A future without screening colonoscopies. - PMRGCAuk

PMRGCAuk

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A future without screening colonoscopies.

SheffieldJane profile image
39 Replies

interesting developments for diagnosing bowel cancer.

medscape.com/viewarticle/99...

Many of us experience gut symptoms with our diseases, I for one find this interesting.

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SheffieldJane profile image
SheffieldJane
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39 Replies
Telian profile image
Telian

Haven’t read it yet Jane but a simple blood test instead of a Colonoscopy appeals to me. 🌺

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toTelian

Don’t get too excited - says this -

Among the best-known MCD tests now sold is Grail's Galleri. At this time, however, the Galleri test, which tests for 50 types of cancer, should be used in addition to recommended colon cancer screening tests, such as colonoscopy, the company's website says.

SheffieldJane profile image
SheffieldJane in reply toDorsetLady

It has to be a move in the right direction though. I am sensing great developments in the research field.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSheffieldJane

Not saying it isn’t a good move…. and yes agree there’s always a move forward.. but as we know not always as quickly as we’d like..

Telian profile image
Telian in reply toDorsetLady

Thanks DL.

Excitement subsiding now.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toTelian

Sorry, don’t mean to burst your bubble… just being realistic - see reply to SJ 🌸

SheffieldJane profile image
SheffieldJane in reply toDorsetLady

Also the US is pretty litigious.

Telian profile image
Telian in reply toDorsetLady

It will happen one day but don’t think in my lifetime. 🌺

SheffieldJane profile image
SheffieldJane in reply toTelian

There is mild excitement in the medical field, I have read about this elsewhere. Qualified optimism I would say.

Songbird69 profile image
Songbird69

That would be amazing. I abhor colonoscopies and the prep, and have to have them regularly because of a history of bowel cancer in the family.

Got one in a couple of weeks for other reasons. 😩 Joy.

SheffieldJane profile image
SheffieldJane in reply toSongbird69

I am a veteran too. I don’t think I would be scared another time. I found the camera endoscopy much, much better - ask about it.

Songbird69 profile image
Songbird69 in reply toSheffieldJane

I can’t have the camera one - at least not yet. I have Crohns strictures and inflammation on top because of my other issues and the capsule wouldn’t get through! Otherwise I would love that! Well - not love, but a good alternative. 😊

SheffieldJane profile image
SheffieldJane in reply toSongbird69

Let’s just keep hoping. 🙏

Longtimer profile image
Longtimer in reply toSongbird69

Both my parents died of bowel cancer quite young. I had colonoscopies until I was 65, then too old for them!....home blood tests now. My nephew is 35, has been to A&E 4 times in agony and blood in poo (sorry!) doctor 3 weeks ago ask for urgent referral to hospital......he has heard nothing!.....very worrying.......he is obviously worried because of family history......I still think colonoscopies are best as I have on a couple of occasions has polyps removed which they said could develop into cancer.....did n't like them, but obviously relieved when all clear.

Songbird69 profile image
Songbird69 in reply toLongtimer

Funny how so many tests stop when we get to 65. Not sure why that should be so.

I guess all your nephew can do is keep pushing. Is he in the U.K.?

Can his GP at least organise a stool test? They can tell a lot from that.

Longtimer profile image
Longtimer in reply toSongbird69

Yes in the UK. Hes had lots of stool tests all with blood in that’s why she made him an urgent case, no response from hospital yet!

PMRpro profile image
PMRproAmbassador in reply toLongtimer

PS, wonder if using the emergency approach would work - sending him to the ED with a letter. Here I have met the endo department taking a mobile device to the ED for an emergency case.

Longtimer profile image
Longtimer in reply toPMRpro

I would have thought his doctor should have done that by now. He has been folded in agony to A&E 4 times, saw reports of blood in his stools , why couldn’t they fast track him there? No wonder people end up paying for tests etc to possibly save their lives!

PMRpro profile image
PMRproAmbassador in reply toLongtimer

Depends on the hospital probably, I can imagine in my daughter's department they would send him to the AMAU to do some tests though if what is required is a colonoscopy, I doubt they would welcome the bowel prep performance!

Longtimer profile image
Longtimer in reply toPMRpro

Norfolk and Norwich hospital. Saw program couple of weeks ago about their A&E there were 6 ambulances queued outside, apparently that was good as it once had 29! So frightening!

PMRpro profile image
PMRproAmbassador in reply toLongtimer

York was on divert a few weeks ago, all sent to Scarborough which is smaller - it was hell on earth.

Longtimer profile image
Longtimer in reply toPMRpro

I bet!

PMRpro profile image
PMRproAmbassador in reply toLongtimer

They have just removed the 2 week cancer pathway thing - the one thing they needed.

Longtimer profile image
Longtimer in reply toPMRpro

Shocking, and disgusting.

SheffieldJane profile image
SheffieldJane in reply toLongtimer

Stop it Longtimer, you are spiralling sweetheart! ❤️🐦‍⬛

Songbird69 profile image
Songbird69 in reply toPMRpro

Bad news.

Stills profile image
Stills in reply toPMRpro

Cancelled it altogether within NHS?

PMRpro profile image
PMRproAmbassador in reply toStills

The 2 week time limit. They are still prioritised as far as I know.

Hoofprints profile image
Hoofprints in reply toPMRpro

Do you mean the government has removed the two week cancer pathway? When and where was this announced? It was a brilliant pathway.Do you know what if any time limits they have replaced the two weeks with? I hope there is still a cancer pathway.

I came away from a routine orthopaedic appointment yesterday. I have been a long-time patient for my shoulder bursitis and tears there, as well as problems with my hands.

For the first time ever I was not given a follow up appointment but instead a leaflet telling me how to make a Patient Initiated Appointment - i.e. if it think I need another appointment after the next shoulder injection, ring up and ask for one. I have to do this inside 12 months.

This seems ridiculous to me. I have had ongoing problems for years and my orthopaedic surgeon has exercised her judgement and expertise to accomplish far more for me at each appointment than my totally disinterested rheumatologist.

She even wrote once directly to a so-called lupus expert who was managing my swollen, painful toes and fingers as resolving reactive arthritis to ask if I had something wrong with my immune system, such as an immune deficiency.

He wrote her a pompous letter back reassuring her that no 'my dear lady', I didn't have anything wrong with my immune system or any underlying sinister condition. Then 5 years later both an immune deficiency and a lupus-like autoimmune condition were finally (and after a long battle) diagnosed.

Without her intervention, I would be left with no treatment for my carpal tunnel syndrome (she ordered nerve conduction studies, scans and finally steroid injections which have greatly improved matters).

She has also been a great moral booster in terms of actually listening and responding to my symptoms, taking a pragmatic approach to treatment even where the blood tests look good or the nerve conduction studies are negative. She tries out treatment judiciously - as she says to her students that he patient knows their body best - try the treatment and see if the symptoms improve.

The leaflet I was given says this system is so the patient is more in control of their own management (or words to that effect). It claims to be empowering! The reality is that there's one less appointment in the system taken up by me now and therefore free to offer someone else, I have no Idea what the timescale is between me asking for an appointment and actually being given one, and if I forget to ring, or don't have worse problems before 12 months expires, I'll need to be referred by my G.P. What happened to dependable 6-12 month reviews?

Seems anything to massage the statistics for sake of targets but not a lot if creativity as to how to properly fix our staff and funding shortages!!😠 Sorry for the rant..

SheffieldJane profile image
SheffieldJane

I wrote a post, it disappeared and now I feel too dispirited to repeat it. They will be stuck for childcare, elder care, disability care and volunteering if we all shuffle off the mortal coil.

So sorry about your painful family history Longtimer.🙏

Dementia stalks my family, the kind Bruce Willis has. You can imagine how Pred head makes me feel. My husband is too kind to ever say.

Longtimer profile image
Longtimer in reply toSheffieldJane

Hard when we know what is in our genes, but I tell myself we live different lives now, fingers crossed. Dementia is in my DIL’s family but they all make a great age, which was rarer many years ago because of not living so long. We must keep supporting each other! We will get there 🙏

SheffieldJane profile image
SheffieldJane in reply toLongtimer

We are early onset. I looked after my mum for 7 years. It’s a cruel, personality altering disease, she didn’t know who I was. She was the age I am when it began. My Granny was 9 years older. My other grandma had MS and was cheerful, engaged and interested until the final days with no mobility or sight. I hope I have her spirit.

Longtimer profile image
Longtimer in reply toSheffieldJane

Awful, my granddaughter struggles with her grandma with Alzheimer’s, I said to her and my son, I don’t want to live beyond the time I don’t know my family, so tough for them.. Very cruel disease, especially so young!

SheffieldJane profile image
SheffieldJane in reply toLongtimer

We’ve gone all dark again. ☹️

Longtimer profile image
Longtimer in reply toSheffieldJane

How naughty are we. OH has potted up 7 big pots with bulbs, so always something to look forward to!

SheffieldJane profile image
SheffieldJane in reply toLongtimer

How lovely. My husband has filled up all our bird feeders because we are going away on Monday. We have gold finches, a couple of green finches, blue tits and coal tits and a few needy, elderly pigeons mooching about being needy. There are lots of big trees where I live, they are gold and yellow and my begonias are still flowering. There is some cheer! You are welcome, xx

Longtimer profile image
Longtimer in reply toSheffieldJane

Yes begonias still blooming wonderful. Big lime trees in our road and others in the garden, but so many leaves dropping. Enjoy that break away !👍

Hisue profile image
Hisue

Colonoscopy is a big “cash cow” in the USA. Like unnecessarily taking out teenagers’ wisdom teeth - drs here are reluctant to lose the $$$, regardless of medical advances.

Stills profile image
Stills

That’s good to know, let’s hope the R&D gets in to market asap

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