Raising Awareness

Gill

Bowel Cancer - Screening

Well, I've found out that GP practices receive details of patients who fail to return their screening kits. About 44% of over 60's (in England) fail to complete the test. Given that around 40,000 new cases will be identified in the UK every year and that 16,000 will die from bowel cancer it seems to me that screening saves lives.

I have contacted my GP and asked whether they do any follow-up of non-responders. He admitted that they don't, but following my email they have now started to do so.

I just wondered if anyone else out there would like to check whether their GP surgeries follow up on this information. Here is a link to a document that has suggested approaches to contacting patients (Page 10 and 11).

www.canceralliance.co.uk/...uide%20to%20Bowel%20Screening.pdf

If we could all have a go at this, we might save lives! If anyone wants a copy of the email I sent to my GP, please PM me.

Gill :x:

Ally13

I had several tests in my 50s which missed my cancer. False negatives. Developed symptoms late fifties, and fobbed off - quite common I know - for 9 months.
The FOB failed me. Friend died within 4 months of diagnosis, though she had done the FOB for years.
So, both FOB and GP failed me.
GP’s don’t seem to know BC symptoms.
Cons said tumour could have been there for 10 years. Worse is the false sense of security.
Latterly saying to GP ‘and I did the test”.
:x::x:

Gill
Quote from @DianeS:
If I had been diagnosed at 50 @SariDaffs I would not be Stage 4 either. Mine went hidden under the label as IBS for years. Wish I had had a test at 50

M too @DianeS I was diagnosed at 58 at Stage 4, inoperable and incurable. Mine was hiding as gallstones (have then as well) I feel privileged to still be here nearly two years post-diagnosis. I have to say I didn't realise that the FOB test picked up so few positive results!

steve707

At 60 I received the screening kit and thats where my journey started, no previous signs or issues so where would I be now. In a far worse place I can be sure of. I was diagnosed as T4 N2 M0 Dukes C1. Stage 3. So I encourage whoever I meet to do the test.

Gill

@EmilyS @Bear G @WendySue @Elmac @DianeS @SariDaffs @ElaineG and everyone else!

Great news again!

I've heard back from my new Practice and they discussed my email at their Clinicians meeting this morning. They've agreed to talk to patients who haven't returned their kits when they come in for appointments. They didn't feel they had the manpower to contact everyone by phone. They've asked if I can supply them with awareness posters etc for the waiting room so I can order those from this site! That's two out of the two I've contacted who are going to do something. Trying hard to get Bowel Cancer more into the spotlight!

Gill :x::x:

Bear G

Great result @Gill , brilliant!
:x::x:

WendySue

Fantastic news @Gill!
:x::x:

DianeS

Great news @Gill :x::x:

belinda66

@Ally13:

"The FOB failed me. Friend died within 4 months of diagnosis, though she had done the FOB for years."

Sorry to hear that - these are such desperately sad stories when the outcome could be different. GPs vary enormously in their awareness of symptoms.

The FOB test is a misnomer really: the public are often under the impression that it's a cancer test when it's a test for blood. I don't know if it's the media that's created that false impression, the government campaign or people themselves. A friend of mine said she'd had the all clear for cancer after doing the FOB test and was surprised when I said that it was only to find blood and that tumours don't always bleed and if they do may not bleed at time of test. The colonoscopy testing from 50, or maybe 45, is the only way to go forward. It's frustrating that an excellent diagnostic procedure exists but isn't utilised to full potential.

WendySue

@belinda66 I had not been aware of the limitations of this test until reading this thread. I wonder if the false impression is because the drawbacks are underplayed in case even fewer patients do the test. Are patients advised when they get the results that a negative result does not mean they are cancer free and should be alert for symptoms?
I agree that routine colonoscopy is the way forward to be as routine as being offered the tests for cervical cancer and breast cancer. However seems unlikely in the current climate. I was in treatment with a 70 year old man who had been identified through the FOB test and there was also a family history- yet having been advised of the result he was told by our colonoscopy service that he would have to go in a queue for a few weeks due to demand. He decided to pay privately at the same facility and things were so urgent that he was kept in after the procedure. He was fortunate he could afford to pay but no one should be put in that position after the test. So how likely is it the NHS will introduce routine colonoscopy?
:x::x:

Ally13

Hi @belinda66 Yes, I agree with you. Colonoscopy from age 50 for everyone is the gold standard. But I guess cost would be prohibitive. Knowing what I know now, I would have gone privately for colonoscopy from age 50, especially as my dad died of BC. Met a 50+ man in Maggie’s Centre, who had been sent away from his GP, diagnosed with constipation, who subsequently paid privately for colonoscopy, and diagnosed with stage 3 BC. What happens to those who don’t have the money? So sad.
:x::x:

SariDaffs

Great news @Gill, I am seeing the GP on Monday and will bring this up then!

Sarah
:x::x:

Clarissa

@WendySue, in answer to your question about patients being advised when they get the results, I was fairly sure that that they are. Wonders will never cease, I’ve found the letter dating back to 2014 when my result was normal and here is what is says.

“The leaflet that you received with your screening invitation letter explained to you that no screening test is 100% effective, so a normal result does not guarantee that you do not have, or will never develop bowel cancer in the future. Being aware of the symptoms of bowel cancer is still very important.” It then goes on to list the 4 most common ones.

I was diagnosed through the screening program in 2016 & couldn’t fault the information I received from them. I didn’t think it gave a false impression. I did 3 tests, the first was unclear so I was asked to do another. This came back as normal, but I was asked to do a 3rd because, as they said in the covering letter, bowel tumours do not bleed all the time. It was the 3rd test which came back as abnormal & led to my diagnosis & successful surgery.

Clarissa

WendySue

Thanks @Clarissa for sharing your positive experience especially that they tested again after a normal result. Yet as @Ally13 post shows the test does not pick up all problems. I would still like it to be introduced at age 50 in England and Wales despite the limitations and for everyone to use their kit. Yet routine colonoscopy is offered in other countries and is surely the way to go to avoid the personal and financial costs of late diagnosis.
:x::x:

WendySue

Thanks @Bear G but note rollout is only taking place in England. Another issue to raise with my Swansea MP who has still not replied to my template letter from Beating Bowel Cancer!
:x::x:

Bear G

And not much of England yet!

Barbara

@Bear G and it’s flexisig not colonoscopy so probably won’t find right sided cancers like mine. Though if I’d had it I guess they might have asked questions which might have made me realise I had symptoms which needed investigation. Hey-ho!

Bear G

This blog from Bowel Cancer UK explains a bit more about the rollout of FIT in England.
It’s already available in Scotland. Not sure about Wales and Northern Ireland

Bear G

I know @Gill , my GO had a note to ask what I knew about it as she hadn’t received anything when she reached 55 a few months back.
The roll out is poor to date but can’t be extended until they get more trained endoscopists!
I believe it’s part of this refocusing of resources they keep talking about.