Q&A about cancer screening with Professor Amanda Ramirez - ANSWERS BACK

[RachelMumsnet]

What information do you think you need in order to decide whether or not to have cancer screening? The review on informed choice about cancer screening would like to know your thoughts.
 
The NHS is currently reviewing how it presents information on the benefits and risks of cancer screening, including screening for breast, bowel and cervical cancer.
 
As part of that review, Professor Amanda Ramirez, who is a Director of Informed Choice about Cancer Screening, wants your comments and questions about the information available for people invited for cancer screening. 
 
What would make that information as relevant, accessible and comprehensible as possible? Please post your comments or questions here before the end of Monday 17 September. We will link to Professor Ramirez's answers from this thread once they're back.
 
There's more information on the Informed Choices about Cancer Screening website and you can add comments about cancer screening on their site, too.

[nananaps]

Hi,
From bitter experience i would like to know about the reporting process.

Once the screening has been carried out, how long till results are given to the patient and just as importantly...HOW are those results communicated?

GP's do not consistently recieve results to their computer systems...even if they did, they do not have a system in place to communicate with the individual for whom the results are meant. I have heard time after time of people who have heard nothing for months sometimes, have then gone to their GP..who has no trace of any results, then begins the chain of time wasting and faffing trying to get results when no one knows anything about them!

Its the uncertainty AFTER the procedure IYSWIM. This should be clearly advertised as such "XX number of weeks after your screening, you will recieve your results from XXX. From there a plan for your care will be made.
Doesnt even have to be an appointment, could just be via letter...if all is clear of course.

The current system for those who have had bad news is appalling. CT or MRI scans results are not communicated for up to 13 weeks in some cases....whereby the prognosis for the actual cancer can be as little as 4-6 weeks. How on earth is this right?
They die before getting definitive results back!
Imagine getting an appointment through for your loved one, 6 weeks after you have buried them, to go and discuss the results of their MRI scan!
As i said..bitter experience here!

[ledkr]

Hello. I have been told I have high risk ovarian cancer as I had ca breast at just 27. There is a family history which is two paternal Aunts who were in there 40's but they are only half sisters of my Dads so im not convinced. The geneticist told me that it was irrelevant to find out if I had brca1 or 2 as the early onset itself pre dispositions me to Ovarian cancer.
I am now 45 and have annual ca125 tests and a pelvic ultrasound.
My question is this. Is there any more reliable screening for it and would it be a good idea to have my ovaries removed?
Thanks.
My tumour was not oestrogen receptive.

[Doyouthinktheysaurus]

My own experience of diagnosis and treatment of cervical cancer was very positive, with little more than 5 weeks from being told to my operation. Took ages for the results of my colposcopy though, must have been 7 or 8 weeks and because it had been so long, I assumed all must have been fine

My one huge irritation is that for the first 5 years post surgery I got very generic letters, either 6 monthly or yearly inviting me to go for a smear test and a leaflet kindly outlining the risks and how cervical cancer kills.....yes, I know! In those first few years particularly, this caused me an awful lot of distress.

I did attend for screening at the hospital but still got these letters until my last smear appointment, more than 5 years post op when i was told I didn't need any more smears and my name has finally been taken off the list.

More information about whether smears are safe during pregnancy would have been helpful for me. I was reluctant to have a smear during pregnancy as I had bleeding in the first trimester and really, I don't recall the Midwife being very informed as to whether it was safe or not. Things may have changed now though, this is going back a few years.

[chocoluvva]

If a patient presents with bleeding and reported tenesmus and haemorrhoids are negligible, where the patient is under the age of fifty would these symptoms be regarded as red flags for colorectal cancer and warrant swift referral for screening or might they be attributable to something else?

[EdMcDunnough]

I can give you an idea, Choco - first off you'd be tested for infection, (especially in certain circs, like post-antibiotic therapy) then probably for inflammatory bowel disorders (Crohns, Diverticulitis I think, UC) and then if nothing else, I guess they might worry about cancer - but you'd have a few explorations along the way in any case, so they would perhaps find anything unusual during that process.

Not an expert but that's my experience - hope it helps a bit.

[mielebosch]

Why on earth does the NHS still insist on mammograms?

Why are regular doses of radiation to healthy breast tissue considered a good idea, when there are other ways to screen for cancer?

When caution is exercised about dental X-rays, why such a cavalier attitude to X-rays to women's breasts?

[BelaLug0si]

There needs to be more information about the risks and benefits of screening so it's an informed choice.
The cervical screening invites should have more information about what different results mean, and relative risks.
Better education of sample takers - including a national register of sample takers so there's clear responsibility, accountability and ownership of the screening process at primary care. The sample takers need to have enough time for each screening appointment so they have the opportunity to ensure the patient has read and understood the invitation leaflet. The education should include clear information about the local structure of the screening programme, time frames, and names/contact details of the people involved.

Re doyouthinktheysaurus request. This is a case in point - I've got two suggestions for improving this. 1) create a marker on the Exeter system to flag patients who've had cervical cancer so different result/invite letters could be sent. This could be linked to the CRUK job that's run for the audit. 2) clearer information and responsibilities for primary care and gynaecology so they know to inform call/recall to cease recall on patients as here. The current system for ceasing after hysterectomy isn't working.

Amanda, I work in cervical screening - if you search threads on here about smear tests (try by my username) you'll find the questions that are regularly and frequently asked by women about cervical screening that they need to know to help them decide whether to attend for screening, what they tell others about it and how it influences them to attend for screening.
What happens when someone attends for screening, including communication of results, investigation, treatment and aftercare has a big as influence as an invitation leaflet because of who they talk to family, friends, colleagues.

[BelaLug0si]

I also agreed that the guidelines for cervical screening during pregnancy could be clearer particularly re follow up after abnormal samples, treatment and which trimester "mid-trimester" means in NHS CSP document 20.

[VintageEbonyGold]

I had a smear exam just before a move, when I registered at my new gp surgery I informed them I had just had my smear test. For about 3 months I was repeatedly sent, increasingly demanding/abrupt letters to get my smear test done so I didn't die of cancer.

I'm not stupid so found the scaremongering/patronising letters rather annoying and wonder why such tactics?

If women aren't attending through fear/uncertainty, bullying isn't going to change that.

More information on the process might though.

[CoteDAzur]

It would help to know what kind of family history would warrant demanding screening tests. Many cases of different types of cancer on one side of family, all late onset. Does that mean I should be regularly screened for all?

(I know the answer for myself but this sort of info is largely lacking from the public sphere imho)

[dippywhentired]

I agree with CoteDAzur - more information is needed on when screening is necessary with a family history of cancer. My mother had breast cancer, diagnosed at 44, she died aged 51. GPs don't seem particularly interested, but I am now not living in the UK and have been told I should have routine mammograms every 2 years from the age of 34 (ie. 10 years before my mum was diagnosed). I have no idea whether this is best practice, or whether I would be putting myself at risk by exposing my breasts to radiation from a relatively young age.

[MTBMummy]

My question is about age, my mum has bowel cancer, and I recently visited my GP as I had some of the symptoms mentioned, she told me I was too young to worry about it and just gave me some supositories and said it would clear up - 3 months later and I still have the same problems and a few more, but it's a humilating experiance as it is, never mind going back when you've been laughed out the office.

How do I go about requesting screening if I'm not a target group? and preferably not going back to my GP

[MissPerception]

MTBMummy - you need to change your GP.

[chocoluvva]

Go back and explain your worries.
My mum had bowel cancer too and my post refers to the symptoms I had which turned out to be bowel cancer too (in my forties).
HOWEVER bowel cancer in a relative over the age of 50 is VERY UNLIKELY to be hereditary. There is more than one type of bowel cancer - the type which is more likely to be hereditary would most likely have been found by now if you had it.
Bowel cancer is being seen in under 50s more often than it used to be though.
Colonoscopies are carried out even in small hospitals and there is also a (not very reliable - but easy) blood test.
Hope your mum is okay.
I don't mean to be alarmist - better safe than sorry as the

[mielebosch]

That would be one heck of a lot of radiation to healthy breast tissue, Dippywhentired. The effects are cumulative. I wouldn't do it.

[CoteDAzur]

dippy

I'm in France and my gynaecologist sends me for a mammography every two years. My father's sister had breast cancer. Slightly more optimistic situation than yours, because she was over 50 when diagnosed and apparently it's better when breast cancer is on the father's side than the mother's. In other words, my experience suggests that you should indeed be going for mammographies every two years.

[CoteDAzur]

Once every two years rather than every year because of radiation concerns. However, with your mum (a parent you share half of your DNA with) diagnosed at the age of 44 (early onset), in your place I would not miss regular screening.

[dippywhentired]

Thanks CoteDAzur - that's interesting as nobody seems able to tell me whether I am more at risk, seeing as no-one else in the family has had it (mum's mother is 90 this year, both her aunts were late 80s when they died of other things). Also, from what I've read, mammograms in younger women aren't supposed to be particularly reliable because the breast tissue is more dense.

[dippywhentired]

*I meant I know my risk is higher than if mum hadn't had it, but not if this is greatly increased,etc.

[HoleyGhost]

Clear information about the incidence and risk of the disease. Clear information about the risks of false positives and treatment of the same.

If an abnormality is detected, information on waiting times for treatment, and revised risk factors.

[BelaLug0si]

VintageEbonyGold
The likely reason for you getting the invitation letters even though you had one just before you moved is that the main (Open) Exeter database is first updated with your new registration, then your screening history follows. Sometimes this takes several weeks (don't know why, probably due to medical records moving and Connecting for Health) so in the meantime the default setting is to send you reminder letters. This is a failsafe - it's designed to make sure no one gets missed from screening, so it does mean that some people could get more letters (which isn't great) but possibly better than someone not getting a letter.
I can understand why you weren't happy about it.
The GP practice should/could have rung their local call/recall agency (administration of the database) to tell them you'd had a smear recently. This ties in with my earlier suggestions - the reception and admin staff in primary care need more information.
In the lab I work in, we run information days for reception and admin staff as well as sample takers because we recognise that they are often the people having the most contact with the public and this hopefully improves the service.

[BelaLug0si]

Hullo HG - any news?

[BelaLug0si]

Sorry ignore me!

[HoleyGhost]

After much chasing, I just got a date for colposcopy. It has been a long wait since I had the smear on the 16th of June!

[VintageEbonyGold]

Bela, that I understand completely, however, I did inform my gp surgery after the first letter that I had recently had a smear, I still went on to receive letters that weren't just inviting me for a smear but basically saying I was a fool and more likely to get cancer if I didn't do as they ask. This was all gp correspondence.

The gripe I have is that the smear I'd had was the end of my 5 year, yearly smears post colposcopy so I was quite anxious for the all clear and didn't need pointless gp bullying.