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DID YOU KNOW??

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karen1
DID YOU KNOW??

Hello Girls did anyone know that a patition has gone to number 10 about cervical cancer and how having regular smears is so important!!!!!!!!
lets see what mr blair has to say about that then. It has been sent by parents of a young lady who sadley passed away from this dreadfull disese. so much more needs to be done! always fighting karen xxxx

Kevin

Hi All

That's great news. Something similar happened in the USA and worldwide, Lance Armstrong organised a cancer pledge via his foundation, and presented it at congress totally embrassed the government into giving more money, back up to cancer sufferers and organisations.

Hopefully this will have same effect!!!

It is however sadenning that it takes a petition from a family to kick start the government.

Anyway off my soap box :roll:

love

Kev

Kevin
Brother of a cervical cancer patient

tinar

Hi Karen

No I didn't know that. Let's hope the issue includes regular and 'more frequent' screening. I read in a health magazine yesterday that Cancer Research UK recommends that women aged 25-49 are screened every 3 years. It's a pity all health authorities don't also recommend the same as I had to wait 5 years which is how it is in my area, although I believe not the case in many other parts of the country. If I had to wait only 3 years then maybe cervical cancer would not have developed and a rad hyst with lymph node removal wouldn't have been necessary, not to mention numerous visits to the hospital for the next 10 years (screening every 3 years would have prevented alot of expense for the NHS and my stress, worry and time). I'm a bit miffed to say the least that there isn't standard protocol across the country. (Actually Karen I think you are in the same area as me - was it the same time scale for you ... or just my 'tight fisted' surgery (PM if you like)

Hear hear Kevin ... totally agree.

Love Tina

Sue M

Hello

I think that's great - but I also think people should also be made aware that smears do not pick up all pre-cancerous changes and are not 100% water tight. They are only designed to pick up squamous cell pre cancerous changes and not really glandular changes which occur higher up in the cervix and lead to adenocarcinoma. I went for smears every 3 years and my pre-cancerous changes were never picked up at the CIN stage. This is because it is much harder to pick up CIN changes higher up in the cervix (endocervix) and I was told that it was fortitious that my cancer was picked up before symptoms occurred.

Alot more education needs to be done but it is great that there is a petition. Personally I feel that women should be able to have a smear every year.....

Sue xxx

kaz

hiya everyone, ,i work in a gynae unit and sadly a 24 year old patient of ours died last week leaving a three year old son because her GP said she was too young for smears! it makes me so angry thanks to my GP i too ignored symptoms and at 27 was diagnosed with C.C and had a radical hyst. im promoting importance of screening on the 22nd of nov at work even if i get through to one person it will be worth it, so thumbs up i say for the petition love kaz xx

15 years cancer free,ive won my battle but not yet the war!!

admin

Yes, I'm the same as Sue M. I hadn't missed any smears (3 yearly in my area) and all were clear until the one that wasn't in 2003. I also had the adenocarcinoma - the one the smear test isn't designed to detect. I wrongly assumed that if I did my bit by turning up promptly for my smears it would be impossible for me to get cancer. Silly old me.
Kaz - I thought I saw a post from you the other day saying you'd been cancer free for 10 years? It is great to see that on the board - gave me a lot of hope. I suppose old members drift away as time goes on and the nightmare recedes and they get back to 'normal'. But I wish everyone would post once a year on jo's on their anniversaries to say how long they've been cancer free. That is what I wanted to see when I was newly diagnosed - long term survivors! Congratulations, and good luck with your CC event on the 22nd.
Amanda
1B1 diagnosed Dec 2003, chemoradiation feb-april 2004.

onlyme

Every three years for 25 and overs, whoopee, yet they want to vaccinate girls at the age of ten against the Virus that causes 95% of cervical cancers because they need to do it before the girls become sexually active. As they keep telling us this is a sexually transmitted disease :roll: wouldn't it make more sense to start screening at a younger age too and even MORE regulary (I went from an abnormal smear to cancer in 18 months) perhaps we should start our own petition.
Sorry for rantingxxxx

Survivor of 1b1 cervical cancer, Radical Hysterectomy 13th April 2005

Ten years and counting :D

 

Rachel

Hi girls,

I agree with all that has been said. My understanding is that also the campaign to Downing Street was to try and get the smear test screening improved so that all health authorities implemented the Liquid Based Cytology smear test asap. (didn't hear all of the news report so please feel free to correct me if I am wrong on this).

I am all for the screening service being improved and so would support anything which may do this. As has already been mentioned on the posts, the smear test is not 100% accurate. I unfortunately know this only too well. I have always had regular smears and have never had one back which was abnormal. However, after being diagnosed with invasive cervical cancer in December, I have now been told that I was given the wrong result to my smear in 2001. For me this news is devasting...to know that my cancer could have been avoided if I wasn't given this "false negative" result.

I have looked on the internet and have attached website address that is running the petition which may be of interest.

http://www.apromise2sue.co.uk

Love to all,

Rachel xx

Radical Hysterectomy, Lymphadectomy and ovary removed in Feb 2005 following cancer diagnosis. Further surgery in July 2005 to remove remaining ovary.

kaz

Dear Amanda yes i have been cancer free for ten years now! yipeee having my smear next week, and if alls well i will be able to have them every three years fingers crossed. i cant belive i never knew about jo,s untill i started the screening awareness, i had to struggle through all the emotions and everything that goes with having cancer alone,i had two small children then both healthy scary teenagers now, and luckily i have a great husband and family but even so if i had known about this site (not sure it was going then)it would have been a great comfort to know there were people who were feeling exactly the same things as me.so im glad i can now give everyone some hope and advice if needed, im living proof that life does go on after C.C love kaz xxx :D :D

15 years cancer free,ive won my battle but not yet the war!!

amanda 26

Karen and Rachel
Was the petition delivered to Downing Street this week? How do you know about this Karen - are the family from your local area? Has anyone seen this story in the press at all?
Thanks for the website Rachel - I have sent them a message, though it looks as though the campaign/petition is now closed. So don't know how often it is checked.
Also Rachel - so sorry to hear about your 'false negative'. That must make a terrible situation even more unbearable. I hope you are coping with this devastating news and getting through it OK.
Amanda

Caro

Hi Karen/Rachel
I would be interested to know how you found out about this too? I checked on BBC website and found nothing.
How sad for her parents. But wonderful that they have the strength to take this forward.
Rachel - I was sorry to hear that you had a false negative test and did not know about this. I am trying to get the results of my 2000 smear but they appear to have been 'lost'. I would be interested to hear more about your story if you feel you want to share that information. I had symptoms in 2000 which I got investigated however nothing was found as far as I was aware. However I have been looking into this lately. Not that it will change anything but I feel that the smear I had in 2000 must have picked up something! :?
Kaz - well done with all the work you are doing. A lot of women do not realise that these tests are not 100% accurate.
Hope to see some of you ladies next week.
Caroline

Caroline

Rachel

Hello,

I saw a glimpse of the story on Sky News I think it was yesterday or maybe the day before. I have put the website address below:

http://www.sky.com/skynews/article/0,,30100-13463374,00.html

Caroline - happy to chat anytime...send me a PM anytime.

Bye for now,

Rachel

Radical Hysterectomy, Lymphadectomy and ovary removed in Feb 2005 following cancer diagnosis. Further surgery in July 2005 to remove remaining ovary.

kaz

Dear rachel, thanks for posting the article, the hosptial i work at has just started using LBC, and i cant see why it has taken so long the same brushes are used as before, its only a little pot of liquid for god sake surely it doesnt cost that much more than slides and everthing else that went with it. patients having to go back for re_ screening because of inadiquate results or contaminated slides must cost the NHS alot more.why!!!!!! is it always about money, the amount wasted on trivial crap each year is scary. sorry for going on but it really gets my back up! i bet sheree Blair has regular LBC smears. does anyone agree with me love kaz xx :x

15 years cancer free,ive won my battle but not yet the war!!

karen1

Hello Girls Thanks Rachel Ive just looked at the link from sky news
i didnt know that the new smears was approved 2 YEARS AGO some of the poor girls on here things might have been so very different for them! (mine has been going on longer so its not good for me) even so it gets me so cross why hasnt it been sorted?? my sister is only 23 and i pushed and pushed for her to have a smear because they said she was to young even tough she had a son. how mad is that. her doc said it was unlikley she would get cc its not hereditry im not so sure and am not willing to take the chance to go through what i have not bloody likely!! so she now has yearly smears and i will be telling her to have the new smear even if we have to pay. im of to chill you all keep fighting. take care
always fighting karen xxxxxx

admin

Need to tell this to people who understand and to get it off my chest.

I went for a 5 week post op check over at my doctor's surgery today - everything fine and healing etc. However I saved my final 'concern' til last which was why did I have to wait 5 years for my smear and was that usual practise for this surgery. I was informed that the screening has now been changed back to every three years but in the transition, I had been overlooked. He apologized profusely for the distress caused and that I could sue him if I wanted, and said he will be conducting an vestigation into why this happened.

Gobsmacked!!

Result: cervical cancer 1b, rad hyst/lymph node

Mellissa Crowley

Hi all,

I agree with Sue M, that more needs to be done to make aware that smears don't show adenocarcinoma,

I also believe the age for the cervical screening programme needs to be lowered, I was 23 when diagnosed with atage 1b1 having had presented myself at my gp's for years with irregular bleeding prior to diagnosis,

Mellissa xxxxxxxxxxxxxxxxxxx

Radical Hysterectomy for adeno clear cell carcinoma cervical cancer stage 1b in 2001 at the age of 23 - CC caused by DES Exposure- Ovaries Conserved. 10 years all clear! Discharged from The Royal Marsden April 2011 [email protected]

kaz

Hiya Same thing happened to me, i was on the depo injection(contraceptive) and i bled for nearly two years, even though i had borderline changes before i started it my GP kept me on the injection and brushed my symptoms off as side effects to the injection and assured me it would sort it self out.couldnt have a smear because always bleeding,when i finally went to see a female doctor she was horrified took me off it immediatly and guess what?i was 27 and had cervical cancer, had radical hysterectomy and lympth nodes removed, had to wait till after new year to see if they were clear, same horrid smug male doctor gave me the results as if it was an every day thing (oh yeah your lymph nodes were clear thank you goodbye) god i hate that man with a vengence. surely raising the age for smears to 25 is only gonna cause more problems. :evil: love kaz xx

15 years cancer free,ive won my battle but not yet the war!!

admin

Totally agree... I had my first smear at 21 and was already abnormal leading to cone biopsy for CIN II - VERY lucky, what if I'd been told that I was to young to go for a smear?!

juliao

Hi everyone

some of these long threads take a while to get through so I have just managed this one.

I had problems with my smears at an age of 40. when I went to her with extended bleeding and sometimes so heavy it dripped through to the floor iwas told.

"what do you expect at your age"

after more pestering and still no smear they discovered an ovarian cyst but i was told this would not cause the bleeding. this was my first cancer scare.

I moved south new doctor still having problems with bleeding and lower back pain again the menoupause theory came out. then abnormal smear followed by a clear smear. then I saw another doctor with same sypmtons plus feeling very tired and run down he said

"unresolved psychological issues"

Why are so many doctors blind to cervical cancer and why when you reach 40 are you passed of as a neurotic menoupausal woman

I dont usually vent this one but readin this thread I realised how blind the medical profession can be.

Good Bye all
julia
We will all be winners in our own special way

Im not living with cancer
Im living with a colostomy and urostomy
Im living without my vulva, vagina, cervix, uterus, ovaries, bladder, bowel, anus, rectum and perineum

Silvermoon

I agree with you all. I've been having abnormal smear results for 14 years yet it is only this November that I was sent for a colposcopy when they discovered I had CIN3 and I'm having LLETZ in January. The thing that bothers me is that it took nearly 4 months for that smear result to come through which said 'mild dyskaryosis' then by the time I was seen it was CIN 3, I can't help wondering if this delay in results could have made a difference to the treatment I need. I think the whole screening system needs to change, and that Doctors should listen to us more, we are after all the ones who know most if our body is doing something unusual but it would seem we are all often fobbed off with don't be silly it's probably your age or stress, I for one would not go if I really thought it was nothing!
Maybe if we all start shouting loud enough someone will take some notice!Take care and keep well
Sam x

scoots

reading some of those comments makes me feel fortunate that my Doctors surgery sends out letters to every female on her 20th birthday requesting her to book her first smear test - if I hadn't have had my problems discovered then who knows where I would be now!