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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

AIBU to ask the Breast Screening Programme to stop sending me appointments?

75 replies

CoconutRing · 11/10/2013 22:34

I have made an informed choice not to have breast screening. I understand that the NHS have limited funds and to save time and money, I have written to my local Health Authority to request that I am removed from the invitation list.

For the third time, I have received an invitation, with an appointment time for a screening I do not want. I rang to cancel the last two appointments as a matter of courtesy as I thought that another woman may wish to take advantage of the appointment.

Each time I rang to cancel, I got the third degree as to why I was cancelling. I do not have to explain my choices to a faceless HCP, but I remained polite.

Would I be unreasonable just to ignore this letter as my wish not to be invited has been ignored?

WWYD?

OP posts:
ConsideringTheFuture · 11/10/2013 22:36

What are the reasons for your decision?

Annunziata · 11/10/2013 22:37

You should be grateful we have the opportunity.

It probably costs more to remove you from the list.

summertimeandthelivingiseasy · 11/10/2013 22:37

There was a thread in general health a while ago about how to go about extricating yourself from the screening process. Have a look there.

CarefullyAirbrushedPotato · 11/10/2013 22:38

recycle as firelighters- you've told them to remove you (repeatedly), if they send you random crap now that's their lookout. And you're right you don't have to explain yourself to them, but if you have any trouble say things like 'informed consent' and 'continuing harassment.'
GL

Shellywelly1973 · 11/10/2013 22:38

I would judt ignore it...

Being nosy now but why don't you want to accept the invitation of screening?

I ask as a very cloee friend of mine has breast cancer that has already spread to her lungs. My mil died 3 weeks sgo from lung cancer so its a subject very prevalent to me at the moment.

FortyDoorsToNowhere · 11/10/2013 22:42

I am sorry to be blunt but have it done.

It's the same as smears, nobody is going to say yanbu

Original poster
CoconutRing · 11/10/2013 22:44

This is a quote from Cancer Research UK.

"Breast screening is not perfect. As well as picking up cancers that need treating, it also picks up invasive breast cancers that will not cause any problems in a woman's lifetime and early stage non-invasive breast cancers called Ductal Carcinoma in Situ (DCIS).

The IBSR also found that each year in the UK screening leads to around 4,000 women diagnosed and treated for a breast cancer that never would have caused them any harm during their lifetime. These women have been ‘overdiagnosed’.

At the moment it is not possible for doctors or patients to be certain whether a breast cancer will grow quickly and needs treating, or will grow slowly and not cause any harm. Almost all women with breast cancer are treated with surgery and many also have radiotherapy, hormone therapy and chemotherapy.

Other harms from breast screening include exposure to small amounts of radiation from x-rays, false negative and false positive results. False positive results, in particular, can lead to anxiety as women await the results of further tests to determine whether or not they have breast cancer."

These are some of the reasons why I choose not to screen.

OP posts:
GrendelsMum · 11/10/2013 22:54

I wonder if you could try writing a letter getting it on record that you are declining to have a breast screening.

As I understand it (attended talk by one of the people behind the newer style of NHS leaflets that try to give a better briefing of the risks and benefits), they should be accepting that people may or may not decide to have a breast screening, and support people in implementing that decision.

GrendelsMum · 11/10/2013 22:55

Oh sorry, I see you already have written.i thought you'd phoned but not written.

TiredDog · 11/10/2013 22:59

Hi Coconut

You are not being unreasonable at all. Declining screening once fully informed (with their leaflets) is a very valid option. I would probably write to the manager of the screening programme and request that they call you to discuss their continued invitations

Original poster
CoconutRing · 11/10/2013 23:21

Thanks TiredDog - I will write again.

OP posts:
TiredDog · 11/10/2013 23:27

Actually I've re read your OP. Writing to the Health Authority is not worth it. Faceless, management lead, not interested in patients....probably all of on a conference discussing buzz words about health today

They have probably not communicated your wishes to the screening programme at all. Go straight to them.

Original poster
CoconutRing · 11/10/2013 23:36

TiredDog - you have made me laugh! Thanks again - I will write directly to the screening program.

OP posts:
FortyDoorsToNowhere · 11/10/2013 23:46

At the moment it is not possible for doctors or patients to be certain whether a breast cancer will grow quickly and needs treating, or will grow slowly and not cause any harm.

What would you prefer.

Prevention is better than cure

cashmiriana · 11/10/2013 23:52

YANBU
The systems assume total compliance with their norms. It is reasonable for them to check once, to make sure that letters haven't gone astray but after that they should just stop.

When pregnant with DD2 I refused (for complex reasons) consultant care. I declined appointments after the first one, wrote 3 times to the hospital central outpatients and the OBGYN department, and my community midwives, to tell them I didn't want any consultant appointments. Even then I still got officious midwives at the hospital ringing me to tell me I had missed an appointment, and giving me a new date. It was ridiculous. I am a grown adult who made an informed decision. They basically refused to accept it.

Caitlin17 · 12/10/2013 00:00

You are not being unreasonable. I asked them to remove me, which they did and they wrote to confirm they have done so. I'm over 50 so I get the bowel cancer screening test sent to me. I've asked them to stop as well. I seem to have dropped off gp's list for smear tests. I can't really explain why I don't want to be tested, beyond I just don't.

ScaredGirly · 12/10/2013 00:17

I feel the same about smears.

I'm 33. I fear my stance will gain a lot more criticism than yours OP.

Good for you though, you sound very well informed.

My GM had a lumpectomy for DCIS at the age of 78. Her care was fantastic but the procedure has caused many problems, including a further operation. I truly believe she was overdiagnosed and unnecessarily treated.

shewhowines · 12/10/2013 00:27

Screening saves lives. Yes you have the right to say no but sorry I think you are being stupid. I know a few people who wouldn't be here if it wasn't for screening.

What's better - over diagnosis or death?

penguinpaperback · 12/10/2013 00:53

In the end I had to confirm in writing I didn't want a breast screening appointment and it was only after this there were no further letters. But I'm only replying to your OP to say nothing has to be final you can always go back on the screening list if ever you change your mind. I knew of no other breast cancer in my family and I tick all the boxes that say I'm very low risk but I have stage 4 breast cancer and as I will always be having scans and various until I die I got very fed up trying to explain to someone on the other side of the phone that I really did want to be removed from the list.
I only wish screening would be offered at 40, I may have found my cancer sooner, I was diagnosed stage 4 in my early 40's. Luckily I have lived longer than was expected thanks to good responses to treatments and I'm now early 50's.
YANBU it's your body, your choice.

daisychain01 · 12/10/2013 07:01

I cant interfere with people's decisions not to be screened nor am I judging whether unreasonable - not relevant - however, please reconsider not being screened for bowel cancer!

My friend just had his first test kit and literally got a call to say they have detected abnormality and he needs treatment and an op. it has been caught very early, so imagine if it wasnt detected until he got bad symptoms, such as pain, visible blood in stool etc. Doesnt bear thinking about. It has saved his life.

Reconsider screening, it does mitigate risk, it is worth it!

TiredDog · 12/10/2013 07:13

I think that screening saves lives 'on balance'. Screening also causes harm. Low dose absorbed radiation is harmful. Radiate enough people and one will get cancer from that. So you have a screening test which harms a very very very small proportion

Unnecessary anxiety and trauma is caused as lumps which would never have caused death are picked up and treated (because we can't tell which ones to treat)

On balance more lives are saved than lost.

So OP is NBU to consider whether to be screened. Nor is she BU not being screened. It's not like vaccinations and herd effect

Imagine a vaccination which overall saved lives but caused harm. Would you give your child that?

DropYourSword · 12/10/2013 07:20

You shouldn't have to explain yourself to them OR us. It's your decision and I'd that's what you want no-one here should even be asking for you to justify yourself.

It definitely WON'T be cheaper for them to keep you on the system, so is just write in AGAIN asking to be removed from the list, you're not interested and would like then to confirm that they won't send out any more appointments!

MrsLouisTheroux · 12/10/2013 08:02

I am amazed by this thread. Not in a good way.

Kytti · 12/10/2013 08:13

This reply has been deleted

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

BeeWi · 12/10/2013 08:14

Totally your choice, OP.
Having had a friend die of breast cancer this year though, and seeing how it has torn us all apart, I think you're a bit nuts to turn down the chance to be screened.
But YANBU to make up your own mind and want your wishes followed.

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