects now. I was worse on tamoxifen and felt like I was wearing concrete boots, really hard to bend at all on getting up in the morning. I also put on weight and the doc said not to even bother trying to shift it while on it still. I changed to femara and by the 2nd day the stiffness had gone in my ankles and feet. I was told to expect it to be worse and that it tended to make your fingers and hands ache. It hasn't done this and I lost quite a bit of weight quite quickly and have continued to lose weight, when dieting. The tablet coating is often responsible for side effects. I insisted on having nolvadex-d an expensive tamoxifen brand after reseraching the better side effects and had no flushes on it. When it was not made I pushed to move to letrozole (femara) and the chemist told me that a cheaper version had come out. He checked the coding and found me a brand that was exactly the same and only orders that one for me but world supplies are short so stay ahead on ordering repeat prescriptions. he has to fax my prescription before they will release my tablets. Its worth it as no side effects now. Wishing you all well Lily x

hazelmary
Member

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

Hello
Lily200 I was diagnosed in 2003 and finished rads in May 2004 then on Tamoxifen 5 years, I asked the question about scans way back then and was told that scans show up every little thing and unless I had symptons they would not do any scans, even though I was private and still am they have never been suggested. I do have a mammogram every year, my surgeon thinks these are not necessary and he would probably have discharged me 3 years ago but I have pushed for it every year although we have agreed that next year will be my last with him and then I just go to 3 years on the NHS. The cost of the mammogram I had last year was about £150 and then consultation was £95.
MandH I have been on Letrozole 4 years next April. Firstly I was okay on Tamoxifen, put on a couple of stone during treatment and it stayed me all through the Tamoxifen. Its most odd with Letrozole, well I am the odd one, I have had no aches and pains at all that I can associate with Letrozole and I know most women have had these. I have had 2 bone density scans and they were normal. My problem is my mouth, started getting a dry mouth about 6 months after starting, then burning sensation on lips, my GP and I had gone all through the various treatments, antibiotics, mouth washes etc etc. My Onc gave me 6 weeks off Letrozole to see if it was that, it improved but I don't think it was long enough. Anyway then I was referred to an Oral clinic on the NHS and diagnosed with burning mouth syndrome, which 1 in 3 menopausal women have(I have never met anyone) There is no cure, they don't really know what causes it (I have read somewhere that it is due to low oestrogen, that must mean Letrozole is working) and I am on a low dose of nortriptyline.
The 2 stone that I had put on has now disappeared and I have now the problem that I cannot keep the weight on. I have just had blood tests and a chest xray and they have all come back clear.
So thats where we are. I would just say that everyone is different. I have 18 months to go and I intend on staying on it, that will mean I have had 10 years hormonal drugs and thats it for me I think.
Good Luck
Hazel

Lemongrove
Member

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

I have secondary BC so will never be signed off, but I do sympathise with you. For those who no longer have the comfort of a medical team to monitor things it must feel like freefalling. All I can say to make you feel better is that the medics are still there in the background should you need them. If you have the slightest reason to suspect all is not well, you can always go back to get things checked. Also if you don't feel confident relying on your own instinct, and would like reassurance that everything is OK, why not consider having an annual mammogram carried out in the private sector?
Good luck and in the nicest possible way, hope you don't ever need to return here.

Lily200
Member

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

Hi, no I am in Essex so way down south, sorry Suziex. Lisa and I have chatted online throughout our treatments, so over 4 years as online buddies and we have always noticed huge differences between the hospitals. I am not sure if ours will stay as good now our lovely prof has retired as head onc. He was a keen research follower and changed treatments the minute any better stats came up. He told me he was disappointed that his results had not hit 90% success yet because that's what he thought they should be able to get and he used to get drugs by appealing when there was no approval for them. I think the private medical insurances agree to whatever the consultant recommends and I am surprised you haven't had them hazelmary as 'private' friends have scans galore here but my only experience is 2008 onwards, so maybe things changed between yours and mine. Friends of mine with private cover were being given avastin here a long time ago, when I wouldn't be able to have it on NHS.It is not really clear why things vary so I hope everyone is in a system that works for them. I was told by other patients that I will get moved to 2 year mammos (after 5 years) and I am thinking of going for private ones inbetween. I was told you can have them done as cheap as £25 but have not checked it out yet. Although I hate going for check ups, I get a great deal of reassurance from what they tell me and it is always just 6 months to the next one. Its going to be like being weened off a dummy if I stop altogether 😞

cherub
Member

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

I passed my 5 year mark at the end of last year (diagnosis was Stage 3, Her 2 +, with 1/23 nodes involved). I was given an approx 2 weeks after my mammogram and whilst the mammogram was clear, the surgeon felt the scar tissue at my lumpectomy site should be checked out by ultrasound before he discharged me. I was given an appointment 2 days before Christmas which scared me a bit as I thought if anything else was wrong it would be difficult to cope.
I contacted my breast care nurse and she went to see the Consultant Radiographer who managed to offer me a cancelled appointment, although she said if nothing had been available whe was willing to do an extra appointment for me before her clinic started as she realised the circumstances. She also said she'd give me the result verabally whilst I was there. Thankfully everything was fine.
I'm now on annual mammos for the next 5 years, next one is on Oct 22nd.

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

Thanks for all the posts, interesting reading! I am now signed off on the clinical side as of today but the consultant (yet another one who I had never seen before) said I should go on Letrazole for 2 years, which rather threw me- said there were side effects and I should have a bone density scan but then gave me a prescription there and then! I went a bit pathetic then and ended up not asking enough questions, silly me, I shall go & see GP & do some research before I do anything...Hazel, how are you finding Letrazole? And ladies that come off Tamoxifen- any side effetcs when you come off/change???
I have a mammogram due in Nov then will be on 18 month mammos and the Letrozole, Feel like I should be glad that am at 5 year point but dont actually feel that good about it, wierd!! Thanks for all good wishes that have been posted, have not been on forums for v long time and lovely to remember what a great community there is out there, bless you all xx
Suziex
Member

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

I live in the north of the country and would be interested to know if any of the centre of excellences you are talking about are up here in the north. I find it really hard to take on board that we don,t all get the same in depth treatment.

Lavenderlassie
Member

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

It is so variable, isn't it, about what scans we have. Interesting (and good) to hear that being covered by private health insurance didn't make a difference.
I am not so far up the line, just 2 years, had no nodes affected, Triple Negative, some vascular invasion, had a bone scan after 6 months because of hip pain.
I can see it must be difficult for you ladies on hormone therapy to stop it after being used to it for so long. My "Going it alone here" moment came much earlier as a Triple Negger, and it takes some adjustment.

stressy_messy
Member

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

I have my 5 year check in November and will be discharged,fingers crossed (having a bit of problems back and neck so will have to mention it grrr).And will be finishing Tamoxifen next may .I also asked my Oncologist about continuing on Tamoxifen or going on to a Al as had heard lots of women do and he said there was no need.I was ER+ 8/8 and had 1 node involved and had a lot of vascular invasion.Also had no scans or blood tests since diagnosis.I was treated at the Royal Marsden.BCN told me that they are considering not having the 5 year follow up appointments with Oncologist as they cause stress and anxiety and that patients will have more contact with the BCN's and would contact them if they have any problems.Not sure I think that is a good idea because although the Oncologist appointments are stressful I think they would pick up on things and we are more likely to say "well actually I've been worrying about so and so".I have mixed emotions about coming off Tamoxifen, one part of me can't wait and another wants to keep the safty net lol.
Melxx

RoadRunner
Member

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

Well I had node involvement and ER+, but I will be stopping five years of tamoxifen later this month with nothing after that. I have queried this as so many go on to an AI afterwards, but my onc was very definite that I didn't need anything else. I have never had any scans, and no further blood tests since chemo. I was discharged from oncology earlier this year at my five year check up, and expect to be discharged from the breast surgeon at my six year check up next year. I am treated in Leicester which is also a centre of excellence for BC.

hazelmary
Member

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

Hello,
I was diagnosed in 2003 aged 45, grade 2, ER+ 6/8, 6/17 nodes affected. After WLE,chemo, rads, was put on Tamoxifen for 5 years, now on Letrozole on year 4 of 5 years. Was originally told on Letrozole for 3 years but Onc said last year would be on it for 5 years. This was based on the facts that I was ER+ and nodes affected. No other tests/scans taken at the time.
Way back in 2003 AIs were not mentioned to me, treatments/drugs are changing all the time. I cannot find stats for any trials showing 5 years Letrozole AFTER 5 years Tamoxifen. I think there are for 3 of Tam and 2 of Letrozole. I think that all Oncs have their own views on treatments thats why there are so many variations. I have never had any scans since diagnosis other than bone density and I have used medical insurance but none have been suggested.
Its things like this that I find these forums so helpful, I can see what others are offered in way of treatment.

Hazel

Lily200
Member

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

Hi, Lisa I am sure you will have tablets for longer because of the node involvement and because you are such a youngster 🙂 Oldies like me get kicked out a bit sooner! I was told if I get to 5 years I can be hopeful and if I get to 10 I would be unlucky to have a recurrence. that wasn't very reassuring either!I am between 4 and 5 years myself and i think I get more nervous these days about appointments! TTM my hospital is a centre of excellence for BC so we are fortunate (or not if you prefer not to go more often) to get a lot of attention compared to some areas. Others offer more than ours I am sure. My blood tests are the Ca 15-3 tumour marker tests every time ( also every chemo visit I had them) , full blood counts, liver profile tests, bone profile tests and electrolyte profile. About 13 tests plus the usual 'full blood test' box. I have had two Ct scans, 2 isotope whole body scans and a bone density scan when I went onto femara after tamoxifen.The rest was sentinal node stuff for the op and chest x rays and heart ECG before starting chemo. I think that's it. My local friends who have a more complex dx or who have had a recuurence also have mri scans and pet scans, etc. I am shocked how many areas give different treatment.MandH thinking of you tomorrow and I hope you leave feeling confident and ready for the next stage. Don't forget to ask lots of questions. Mal I have been told the same as you but I guess if reserach changes so will our treatment. Lily x

lisaf
Member

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

Been thinking about this one too, my 5 years is up in Jan and node involvement and on arimidex tye tablets, yes I hate the aches but if evidence showing effective after 5 years and isnt detremental to my bones I would like to continue, anyback up to me is a plus - good luck xxx

Guest user
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Re: 5 years on- what to ask at final hospital checkup?

I've had the same thoughts about finishing 5 years on femara.
I have a really good relationship with my oncologist, and have had some interesting conversations with her. This summer (4 years out) I asked about continuing on femara beyond the five years. She told me that there's no evidence to suggest any benefit and that, after 5 years, I am seen to be OK. She also said that there's no guarantee that I'll be clear........ in the future.
So what do we do?............. Enjoy life.

xx
tommyticklemou
Member

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

hi there just reading this thread and got me thinking about this too although i havent even completed 6 months of tamoxifen yet so a while to go!

lily200 - what are the blood tests for exactly and what did the full set of scans consist of???

thanks for info

mandh - best wishes for your appointment.xxx

TTM

Guest user
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Re: 5 years on- what to ask at final hospital checkup?

Thansk for this advice Lily will look at some lder posts....
x Amazing how things vary , i have had no blood tests or even seen an oncologist since I had my last rads Feb2008!!!
Lily200
Member

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

Hi,I am not quite as far as you but already have the same thought in mind. Mainly well done on getting that far without any wobbles or bad news to deal with. At my hospital everyone goes twice a year, once to the oncology team and once to the surgical team. Everyone has full blood tests before seeing the onc team and we all had full sets of scans after 2 years so it will be difficult if it stops completely. This is for every patient. You will still have mammos (unless no breast tissue on either side) but less often. I think it depends on your age and dx and area policy. I was told that because I had no nodes involved that i will stop tamoxifen/ letrozole after 5 years but if I had a worse original dx I would now be on tablets for 7 years but this could extend further, depending on future research results. There have been a lot of posts about stopping treatment on the old sites so it might be worth searching through this thread and also the archives for it.Someone wrote a lovely piece tor reassure people about moving on and stopping their tablets. Hope you can find it and please come back and tell me how it went. I hope they give you the reassurance you are looking for but it might be an idea to write these questions down and take them with you. Remember the protective effect of tamoxifen has been found to last for many years after you stop taking it. Good luck Lily x

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

I am coming up to 5 years since treatment and think i will get signed off when I go for annual check on Tues. my hospital seems all a bit casual and think I might just get the usual prod in the chest from whoever is running the clinic this week and sent on my way!! I do feel a bit wierd about getting signed off, not sure if they will take me off Tamoxifen, not sure if i want to come off ( what if it comes back once I stop) Should my last check up be a bit more detailed than others? Should I ask to see an oncologist? What would others recommend me to ask?? What are other peoples experiences of hospital appts at 5 year point? I have been quite lucky & had no problems since initial treatment so only go to the hospital once a year , so i'm not really known to the department. Thanks for your advice everyone xx