General Discussion

xSazx

I asked for scan at 6 mths &.....

Someone on this forum recently inspired me to push for a scan at 6 months (for my husband) instead of having to wait a whole year. We have been fobbed off on a number of occasions at various appointments and told that the protocol/guidelines are annual scans by the various oncologists we have seen. As my husband is high risk I decided to email the lead oncologist yesterday (Professor Cunningham) explaining our concerns and I've just received a phone call saying that he can have another scan next month. So yes it can be done. We are so happy!!! 😀

xSazx

@Rachel It doesn't make any sense. How many patients are not being monitored enough because "computer says no" . They need to be more thorough and look at every case individually and not for example bunch all stage 3 patients together. Some are much higher risk of recurrence than others. Same with other stages. Great to hear you were able to have a resection and I will keep everything crossed for your forthcoming scan results. :x:

angelj

Well done @xSazx, I’m going to do the same, wishing you good results :x:

Lee1974

I had similar whereby after moving hospitals they wanted to scan me every 6 months instead of 3,. I asked at the last appointment if I could go onto 3 monthly cycles and got excuses about radiation exposure from scanning so frequently and guidelines. I argued that being a stage 4 bowel cancer patient on palliative treatment, I was not too concerned about radiation exposure.

I eventually asked, "can the patient request a scan is done every 3 months" and the answer was "yes, I'll book your next scan for 3 months"

Rachel

@Lee1974
I made this point also about I’ll take the radiation rather than cancer.. I also made the point that if I was on constant chemo I would be scanned every 3 months so what’s the difference.
@xSazx
Totally agree, there computer says NO mine doesn’t.. We are individual and what works for one does not necessarily work for others. I’m hoping for good results... I’ll post when I get them. :x::x::x:

xSazx

Good for you @angelj and thanks. Let us know how you get on. :x:

xSazx

@Lee1974 Yes, it seems that different hospitals have different protocols. I think it's wrong that we are being told one thing from one person and something different from another person, at the same hospital! I received another phone call this afternoon from a lovely lady who arranges CT scans and was scheduling my husband's appt. She said that all I needed to have done in the first place was to ring someone in the CT dept and request a scan and it will be done. So why are the oncologists telling us that this is not possible? I reckon they are using 'radiation exposure' as an excuse for not clogging up the departments and to save a whole lot of money. The exposure in adults from CT scans etc is minor and not of any great concern from what I've been told. Glad you got your 3 monthly scans and all the best. :x:

xSazx

@Rachel Yep totally agree, it doesn't make sense does it. Wishing you all the best for your upcoming scan results and yes, please let us know how you get on. :x:

Lisa75

@xSazx that’s brill glad my post made a difference. Wishing your hubby the best of luck :x:

Stillme

Hi @xSazx I am so in awe of your strength and persistence, I am stage 3c and was told numerous times by the surgeon after my surgery that I am 'very high risk of recurrance' and then have been told numerous times by my oncologist (who has been great with everything else), my colorectal nurse who is doing my follow ups and also the stoma nurse that they don't want to expose me to more radiation but I think we all know that it is down to costs and different areas allow more scans. Could I ask what NHS area you are in. I am just so weak when it comes down to confrontation, I am happy to email him but I know that if he didn't give in face to face it is even easier to refuse by email. I was quite strong in saying my worries and the high risk but not strong enough to stand up to people. My last scan was post chemo in August 2018 and now not due one until January 2020.... :x::x:

Stillme
Quote from @Lisa75:
@xSazx that’s brill glad my post made a difference. Wishing your hubby the best of luck

Hi @ Lisa75 your post too was very inspirational, please come and sort me out too...!!!

Lisa75

@Stillme if I lived closer I would certainly be there ringing them for you. I can’t believe they’ve said 2020 for your next scan, please get in touch with them and ask again, if no joy try your gp xx

Quote from @Stillme:
Hi @ Lisa75 your post too was very inspirational, please come and sort me out too...!!!

xSazx

@Lisa75 Thanks so much and yes, your post made a huge difference. I was scrolling today trying to find who it was that inspired me and I couldn't find the post. Thanks again and love and best wishes to you. :x:

xSazx

@Stillme Oh I'm the same, I'm not a great one for confrontation. I always feel that if I stir the pot... (so to speak) then I might piss someone off and compromise his treatment. I now realise that this is not the case and his life is worth fighting for. We live in the Borough of Merton, Surrey and my husband was operated on at Epsom hospital followed by chemo and follow ups for the next 5 yrs at the Marsden in Sutton. Hope that helps and don't believe the rubbish about radiation. Utter nonsense. :x:

angepange

That’s good @xSazx , well done for being persistent. It seems strange to say he is at high risk then not scan for a year! I’m glad the team listened to your concerns.:x:

xSazx

Thanks @angepange. As much as I champion the NHS and the wonderful care it provides, the cost cutting is putting lives at risk. It's very unfortunate. I read your profile and see that you've been discharged, fabulous! :x:

angepange

Ah thanks @xSazx . It’s been a long road and I never feel I’m truely off it. :x::x:

terri m

Hi @Saz.. I thought of you & your post today... I had an appointment with my surgeon to discuss colonoscopy results.. My next scan was due in August this year, only because my oncologist did not think I would need one before 12 months, even though I am at high risk for reocurrence . Today I made sure that I really expressed my views telling my surgeon. I wasn't happy waiting that long, & yes!!! He agreed it is far too long to wait with my histology, & has requested a scan... I was informed by the department though that there is a 3 month waiting list🤔, fingers crossed I wont be waiting that long . A big thank to you for inspiring me to speak up..😘😘. Anyone on this forum who isn't happy with there follow ups should do the same👍:x::x::x:

cyclingjohnny

hi xSazx,absolutely fantastic that you have kept kicking the door, i have worked for a local authority for forty odd years, and you find that people that do the complaining, and keep ringing up on a daily basis always seem to get things done, i suspect NHS is no different, so good on you, its time more people started demanding the service that they should be getting, you are an example for us all to follow. cheers john.:x::x::x:

jandals

At the moment this is not an issue for us as we are very much in the process still but I was wondering if the colorectal nurse could have any influence to help push for this? The other thing I wondered is how it would be if you ask to have it recorded in your notes that you have requested 3 monthly or however regular you would like your scans but that this has been decided against and ask when this decision could be reviewed and have that put in your notes as well? Sometimes people are less likely to want to make things official in records in terms of going against patient preference as I think are meant to be providing patient centred care...

xSazx

I don't think I've ever had anyone say that I've inspired them to speak up about anything. I'm really really happy that I have! 😁. Don't expect anyone to record details of specific conversations etc. I'm just grateful that my husband is being scanned next month and we'll deal with the next hurdle if and when it arises. Be kind and supportive to your medical team and don't tell them what they should be doing, a little suggestion is fine. Ultimately their aim is to get you better and cure you on very limited funds and that must be very frustrating . All the very best to you. :x: