Expendable over 50 - 7 year wait for NHS smear test, now CIN3 and awaiting result of second LLETZ

Hi. I just wanted to see if there are any other over 50s out there who feel we are a bit forgotten by the cervical screening programme. The statistics are scary for the older among us. Cervical cancer mortality increases hugely over 70, presumably because screening stops at 64. So I suppose I should be grateful that CIN3 cells were discovered at what would have been my last smear test. But I can’t help wondering if getting smear tests when you’re older is a post-code lottery. I only got my last smear test because I moved to a different part of the country. This is my story: I have always gone for smear tests as soon as I’m called so had 3-yearly checks until I was 50, then had one in 2014, when I was 55, which was clear. In 2018 I had a private health screening and the smear test at that showed HPV and recommended annual smear tests. In 2019, which was 5 years after my last NHS smear anyway, I asked my doctor for a smear test. They refused. I pointed out that I had had a test showing HPV the year before and that annual an annual test was recommended and, in any case it was 5 years since my last NHS test. Still they refused and said they couldn’t give me a smear test until I had a letter from the Cervical Screening Service. In July 2020 (so a 6 year wait, not the 5 stated by the NHS) I finally got my letter and phoned the doctor again. I was told they weren’t doing smear tests ‘because of covid’ - even though this was after lock-down - it was deemed safe for me to go to a restaurant with a group of friends but wasn’t apparently safe for me to go to my GP for a potential life-saving test. In November we moved to a new area and I registered with a new GP in mid-December. I received a letter from the Cervical Screening Service only a couple of weeks later. By this time we were in lock-down again so I phoned the new GP’s surgery more in hope than expectation. But they said they were still doing smear tests and apologised that there was a six week wait - after a 7 year wait at my previous GP this wasn’t a problem! The nurse carrying out the test was very surprised that I’d been refused one by my previous GP. She said that, in this Health Authority, screening had gone on throughout lock-down. Getting the result of this smear test - CIN3 was a blow. Though, as I said, as I’m now 62, this was probably my last chance for the changes to be discovered and if they’d been missed, the first I would have known about it would have been when I started to have symptoms of cancer, so I should be glad that I have a chance at earlier treatment. I am currently awaiting the result of my second LLETZ - the biopsy after the first showed no clear margins. I know I’m older and have had my life so, probably as far as society as a whole is concerned, don’t matter. But I still have a partner and children who want me around and feel very angry that, not only are we not called for screening after 64, but GPs are able to refuse us screening when we request it, even when it’s due and when there are extra risk factors, such as HPV and, in my case, a compromised immune system. I imagine older women are still treated when they develop cervical cancer - surely it must be cheaper to allow us to have screening than to wait for us to go on to develop cancer with all the financial and social cost that entails.

1 Like

Dear Janet,

I wholeheartedly agree with you that the screening programme is letting us older ladies down! If you look at my back story you’ll see things did not go well for me (I’m 64 now) and my cancer was actually well developed when discovered - and I was not going to get any more smear tests, like yourself. If you don’t mind, I’m going to PM you too…

1 Like

Hello both
There are some more of us over 50s on here but not many. I am now 57. There is also a lovely lady called Jazza who regularly posts on the forum and more recently Rebecca65. They both share your concern about us older ladies. I have posted a few times about my concerns. I chose to have a private screening this year to give me peace of mind - it wasn’t cheap but I decided it was worth it rather than waiting 2 more years until my next NHS screening.
You are not alone
A x

2 Likes

Unfortunately (see my back story) I stopped going for smear tests from about 2007 when I was 50y but yes I do think that the NHS cervical screening programme lets down older women. Although it’s not possible to read the whole article unless you are a member the following link might be a reason to hope that the situation improves: https://www.bmj.com/content/372/bmj.n280.full

x

2 Likes

Hello

The whole situation concerns me too, and I have expressed this. It’s like we are trying to keep ourselves safe and the system is actively against us. I have been quite lucky as my changes were caught early but I feel the whole system is quite ageist
You haven’t ‘had your life’ in your 60s. With covid there is not this attitude in the least.

2 Likes

Really encouraging article

1 Like

60 somethings can quite reasonably expect to live another 20, 30 or even 40 years so our lives are definitley not yet done. Although I am adversely affected by the long term side effects of my cancer treatment ironically I feel younger since my cancer diagnosis maybe because having experienced the reality of a life threatening disease I realised more how precious life is. But I’m angry about a health sytem that lets down older women - not just in terms of the cervical screening programme but more broadly in terms of management of the menopause. From what I’ve read it seems that although women live a bit longer than men we have more years of ill health.

x

1 Like

The article in the following link is entitled ‘Older women have the highest risk of dying from cervical cancer’: https://www.sciencedaily.com/releases/2019/04/190403101105.htm

x

Hi A. Thank you for taking the time to read my post and to comment. If I get to the stage where the LLETZ procedures are deemed to have been successful and am signed off by the hospital, I’ll probably go the private route too, which is sad. I believe in the NHS and opting for private medicine feels like a betrayal, but if the NHS won’t offer screening at all, what other option is there?
Janet x

1 Like

Hi Rebecca,

It does seem mad, doesn’t it, that a whole society can be locked down to protect the vulnerable and the NHS in a pandemic, when screening - which must, surely, be less onerous on the NHS than cancer treatments and surgeries - is refused to women over 64!

1 Like

Hi Jazza. I read your back story and I’m so sorry you’ve had such a lot to go through.

I read the Danish article - scary statistics - but I’m afraid you were right and I couldn’t access the BMJ article. Does it suggest that screening may be extended to older women? I certainly hope so. I have two daughters and would dearly love to think that things will have improved by the time they get to my age. (I know the younger generation are vaccinated so the incidence of HPV will be greatly reduced but, as we’re repeatedly told, no vaccination is 100% effective.)

You are so right about our life not being over. For most of us, this time of life is one where we’ve reached an age where our children are independent and we are able to cut down our working hours or retire completely. Of course we like to enjoy ourselves when we can, but the government is wrong if it thinks we’re expendable because we contribute nothing to the economy. How many of us provide free child-care so our children can afford to work, or support/care for elderly parents so they don’t end up bed-blocking in NHS hospitals or adding to the burden on an already over-stretched social care system? It makes no sense to let so many of us fall victim to cervical cancer when so many cases could be prevented or caught earlier by a screening system we know works.

1 Like

That article is scary. Why haven’t they changed the ages for cervical screening? Probably cost :frowning:

1 Like

Hi Janet, I can’t access the bmj article either but I thought the introduction as it stands was worth sharing because it was recently published and it’s good to know that there the topic is under consideration in the UK.

There’s many years to go until your daughters are in their 60s and gynae care could see many changes between now and then; we won’t know to what extent HPV vaccination will impact cervical cancer for many years. One thing that does frustrate me is that the UK seems to lag behind a lot of countries when it comes to gynae care.

x

1 Like

Hi Wonderland

I read somewhere that the stats for older women who get cervical cancer are often underestimated because they don’t take into account the number of older women who’ve had hysterectomies.

If it were me (unfortunately it’s not) I would use the information in the articles as a reason to get some private cervical screening checks done in my late 60s and my 70s.

x

1 Like

Hello again Janet

I must say on rereading this post it sounds as though your move to a new GP practice has been a positive development for you. At least they seem much more sympathetic. I think that women over 65 who have had an abbormal screening in the last 3 NHS screenings continue to be monitored over the age of 65 or at least that’s how I understand it. It sounds as though your private screening result and advice was not taken on board by your previous GP practice or do PHE strictly work within the NHS and therefore not have access to/ or disregard private screening information? Maybe in years to come the screening age will be raised in the UK - self sampling has already been trialled recently in London and may well enable the screening service to roll out a different sort of screening system enabling closer monitoring of those at increased risk regardless of their age. The generation who have had the vaccine aged 12 and 13 have lower rates of cc and cell abnormalities (but are still not totally protected and therefore need to attend screening). It is the generations who were not vaccinated in childhood who are more at risk. Apparently cc is quite rare and no one really knows why some people have persistent hpv. The screening programme is aimed at prevention and it seems that PHE and Jo’s are working on creating a more user friendly more efficient system. Sadly the people most at risk of succumbing to cc are those who live in countries where there is no screening programme at all. The WHO is working on improving this by 2030. Recently in the UK the RCOG published a report called “Better for women” which recommended improvement of health services in the UK for women by providing one stop hubs for women to access healthcare for all their gynae health needs. Davina McCall raised the issue of menopause on a recent TV programme and Dr Louise Newton has written an excellent book called “Menopause” which I found very useful. Sadly our society generally seems to overlook women over 55 in the workplace and elsewhere but that does not mean that we have no voice!!! Even if it is a very small voice on here! After the initial shock of my hpv diagnosis and cell changes I have made sure that I am very well informed of cc symptoms to look out for and intend to do everything I can to monitor my own health. That’s all I can do apart from making sure that I do not allow my anxiety about this to take over my life (still working on that one with the help of CBT and antidepressants!). There is still so much to enjoy in life - I have let my hair go grey/ white this year because I have decided I would rather spend more time with friends and family and exercising than sitting in a salon getting my hair dyed - lots if people have complimented me on the change. I am embracing being the age I am and if anyone dismisses me as unimportant because of my age/hair colour in my opinion that is their problem! You can count your true friends on the fingers of one hand in my opinion and I would rather spend life with those who value me for who I am rather than my age/ looks. I hope you will feel better in yourself soon and that the results of your second lletz show all the abnormal cells have gone. Waiting for test results is so stressful - be kind to yourself and try to make the most of each day - rant on here if it helps when you have a wobble Big hugs A x

Hello Jacks

I’ve just read your backstory. It sounds like you have been through the mill. It does make me wonder why after 15 years of annual smears they decided not to keep on screening you. Did they say why?

Good to hear that there is NED now and that you are keeping positive.

Hugs A x

Thank you, A! The reason they said they would do no more smears after 2017 was that by that time I was on a 5 year interval due to my age, and the next smear would be due in 2022. As I would be 65 in 2022, this would make me ‘too old’ for any more smear tests! Crazy, really. Research articles show that older women are still vulnerable to cc, AND they will not have been vaccinated for HPV. It’s not right. Yes, it saves money but I think lives are more important.

2 Likes

Couldn’t agree with you all more.

HPV is so common and we should all be getting regular tests to make sure we’re not at high risk of cervical cell changes that might turn into cervical cancer, no matter what age.

I actually don’t understand the rationale behind the 3 years becoming 5 at all!
Do they think people stop having sex with different people past 50?

The thing is you don’t have to be having sex with different people, or having sex at all. HPV can live dormant in your body. You may have only had one or two sexual partners in your whole life and be unlucky…

1 Like

I certainly have :slight_smile:
Divorce rates are quite high in the 50s agr group.
I’ve written before that I had zero risk ( and I’m sure of that) until 51.
There are issues I read surrounding colposcopy with older women. Saying that not with me ( at least they didn’t say). I am hoping for a therapeutic vaccine as that plus HPV tests are the way to go.
Plus I chose to lie about my age and have a vaccine.

1 Like