Followup and monitoring

[Charlie36]

Does anyone know of any NICE guidlines on followup care and monitoring after this sort of surgery please? In Europe, USA and Canada it appears that often annual scans and blood tests are routinely performed.Given the maxim of "the earlier the detection the better" where secondaries are concerned as well as primaries, why is this cancer not accorded routine monitoring as with most other cancers?

[DaveChuter]

Hi Charlie,

I am now years out of surgery, the first 2 years I had 3 monthly checkups, then 6 monthly up 5 years and now yearly but with full contact details of the hospital team if I need them.

Since surgery I have had a couple of scans, countless endoscopy's and one round of keyhole surgery all to check out possible problems or to fine tune plumbing system.

Some hospitals do sign off patients after five years which may be a set guideline but some do keep to yearly check ups for life, all down to the hospitals themselves.

I believe that my cancer and where it was, would not show up on any current blood tests, but is mainly only found by endoscopy or a scan, so blood tests could be misleading unless looking for sometime else.

Oesophageal cancer is growing in numbers being found on a yearly basis, there is no routine monitoring as with breast or prostate cancer yet and I do not know of any plans to set it up in the UK.

Early detection is critical for us, it is down to the GP's to refer for endoscopy if any history of long term reflux or swallowing problem.

The key must be early awareness of the general public to go to GP in the first instance and then GP awareness to refer for endoscopy as the only way to check if cancer present. At the moment, a GP may only come across one case a year out of 20 or more endoscopy referrals.

I am not medical trained so all above is from experience as a patient talking to consultants and specialists only during my treatment.

Have you asked your hospital team about this? they will know more than me.

Best regards,

Dave C

[cherrybailey]

I can only answer this from my experience, after 6 months of my op (odd visit in between, had regular 6 month scan, blood test.

A number to ring in between if I was concerned about anything.

Moved to another part of the country, don't believe in doing the scan, blood, every 6 months, (may not show up) but have a number to call if I am concerned, I have.

Got the old pain back, had the scan, blood, endoscopy.

It must be where you live in the country, I have been lucky, England do the same!

We are a small percentage with this cancer, compared to other cancer's!

[cherrybailey]

Not all g.p's Dave. Can give you a horror story with mine at the time I should have been diagnosed early! Have the best g.p now!

[Charlie36]

Hi Dave.

Must stress my question relates to monitoring and followup after the surgery not the initial diagnosis and treatment. You sound as though you have had a lot of followup regarding scans and appointments following initial surgery but all I have had is one stretch, one chest xray and 2 seperate appointments (all of which I had to phone up and request) in 16 months. Is it really all down to where you live? I currently have received no preplanned appointments. I had a lump on my collar bone last week which the GP referred for xray (thankfully, my ra!) but again this was at my instigation and not part of any "routine" followup.The checks on my husband with colon cancer and later lung cancer followed a much better routine and intensity and allowed him to live 10 years after initial diagnosis. My second cousin, after breast cancer, has had superb followup checks/monitoring and has just returned from a cruise 6 years on.I cannot understand why "our" cancer is not better monitored and no national or regional guide lines seem to be available? Or if they are, I cannot access them hence the question! Is it just up to the individual hospital or PCT? Given the costs of this surgery (£20=25,000) surely it would make sense to try and improve the whole stats by ensuring good aftercare and monitoring no matter where you live? And this is a cancer that sadly is becoming more common. I find it very frustrating to have gone through all this, as you all have too, and then to feel so alone regarding the future!

best wishes,

Charlie