"Very low risk" of colon cancer, so surveillance is unnecessary?

[bennevisplace]

Yesterday arrived a letter from my local NHS Hospital Trust. I get them quite often, and as it happens I was anticipating an appointment with a physio about now.

But no, this one was more of a "dis-appointment". A letter from the Department of Colorectal Surgery was overdue, I thought, but as you can see from the above, that appointment is no longer necessary - now or ever - as I am no longer considered at unusual risk of developing colon cancer. Furthermore, I'm even considered "at very low risk" of developing colon cancer. Nice to know!

Now, we can debate the secondary cancer risk level of a CLL patient with a family history of colorectal cancer, and with sessile polyps found at each of the last two colonoscopies. What is beyond debate is that "the polyps at your last colonoscopy" were not "under 1 cm" (as the colonoscopy report confirms, and the report from 5 years previously adds emphasis). One therefore marvels at the temerity of the concluding sentence: "In line with this and with careful considerations, we have therefore taken you off our waiting list for a repeat colonoscopy".

Having lost one sister and one dear friend to bowel cancer diagnosed at an advanced stage, this is a bit of a hobby horse for me.

The UK's dismal record of cancer mortality due to late diagnosis was highlighted on BBC Radio 4 this morning in an interview with Shadow Health Secretary, Wes Streeting. Bowel cancer - in 2017 the second most numerous killer of all the cancers in the UK - contributes greatly to this unhappy state of affairs, despite the widely canvassed Bowel Screening Programme for the "at-risk" 60-74 age group.

This national programme is based on faecal immunochemical testing, which screens for concentration of faecal haemoglobin (f-Hb). Research in 2020 called out the current screening programme, in that the f-Hb threshold used in England was estimated to identify only 47.8% of bowel cancers (CRC) and 25.0% of high risk polyps (HRA) journals.sagepub.com/doi/10... and evidence.nihr.ac.uk/alert/n...

The recommendations of this study are not as straightforward as lowering the f-Hb threshold to a level that would identify many more cancers and potential cancers, say 82.2% of CRC and 64.0% of HRA, because that would imply offering 7.8 % of all participants screened further investigation by sigmoidoscopy and/ or colonoscopy. Instead the researchers recommend multi-level f-Hb thresholds leading to different screening pathways mostly involving delayed screening or surveillance; only in the event of "high blood concentration" would a standard colonoscopy be offered. The proposed system takes no account of pre-existing polyps, familial history of CRC, or statistical likelihood of developing a secondary cancer because of immunosuppression.

It seems to me that the above proposals are an as-yet untested refinement of the current f-Hb based screening programme, which might or might not pay dividends. We shall see, but one suspects that the NHS budget will be the principal benefactor.

Meanwhile, I'll be composing my response to the offending letter.

[bennevisplace]

Thanks for your suggestions, all logical. Face-to-face used to work in the days when a patient could get a referral from the GP to the consultant and you knew who you were going to see. Because this letter comes from someone who is not THE consultant (i.e. the department head) but a "senior clinical endoscopist" spouting national policy, I will have to address my letter to the department head or somehow obtain a meeting with him. We've met before and I know he can be a bit difficult, so I reckon it might be best to write, cc my GP and haematologist. Then at least it's on record.

Incidentally, said consultant five years ago wrote that I should have a 1-year follow-up colonoscopy after the previous colonoscopy because they had found a polyp. When the time came, he amended his advice to 5-year follow-up. And now here we are, the advice is re-amended to no follow-up.

[SofiaDeo]

This sounds like a generic letter to a "standard healthy patient". Our disease state puts us at risk for secondary cancers; you should be exempt from this policy and continue to have screenings.

[bennevisplace in reply to SofiaDeo]

I'm glad you see it my way. Can I quote you?

[SofiaDeo in reply to bennevisplace]

How about the American Society of Hematology? (2015)

ashpublications.org/blood/a...

"Conclusions: secondary malignancies are not infrequent in patients with CLL and their occurrence is not clearly related to biologic markers or to the treatment performed. A careful clinical follow up, encompassing sex and age adjusted tumors screening, is advisable for an early diagnosis and appropriate treatment of secondary malignancies in CLL."

Or the CLL Society? (2023)

cllsociety.org/2023/04/nurs...

[jabee]

I agree you should push to have regular screenings.

My mother died at a very early age from bowel cancer. My brother lives in Surrey and has had regular screenings over the last 30 years as a result. I live further South and have always been told that my family history doesn’t warrant surveillance. The postcode lottery definitely exists in the NHS.

[CoachVera55]

I definitely agree, get back on that list asap!!! My new young OB/GYN told me that I no longer need annual pap smears or Mammo, that her predecessor (my amazing board certified caring ob/gyn) was old, old school & running more test than necessary. No debate, I stated that my Aetna pays for annual testing & I will be here 1X per year if things are normal & more if any abnormalities are found & she agreed🤷🏽‍♀️ It seems that insurance companies are trying to save money by doing less preventative procedures which makes no sense to me. An ounce of prevention is worth more than a pound of cure🤦🏽‍♀️I am officially scared of the Medical Systems🙌🏾

[bennevisplace in reply to CoachVera55]

I'm all for preventative medicine, but it's surprisingly difficult to sell. In a private sector, insurance based healthcare system, the supply side of the industry has no stake in prevention.

Where public health is publicly funded one would expect the system to back prevention more strenuously, but here, to me, the efforts to date have been very limited. Perhaps the major success has been the restrictions on smoking and on tobacco advertising, but now we have burgeoning obesity and diabetes to deal with, most worryingly in children.

Childhood nutrition lays the ground for future health, and concerns have been raised over current government policy regarding which kids are entitled to free school meals bigissue.com/news/social-ju...

[SofiaDeo in reply to bennevisplace]

One reason I chose my particular insurance plan, they are very proactive in getting patients to do preventative care. Wellness visit has no deductable/copay, they sent me a Cologuard unasked, they send reminders about other things.

[bennevisplace in reply to SofiaDeo]

That's good, I guess the insurers are interested in protecting their balance sheet. UK health insurers also offer their customers incentives like subsidised health checks, gym membership etc bupa.co.uk/health/health-as... But the private healthcare sector in the UK, although growing, is still dwarfed by the public sector i.e. the NHS, and that's where we need to get more proactive. As always though, the noises politicians make about preventative healthcare (is "preventative medicine" a contradiction in terms?) while they are in opposition seem to die down when it's their turn to govern. Progess has lagged for decades.

The trouble is, preventative healthcare isn't a quick fix; it tends not to make headlines for long and doesn't yield votes at election time; while Boris Johnson, for example, could trade on the fresh memory of government's rapid reaction time on Covid vaccine rollout (we won't mention its reaction times regarding other aspects of Covid, the statistics speak for themselves).

[CoachVera55]

So backwards but maybe if the cost savings can be shown. Give those numbers more advertisement 🤔

[LeoPa]

It's all about money. Either making lots of it or not having to pay much of it. Sad state of affairs everywhere.

[SERVrider]

Perhaps I was just lucky or Guildford is one of the lucky postcodes but my GP spotted low ferritin levels in my annual diabetes FBC. He referred me to the colorectal department at the Royal Surrey, within a fortnight (two weeks for US readers) I was offered a gastroscopy/colonoscopy. That found a bleeding ulcer in the ascending colon. Some four weeks later, I had a right hemi-colectomy done. (It would have been sooner but I went to France for a long weekend so they deferred it). The excised colon went to the path lab for histology which found it was a benign polyp though it was bleeding into the gut. I am now on the list to have a further colonoscopy in 3 years' time and believe it will be at three yearly intervals after that. Oddly, I had had the bowel cancer screening test pack only 9 months before and that had not revealed anything. The ferritin in the blood count was clearly a more accurate test.

[bennevisplace in reply to SERVrider]

Interesting to know that. Your experience with the FIT test is in line with the research I referenced above, which found that the current test was missing 3 out of 4 adenomatous polyps.

10 plus years ago a German company developed a polyp-specific blood test with a claimed 75% sensitivity, but it's not peer reviewed or widely used. I tried it twice and it was correct both times: polyps confirmed by colonoscopy.