Off topic -appalled: A young close family member... - Thyroid UK

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Off topic -appalled

35 Replies

A young close family member recently had an abnormal smear test, sent for colposcopy and biopsy, letter came with results today ,

Says 'shows you have cin3,' then says to have laser treatment.

Nowhere does it say what cin3 is!

There should at least be an explanation of what cin3 means.

we have been left to google amd apparently it is the most sevete stage of precancerous cells.

you can imagine the kind of scare stories the google search threw up.

Why on earth would NHS send someone a letter saying they have this and offer NO explanation in the ketter what this means!

we have been able to sort out and choose reputable sitesbut others may not and I is scarey

Just so cross x

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35 Replies
sootysgirl profile image
sootysgirl

Cuz the less you know the more drugs and interventions they can throw at you :/

(No faith in big pharma and the doctors they train to prescribe nowadays so don't mind me ;) .....)

If it helps, my friend had this laser treatment a while ago for the same thing and she says it wasn't that exciting and she felt fine.. Hope that helps x

in reply to sootysgirl

Ah thanks for info about your friend thats good to know x

Framboise profile image
Framboise

That's worth a complaint to whoever or whatever is above the person or hospital that sent it out. The papers would probably also be interested ;)

Like Sootysgirl I know someone who was diagnosed at this stage and treated successfully then followed up for quite a long time afterwards. She's fine now about 15 years on so I hope your relative can try not to worry.

in reply to Framboise

Thankyou to be honest I think I am worrying enoughfor both of us! I had never even heard of cin never mind the gradimg system but cancer research has some good info. I will be going to appt with her and will have plenty to say ! You would think they would put in at least a leaflet explaining what cin stands for -we had to find that out for ourselves too.Disgraceful .thanks for telling me about the good outcome you know about its reassuring x

Clutter profile image
Clutter

P1pp1ns, back in the day when consultants gave you sealed letters to pass on to your GP to be told what was wrong with you, I steamed open the letter to read it was squamous cell carcinoma. Treatment was outpatients laser which sorted it out. My blood pressure dropped alarmingly so I was admitted overnight but I was fine the next morning. The laser treatment wasn't painful as I'd been given muscle relaxants and something which made me feel very drunk and dopey. I hope it goes well for your relative.

in reply to Clutter

Thanks clutter x

Barrister profile image
Barrister

Clutter, I too remember the "sealed letter"! I always opened mine too. At first I would try to hide the fact that I'd opened it but then I thought, why should I be worried? It's my body, so then I used to hand them over without the envelope so there was no doubt then that I'd read it! Nothing was ever said about it. Clemmie

in reply to Barrister

I remember the days of steaming those letters open lol x

Jennyfluff profile image
Jennyfluff

NHS at its best I see, once again... what an awful organization it is.

“Never underestimate the power of stupid people in large groups.”

― George Carlin

I would say this is the NHS to a tee!!!

I am so sorry for your family member, it is a dreadful way to be informed of such a diagnosis.

I would take this to the newspaper ask them to keep the identity confidential because they can do that.

Time for this NHS to be put on the spot and properly dealt with!! THEY get away with things they shouldn't.

I hope treatment goes well and you all are able to cope ok. I am so sorry, this is awful.

sending loads of good thoughts to you and your family.

xxxx

in reply to Jennyfluff

Thankyou so much for your good wishes, yes I would take it furthet too but it is her decision so will go by what she wants to do .x

Jennyfluff profile image
Jennyfluff in reply to

Absolutely!! Poor love has enough on her plate, bless her! It does make you feel strongly doesn't it though!

Best wishes!!

Xxxx

dgleds profile image
dgleds

That is soooo bad!

I live in Canada and I can tell you Ive been experiencing similar bad stuff...

Like wrong lab results... etc

or no one passing on the info...

But no one should mail a person that info like how you received it...they should call you in to discuss things...

in reply to dgleds

Thankyou , yes a phone call would have been much better then at least you can ask questions x

mistydog profile image
mistydog

Contact the PALS at your local hospital. I don't think this is standard practice and they need to change their methods

in reply to mistydog

Thankyou for advice, much appreciated x

LouiseRoberts profile image
LouiseRoberts

I went for a colposcopy and didn't fully understand what would happen.

I was laying there and smelled this horrible burning smell.

I asked what it was and the nurse looked a bit shocked and said 'People don't usually notice it!'

I was horrified to realise that it was me I was smelling! :(

I was really upset and told them that in future they should warn people!

Hope things work out.

L

x

in reply to LouiseRoberts

Thanks Louise , yes inwill def warn her about the burning smell - how awful for you not to be warned.hope all ok in that dept for you now x

LouiseRoberts profile image
LouiseRoberts in reply to

Yes thanks! :) xx

lilliput profile image
lilliput

A friend had the laser treatment and is fine now. She said the burning smell was the worst thing about the treatment; she felt no pain.

in reply to lilliput

Thankyou thats good to know x

foreversummer profile image
foreversummer

I do feel sorry for your friend.

It reminds me of an incident with a very dear friend of mine who went to the hospital for some kind of heart scan as she was quite breathless and dizzy. A few days later she received a letter from the hospital saying they had made her an appointment to discuss the results with the Heart Failure Nurse. What a title! No explanation given. She was distraught.

Turned out she needed a pacemaker, problem solved.

Surely someone in the NHS should be thinking of better ways of communicating with patients.

Foreversummer

in reply to foreversummer

Absolutely, actually she has taken the news quite well I am the worrier but that seems to be a typical Graves suffeter trait! Fancy sending someone a letter about having heart failure and no info! Sadly though seems to be the norm for NHS x

ThyroidThora profile image
ThyroidThora

Hiya,

I cannot understand why they did this! Surely they should have sent her an appointment to see the gyneacologist for the test results or perhaps her GP. This is disgusting!!!!!!!!!!!!!

in reply to ThyroidThora

Hi, no no appointment to see anyone just a letter ! Fortunately she is a calm sort of person -unlike me -but it could really upset some people. They know nothing about her though so how could they know how she would react? X

ThyroidThora profile image
ThyroidThora

Hi,

I think she should make a complaint to her local PALS so that this doesn't happen to other women. Just imagine this happening to an elderly lady, it would be such a shock and a very impersonal way to notify someone of a serious condition.

On another note, how have you got on with your block and replace for your Graves disease? I've tried sending you a private email but it wouldn't work.

in reply to ThyroidThora

Finished block and replace 2 weeks ago and waiting now to see how I go off meds so fingers crossed ! I have first blood test in 6 weekscso hoping for remission. I will message you email address again x

silverfox7 profile image
silverfox7 in reply to

Hope it goes well x

in reply to silverfox7

Thankyou x

silverfox7 profile image
silverfox7

On the question about being left in the dark! Many years ago I had a cervical polyp. Family planning said too big to scrape off so would write to my GP. I then got a letter from the local women's hospital asking me to attend on whatever date. I had a nice relaxing bath with loads of my favourite bath oil before I left and turned up at the hospital. The letter didn't say where I had to report to so was shown to various people who said it didn't say why I had to attend! Eventually someone had the brainwave to look me up on the computer and looked up and said Go to floor _____ you are first on the theatre list! Shock or what! So I was having this polyp burnt off! Didn't have time to worry-straight in-did I want to watch on tv-no! So we got started. Cauteriser didn't work! Couldn't stop procedure as bleeding heavily and couldn't take another out of theatre as not allowed. He thought the earth may be a problem so ripped it off my thigh and tried a different place. That suddenly worked and as the power had been turned up to max I near jumped off the table! so my bath oil was the problem! This was cleared from the area and progress maintained. I was then given a pad to wear on the way home and said would probably bleed for a few days. So no idea why I was going, not told to avoid bath oils and not suggested some pads needed for a few days-maternity size. Found that shocking but foolishly didn't complain-just glad it was over and the histology fine!

serenfach profile image
serenfach

I am waiting for a Urology appointment for my kidney. I was sent a questionnaire about my prostate. I rang them up and they said they could not give me an appointment until I had filled in the questionnaire. When I pointed out I was female and therefore did not have a prostate, she just said to fill it in and send it back!!! I have written not applicable all over it. Sometimes the NHS is so stupid!

in reply to serenfach

Unbelievable ! X

Hi. If it helps I had this 12 years ago. Also cin 3. It was see and treat at the hospital. Absolutely fine- and I'm a panicker. Yearly smears for a while but now they can check if you've got the hpv virus ( cold sore type virus that can be sexually transmitted). If not then you're low risk for any more problems. It's checked with smear. Even if you do have it they just carry on with more frequent checks. What a horrid letter. I got letter saying abnormal smear see doctor. Tell her it will be fine and is more common than you think. X

in reply to

Hi thankyou for the reply its good to know others are ok after this procedure x

I don't understand this either as, usually the letter is sent to the GP practice and the nurse is asked to call in the patient to have a chat about what it is. This "protocol!" is to make sure that the patient knows exactly what ever the diagnosis is and to make sure that the patient is contacted. I mean, supposing this important letter goes to the wrong address or is lost?

in reply to

Thanks for reply, yes goodnesd I never thought about the letter getting lost in the post! The ramifications of that could be literally fatal.A date has now been arranged for the treatment.A phone call would at least give you chance to ask questions and as you say an appointment with a doctor or nurse better still.It seens a very strange system and this is from a well established teaching hospital!

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