Janelle
by NICOLE MADIGAN EVEREST
You hear about it almost every day.
In the news, on television, statistics, sometimes even friends of friends.
Yet you never think it’s going to happen to you. Until it does.
I never contemplated being directly impacted by cancer.
I never even entertained the prospect that my friends or family would ever fall victim to it.
Yet they have.
Considering the statistics, it’s quite illogical to think cancer won’t touch your life, one way or another.
First two of my brother’s closest friends lost their lives to cancer.
Then my mother was diagnosed with cancer – a devastating reality check if ever I’ve had one.
Surgery and a benign tumour resulted in her survival. An outcome I am thankful for every day.
And then this happened.
My sister-in-law lost her life to Cervical Cancer.
My beautiful, fit, healthy, young sister-in-law.
Janelle was 34 when she lost her battle. Leaving behind her husband, Brett and two gorgeous children, Keirra, 5 and Ethan, 3.
And what a battle is was. Janelle fought harder and endured more than any person should have to. She did it because she loved life. And believed in miracles.
Brett with Janelle
Her mantra throughout her journey was to “never never never give up”. And she never did.
And neither did her husband – my brother – who was by her side every step of the way. Her biggest supporter. Her biggest believer.
And although he’s now coping with the loss of his soulmate, he still hasn’t given up. Brett is dedicated to fulfilling Nelly’s dream – to help others fighting terminal illness and help raise awareness and funds for the Australian Cervical Cancer Foundation.
Thirty-eight and a half Australian women out of every hundred don’t have a Pap test, or Pap smear, every two years as recommended.
Here’s why you should have them.
1. It prevents around 90% of cervical cancers.
2. Over 90% of women diagnosed with cervical cancer in Victoria either never had a Pap test, or had not had Pap tests regularly before being diagnosed. I’m no statistician, but we can assume that this percentage would roughly apply Australia-wide.
3. It’s one of the very few cancers that can be pretty much prevented. Pap tests allow women to take control of their bodies and say with a large degree of certainty that “cervical cancer will not happen to me”.
To help achieve their dreams, Brett is launching the Janelle’s Miracle Foundation to support those facing a similar situation and to promote cancer awareness, prevention, good health and wellbeing.
As part of the foundation, Brett has teamed up with Crocs Play Centres in Victoria, offering a free monthly event for children who have lost a parent to come and play with other kids facing the same confusion and isolation.
It’s also a great place for remaining parents to spend time with others who understand the pain, fear and loss they are experiencing.
Brett is also raising funds for the ACCF through the Melbourne Marathon. You can sponsor him by clicking here.
Although Nelly has left this Earth, Brett still believes in miracles. And in life. And most importantly in hope and in love.
Yes, cancer does exist, it’s common and it can happen to you – but in many cases can be cured if detected early enough.
So stop making excuses. There’s no better time than now to start looking after you.
In case you needed further prompting, here are some stats.
- All women aged between 18 and 70 who have ever been sexually active should have a Pap test every two years. This includes women who have had the HPV vaccine, which helps prevent around 70% of cervical cancers.
- A Pap test looks for changes to the cells on the cervix which if left undetected and untreated, could potentially develop into cervical cancer.
- Cervical cancer is quite slow-growing (10-15 years) so a Pap test every two years is usually enough time to detect and treat such changes before this happens.
- Cervical cancer in Australia is reasonably rare and this is because of the National Cervical Screening Program (Pap tests).
- In Australia Cervical Cancer is about the 13th most common cancer affecting women
- Each year there are around 150-200 deaths from the disease.
- 90% of women diagnosed with cervical cancer had either never had a Pap test or didn’t have them regularly in the 10 years before diagnosis. It is estimated that two-yearly Pap tests save around 1200 Australian women from being diagnosed with cervical cancer each year.
Nicole Madigan is a journalist, editor and communications specialist , an ambassador for the Miracle Babies Foundation and the full-time mother of two rambunctious toddlers. You can follow her on Twitter here.
Comments
39 Comments so far
I am so sorry that this lady died, and what an awful way to go. It’s about time that a better, more reliable test for cervical cancer is made available. So many women in the comments on this post seem to have very regular pap smears, but are still diagnosed with cancer. This is not good enough. We are told all the time about how great the pap smear is, yet women who are compliant and have very regular smears are diagnosed with cervical cancer at a seemingly alarming rate.
I realise that a lot of these diagnoses are nothing more than false positives, and there should be a watch and wait approach, as almost all abnormal cells all the way to CIN 3 will resolve on their own, but the amount of actual cervical cancer diagnosed is just not good enough. Women have been stuck with the same test for decades. Why aren’t there reliable tests out there? hrHPV, or a blood test for example? Men’s PSA testing has come along in leaps and bounds, and is much more reliable than it was to start with, so why are we not using reliable and better methods for cervical cancer by now. The millions and millions of dollars spent by the government on this disease, yet we have an outdated, unreliable test, and more and more women are getting cervical cancer and dying from it.
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My daughter age 32 died of Cervical Cancer after fighting it for just under a year and she DID have pap smears EVERY two years. The pap she had two years prior to finding the cancer was normal. Her husband gave her the HPV virus, he is responsible for her death as he was unfaithful to her for over 14 years. Save your children get them vaccinated boys AND girls ages 9 – 26. BEFORE they are sexually active.
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I’m so sorry for your loss, but not much is said about false negatives, in fact, we rarely hear any critical discussion about pap tests. Many women seem to accept that pap testing is reliable. That has always worried me…it means lots of women endure over-treatment and some lose their lives, like your daughter.
Population pap test is outdated – we should move to hrHPV primary triage testing – like the new Dutch program – and offer women 5 hr HPV primary triage tests at ages 30,35,40,50 and 60. (and there are also self test options like Tampap (UK) and the Delphi Screener (The Netherlands, Singapore, Italy and elsewhere)) – that way we can identify the roughly 5% of women aged 30 and older who are HPV positive and at risk, these are the only women who can benefit from a 5 yearly pap test. There is no point doing pap tests or treatments on HPV negative women.
This is the new Dutch program and it will save more lives by identifying those at risk, but just as importantly it will spare huge numbers of women (about 95% of those aged 30 and older) from a lifetime of unnecessary pap testing and the fairly high risk from false positives and over-treatment.
Australian women are some of the most over-screened and over-treated in the world – we seriously over-screen which does nothing more than produce huge numbers of false positives and massive and potentially harmful over-treatment. We also miss too many of these rare cancers by relying on outdated and inefficient (and expensive) population pap testing.
Most women are unaware of the facts behind this program…and so there has been zero pressure to change the program. A review is underway now, but I fear excess will remain and that certainly does not benefit women.
Finland has had a 6-7 pap test program since the 1960s and have the lowest rates of cc in the world and they send far fewer women for biopsies (fewer false positives) whereas Australian women are still being told they need 2 yearly pap tests from 18 to 70 (some start even earlier) – that can mean an absurd 26 or more pap tests. What on earth are we doing in this country?
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Thank you for sharing Janelle’s story Nicole.
I had my first pap at 24.5 years old which lead to a colposcopy and they scheduled surgery on the spot for a cone biopsy which successfully removed CIN3 cells from my cervix and an endocervical adenocarcinoma in situ. I’m hoping my experience will encourage the women around me to get themselves checked regularly!
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I lost my wife who was only 39 4 months ago to Cancer after being diagnosed only 84 days earlier leaving our 3 young boys shattered. Nothing is more important than your health, get yourself checked out!
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That is so sad, I have been following Janelle’s journey ever since I saw her story on tv and donated money. At the time her and her husband were raising money to go overseas for treatment. She seemed to fight so hard, it is devastating that she lost that fight. My heart goes out to her husband, children and family.
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I was not quite 17 and had pre cancerous cells lasered off under happy gas. So as soon as you are sexually active start having pap smears.
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I had cervical cancer at 28 and had a year of chemo, radiotherapy and a full hysterectomy. I am grateful every day of my life that I survived and Janelle’s story is a tragedy that it hurts me to think about. This story is a reminder to get a pap test regularly. In my case I had them done every year but then the recommendation changed to every 2 years – and that gap was long enough for my aggressive and fast growing cervical cancer to grow. Please girls, don’t delay in getting the test, it is a small inconvenience and discomfort to go through in comparison to cancer! Janelle and her family’s bravery in speaking out will save more lives.
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Grace, did you have an adenocarcinoma? The very rare cases that occur in young women tend to be this even rarer form of cervical cancer and are usually missed by pap tests, which were designed to detect squamous cell carcinoma. This is why countries that don’t test women under 30 have no more cervical cancer in young women than countries who test young women, but the latter countries have high referral and over-treatment rates – young women produce the most false positives. The cancer is very rare in those under 30, so you were very unlucky….so even annual pap testing is most unlikely to have helped you. Pap testing young women can actually disadvantage them with false positives and over-treatment, but also with false negatives, which may falsely reassure and these women may delay seeing a doctor for symptoms. Young women in many countries are not tested at all and are simply told to see a doctor with persistent and unusual symptoms.
Pap testing doesn’t change the small incidence rate in those under 30 and unfortunately, HPV primary testing is not recommended either as 40% would test positive, almost all are transient and harmless infections…by age 30 only about 5% of women will test positive for HPV, these are the only women who can benefit from a 5 yearly pap test, (until they clear the virus) there is no difference in terms of benefit between annual and five yearly pap testing, but risk rises steeply with more frequent pap testing…false positives. Australia has always over-screened women, and sadly, change has been far too slow, but a review is now finally underway.
HPV Today, Edition 24 has lots of information on HPV primary testing and cervical cancer…registration is free.
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Thank you Nicole. My beautiful friend died of cancer almost a year ago. She was the same age as Janelle and left children the same age. It was truly horrendous.
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This is very sad to hear indeed.
At 27 I had my 3rd ever pap test the other week. I felt terrible for leaving 4 years since my last one and after reading this article will make sure I never leave it longer than 2 years again.
It’s so easy to make excuses not to go when you need to take time off work etc. I like the idea of a reward contingency though. Will do that next time. But really, some peace of mind is probably the biggest reward of all for me.
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I’m in tears. This is my absolute worst fear, to leave behind my husband and baby and family. How absolutely devastating for you all. Coincidentally, I booked in for a pap yesterday, for this Friday – it’s been 3 years, so I’m a little overdue. I’m going to book a pedi straight after so I have something to look forward to, great suggestion
Really, though, it’s a couple of minutes of discomfort for a couple of years’ of peace of mind… why risk it??
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I remember yelling at a friend in the car outside a medical centre. We were both going in for head colds. She came up with every excuse under the sun. What floored me was that she’d had a colposcopy before for cin 2 and had 2 young children and the best she had was that she’d had sex the night before and not showered yet. I bullied her into making an appt for one at that visit.
I’ve always had them and now my daughter has them.
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I’m so sorry for your loss. What a beautiful article.
And thank you for the reminder. I am due and will book in Monday.
Keep up the good work.
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Thank you for the reminder.
I’m making my booking on Monday xxx
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It upsets me to read statistics that so many women do not look after their own health. We usually give the guys a hard time about this topic.
Being in charge of your own health is serious, & if you are worried that there might be a problem, it is way more important to find out as soon a possible when there is something doctors can do about it.
When I was about 20, I remember one of my friends mums told us that she had hers booked in around mothers day. She always remembered the date. Nearly 20 years later I do the same thing, I put a reminder in my iphone calendar 2 weeks before mothers day every second year & I book in & just do it.
I got a dodgy result about 10 years ago, & had to have a procedure but because it was found so early, the procedure was quick & under local anaesthetic. Since then I have had no problems. If I didn’t have them regularly they might not have found it in time & the story might be different.
I like what Jess said below. Reward yourself for having one. Why not buy a bottle of wine, or even stop in for a mani & pedi on the way home. Next year I plan to do both
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Pap smears and cervical cancer isn’t just something that only older women, or women who have been highly sexually active need to worry about either!! I had abnormal results when I was just turned 20 years old – my FIRST pap smear. After close monitoring for several months, the high grade changes didn’t resolve and kept developing, so had a colposcopy, biopsy and then had the cells removed. I absolutely hated having to go so often for the treatment and then check ups at 3 months, 6 months, then 12 months for 3 years after, but the alternative would have been much, much worse. My doctor told me I was extremely lucky they caught it when they did, or I most likely would have developed cancer by 26-28 years of age.
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Knowing Janelles Brother Stu & Sister in law Stace quite well and going on this journey with them, i watched them support Janelle through tough times. She never ever gave up the fight, and i hope that her story can help people realise that this can happen to anyone. So amazing how many lives she has touched on her journey and im sure brett will continue her story and message x
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I just read your brothers post on the Light Beyond and it brought me to tears.
What a tragic loss. You & your family are in my thoughts. My love to all of you.
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Just read it too, so horribly sad. Cancer is a motherf%$ker. Here it is for anyone else who is interested.. http://www.thelightbeyond.com/forum/showthread.php?t=1977 Definitely going to donate to his Everyday Hero page now. And now I’m going to go and cuddle my husband and daughter EXTRA HARD!!! x
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This is timely. And a good reminder to us all. The one thing that scares me about cervical cancer is that it seems to have no prejudice. Some cancers are age-related, some can be the result of lifestyle or environmental issues, among other reasons (or none). Cervical cancer seems to me to be able to strike women down at any age.
I had a Pap smear two days ago, I have had a couple but it was my first in too many years. I now attend a student health clinic since we are studying abroad, and they do not hand out prescriptions for the pill without an annual pap smear. I am still debating whether this is a good or a bad thing (would it put girls off from getting contraception?)
She found a cervical eversion, so now I am off to get a colposcopy. Slightly distressing is that I don’t get the Pap results back for 10-14 days. I am 99% sure I waited 2 days for results back in Aus. Talk about drawing it out! Does anyone else normally wait this long? (This is the US health system, I guess.)
To those scared of it, if you have had sex and used a tampon, there probably won’t be any feeling you haven’t already encountered. It sounds worse than it really is. And peace of mind is worth it.
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I too was scared of going for a pap however every time I saw the ad on TV I had a feeling I should get one and at 23 I blurted out to the doctor while I was there with a cold if I could have one…. 2 weeks diffence and I would have had cervical cancer…. I had surgery to remove the stage 3 cells the next week. I have never been so thankful in my life . The pap doesn’t hurt, the surgery was done in a day and I was home ,now pregnant at 27 and have pap every 6mnths to check and it’s so much better to know I’m in the clear for a few mins of awkwardness
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Here is a reference…our program must finally remove those under 25 from testing after the current review ends, this is not new research either, it’s been known for years that pap testing young women does not change the small incidence or death rate, but leads to high over-treatment after false positives. Finland’s program has started at age 30 since the 1960′s….
http://www.abc.net.au/science/articles/2009/07/29/2639772.htm
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I had a highly abnormal result from a pap smear at my 6 week post-partum check up. The results showed CIN III cervical dysplasia – the worst before cancer. It had been 2.5 years since my last smear.
I had a colposcopy and biopsy which were uncomfortable but not painful, then a LLETZ procedure done in day surgery – again, uncomfortable but nothing compared with cancer.
Please get pap smears regularly.
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Even Papscreen does not recommend pap tests until you’re 12 weeks post delivery. Hormonal changes and trauma from the delivery make a false positive pap test more likely…waiting 6 months or a year is the recommendation in countries with evidence based testing. Testing during pregnancy is also very unreliable and not recommended in many countries….hormonal changes make a false positive more likely. Hopefully, long overdue changes to our program will reduce our huge over-treatment rates.
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I’m glad there was mention of the gardasil vaccine as its as impotant for young women to get it and when combined with regular pap tests we should be okay… It really isn’t that bad getting a pap test though for all those ladies who are scared! The nurse can do it if you have a male doctor.. I’m 26 and I had a pap test a few weeks ago that came back highly abnormal… Had a colposcopy and biopsy this week which gave me bad cramps! It was uncomfortable and embarrassing but that’s all…I’m waiting for the results.. My last one was 2 years ago so im glad i went when i did! But it’s more scary worrying about it that actually putting your mind at ease getting it done and saving your life! It’s when people share their stories that hit us emotionally that cause action so thank you for bravely sharing your story. Im going to tell all my girl friends to go get a pap test this month! x
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There’s something so sad when a young family loses a mother. They’re kind of the hub of the family.
I’m very sorry for your family’s loss.
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I’m 25 and have never had a pap smear… I don’t know why, but it scares me and it’s always in the back of my head that I need to do it…
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Hey! I had my first one the other day. I’m only 21 though. But seriously, IT’S SO NOT SCARY AT ALL. I was putting it off too, but I guarantee you once you do it you’ll wonder what you were on about. It doesn’t hurt, it doesn’t feel like anything and takes no longer than 20 seconds. HONESTLY.
Go for it. You’ll stop worrying!
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I’m 24 and I had my first pap smear in January. I really didn’t want to. But you know what? It’s not that bad. A few minutes of embarrassment/being uncomfortable and then I rewarded myself by buying myself a bottle of wine. You should do it, if only to get rid of that niggling voice at the back of your head.
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I hear ya. Ask your friends/colleagues for a recommendation for a good doctor and JUST DO IT.
Better that you have 20 minutes of embarrassment etc then a lifetime of dead!
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Pap smears are nothing. Find a doctor you trust and just do it. Don’t think about it, just get it done. Nothing is worse than what this family has gone through. My heart goes out to you Brett and family.
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Put it this way – I would rather get 100 pap smears than my regular brazilian/bikini wax. If your happy to do that, a pap smear is a walk in the park, painless, and with only slightly more uncomfortable/awkward pauses and chit chat than a wax. Easy peasy. Do it!
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I guarantee if/once you’ve had a baby a pap smear is as uneventful as flossing your teeth!
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Like you I was terrified. I had my first one at 26. A wise girlfriend who has ALL the answers suggested I go to a Gynaecologist for my first one because they do them all day every day and would have it down to a fine art
Amazingly I barely felt a thing. It was uncomfortable but the anticipation was far worse than the actual event. So my tip would be to have it done by a specialist or go to a Womens Health clinic because thats what they do all the time, especially if you’re scared.
Good luck.
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Please make an appointment first thing monday! Those statistics say it all.
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Hey Young Vintage, time for you to book a pap smear for this week. This week! Please dont be scared, it’s done in a less than a couple of minutes. and it’s just too important to miss. Cervical cancer is what is scary. A pap smear is just….a necessary 60 seconds. The dentist however – totally freaks me out.
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Wow. I am so sorry for your family’s loss. But how wonderful that Janelle’s death will not be in vain.
I’m 28, and last year had a dodgy pap smear result. I’d probably gone 4 years without a pap smear-I was young, healthy, travelling, busy…. The result floored me…
I had a colposcopy-they decided to wait and watch it for a year, and this year they decided to remove it. All of the procedures were a bit uncomfortable, but nothing too bad. And I am so grateful.
GET CHECKED. GET A PAP SMEAR! Most people will get a negative result-even if your test shows something, it is usually quick and relatively painless to remove.
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And by ‘remove it’ I mean I had a day procedure under a general anaesthetic (I could have even avoided that) to remove the affected skin from my cervix. I had no pain from that at all.
You are better off knowing about it, and dealing with it if something shows up. GET CHECKED!
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