I recently read an article that showed that quite a large number of local and recurrences missed in post treatment clinical examinations are evident on PET/CT scans. In the sample about 23% of the sample that had had orophanrynx cancer deemed locally free at clinical examination a year after treatment had asymptomatic disease present discovered by PET.

Of course this argument is going to be countered by high costs of PET, but I dont think the argument is valid. At the moment the NHS is prepared to invest in clinical follow up appointments which are not cheap. It seems to me that clinical examinations seldom discover recurrences or mets in early stages when they are more treatable so it could be argued that in order clinical examinations more cost effective (discovering recurrence earlier when it is more possible to treat), they should be couple with occasional PETs?. (Frankly the clinical examinations I observed are no where near as thorough as the ones described in the article. If our experience is typical then event more recurrences are likely to be missed in a typical NHS clinical setting.)

As more evidence emerges about HPV related SCC cancer patients having better outcomes and less recurrence, surely it would at least be possible to develop an argument for HPV negative patients having more regular PET/CT checks?

Here is a link to the articles. WARNING is not for the faint hearted so some patients may not want to read.

http://jnm.snmjournals.org/cgi/content/full/50/1/24

Cathy

Hi Cathy

Despite you giving a warning I could not resist in reading your link. Ifound this very scary reading. I am 18 months out of treatment and have never had any sort of scan at a check up. My check up just consists of my consultant just looking at and feeling my tongue. You put your trust in them but I do have a lot of pain and sometimes am unsure as to his reassurance and afterall once you have had cancer you cannot help thinking about reoccurance.

Sue

Thanks for posting this Cathy and for raising the question.

It's something i have asked my consultant about ever since my treatment finished (about 16 months ago). I have been told/some would say "fobbed off" with "having too many scans isn't good for you", "scans are not completely reliable", "physical examination and self awareness are the best and safest way of diagnosing reoccurance" and other such sayings. Like Sue says, you put your trust in these people and thank goodness for their knowledge and expertise, however i do feel sometimes that their hands are tied by the costs involved in scans rather then the reasons given above and similar?!

Are there any studies showing that an increased number of scans increases the risk of reoccurance in itself, due to further radiation exposure?

Like you Sue, like us all at some point, we have pain and stiffness or just "unexplained" feelings which worry us and a 5 minute consultantion every 3 months doesnt do everything to allay our fears. Am i right in thinking that in the US PET scans are more routine post treatment?

Let's have the discussion at least!

gordon

These are the kind of issues we need patient advocacy for! I need your help to help me help yourselves. So please get involved with MCF and make the mouth cancer patients voice and concerns heard through the cancer groupings like Cancer52 and Cancer Collaborative Group that we are members of and attend conferences like Britain Against Cancer 2009.

Hello there.

So sorry, Sue I didn't mean to worry anyone. If think that you should take comfort in the fact that you are 18 months out with no clinical symptoms. Therefore based on the criteria used in the sample to determine true negative scans - no clinical symptoms 6 months after a scan conducted at about a year - you are almost certainly in the larger percentage of patients that are fine. Moreover, its good that at yor check ups you get a good feel :-).

At our hospital palpation of the area seems to be ad hoc.

Yes there are certainly risks to lots of scans and they may well not be necessary for everybody, but I am sure that there are criteria to evaluate patients who are at risk and would benefit from a scan and make people aware of them. In the US most patients seemed to get scans every 6 months.

My particular concerns are that my partner's primary was occult until he had a pet scan. Even following the biopsy following the scan (thatlater proved positive for cancer) his consultant said it looked like a perfectly normal tonsil. I am thus left wondering how would they be able to spot a recurrence?

Anyway I should follow Vinods advice and will look into the means on a day when I have a bit more time.

Sue if you are 18 months out the odds of recurrence are getting smaller by the day. You are nearly at the important 2 year spot, so I dont think you should let this particular study cause you much concern. I think the question is whether you feel that anyone in your position in the future should either be given a scan or given more information about why its not considered necessary, based on their particular cancer.

Best
Cath

Okay guys I am getting riled up! I had post op post radiation pet and ct in April! I just had my 6 month follow up from that and now it has spread to my lungs some of you all are farther out than me and have never had any treatments. Mine has spread to my lungs it is assumed it was there all along but undetectable on a ct or pet becuase it wasn't active yet! Well it's active now! I am not trying to scare anyone but for each and everyones piece of mind they should be and we should demand follow up scans it can go anywhere else!

Pam

Hello Pam

Unfortunately even PET-CT scans aren't 100%. In this study Early PET-CT Predicts Treatment Response of Head and Neck Cancer, the sensitivity of PET-CT was 83%, and its negative predictive value was "excellent" at 92% for detection of persistent disease at the primary tumor site. However, because it had a high false-positive rate, specificity was low at 54%, with a positive predictive value of 31%.
Link: explanation of terms used above

Best wishes

Vinod

Hi guys, Well I had a few PET scans in the early days fortunatly only biopsied I think twice as a result of them then rest of biopsies were at my Consultants request.
I am not sure oif the PET scan is reliable enough to trust but if they find a hot spot as they refer to it better to know and be treated thatn not know and die simple really.


Paul