Posted on behalf of new user Ruth
Best wishes
Lucy
Hi All,
I need some advice: I was diagnosed with secondary breast cancer in June and quickly became disenchanted with the local hospital where I was to be treated. I had originally been treated, for primary breast cancer, in Cheshire by a Christie’s onco so asked his opinion for an onco near where I live now, in Swindon. He recommended someone he’d trained with, now at Cheltenham/Gloucester hospitals. I’ve seen the new onco a couple of times and am not very impressed, on a number of levels, not least because - 2 months on - I’m STILL waiting for full results of all the tests/scans I had, to determine the full extent of the cancer! I’ve decided to give Chelt/Glouc one more chance but am looking into other places to be treated. My choices are: Royal Marsden, Bristol, Reading, Oxford (at a push), err I think that’s it - or go back to Great Western, or stick with Chelt/Glouc.
I want an onco/hospital that treat me as an intelligent, educated woman, make me feel I’m being given the best possible chance and not only talk to me but listen to me too!
Is that too much to ask or have any of you got that kind of treatment at the hospitals I can get to?
Thanks
I am really sorry that you have been having these problems and that you have been dx with secondaries.
I am being treated at the Royal Berks in Reading. The treatment has been Ok so far although I have had to push my self forwards on several occasions to get answers to my questions. The main problem I have had was that originally I was being treated privately in REading through my insurance company. After they failed to pay any more I was transferred to NHS . The NHS assumed that I had had things done with out reading my notes so becasue I have been on the ball I have managed to get scans done etc.
I just fine with the Royal Berks that you have to be on your toes to make sure that they don’t miss things and don’t be afraid of fighting your corner
I saw someone at Royal Marsden this week for a second opinion. The oncologist I saw treated me as an intelligent grown up not as a needy dying child which has sometimes been my experience. If I lived nearer I would certainly want treatment there. I know people who’re are being treated at Royal Berks and sounds OK. It is also possible to get something called dual care or do as I did, get a second opinion somewhere else but continue treatment locally.
Its hard when you find your onc difficult…I do too…but I try to treat her as a challenge to be managed but the actual treatment I get in terms of drug admin, nice nurses, scans etc is fine.
Caroline…when and why did your insurance company give up on you? I am sure mine soon will.
They treated with me for 4 out of my 6 fec treatments and for my initial ct scan and biopsy of my lump in my neck, but then they said because my cancer had spread from an original site then I wouldn’t be covered for anymore treatment. I felt that this was very unfair because I was dx with secondaries straight off. It wasn’t as if I had breast cancer a couple of years ago and it came back. And they have never found my original site they have discovered it was breast cancer from the lump they took out of my neck and the fluid in my lungs.
I was going to fight the decision but I just didn’t have the energy
Hi Ruth,
who is the onc., he recommended who’s now at Cheltenham/Gloucester hospital?..I had my treatment there and my aunt is being treated for secondaries there too.
For what it’s worth, I was treated at Cheltenham/Gloucs four years ago, so things may have changed, but I did find it running at full stretch, under tremendous pressure. Quite possibly it’s not unique in that regard, but I found the traffic congestion, abysmal car parking, long waits and packed chemo waiting room incredibly stressful at a time when I really didn’t need any more - and, like you, I didn’t have a particularly easy relationship with the onc there, who was a spectacularly poor communicator.
I had just a ‘taste’ of the Royal Marsden about 20 months ago, for a cancer related problem. It was one visit, but I was really impressed with the staff I met, as many others have been, it seems.
My onco at Chelt/Glouc is Dr Benstead - she has a reputation for being very intelligent but also as a rather brusque Northerner - I don’t mind that, as I can be too! I don’t object to being told it like it is; I DO object to not being told anything! But Dr B and her less-than-perfect communication skills aren’t the only problem - I’m on hormonal treatment currently but, at some point, am likely to have chemo and, as Bahon2 found, the waits for chemo can be horrendous; I’ve heard 12 hours and not being treated until 9pm! Also, you are not automatically assigned a breast care nurse/key worker; no gowns or escorts are provided for consultations; consultants only have 7 minutes for each patient - I just don’t want to be made to feel no-one had time for me and my questions.
And I don’t want to be fighting for what I see as my basic rights; I’d rather be fighting WITH my care team than against them and save my energies to fight the cancer.
Yes, my longest wait was 10 hours - got away about 7pm, as I recall - thought they were going to ask me to turn out the lights! - and then quite a long drive - tho’ not as long as some of the poor people who had had to come from S Wales - home. They were providing pagers, so you could go ‘shopping’ or get ‘some lunch’ (both of which cost money!) and not be too tied, but it wasn’t very satisfactory when you really had no idea how long you’d have to hang around - no-one seemed to be able to commit to even the roughest idea of how long the wait would be.
I had no breast care nurse there, either - had to try to use one based at my local hospital, instead.
However, on the plus side, radiotherapy did seem much better organised.
I think Gloucester/Cheltenham has been called a ‘Centre of Excellence’ for cancer care - in which case it might the best you can get! - with the possible exception of the Royal Marsden, by accounts.
The one thing I can’t tell you is how it compares with others of its type - hopefully a few others will post here with their experiences of waiting times,support/pastoral care and ‘onc approachability’ ratings and you will be able to build up a bit of a ‘database’ - for want of a better word.
Hmmm, I was previously treated at another hospital, that ISN’T a “centre of excellence” and got much better care. Shame I moved house and am now too far away to be treated there.
Gloucester/Cheltenham is a ’ Centre of Excellence '…Dr, Kim Benstead is also my onc.,…When I first started my treatment 4 yrs ago I saw Charlie Candish… [Dr. Benstaed was on a sabatical]…I saw Dr. Benstead once or twice during chemo…other than that saw Emma…can’t remember her surname but very nice…saw Dr. Benstead at radiotherapy planning and maybe once or twice since…she is a woman of very few words I must admit…but I found her willing to take the time to explain/talk…also when I was having my chemo…the nurses used to say that Dr. Bensteads paitents had to have their treatment on the day they were due it even if it meant they would be there until late in the evening…from what I know she is very dedicated to her job…my friend was treated by her for secondaries and U must admit the treatment and way she was treated was wonderful compared to that of my aunt who is under a different onc., for her secondaries.
Yes Bahons2 is right the parking facilities are awful and yes there are high waiting times for chemo to be made up and then for a nurse to be available to administer it,
however a gown was always made available to me,…at least one of my consultations during chemo lasted in excess of 30 minutes as there were things that needed to be discussed…my husband was welcome to join me in consultations…fortunately my breast care nurse…who is also a very straight talker…was usually in Cheltenham on Fridays [the day I had treatment] and always took the time to come and talk to me.
I’m sure different parts of the country differ in there approach so hopefully Ruth you will get a few more opinions.
Bahons2…You must of been being treated at Cheltenham round about the same time as me.
I had some chemo at Cheltenham (June, July Aug, 2004) and was then offered the chance to transfer to a satellite hospital nearer my home for the rest, which temporarily improved the situation for me immensely, as everything was much less rushed and ran pretty much to time. I don’t know whether this option is still offered to chemo patients at Cheltenham. Unfortunately, after that, I kept getting infections through the line I was fitted with and spent much of the intervals between chemos as an inpatient - back at Cheltenham!
Hi Bahons,
I had my chemo March, April May 04 and my radiotherapy July, August 04.
Who is your Onc.,? my BCN is Jane Fide have you ever met her?
There is a Breast Cancer Conference at The Chase Hotel at Shurdington in October this year…they had one last year too which was quite successful…though some people who attended did say it brought ''it ‘’ all back to them.
My aunts onc., is Sean Elyan…she is being treated for bone secondaries.
I have recently emigrated to France, so am not ‘on the books’ at Cheltenham any more.
I don’t feel I can give the name of the onc I had then as this is an open forum and because that person is not in a position to respond. I am happy to mention people’s names where I have something positive to say, but I don’t think it’s fair to criticise individuals from behind a username. (Institutions and organisations are a different kettle of fish,tho’!) A bit like a job reference - it’s what isn’t said that speaks volumes!
I never met Jane Fide, either, I am afraid. My BCNs were based at the satellite hospital.
As for me, things could be better, they could be worse(!) - but I feel myself to be well looked after here.
You say you would consider Bristol. I am at the Bristol Oncology centre which is part of the newly named University Hospitals Bristol Foundation Trust. I have a wonderful oncologist who has been extremely courteous, honest and kind throughout my treatment. I do not feel rushed and he always answers all of my many questions every time I see him. I had some problems with my treatment and whenever I had to be admitted as an emergency, he came to see me frequently. I started as his private patient in a different hospital and later became NHS, but apart from the surroundings, you wouldn’t know the difference. The BCNs are also very good indeed. I had chemo at home while a private patient so I can’t comment on how long treatment takes I’m afraid.
The only problems that I have encountered have been whilst an in patient, but mainly that is because I am probably a very impatient patient, if you see what I mean! Also being city centre, the parking is awful.
I am not keen on posting names on an open site but would be very happy to send you a private message with the name of my oncologist.
Thanks for that,Anne. What role do the breast care nurses play? Are they readily available and do you have your “own” nurse who you can call with any questions?
That’s good about the nurses seeing the onco with you; I’ve arranged for that at Chelt/Glouc but they think it a rather novel idea, whereas it’s standard at other hospitals. How else can your bcn know what’s going on and just what you’ve discussed with the onco?