Kathy had always considered herself to be healthy and active, until she her GP told her she had cervical cancer. Kathy, 44, was told that while her prognosis for treatment was hopeful, if she had only left that routine pap-test another month or two, she may not have lived to tell this story.
Have you ever been late on your pap-test? A month? Two months? Even a year or more? If you answered yes, you’re not alone. A recent study revealed that in NSW alone up to 130,000 women admit they are likely to delay their next pap test beyond the recommended two years and may be putting themselves at a high risk of cervical cancer.
The Facts About Cervical Cancer
- Regular Pap tests every two years can reduce the risk of being diagnosed with cervical cancer by 96 per cent, which means saving the lives of 1200 women each year in Australia.
- Only six out of 10 women are being tested regularly, every two years.
- Cervical cancer has the 2nd highest incidence and mortality among women in developing countries, second only to breast cancer.
- Around 734 Australian women are diagnosed with cervical cancer each year.
- Many women are not aware that the HPV vaccine does not protect them against all types of HPV that cause cervical cancer and vaccinated women still require regular cervical screening/Pap tests every two years.
Here’s Kathy’s Story
Tell us about the day you discovered you had cancer?
I had been at work all day and when I got home there were 5 messages on the answering machine from the doctor’s surgery asking me to call. As I’d just had my Pap test the week before, I had a feeling something was wrong. I went straight to the surgery where my doctor told me I tested positive to cervical cancer. The news came as a big shock as I always thought of myself as fit and healthy. I was silent for a minute, and then asked my doctor what we had to do to treat it. With all the information on hand I went back home and told my husband Mike who was understandably quite distressed and promised me we would tackle this together.
What difference would a few months have made to the treatment or the end result? Tell us a little about what your Dr told you…
I was so lucky. I’ll never forget my doctor telling me, ‘You are very lucky. If you had waited another 6 months it could have been a whole different story’. Cervical cancer is a fast growing cancer yet curable if caught early. I cannot stress enough how important it is to have regular testing.
Can you talk us through the treatment?
After consulting with my doctor that surgery was needed quickly to remove the tumour, the process of treatment was extremely uncomfortable and invasive. There are different ways the procedure is conducted, but in mine I was awake through the whole process. The details are quite graphic, but it was an experience which no woman should ever allow herself to go through. I took a couple of days off work with bed rest at home, and took it easy for a few weeks afterwards.
Did you have to undergo any kind of chemo or radio-therapy?
I was very lucky as no chemo or radio-therapy was needed. The whole procedure was done at my gynaecologists office – I was in and out in just a few hours. It was still stressful, but I’m so grateful that the treatment was so minimal.
Has there been any follow-up treatment or any complications/ongoing issues as a result of the surgery?
I did have a couple of follow up appointments and Pap tests every 6 months for the first 2 years following the surgery. I’m now having them every 12 months and my results have been normal.
What message would you give to other women who might only be a few months late on their pap smears?
I cannot stress enough how important it is to have regular Pap tests. Ladies, I’m talking every two years without fail. We all make time for our beauty appointments every month, so there is no excuse not to go to your doctor when your screen is due. A Pap test takes only 5 minutes and is much quicker and less painful. It could save your life, just as it saved mine.
Have you changed your lifestyle (health/fitness/diet etc) in any way after?
Not really, I love to surf and have always been relatively healthy and active. I very rarely get sick or visit a doctor and that’s why it was quite a shock. I have changed my outlook and I’m also far more vocal about the issue. I openly encourage my friends and family to get tested. There’s no point being embarrassed about it!
How has this impacted your family, kids and husband?
We have always been a very supportive family, which really came through after my diagnosis. It was a strong reminder to some of my younger female relatives who had never had a Pap test. I’m happy to say that they are now both regular with testing. It’s a bit of a running joke in my family about my constant reminders to keep up with Pap tests. My first question when I haven’t seen them in a while is ‘have you had your test?’. While we all have a laugh, the situation is serious and I truly believe it’s up to women to remind each other about such an important procedure.
Kathy, from Sydney’s Palm Beach, has become known amongst friends, family and the community for advocating the importance of regular screening. She actively spreads the message to women that cancer can affect anyone and that there is no excuse such as lack of time or the ‘awkward factor’ for neglecting regular Pap tests. For Kathy, the 5 minute procedure is far quicker, less awkward and less painful than most beauty treatments young women endure, except this ultimately saved her life.
For more information on Cervical Cancer screening please visit www.cancerinstitute.org.au
Do you get screened regularly? Or, have you had a brush with cervical cancer like Kathy? We’d love to hear your thoughts and stories below…
I’ve never heard of a treatment for “actual” cervical cancer that can be carried out in a doctor’s surgery, but biopsies and treatment for abnormal cells or CIN 2 or 3 may occur in a doctor’s rooms. The LLETZ procedure for abnormal cells (not cc) can be carried out in a doctor’s rooms with no GA, but many doctors also, do that procedure in day procedure under GA. I suspect like most Australian women, Kathy had “abnormal” cells removed, not cervical cancer.
CIN is not cervical cancer, it’s pre-cancer, most CIN does not progress to invasive cervical cancer. I can certainly understand why someone with CIN 3 might choose to have treatment, but she does not have cervical cancer and was unlikely to develop it.
I think this misunderstanding is why so many women greatly fear this rare cancer, and assume it’s a major threat, it’s not, and never was. It skews our perception of risk and takes our focus off the major killer of women: heart disease/attacks and lung cancer is the No. 1 cancer.
We think all of these biopsies and treatments are about cancer, when they are mostly false positives and over-treatment.
Cervical cancer is on the rare side, always was, and it was in natural decline before pap testing even began. Cervical cancer also, develops slowly over many years, although an even rarer form of cervical cancer, adenocarcinoma, is more aggressive, but is usually missed by pap testing. (they are often false negative cases) The pap test was designed to prevent/detect squamous cell carcinoma.
About 12% of CIN 3 would progress to cervical cancer so I can certainly understand why a woman may be treated, some studies go as high as 20 to 30%. Most CIN 2 does not progress, again only the rare cases.
So many Australian women have biopsies and “treatments” because we seriously over-screen women, we test far too early, too often and for too long, that provides no additional benefit to women, but leads to high false positive rates, excess biopsies and potentially harmful over-treatment. (damage to the cervix can lead to premature babies, the need for c-sections, miscarriages, infertility etc.)
The lifetime risk of a colposcopy and usually at least a biopsy is a huge 77% in this country, while the lifetime risk of cc is less than 1%, about 0.65%
Sadly, many women who have treatment for abnormal cells (most would never develop into cancer) are left believing they had or would have ended up with cervical cancer, this is a cruel burden to place on women.
Women choosing not to have 2 yearly pap testing are actually following the evidence, there is no difference in terms of benefit between 2 yearly and 5 yearly pap tests, but the former produces far more false positives.
If you look at evidence based programs in countries like the Netherlands and Finland, you’ll see there was no need to worry and harm so many women, and this is not new evidence.
Finland has had since the 1960s, a 7 pap test program, 5 yearly from 3o to 60, they have both the lowest rates of cc in the world and refer FAR fewer women for colposcopy/biopsy/treatments, we “treat” more than 10 times the number of women. Women here are still being told they should have 26 (or even more) pap tests!
Now the evidence has moved on again and the new Dutch program is IMO, the best in the world for those who wish to screen, and yes, all cancer screening is nothing more than an offer, it comes with risks and benefits and any decision to screen or not should be an informed one, it’s our choice. I’ve always declined pap tests, I’m not prepared to accept much risk at all to screen for a rare event, I was content with my near zero risk, now I understand I’m HPV- and cannot benefit from pap testing.
I’ve also, declined mammograms, head to the Nordic Cochrane Institute website and read their excellent summary of the risks and benefits of mammograms before you make your decision. The evidence is not good, about 50% of screen detected breast cancers are over-diagnosed and any benefit from screening is wiped away by those who die from heart attacks and lung cancer after treatments.
Anyway, back to cervical screening.
The new Dutch program will scrap population pap testing, a burden for the 95% of women who can never benefit (those HPV-) instead they’ll offer 5 HPV primary tests or women can self-test using the Delphi Screener, at ages 30,35,40,50 and 60 and ONLY the roughly 5% who are HPV+ will be offered a 5 yearly pap test. (until they clear the virus)
This will save more lives, including more cases of adenocarcinoma, and takes most women out of pap testing and harms way.
Our new program that should start in 2016 will sadly, stay with excess, that obviously suits many in this country, but that’s certainly not women.
It is so important that cancer screening is assessed with randomized controlled trials (there are none for pap testing) and then if implemented, it should focus on the evidence and what’s best for the target population. Also, vested and political interests should never be permitted to influence or control these programs. Millions is made from screening, biopsies, over-treatment etc. so it’s important to keep an independent eye on these programs.
Our program should have been changed long ago, heads should roll that women have been urged to risk their health with serious over-screening.
Our new program is likely to be 5 yearly HPV primary testing from age 25 to 74, so testing too early, HPV testing should not occur before age 30, it means about 40% of young women will test HPV+ these are transient and harmless infections that will clear within a year or two. It’s not difficult to find the evidence that HPV testing is not a good idea before age 30, but we’ll choose to once again, ignore the evidence.
Also, there is no need for so many tests, it’s excessive, 5 HPV tests is enough and testing to age 74 is unnecessary. It’s also, concerning that HPV self-testing will only be offered if women refuse the invasive HPV test for 6 years, self-testing should be available for all women. Thankfully, women can order self-testing over the internet or get the Delphi Screener through her GP. (hasn’t that been kept quiet?) Of course, our GPs receive target payments for pap testing, so women may need to be firm if they want to self-test. We do have some great GPs though, who’ll put your interests first, it’s worth your time to find one.
Many women find the speculum exam unacceptable for a variety of reasons and older women can find it painful and intolerable. If we’re serious about further reducing the incidence and mortality from cc we wouldn’t place unnecessary barriers around screening.
It is also, concerning that women who test HPV+ under our new program (and there will be a lot of young women with the inclusion of those aged 25 to 29 in our HPV primary testing program) may be sent for colposcopy and biopsy, when they should simply be offered a pap test.
I think our program may become irrelevant as more women work out they can’t trust the official discourse, that it may not be in their best interests, there is something better out there etc. Many have already walked away and found something better or have made an informed decision not to screen, to screen later, less often etc.
It’s disgraceful that for so long women have been pressured, misled and scared into testing to achieve a govt-set target, this is not ethical cancer screening, not even close. Men are not treated this way, real information came out quickly with prostate screening and doctors were reminded to obtain informed consent, women are entitled to the same ethical, legal and respectful treatment.
I wish Kathy all the best, if her treatment was carried out in her doctor’s rooms, I doubt very much she had cervical cancer, I imagine like many women who follow this program, she had treatment for CIN 2 or 3, which is not cervical cancer and unlikely to ever be cervical cancer.
When 77% of women have colposcopy and at least a biopsy and cc has a lifetime risk of 0.65%, it means it’s impossible that all of these women have been saved, almost all have simply been over-treated.
I’d urge all women to do some reading and make informed decisions.
HPV Today sets out the new Dutch program, Edition 24, and there is a lot of reliable information in that publication, registration is required, but it’s free.
I should clarify that cervical cancer has always been a fairly rare cancer in the developed world, it is of course, a much bigger problem in some third world countries, these women have unique risk factors, you cannot compare the African with the Australian situation.
Some argue we would have African rates without pap testing, this is nonsense, cervical cancer was always a fairly rare cancer here and it was in natural decline even before pap testing started.