Living with cervical cancer: ‘Had I not delayed screening, it may have been a different story’

Samme Allen
168857976 300x199 Living with cervical cancer: Had I not delayed screening, it may have been a different story

Posed by models (Getty Creative)

My first cervical screening at 25 was quite a negative experience due to the nurse being the opposite of reassuring and giving me the wrong information. After that first test I simply didn’t go back again. Years passed, I worked overseas, moved house a lot and just always seemed to be able to avoid thinking about another screening.

Finally at 35, in 2010 I went for a routine check up and my nurse mentioned that I was overdue a cervical screening. Because I felt so at ease with this nurse I agreed. My screening results came back with severe dyskariosis (severe cell changes), and further tests revealed I had cervical cancer. Being told you have cancer is devastating but I had (and have) such a wonderful medical team that really did explain everything in simple terms and offered me great support. The cancer was at an early stage so I was extremely fortunate to have to go through just three operations without chemotherapy or radiotherapy.

Going through treatment was hard but I actually struggled more to cope with my feelings and emotions after the surgery. I hadn’t prepared myself for the long journey of tests, biopsies and the worry that the cancer would come back. As a strong independent woman, this was something I really struggled with and no one close to me could empathise or understand me.

Initially, during my diagnosis and treatment I didn’t seek out support. After the operations I started to use an online forum for a cervical cancer charity and eventually posted how I was feeling. Almost immediately I had women sharing their experiences, advice and support for me, I couldn’t believe it! This small recognition made me feel so much better.

I then joined the charity’s local support group rather tentatively, thinking it would be a bit of heavy therapy but again, was surprised and delighted to find a group of like-minded, wonderful women who had all gone through various treatments and had found the support of each other. The meetings included wonderful sessions on various elements of living through cervical cancer which helped me come to terms with the long lasting impact of the diagnosis. But more than that the group gave me a chance to have a coffee and a gossip.

The impact of a cancer diagnosis is far reaching both personally and professionally but I feel extremely lucky that I have a fantastic network of friends and colleagues and a loving and supporting family. It’s incredibly tough for my parents and indeed my husband. In fact, I’d say this was probably the worst part of the whole experience as they felt so helpless.

I have a wonderful job at the Barbican Centre in London and I was fully supported during my treatment. My boss was wonderful and the occupational health met with me regularly to ensure work worries didn’t hinder my recovery. I worked from home (in fact, I worked right up until I got wheeled into theatre… the wonders of the iPhone!) after the operations and had no pressure to return to work until I was 100 per cent.

It is three years since my diagnosis and first operation. I have six monthly colposcopy appointments, which include screening and occasional biopsies to check that the cells are not changing. I have had mild changes and there is a possibility that more surgery will be necessary in the future but I’m in excellent hands and have great support through the charity, my family and friends. I keep fit and healthy and live life to the full.

I was incredibly lucky that they caught the cancer at an early stage and had I delayed the screening much longer it may have been a different story. It meant that I didn’t have to suffer prolonged and more invasive treatment. But to think that I could’ve quite easily prevented all of this is still extremely frustrating. For many women the thought of a cervical screening is worrying but for five minutes of discomfort or embarrassment it is worth it in order to prevent a diagnosis of cervical cancer.

Cervical Screening Awareness Week takes place 9-15 June

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  • elizabeth52

    It’s a disgrace that women don’t receive balanced and complete information on cervical and breast cancer screening. Informed consent is a legal right for men AND women. Yet few women understand what they’re agreeing to or declining. I took myself off to the Medical Library more than 30 years ago, spoke to several doctors/lecturers, and made an informed decision not to screen. As a low risk woman, I was content with my near zero risk of cervical cancer, especially when the risk of a false positive and potentially harmful excess biopsy and over-treatment were high, very high here in Australia, where women are seriously over-screened. Our program is not evidence based and produces huge (and hidden) over-treatment. Lifetime risk of cervical cancer: 0.65%
    Lifetime risk of referral for colposcopy/biopsy: 77%

    I believe we make the best decisions when we’re properly informed of the evidence. Yet all these years later women are still just expected to screen with little more than slogans, spin and scare campaigns. It’s paternalistic and unacceptable.

    The fact is this cancer is rare, always was and was in natural decline before testing began…few women benefit from pap testing. Over-screening and non-evidence based testing just sends the risk of over-treatment way up, for no additional benefit. Damage to the cervix can lead to premature babies, c-sections, cervical cerclage etc.

    For those women who wish to test, take a look at an evidence based program, the Finns and the Dutch are the ones to watch. Finland offers 5-6 pap tests from 30 to 60 and have done since the 1960s, they have the lowest rates of these rare cancer in the world and refer FAR fewer women for biopsies etc.
    The Dutch have the same program, but their Health Council has recommended a move to a new program. Women will be offered 5 hrHPV primary tests at ages 30,35,40,50 and 60 (or you can self-test with the Delphi Screener) and ONLY the roughly 5% who are HPV+ and at risk will be offered a 5 yearly pap test. (until they clear the virus) This will save more lives and FINALLY take most women out of pap testing and out of harms way.

    It’s awful to look at the damage our program has caused to huge numbers of healthy women, both emotionally and physically, and the real tragedy is, almost all of it was avoidable with evidence based testing and some respect for informed consent.

    CIN 3 is not invasive cervical cancer and most CIN 3 does not progress to invasive cervical cancer, studies show that about 12% of CIN 3 progresses to invasive cervical cancer. I can understand however, why a woman would choose treatment for CIN 3, but most of these women will go on to believe they “would” have developed cervix cancer or “had” cervical cancer, when that’s simply not true.

    Over-treatment has led many women to believe this cancer is a huge threat, it’s not, it’s a small risk. There is no need to worry and harm the masses when we can now easily identify the small number at risk. It concerns me the major focus in women’s healthcare is a rare cancer, that’s bad for our health. Time to stop giving women orders and to start respecting them as independent adults with a right to make an informed decision. Women who wish to test should also, demand evidence based testing. IMO, vested and political interests thrive in women’s cancer screening.

    Hope all goes well for the author of this article in the future.

  • Garbo1929

    After three years of negative Pap tests and having high-risk HPV, I had a normal pap and negative for the virus. Instead of going through the invasive treatments I was offered, I changed my lifestyle, dealt with long-term emotional issues and stress, ate whole foods and healed myself. Women need to know they can trust and heal themselves by getting to the root of the problem.

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