NHS Post op follow up scans

The value of follow up scans in terms of how the patient is managed after the results are known is possibly what divides opinion. A negative or clear scan means no tumours are detected (not necessarily that one is cancer free). With recurring cancer the clinicians may well have exhausted their arsenal of treatments that prolong survival and can only offer supportive care. I lost my husband to a recurring cancer (melanoma) 3 years after resection with no follow up scans.  We lived every day of those 3 years to the full with only the thought in our mind the cancer might come back not the certainty that it had come back. Knowing he had small tumours seeded throughout his body would have denied us our happiness during those years. It depends if the patient wants the bliss of ignorance or not. 

Wow! I didn't know the NHS doesn't do follow up scans :-0 I know the CT scans can't pick up cancer cells in the tissue until it become a tumour but hopefully a small tumour could be removed more easily. I agree with the damocles sword reference - that really is how I feel. I was horrified that I had advanced cancer when I was diagnosed and probably had it for a while before symptoms started. Also what symptoms do we look for, if it metastases to another part of the body? - I have variety of aches and pains that come and go because I'm rather middle aged. I could easily explain various symptoms away. So I'm not sure how the reasoning tracks around not doing scans unless there are symptoms. It really sounds like cost cutting/saving exercise. 

I'm fortunate enough to have private health insurance.  I had 3 monthly scans in the first year and then it goes to sixth monthly until 5 years. There's also an endoscopy at 3 years post op. I used to get quite anxious around scans. Now 18months post surgery and I do get a bit anxious but not as much.  I find them reassuring. 

During one of my chemo infusions, I met a lady who was on to her second or third primary cancer. She was inspiring and gave me hope because she was getting impatient about the staff getting her infusion going as she had lots to do that day. She said as long as you have a good surgeon and good chemo you'll be fine.  I think I'd add to that catching it early enough. 

Hi 

It's interesting to read yours and others concerns as Andy my husband has had pre op chemo operation and now 3rd of the post op flot . 

I'm also concerned as I asked about andys follow up scan and was told that after the chemo it's presumably cured ( I dont ike the word presumably) so would be no scan as they can cause cancer ?? But he'll be under the care of the cancer nurses if he has any problems.

Andy is part of the sarong trial but one which doesn't do the scans . My concerns are that he had no symptoms as this tumour was found through a routine blood test..

Take care everyone.

Best wishes 

Vonn +Andy 

Xx

Hi WC79

This is a question I asked numerous times after my husband finished his treatment for OC .The answer I heard from some of the medical staff at the hospital where my husband had his surgery was , scans are simply not offered unless new symptoms occur because the aftercare is based on an individual need .eg At what stage OC is diagnosed ?  How the patient is feeling post treatment? .If the patient is experiencing any problems?

I have to say when my husband reported pain in his shoulder twelve months post treatment he was given an appointment for a CT scan and within two days had his scan and the results were back within a couple days. He was also given an endoscopy within 24 hours on another separate occasion when he reported burning in his chest .(Both non cancer related thankfully ) So once anything is reported it seems the response is very quick , from our experience anyway .

It is concerning though that in some cases there may  be no symptoms of a recurrence and I would’ve expected all cancer patients to be offered scans as part of the routine aftercare pathway 

regards J 

It's so hard to know really.  I think for me there are bits I don't understand.  If there is a recurrence,  what are the chances of treatment prolonging a reasonable quality of life or keeping the cancer contained? For me if the prognosis is poor and possible treatment to extend life by only a short amount of time with lots of side effects, then I'd probably not really want to be scanned. If scans give me a chance to then be treated to extend my life of a reasonable quality or contain the cancer, then I would want scans. 

I think a key part for me is what is really driving the 'no scans unless there are symptoms' policy - is it money or is it based on patient interest? I'd like to see the evidence base for this. I worked in the NHS in mental health a long time ago and one of the driving forces for me leaving was the constant pressure of provide great patient care but for little money.  There was constant cost cutting with the message of increasing efficiency which is nonsensical beyond a certain level of cost cutting. Hence I'd like to see the evidence base. 

I too have been told no routine scans, this seems to vary all over the country. I was diagnosed squamous cell carcinoma  T4 N1 M1 in November last year. It had spread to my lungs. I had 4 rounds of chemo, no radiotheray as near my heart. Had a scan in February which showed a significant response and it had disappeared from my lungs and shrunk. The last CT scan I had was in April after my treatment finished but I had to ask for that. I have my 3 telephone conversation with oncology on Wednesday and as I have had no symptoms I am pretty sure I will not get another scan, I have been told the same as others that the anxiety of scan does not add quality of life. Personally I would rather know what is going on in case it is too late. I am going to press for a CT scan in September which is 6 months and I think reasonable.

“7 Follow-up after treatment with curative intent

Is the routine use of CT and tumour markers effective in detecting recurrent disease suitable for radical treatment in asymptomatic people who have had treatment for oesophago-gastric cancer with curative intent? [2018]

Thanks for this.  So it's still an emerging evidence base. I suppose studies like the SARONG are trying to answer that. My private health insurance allows follow up scans, consultations, etc. I'd think private health insurance companies also want to keep costs low but they allow this cost. I wonder how this has come to be? Is it led by clinician experience/views?

Sorry there is a typo in my reference. The guideline in NG83. 
Yes that is how I interpret the response and how SARONG will contribute to a better understanding. 

I do know my husband would prefer a scan to be offered alongside his monitoring appointments because he feels he wants to be fully informed of what is happening inside his body , whether it be positive or negative . He feels it should be an individual choice on whether to accept scans or not and they should be offered to all .He said he will push for another scan when it comes up to his two years post treatment .He doesn’t view them as stressful or having any adverse effect on his quality of life , he prefers to view them as informative .This is just his view of course and not everyone will agree .

Just to add a CT scan enabled us to have a wonderful final seven weeks with my Dad who passed recently .(A very youthful 83 ) We knew what we were dealing with right from the beginning so there were no shocks ( only the initial one at his first and what turned out to be his final appointment) .We could plan each week accordingly and in his final week we sat with him talking and listening to his favourite music until he died peacefully and pain free in his sleep. which we were told later was an ‘amazing end’ considering the multiple Cancers he had .So although the scan uncovered very negative news at least we could plan on how to make whatever time Dad had left the best time as possible. If we hadn’t known then that precious time we had with him would’ve been marred with stress and worry of not knowing what was wrong .He passed happy and content so that brings us a lot of comfort .

regards J