NHS Post op follow up scans

Hi.

I would ask if you could be considered for the SARONG study. This study is taking place to see whether regular scans after completion of treatment is beneficial to patients, rather than the more usual follow-up procedures of just meeting with the patient (or telephone consultations) to ask how they are.

I am on the SARONG study with Southampton University Hospital, finished my treatment in February of this year, have had one scan as per normal afterwards, and another 3 months later under the SARONG study. I have a telephone appointment next week with my surgeon just as a follow-up check, and will have another scan and an endoscopy in December under SARONG. This will continue for 3 years, then reduce in frequency for another 2 years.

Unfortunately it is not the norm, and that is why SARONG was set up, to see if it can improve outcomes for patients. It's not for everyone - a friend of mine who finished treatment last year refused the study, saying she didn't want to know, or undertake another endoscopy, and of course waiting for results is always an anxious time. But I'm like you, I'd rather know, and know early if it were to reoccur! 

Wishing you all the very best for your forthcoming treatment. It's a slog, but ultimately curative for you by the sounds of things, and hopefully you'll have further opportunities to discuss after care.

Hi,

Like you, I have been told that I will not have any routine scans and, like you, I am worried that things could be happening inside me of which I am currently unaware. I am lucky that my cancer was caught early enough for me to have been offered a curative treatment plan. I may not be so lucky a second time if it was to recur. I am now nearly 6 months post-op but aware that the first 5 years are the danger zone for a recurrence so I’m a long way from the finish line still. Nobody mentioned Sarong trials to me. I don’t think they’ve been offered to anyone in my area (N. Ireland). If necessary, I may consider going privately for one - just for peace of mind - although it does seem unfair to have to do so. CB

Many thanks for the information. I will press for this Sarong with my clinical nurse specialists and see what they say. They have I believe alluded to such when saying "no follow scans" but have not gone into it. I will press to see if I can be added to it. Thanks again.

Thanks for the response Cool Blue. I believe mine sounds much like yours in that I've been told "curative" and it has not reached the point where I have experienced, for example difficulty to swallow. Mine was detected after an Endoscopy pressed for by my GP after acid reflux failed to be controlled by medication. Complete fluke really as they could of just kept moving the goal post and increasing the dose trying other "...prazole's".

The approach of no follow up scans seem like a cost saving exercise to me. To say "is it beneficial to the patient?", I mean of course it is. It's peace of mind since none of us of doctors and even if we were we wouldn't necessarily have symptoms that would conclude a cancer had returned or spread in time for action to be taken. 

It's easy for people to say, you've had the op, the cancers been removed now live your life to the full, but they aren't the one with Damocles sword hanging over their head. I appreciate some may not want to know, but maybe the approach should be to ask the patient if they want the scans not "sorry, no follow up unless you have symptoms".

Dear WC79

My circumstances are different to yours. However I have picked up on your comment about not needing any more stress and anxiety in the context of trying to understand your clinical management. 

Diagnosis of this dreadful disease in itself is reason enough to feel unbearable angst.

One of the guiding principles of medical ethics is, first do no harm. It seems to me that my MDT have let this principle fall by the wayside when it comes to my mental health.

I was diagnosed over 2 months ago and my experience so far is that I am not getting answers to questions I pose to gain a better understanding of decisions that the MDT are making and have made about me.  This is causing me added anxiety, that as you say, we can do without. 

My GPs agree my questions are reasonable and that they do deserve an answer.

I wonder if anyone reading your post has experience of not getting FULL answers to questions.  And how they have gone about tackling this issue. 

Hi WC79. Interesting read. I do know what you mean. I feel that I have a little niggle in the back of my mind as to whether I should ask for a routine scan. I finished all my treatment 31st October (chemo/radiotherapy/operation) last year and doing well. I was told (by the team at Addenbrookes in Cambridge) that routine scans no longer are carried out. They said that for a lot of people, the worry of a scan and waiting for results, was causing more anxiety. However, I was told that if I wanted one I could request one. This made me feel a bit happier as on the one hand I do want to get on with my life but some days I just feel that I need reassurance. Perhaps you could ask if this could be the case for you. In the meantime I hope everything goes well for you. With best wishes, Julie

An interesting discussion and one I have been thinking about myself. Of course you can be on the Sarong study but not necessarily be selected for scans etc as it is a randomised study. The real question might be to ask your consultant what advice he would be giving to his private patients as to the advantage of having scans etc. Is this a solely a cost issue in the NHS or are there fundamental medical reasons ?  

Hi Rosiee. So sorry to hear your questions and concerns are falling on deaf ears. I am fortunate to say to date I have received excellent care from my treatment team and they have been there every step of the way to answer all my questions. It is just this one sticking point I seem to be unable to find a sufficiently acceptable answer to.

Please do keep on at your treatment team. I remember the first 3-4 weeks being awful after my initial Endoscopy, but once things got moving the team were very helpful. If you haven't already it might be worth expressing your concerns over the mental effect of feeling as though you aren't getting the answers, and indeed the attention you deserve during such an obviously distressful time for yourself and your family.

I hope you are able to get the answers you seek. Please do not lose hope and continue to press your treatment team for the answers to questions you want.

Thank you Julie. So it sounds like your location team have the same approach as mine.

I can certainly appreciate that for some people the anxiety of scans can be overwhelming. As in most things though there is always another side. I think the correct approach (if it isn't a case of cost) should be to ask the patient, not to simply assume and pick an approach that only applies to some people. A simple "would you like to receive a scan at X months, or would you prefer to have an appointment to discuss your current symptoms and feelings?" would be all it takes.

I haven't been told I could request a scan, in fact we had to push multiple times for them to say the words "well yes you could pay for a scan". It does seem the approach is different across the country. I will certainly continue pushing until I get an answer I am happy with.

Thank you for the best wishes Julie, and the same to you.

Thanks Anglars. I will certainly continue to press until I receive an acceptable response. As yet I have not received a suitable one. From the perspective of someone with cancer, aside from some people not wanting continued scans due to anxiety, I can't think of a reason other than cost. I'm sure there is more to it, I've just yet to hear it. Hopefully my continued pressure on the matter will get some pro-active results.