Oncologist appointment and radiotherapy delays

[Puggles]

If you want to use NHS Choices to comment on your radiotherapy service be aware that there is a character limit of 3000. Easy to exceed this and if you're trying to do a cut and paste job it's a bit of a disaster. The other problem with NHS Choices is that it does not operate like Tripadvisor where you can compare the excellent reviews and terrible reviews.

Found myself sending my mini report to the Care Quality Commision. I hope they value all that I have written and will visit Radiotherapy on their next inspection. 

I am left wondering if Radiotherapy was left out of the last CQC inspection because the the guidelines are thought to be working.  

[Puggles]

When you're looking for a good restaurant in an area you've never been to or don't visit often you'll turn to Tripadvisor or some other such site.

Unfortunately the shock of cancer doesn't give you the chance to suss out hospitals.

You can find out how your hospital is rated by the Care Quality Commission.

Into your search engine put "the name of your hospital - Care Quality Commission".

These inspections probably have reports that are set out very similarly for every hospital. 

Look for "Outpatients" and its rating on the very first page.

Click on Outpatients. Mine has the requires improvement rating, which means "the service isn't performing as well as it should and we have told the service how it must improve". Delays in radiology were specifically mentioned. Although it is disappointing to read a rating and comment such as this it does mean that the Care Quality Commission will be looking at Radiology when it visits again.

However, the term radiology takes in diagnostic tests as well as radiotherapy. Regretably on reading the full report the team did not visit the Radiotherapy Department. This is worrying as it might well  mean it's left out on the next inspection and forgotten.

[Puggles]

Good idea Toulula.  Find out if you can ask for morning or afternoon appointments. The good news is that this is often possible.

Make plans. Have people round. Cancer need not be the centre of the universe unless you let it be.

Take care. Thinking of you.xx

[Toulula]

Hi hospital half an hour away will pop in to my daughters if it is a early appointment xx

[lucy12]

Toulula - I found when I had my radiotherapy last year that it really helped me to write all the appointments on one long list and tick them off every day - it was great seeing all the big red ticks snaking their way to the bottom of the list.

I had 20 treatments and at the end of each week, Friday became treat day to celebrate a whole week of treatments completed. I'd meet a friend for coffee and cake, buy myself a posh coffee from the expensive coffee place in the hospital lobby etc. It gave me something little to look forward to and aim for.

Atat - Glad it's all going well so far, keep slathering on the cream and drinking lots of water...

Lu xx

[Toulula]

I go swimming twice a eek but all stopped in June hoping to go back in October going to a shopping centre tomorrow then my daughters for a coffee on Friday try to keep busy tell I have to go back xx

[Toulula]

Hi been given anstrozole hormone tabs have to wait for letter to tell me when to go for mapping and radiation all in September 15 lots then 2booters 17in all over 3weeks hugs xxx

[Toulula]

No waiting for letter xx

[Puggles]

Toulula. Is it possible to combine the treatment visits with something else so everything doesn't feel so hospital bound for you?  Are there shops nearby to hospital? This will take more energy, but it might reduce things to the level of visiting the GP and going on somewhere else afterwards.

[Puggles]

Atat. Gald it has worked out for you at new hospital, but what a mess around you've had.

[Atat]

Hi Lu
Yes, I have, thanks. Just had session 8, another 10 to go. Quite warm and pink now.
Any itchiness relieved by anti histamine.

[Toulula]

No mapping have to wait for oppoinments September having15 then 2boosts 17 altogether just weighed me exam me talked about it so more waiting got upset again my husband does not understand he thinks why am I crying got over op it does not help nurse said it was normal

[lucy12]

Hi Atat

Have you started your rads now? How are you doing?

Lu x

[Atat]

It's OK. I'm quite relaxed because I'm going to another hospital to be treated incidentally where they are giving rads 4-5 weeks post op!!

[Puggles]

Atat

Their reply is weird, but then you are asking them to judge their very own performance. 

When I went into the scanner and had the tatoos it was about 10 - 15 minutes lying down on my back with arms at rest on the board above my head. It wasn't tiring -  I was after all lying on my back.

I have not had a mastectomy, but mini breast reduction with lump taken out. (Followed by 6 lots of chemo) I'm no expert so don't know if this makes a difference with the 6 weeks ECAD date you've been given..

Anyway, playing by their rules the ECAD still means Earliest Clinically Appropriate Date for the next treatment to begin. IT DOES NOT MEAN towards the end of the 31 day add-on period.

Keep doing the excersises - don't give them any excuse for further delay. 

Want to see how hospitals choose to interpret guidelines?

Put in "Cancer Targets" www.ncin.org.uk

After you've read it you've read it you'll wonder if you've committed a breach that you have no Knowledge of !!!!  

If rules are going to be applied then it is only fair that patients should be made aware of them at the very start of their treatment. 

I live in the warm and this year sunny South of England. 

Take care Atat. Try to relax.

[Atat]

Puggles. Which part of the country are you in, don't need to be be too specific?!!!
Atat

[Atat]

They may well tell you then, isn't that tomorrow?
Atat

[Toulula]

No mapping today

[Atat]

Hi Puggles
My hospital is saying that the ECAD is 6 weeks post-surgery because they say that you can't raise yor arms above your head for 15 mins (although they are supported ) until that time, and they are saying 31 days from then. That was in response to my formal complaint. Quite ridiculous and they say that I've misinterpreted the guidelines. A fudge or what?!
Atat

[Toulula]

Thanksxx

[Puggles]

Knowing what I do now. I'd catch the Oncologist's attention before he put pen to paper and ask what date he intended to put down as the ECAD date. If hospitals are going to interpret the ECAD date as the point when they can add 31 days on then it makes sense to press for the earliest ECAD date possible. Playing by their rules that is the obvious loophole.

ECAD - Earliest Clinically Appropriate Date. For radiotherapy that means the first date the patient would have been physically fit to start radiotherapy. From  www.datadictionary.nhs.uk

Would should happen?  Try "Ensuring Better Treatment: Going Further on Cancer Waits" at www.ncsi.org.uk

Here you'll find on Page 7 that there is no 31 days add on to the ECAD date. The subsequent treatment is all within 31 days.

Atat. As you say these are only guidelines and that will be quoted at you. Your experience has been horrible. What can be done?

Well the next General Election is scheduled for May 2015.  I have largely given up voting, but this time I will. Any unfortunate politico touting for my vote at the door will be asked what they know about 31 days, ECAD and decision to treat. No knowledge from them  - no vote for them.

Kill those stray cells as fast as possible, I say, and that is as soon as possible after the ECAD date no messing about.

[Atat]

I don't mind delays as such, providing they do not affect likelihood of local recurrence. Just seems to be a postcode lottery regarding when you get rads, which are supposed to have a significant role in killing off remaining stray cancer cells.

Atat

[Angie55]

Hi Lex
I had my Radiotherapy at Northampton. The staff are great. I had my planning meeting and they gave me a list of Radiotherapy dates to start me off. The only real problem was the delays bit I shouldn't really moan about that. If you have any questions please ask. Hope all goes well for you
Angie. X

[Atat]

Good luck. I was expecting an oncology appt soon after follow up, was then told it would be another 5 and a half weeks just to get that, let alone treatment which is why I decided to go elsewhere!
It was looking to be 10-12 week wait since 2nd op. Where I am now start rads 4 and a half weeks post op if no clinical reason not to.
Atat

[Elz]

Sounds as if Northampton General is OK.  I have my follow up appointment next Thursday, so expect an oncology appt soon. Must admit I shall be glad to get it all over. The op was nothing to worry about, and the care on Spencer was first class, even for us day patients. Can't fault them.

[Toulula]

Thanks xxx

[Toulula]

Thanks for getting back to me I thought the radiation started day after the mapping was hoping to be ok by 14th September and go back to swimming in September looks like this is not going to happen this has took over my life back and forth over 5monthes so far having tests ops ans so on now waiting again no wonder I keep crying need to get my life back soon xxxx

[Jaye]

Hi Toulula

Obviously hospitals vary a lot on waiting times but I had my rads planning appointment 8 weeks after my op and then waited two weeks to start radiotherapy,

At the planning meeting they gave me all the dates and times  - so I started rads 10 weeks after my op.

Good luck

Jaye x

[Atat]

Plus I've yet to meet anyone at my local hospital who works full-time!!

Add on 5 weeks hol a year plus additional long service days. Probably best not to need treatment during school holidays, but then we don't chose when we get breast cancer.

[Atat]

If I hadn't insisted on going elsewhere, I'd still be waiting for treatment at my local hospital. Having had my first op in May, second in June, I found this quite unacceptable.
On the subject of different hospitals, I've, to date, received no written record of what I've had, type, stage, just what was in referral letter to other hospital. No management plan which I thought was standard. I'd be interested to hear others experience of this.
Re delays. NICE guidelines are clear, it's just that hospitals interpret the 'start' times in different ways to suit them, the hospital, not the patient. As for the numbers if times I was told they were JUST guidelines........!!! Well, I wonder if they would feel the same if they were the ones with breast cancer!!
As for all these Bank Holidays and statutory days, well, the times I've had to wait longer for my results because of these. No wonder we have the worst results in Europe for breast cancer. I could go on .......
I'll stop now.....
Atat

[Puggles]

Sorry to read of the wait you're had and that you are so upset. Think you are quite normal !!!

The radiotherapy department I visited at the beginning of August was very quiet. Think things will improve towards the end of August when staff who are parents are back from their holidays and getting ready for the return to school. Hopefully more radiotherapy machines will be up and running to kill any stray cancer cells.

I'm afraid I wasn't told the date of the actual radiotherapy treatment until the end of the talk of what radiotherapy was about.

Unfortunately the availability of  radiotherapy is such that there are priority categories. Put "The timely delivery of radical radiotherapy by the Royal College of Radiologists" in your search engine.  I am no expert but from what I read Breast Cancer is Category 2. This is good and bad news. Good that Breast Cancer is described as a slower growing tumour type. The bad news - you wait on.

Hopefully you won't wait so long from the Planning Session to actual treatment and you can get on with your life after that vital treatment is carried out.

[Toulula]

Had my op6 weeks ago breast and lythnons have mapping on 20th not sure if I strart my radiation the next day or have to wait I hope not I have a chrisning to go to on the 14th September my granddaughter there will be a disco was hoping to do some dancing it may cheer me up fed up of crying do not understand it had op all clear but still getting upset is this normal.

[Puggles]

You may wonder why the Planning Session happened so far in advance of actual radiotherapy. Easy. It has prevented me hunting down another hospital with a shorter waiting list. How can I go else where when the tatoos and cat scan have been done? I wasn't even told there was any possibility of temporary tatoo marking just asked if I was ok with the permanent tatoos. 

I am not looking forward to turning up to the radiotherapy at this hospital in any way. I thought I'd be pleased to get the whole thing over and done with, but I've lost confidence in the place. Lack of vital info. Figure fudging.

Not good.

[Puggles]

On this site somewhere it states:

"Radiotherapy 31 days after chemotherapy has finished".

Does that mean 31 days after your last chemo was given.

Does it mean 31 days after your ECAP date - the date your Consultant states that you are fit for treatment, which will probably be about 10 days after the chemo was given. 31 added to ECAP makes at least 41 days from chemo being given.

Now here is a really silly question. What does treatment mean? Is a Planning Session regarded as treatment despite no radiotherapy being given. So the patient can go into a Planning Session and then wait on hopefully for not too long.

The first actual treatment appointment I got was 39 days after the chemo to kill off the stray cells. After a moan this was reduced to 34 days (why couldn't I have got the earlier appointment in the first place?) The reason for the delay was that Planning takes a long time. The word CAT means Computerised Axial Tomography - note carefully the word computer. 

What's in days you may ask. The Planning Session happened 17 days after the last chemo. Meaning I have been CAT scanned and marked up with tatooes another17 days before I'm going to get the actual treatment. I asked, as an after thought when I got the second appointment, if I could diet. No. Putting off dieting may not seem a problem, but as I now have the joy of being mobile after chemo the weight started to fall off without any change of diet at all  (3lbs in 5 days). Like a lot of women, the very first place the weight falls off is - the breasts!!!! Also like  a lot of women extra weight does not help dodgy knees.

So I'm now forced to feed myself like a pate de fois gras duck or risk those measurements being way out. There is no way I'm going to let some figure fudging bod in an office risk damaging my heart and lungs with radiation because the planning session data will have become out of date. 

I won't be able to sort this situation for myself, but hopefully other women will be told at the very least not to diet.

I look forward to the radiation finishing, any stray cells being killed off, and getting some life back before the ovaries are removed in a few months time. My first op was at the end of Feb. Freeedom!!!!!!

[Atat]

That is good news, and and not long to wait.
2 days to go for me now
Atat

[Toulula]

Hi had my op 3rd July going for radiation on 20th this moth 6weeks after op glad whe it I all over

[Atat]

Hi
I was referred to another hospital in another area, there being no other hospital offering rads in this large county. I had an oncologist appt within a few days!!! They arranged a planning appt on the same day to save me the extra journey. Quite outstanding!!! I will start my rads in 3 1/2 weeks time - week 9 post 2nd op. I will stay at a local hotel.
I feel strongly about the delays at my local hospital and fail to understand why the BC nurses were so negative re getting referred to another NSH hospital. Fortunately my surgeon wasn't. Can anyone throw light on this?
Thank you all for your support.
Atat

[Atat]

Hi
Thank you all for your replies which I'm finding really helpful. I'll let you know what happens

Atat

[Angie55]

Hi Atat

i had my wle on 29th Jauary, saw the oncologist on 19th March and started my Radiotherapy on 3rd April. That was 9 weeks from the surgery to starting Radiotherapy I did phone to chase things up. All hospitals are different and ladies can have infections etc which delays the start of the Radiotherapy. I was treated at Northampton General. Hope your hear soon it is all a waiting game, but once it starts it flies by.

Take Care

Angie. X

[kathy03]

Hi Atat

I had to wait 14 weeks for my radiotherapy to start. Like you I was really concerned about the long wait. When I voiced my concerns to my oncologist he assured me it wouldn't make a difference to my outcome. Part of the reason for my delay was due to first, allowing healing time from second lot of surgery as margins weren't clear the first time and then the Easter holidays as the hospital I went to have a break over Easter and they didn't want my treatment to be interrupted.

Some hospitals seem to have problems as they are so busy. I went to The Churchill in Oxford and they cover a very wide area which also adds to the pressure of fitting everyone in I suppose.  Also some unlucky ladies unfortunately develop infections after their surgery and can't start until everything has healed. 

You could always ring the radiotherapy department to ask them to give you some indication of when you'll start. I hope you hear soon.

Take care

[Atat]

Sooty about typo, meant it could 'take' time!

[Atat]

Yes, am trying to get referred, hope it is done quickly as I know other hospitals don't have a delay like mine. My hospital nurses had said it could time time, but don't understand why, perhaps it doesn't look good for them!! I would stay in local accommodation. Sickening, really, as I live close to mine.

[Jo1]

Atat, if there are other hospitals in the area, it might be a good idea to try to have your treatment there. However, many of the ladies who had radiotherapy when I had mine were extremely tired by the journey each weekday - some up to an hour each way, as well as having burns. I was very lucky as I live just a few minutes away from our local hospital, plus I didn't burn, just some redness, which I put aloe vera gel on several times daily. Gentle hugs and good luck, Jo x

[Atat]

I had my WLE on 19 May, re- excision of margins on 16 June, oncology appt is not till 7August, and have been told radiotherapy may not be until September

[ellies]

Hi Atat,i had my WLE and lymph node operation on 13th May and started my Radiotherapy on the 8th July,i don't think that is too long to wait as i had planning and mark up and oncoologist appointments during that time,how long are you having to wait ?Lovr Ellies x

[Atat]

Since I am having to tolerate what I think are really bad delays following surgery, I'd be interested to hear what is the longest time folks have had to wait!!!
I'm trying to get referred elsewhere.