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

(66 Posts)
RachelMumsnet (MNHQ) Tue 11-Sep-12 12:51:47

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 Tue 11-Sep-12 13:51:45

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 Tue 11-Sep-12 14:19:09

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 Tue 11-Sep-12 14:37:25

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 fineconfused

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 Tue 11-Sep-12 16:13:20

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 Tue 11-Sep-12 17:35:12

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 Tue 11-Sep-12 20:21:54

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 Tue 11-Sep-12 22:06:18

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 Tue 11-Sep-12 22:08:17

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 Wed 12-Sep-12 12:23:13

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 Wed 12-Sep-12 13:32:21

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 Wed 12-Sep-12 14:00:19

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 Wed 12-Sep-12 14:57:40

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 Wed 12-Sep-12 16:08:06

MTBMummy - you need to change your GP.

chocoluvva Wed 12-Sep-12 16:19:46

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 Wed 12-Sep-12 16:28:52

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 Wed 12-Sep-12 19:05:13

dippy sad

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 Wed 12-Sep-12 19:07:51

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 Wed 12-Sep-12 19:23:36

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 Wed 12-Sep-12 19:45:32

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

HoleyGhost Wed 12-Sep-12 20:04:21

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 Wed 12-Sep-12 20:13:21

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 Wed 12-Sep-12 20:13:44

Hullo HG - any news?

BelaLug0si Wed 12-Sep-12 20:16:41

Sorry ignore me!

HoleyGhost Wed 12-Sep-12 20:20:41

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 Wed 12-Sep-12 20:42:29

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.

VintageEbonyGold Wed 12-Sep-12 20:46:19

And it wasn't a recall for a poor swab either, it was poor communication at the surgery and a disregard of my information whilst they waited for the transfer.

Sorry if I'm ranting, it was just a wee bit stressful at the time and obviously still annoys me.

HoleyGhost Wed 12-Sep-12 20:51:49

The long waits for results causes so much anxiety. Is the harm this causes taken into account?

Doyouthinktheysaurus Wed 12-Sep-12 20:56:08

I got the same Vintage, because I had had cervical cancer and was seen at the hospital, bypassing the gp surgery I still got the damned letters and leaflets for years! No amount of talking to the gp surgery could stop them apparently, until it was agreed I didn't need any more smear tests!

Having been through traumatic surgery and dealing with the emotional fall out of being diagnosed with cancer, receiving a leaflet telling you how dangerous cervical cancer can be is not helpfulangry

CoteDAzur Wed 12-Sep-12 21:07:36

dippy - I was sent for my first mammogram at the age of 36, fwiw. Here in France, everyone is advised to have a mammography after the age of 40. In fact, mammograms are free in our local hospital for women over 40 (but I'm still sent to a private practice that charges $$$ because they have "better machines" hmm).

BelaLug0si Wed 12-Sep-12 21:48:49

VintageEbonyGold - absolutely I understand. It would be interesting to know if the letters came directly from your practice or said "on behalf of". If directly from the practice then I suggest taking it up with the practice manager (I'm assuming you're in England), if "on behalf of" then I would want to know why the practice did not pass on the information.
Doyouthinktheysaurus - there needs to be an update for the staff dealing with recalls in primary care. There is a system for them to send information such as yours through but quite often primary care think the screening lab will cease the recall. We can't do this because the responsibility sits with the people with a direct relationship with the patient. We deal with numerous queries every week trying to explain and sort out with primary care that patients shouldn't be having smears because they've had treatment and/or hysterectomies because there is a lack of knowledge in primary care about how to cancel recall, prior notification lists etc.
I do worry about what happens to the patients and reading your distressing experience here confirms my concerns.

I suggest any woman having a similar problem sees the practice manager, rings the call/recall office if the number is given on the letter, and if that doesn't work ask for the screening lead at the PCT. If all else fails then there are contact details for the national screening head office here

dippywhentired Thu 13-Sep-12 06:08:48

Thanks CoteDAzur - I'm over a year away from 34 at the moment and will probably be back in the UK by then where I don't think the guidelines are the same (most likely to save the NHS money). My sister is nearly 36 and has never been told she ought to have a mammogram.

My mum died from ovarian cancer, I would like to know who to contact in order to have screening. I have mentioned it to a GP but they didn't seem to think it was necessary!

MissPerception Thu 13-Sep-12 13:00:10

YouveCat. I think we need to remember the financial situation in the UK ( I assume you are there).

If there is something (anything) worrying you I would always suggest going private...just for peace of mind if nothing else.

I'm overseas and have paid for lots of screening. It's less than what a car costs for a servicing or MOT! Think about that.

VintageEbonyGold Thu 13-Sep-12 13:03:16

Bela, no it was the practise and I did take it up at the time, to no avail. My previous surgery handled the final 5 year smear and my anxiety over it very well. It's more a problem of some surgerys attitudes. I am very, very grateful for having had the screening and treatment so I hope I don't sound ungrateful.

It's just, if women aren't going for screening then bullying letters from surgeries isn't going to help, maybe a different tactic is needed.

VenetiaLanyon Thu 13-Sep-12 13:44:58

When should we start having regular mammograms ideally? I am over 40 and am paying to have them annually, although am worried about the radiation thing - am I being sensible?

MissPerception Thu 13-Sep-12 13:50:48

I pay for a private mammogram on a yearly basis. I have dense breasts and have had several cysts (all benign)

I do wonder about the implications of the screening ( I go to digital screening)

With your medical hat off Amanda; what would you, personally, recommend?

Doyouthinktheysaurus Thu 13-Sep-12 14:20:15

Thanks Bela, sometimes it's the small things that just tip you over from coping to not coping.

Time is a great healer and after the first 2 or 3 years it all became much easier to cope with but those early days were pretty tough.

mielebosch Thu 13-Sep-12 16:35:47

Amanda, what about thermal imaging for breast cancer screening, since it involves no radiation and seems to be more effective?

As described here.

A few people have said they are concerned about radiation.

purpleroses Thu 13-Sep-12 19:58:39

If my daughter has the HPV vaccine that's now available, will she be spared the regular smear tests that my generation have to endure? And since the test is available for the HPV, why don't they test everyone and vacinate those who haven't got it? I would much rather have a vaccine than endless smear tests.

ladygoingGaga Thu 13-Sep-12 21:20:56

Amanda, I have had abnormal smear results now for the last 3 years, with mild and borderline changes shown.
I have had 3 colposcopys, had biopsies taken at the last two, however the results have then come back with no abnormal cell changes. on the last occasion even I could see the area of change on the monitor.

I have been left more confused and worried as a result of the screening process, when surely I should be reassured.

No one can seem to tell me what could be going on, I have been to the GP and expressed concern, to be told, we will just keep you on 6 monthly smears until you get a normal result.

They don't test for HPV yet in the area.

Who do I go to now for answers?

LittleCatZ Thu 13-Sep-12 21:54:20

mielebosch thanks for the link on thermography, very interesting.
My mum was diagnosed with breast cancer around the age I am now (36). She had a large lump removed and got the all clear but it recurred and the cancer was very aggressive, she died within 6 months (aged 40) after the cancer had spread through her lymphatic system and caused lung spots and a brain tumour. It was horrific and my lovely GP (now retired) mentioned screening when I was pg so I said it might be something I'd consider in the future but I was bf for a couple of years and I've since seen the risks of radiation mentioned and have been reluctant to subject myself when I have no symptoms and screening could initiate cancer.
However, I do have the nagging doubt that early detection is important and much more treatable.
Amanda - do you have a view on thermography and is it available through a GP/on the NHS in the UK? I know I'll need to talk to my new GP but I suspect I might have a struggle to get screening at all, let alone be picky about what kind I get!

LittleCatZ Thu 13-Sep-12 22:04:27

I also saw a show about having an MRI that suggested these can detect cancer very early.
Amanda please can you offer a view on MRI and risks and benefits of this as screening for breast cancers?

TomskiGirl Thu 13-Sep-12 23:24:08

@ledkr I am high risk Ovarian cancer and I had my ovaries removed last year aged 38. If you want to chat about it please pm me x

TomskiGirl Thu 13-Sep-12 23:28:06

@YouveCatToBeKittenMe you need to be referred to your nearest genetics centre by you GP and normally if you have 2 or more close relatives with ovarian or breast cancer. I am high risk and had my ovaries removed last year.

ledkr Fri 14-Sep-12 07:34:28

Tomski that would be great,i will pm you later

Teamthrills Fri 14-Sep-12 21:40:47

Cotedazur - my dad's mother had breast cancer at ages 39. I asked gp about my risk and was informed I'm at no greater risk than anyone else as it was on my father's side. Perhaps I should enquire about this again?

CoteDAzur Fri 14-Sep-12 21:48:21

Dad's side is important in cancer history.

In your place, I would go directly to a specialist. I don't understand the emphasis on GPs in the UK.

FairPhyllis Sat 15-Sep-12 00:12:27

I'd like to see very clear and explicit information about which groups of people each type of screening is appropriate for. For example, when I was a student and was invited for a smear test I wasn't told in the letter that if you hadn't had any sexual partners you didn't need to have the test.

I can see lack of clarity about who screening is appropriate for potentially being a problem with the generation of girls who have had the HPV vaccine - many may think they are totally protected against cervical cancer and may not attend screening. Any future invites for smears need to make it clear they should come to screening.

Secondly I'd like to see figures for the success rates of screening programmes - what percentage of cancers they pick up, as this would be helpful in deciding whether it's worth undergoing a procedure or not. For example, women in the US are encouraged to have an internal pelvic exam every year, when it's not at all clear to me what the justification for it is - it doesn't seem particularly effective in picking up things like ovarian and uterine cancer, yet physicians insist on doing it.

Thirdly, I'd like to know what scope there is for cancer screening beyond breast, bowel and cervical cancer - e.g. my family has a history of pancreatic cancer. If I walked into a doctor's surgery tomorrow and wanted to be tested for it, could that happen?

MmeLindor Sat 15-Sep-12 14:03:32

Amanda
Several posters have asked about the communication methods used, and the delay in sending patients results.

I was in Kenya this year and one of the trials that the CDC Kenya are doing was a trial involving the use of text messages to send results of HIV/AIDS.

The idea is that the results are logged into a computer, which automatically generates a text message to the health centre, who then contacts the patient to come in to get the results. Particularly in rural areas of Kenya, this is a way of getting the results quickly to the patient.In other countries, such as S Africa, this has been used for several years.

Is the NHS considering use of modern technology such as text messaging, Facebook and Twitter to encourage and facilitate cancer screening?

LittleCatZ Sat 15-Sep-12 15:33:34

MmeLindor thanks for bringing this in. I'd like to see text messages saying 'your results are ready' and I detest the 'if you don't hear then everything is fine' approach, especially after 2 pregnancies when I was tested so much (iron count, gestational diabetes, even an ECG!). Obviously with cancer screening you want a result and you might follow it up, but I think the text concept would be great for all tests.
My GP's surgery could even include their draconian rules for when I'm allowed to call for test results and the best number

HmmThinkingAboutIt Sat 15-Sep-12 18:06:50

When is the line between being able to make an informed choice and effectively being bully into a decision you don't want being crossed?

The whole set up and language used in smear screening atm is set up so saying 'no' and making an informed choice is extremely difficult. If you are going to the doctors, one of the first things you are asked is have you had one. If you are going for something else and do not want to be harassed about it you can't. This targeted stuff is putting off people visiting the doctor for other issues when they should be attending as they actually have symptoms. The emphasis is on well patients being worried rather than the sick patients who needs discuss a completely different issue which IS a problem rather than a potential problem.

Also, more efforts need to be made to make sure people know and understand the difference between diagnostic tests and screening - both within the profession and with the general public. Upthread there is a good example where a lady is saying she is displaying symptoms but the GP won't send her for screening because she is outside the age range and she shouldn't be worried. Their concern is more for people who are in a target group not for those who are actually unwell. Its upside down and wrong headed thinking especially where there is a family history concerned.

Then there is the fact that if there really is informed choice, why is it that the system does not allow for flexibility where you really can take yourself off lists and that you wouldn't be pressured by doctors who have targets to meet to get their funding?

The truth is, it doesn't exist in the current system; there are too many conflicts of interests between doctors who want to get patients to behave in the 'correct' way and patients who may have made an informed decision about the relative risks and find the whole process genuinely upsetting and distressing and it therefore affects their health in other areas.

The balance is wrong atm. Steps need to be made to make people feel they are making the decision rather than it being coercive. Atm, the way risk is presented has a very big influence on the decisions people make - relative risk and increased risk are often shown in biased fashion to get the right response.

So my questions would be:
How do you intend to show risk in an unbiased way that can be trusted and not used in a way to manipulate behaviour?
How do you reassure people that they can make an informed decision and they will not be harassed for making the 'wrong' decision?
How do you remove conflicts of interest - such as targets - to reassure people that they are making a free decision without the doctor being unduly coercive as they have funding to consider?
How do you intend to improve the system so people can genuinely opt out, long term, rather than having to renew it every so often which can cause distress and upset?
How do you intend to stop letters and literature which scaremonger and say stuff like "if you don't go for screening you are risking your life", which is highly emotive and not actually factually accurate for a number of reasons from both sides of the argument?
How do you intend to get people to know and understand the differences between screening and diagnostic tests. Both with the profession and outside the profession, so that those people who are most in need of tests go for them and get them rather than purely relying on screening which is only aimed at certain groups?

HmmThinkingAboutIt Sat 15-Sep-12 18:49:00

I've just read through survey on website.

Why are risks displayed in this format:
1 in 10 people will die.

and not:
1 in 10 people will die. 9 in 10 people will not die.

Statement one already has biased to manipulative people a certain way. Unless both sides of the argument are presented equally and without biased than there is never truly informed choice; only manipulated influenced choice.

LegArmpits Sat 15-Sep-12 20:03:12

Completely agree with all of that Hmmm - well written.

CoteDAzur Sat 15-Sep-12 20:26:27

Does "9 out of 10 won't die" really need to be said? Even my 7 year old can calculate 10-1 in her head.

Surely the point is that 10% mortality rate is very high. Not that 9 is a larger number than 1.

HmmThinkingAboutIt Sat 15-Sep-12 20:30:57

Its the emphasis that you could die without a counter to it, that I take issue with. It means there is a bias in trying to help you make a decision; the idea that you could die and not the idea that you might not do.

So much of the way risk is presented and how it effects behaviour is subliminal. BBC1's Bang goes the theory did a very interesting study on this. Just by putting the word die rather than survive into statistics given to politicians affected decisions they would make on a theoretical situation. I'll drag up the episode if anyone is interested.

It IS really important.

mielebosch Sat 15-Sep-12 20:45:59

Yes, two - no, three - really good posts there, Hmm.

I was just boggling at the so-called FAQs in Breast Cancer Screening. Nothing about the controversies over mammograms; nothing about radiation; nothing about false positives leading to unnecessary treatment for cancer.

Really? Those aren't frequently asked questions?

MultitaskerXT Sun 16-Sep-12 07:44:38

Hey dippywhentired
Ask for a BRCA test - a genetic test for breast cancer. I've just been through treatment and so well versed. The benefits of a mammo FAR outweighs the breast cancer...trust me! Radiation is not great for you: fact, however cancer spreads/it kills and its best to get an accurate diagnosis asap. I was lucky, I got it just in time thanks to me screaming and shouting for my GP to refer me to the consultant. So test is best! Diet is a big thing too....

Asmywhimsytakesme Sun 16-Sep-12 13:23:51

I didn't even know you could have a smear test when pg as someone says below. Is this right?

YouBrokeMySmoulder Sun 16-Sep-12 13:47:18

Multitasker, can you get that test done privately?my mother had breast cancer at 38, I am now 37 and do worry about it but my gp doesn't seem remotely concerned, is this normal?

CoteDAzur Sun 16-Sep-12 15:54:48

I was told that smear test results (or even the biopsy of a mole) during pregnancy would be highly unreliable because of pregnancy hormones.

BelaLug0si Sun 16-Sep-12 16:51:55

You can have a smear test whilst pregnant but it depends on your individual history, what's going on with your pregnancy and the changes in hormone levels can make it more difficult to interpret the cell changes. I've copied the relevant part from the NHS cervical screening programme guidelines below and the link to the document. Note where it says mid-trimester, it doesn't say which one, so it's down to your HCP and you to decide if you want to have one.

doc no 20
"10. PREGNANCY, CONTRACEPTION, MENOPAUSE AND HYSTERECTOMY
10.1 Pregnant women
10.1.1 Cervical screening in pregnancy
• If a woman has been called for routine screening and she is pregnant, the test should be deferred.
• If a previous test was abnormal and in the interim the woman becomes pregnant, then the test should not be delayed but should be taken in mid-trimester unless there is a clinical
contraindication.
• If a pregnant woman requires colposcopy or cytology after treatment (or follow up of untreated
CIN 1), her assessment may be delayed until after delivery. Unless there is an obstetric contraindication, however, assessment should not be delayed if a first follow up cytology or colposcopy is required following treatment for cGIN, or treatment for CIN 2/3 with involved or uncertain margin status.
The colposcopist may wish to perform only colposcopy at a follow up appointment in pregnancy.
If repeat cytology is due, and the woman has missed or defaulted her appointment prior to pregnancy, consideration should be given to her having the cytology or colposcopy during pregnancy"

smee Mon 17-Sep-12 11:11:38

As a woman who's had Breast Cancer, I want to know why they don't offer people who are post treatment yearly scans to show any new growth?

Cancer's increasingly treatable if found early enough, yet I have had several friends find secondaries after it's too late for them to be treated. If found earlier their options/ outcome might have looked far brighter, so it makes zero sense to me not to have yearly CT or MRI. I know there's a threat from radiation, but I for one would happily take that (relatively small) risk, if it gave me earlier detection and so a chance of treatment. Is it simply cost related? If so, that's shocking.

HoleyGhost Mon 17-Sep-12 16:34:14

Why do you have to wait up to eight weeks after an abnormal smear for a letter with the appointment for colposcopy? Why can't they just send out the appointment with the result?

Waiting so long for the date surely causes needless stress. It also makes it harder to plan work, holidays or trying to conceive.

RachelMumsnet (MNHQ) Tue 18-Sep-12 11:55:25

The Q&A is now closed. Thanks for all your questions and comments. We'll be sending the comments and 20 questions over to Dr Ramirez later today and will link to her answers by the end of September.

RachelMumsnet (MNHQ) Thu 27-Sep-12 18:40:39

We now have Amanda's answers back and the archived Q&A can be seen here:

Q&A about cancer screening with Amanda Ramirez

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