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.

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.

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

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 helpful

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" ).

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

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!

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.

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.

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?

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?

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.

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.

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.

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?

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!

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?

@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

@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.

Tomski that would be great,i will pm you later

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?

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.

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?

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?

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