We’d like to hear your story: 

• Have you been diagnosed with abnormal cells or cervical cancer?
• How did you feel when you found out?
• What sort of information did your health professional give you and was it relevant?
• What sort of support services were there for you?
• What worked well for you?
• What could have worked better for you?

If we think your story might help others we may publish it on our website.

Click here to send us your story.

Chelsea's Story

The beginning

Girls you know those dreaded pap smears you have to get every two years, and boys you know that horrible visit to the doctor your girlfriend or friend complains about... well that is where it all began! Towards the end of January 2012 I decided it was time for me to finally get around to seeing my GP for my pap smear test.  I was overdue, having received a letter from the registry 6 months prior.  I have had two previously and knew exactly what I was in for and was actually dreading having it done.  Definitely not something I was looking forward to having.  However, it was not until now that I realised how important they are and if there is one thing I can achieve by sharing my story its that every young woman/girl sees their doctor and has their regular check up.  They take approximately five minutes, and honestly it is nothing compared to the poking and prodding I have had and will experience for the rest of my life. 

So I had my pap smear done, sigh of relief! However my doctor informed me that I may need to return in approximately two weeks time for a repeat pap smear as my cervix was facing downward and he was unsure if he was able to get a good sample for testing.  You can imagine how annoyed I was about this and had my fingers crossed that I didn't need a repeat pap smear and that they had a good sample and everything was all fine, like it always has been. 

Sometime over the next week I received a call from my GP saying he needed to see me to discuss my pap smear results.  Not the call you expect to hear.  I figured that he just needed to do a repeat pap smear so I was dreading my appointment.  I see my GP and he explains to me that he has received my results and that he does not need to perform a second pap smear (Yay!!! Jumping for joy inside).  However, he goes on to tell me that the results have come back saying "possible high grade glandular lesion" and that I need to see a gynaecologist to have further testing.  I was fine about this as I have seen a gynaecologist previously and have many friends who have had minor gynaecological problems so I didn't think it would be anything major.  I asked my GP if the results indicated cancer.  He said they didn't but rather indicated abnormal cells and that those cells can easily go back to being normal.  He also told me that a pap smear is not 100% which was why I needed to have further tests.

I arrive at my gynaecologist appointment, just wanting some more answers.  I was really nervous actually, but trying my best to remain positive and not think the worst.  I remember Mum telling me that lots of people have abnormal pap smears and that it would be fine and nothing I should be worrying about.  I knew I needed further tests, but I just thought it would be a repeat pap smear, just by a gynaecologist (someone who specialises in the female reproductive system).  How wrong I was.  My gynaecologist performed a colposcopy (a colposcope is used to look at your cervix and vagina which illuminates and magnifies tissue to detect abnormalities).  This was a horrible experience! I had to sit in one of those chairs with foot rests, like you see on the movies.  I always felt really nervous and uncomfortable having someone inspect my vagina so this time was no different.  I had a biopsy taken from my cervix as well as other swabs and samples.  I remember getting a hot flush run through my body and feeling light headed during the procedure, didn't feel very well at all.  I had to get my parents to come and get me and my car home.   

Afterwards my gynaecologist further explained what a high grade glandular lesion was and depending whether it was confirmed or not what my options would be.  I was feeling quite nervous and was freaking out at this stage as she had explained to me that I may need to have a portion of my cervix removed (cone biopsy) for further testing and that this could potentially cause me some difficulties during pregnancy.  It was such a long week waiting for results.  You have every scenario running through your head and It was so hard to try and block everything out and get on with life.  About a week later I went and saw my gynaecologist for the results.  Mum came with me to the appointment as I wanted her there with me for support and to understand what was going on ( also so I didn't have to come home and explain it to her).  She has been my rock and main support ever since, attending all doctors appointments and hospital visits (thank you Mum).  My results confirmed I had a high grade glandular lesion and that I needed to have a cone biopsy performed to determine the diagnosis.  An appointment had already been made with a gynaecological oncologist (Dr N) and my gynaecologist had already discussed my situation with him.  I freaked out! I knew that oncologists specialise in treating cancer, so I was horrified to think that I was having to see an oncologist and that I might have cancer.  I remember going home and crying and just feeling really sad and upset about everything thus far. 

Seeing the Oncologist

I went to my appointment and met Dr N.  He went through my test results so far and performed a further colposcopy.  I was beginning to realise that I was going to have my vagina inspected at every appointment (lucky me) and quickly had to get over it.  Dr N told me that there was an area of my cervix that "didn't look right" and he was concerned about it and wanted to check it out further via cone biopsy.  He booked me in for surgery the following week at The Wesley Hospital (WH).  I went home that afternoon and called my health insurance provider to see if they would cover any of the costs.  I was told they wouldn't because I didn't have gynaecological cover, even though I had hospital cover.  I was really frustrated because I didn't think that was something I needed to have until later in life when I wanted to have children.  So they were no help whatsoever.  I then called WH to find out the costs of surgery.  I was told that it would be over $2,000 in hospital fees for day surgery plus anaesthetist and surgeon fees. WHOA!!! I got off the phone and burst into tears when I told Mum and Dad.  I knew I needed the surgery and didn't have a choice about getting it done, but I just had no money to cover the fees.  I was 23 years old with no savings and was unable to pay for my own healthcare needs and look after myself.  I was so upset.  Mum told me not to worry about money, but I just couldn't help it.  I didn't want the extra stress of having to pay back my parents my medical expenses and there was no way I was just going to let them pay for it.  They have already spent so much money on my healthcare over the years and it just wasn't happening again! It was really difficult for me to accept that I was 23 years old, living out of home and still so heavily reliant on my parents to support me.  I called Dr N's rooms straight away and told them I couldn't afford to have the surgery done at WH.  I was unable to talk and just burst into tears.  Luckily Mum was next to me and took the phone and was able to speak for me.  I was so embarrassed and felt so sad that I couldn't afford to look after myself.  A few days later Mum received a call from Dr N and he had managed to book me into the Royal Brisbane & Women's Hospital (RBWH) as a public patient.  Phew! This was such a relief and it felt like a hugh weight had been lifted from my shoulders and I am so thankful.  I thought I would mention that I am still receiving the best possible care even though I am being seen as a public patient.  Dr N is actually the Director of gynaecological oncology at RBWH and I have had many nurses and medical professionals tell me I am in the very best hands!

Surgery

I arrived at RBWH and was directed to the day surgery ward where I met a nurse who went through everything with me and provided me with my surgery clothes.  You got to love the “one size fits all” disposable underwear haha!!! It was then time for me to just sit and wait until I was called into theatre.  I had seen my anaesthetist and other doctors and signed a consent form.  I could tell they felt nervous when they said, we need you to sign a consent form, do you know what this is? yes I do.  I have studied health care law (I know exactly what this is for ... saving their ass, that’s what).  One of the biggest risks that scared me was them accidentally perforating my uterus and needing further surgery.    Soon after it was time for me to de-gown and hop into bed wearing only my lovely backless theatre gown, oversized disposable underwear, booties and hairnet.  Babe alert that’s for sure! As I was rolled into a room just outside theatre I could hear the dreaded heart monitor from a patient in theatre …. Beep … Beep … Beep … Beep.  I started getting really nervous and anxious.  This was it, there was no turning back.  I met a further anaesthetist who attempted to put an IV cannulation into my arm so they could administer the anaesthetic.  FAILED ATTEMPT! My left hand was hurting so much and a massive bruise had already began to appear (this lasted for 2 weeks).  He then got another anaesthetist to try and put the cannula in.  I was jabbed 4 times in total before they finally got one in.  My veins don’t like needles at the best of times, but even more so when I have being fasting and my body is dehydrated! After the IV was in, I then waited a few more minutes and the nurses and doctors who would be assisting my surgery introduced themselves to me.  I then met with Dr N who I hardly recognised (all dressed up in his green theatre clothes and cap).  He looked at my file and touched my leg and told me that everything would be okay. I felt slightly calmer but I had tears in my eyes and was fighting them back, I was so nervous and anxious.  I just wanted it to be done and over.  Next thing I was being wheeled in through the doors and the anaesthetic had began to commence.  Everything had started to slow down around me and I could see all these people but I was struggling to keep my eyes open.  I remember hearing the people around me say One, Two Three and they lifted me off my bed and onto the operating table and that was the last thing I remember.

When I woke up I was feeling very drowsy.  I remember seeing a young female nurse sitting next to my bed starring at me constantly monitoring and checking me.  She took off my oxygen mask and I continued to rest.  I was then transferred to the recovery room.  I felt like I was fighting to wake up, my body just didn’t want to.  I felt really sore (more sore than I had expected).  I was given more pain relief and some anti-nausea medication.  I was struggling to sit up and felt dizzy and sick it was horrible.  Eventually I managed to get dressed and went and sat in a chair where I was given something to eat and drink.  I couldn’t wait to get home to Mum’s place and go to bed and just be comfortable.  I managed to eat some biscuits, but not long after I vomited it all up.  I was really pale and just felt really sick! Sometime later Mum was called to come and collect me and I was able to go home.  A male nurse pushed me in a wheelchair to Mum’s car, thankfully as I don’t think I would have been able to walk through the hospital otherwise.  Once I got up out of the wheelchair to get into the car I started vomiting again.  It was horrible! The drive home was okay, and when I got to Mum's I just went straight to bed.  I woke a few hours later and was starving (no wonder, it had been 20 hours since I had eaten something and kept it down).  I remember getting up out of bed and feeling really dizzy and sick (presumably from the anaesthetic) and rushing to the toilet and vomiting again.  I felt like I was going to die, it was horrible.  I just felt so helpless and sore and just didn’t know what I could do to ease the pain.  From then on I went to bed with a bucket next to my bed.  I stayed in bed for a good three days without getting out. I was exhausted and just felt really sick everytime I got up.  After that I was so slow and was still quite sore and just had to take it very easy for the next few days.  After about a week I was mostly back to myself and able to return to work.

I had to see my GP some 4 days later, I thought I had an infection as my pain was getting worse.  I got some antibiotics which seemed to help.  My GP was aware of everything that had happened and was receiving correspondence from the specialists.  I began to explain to him what I had been feeling and I started to cry (again).  He told me that I have been through a lot lately and that it was unusual to see this in someone my age, usually people were in their late 20's early 30's.  Oh great! thanks alot! Way to make me feel better about my situation.  It was at this point that I lost my positivity and became really negative.  I felt like my GP knew something but didn't want to say and it was very frustrating! 

The day my life turned upside down

Approximately one week after surgery I saw Dr N for a follow up appointment and to discuss the results.  I was extremely nervous and felt so sick! I went to work in the morning to try and keep my mind occupied.  Mum and Dad picked me up from work and took me to my appointment.  Dr N asked how I was post surgery and how I was doing with everything.  We discussed my infection and that it was quite a common occurrence post cone biopsy.  Dr N discussed my results and told me he had looked at the tissue sample under microscope and told me I have cancer :(.  I felt devastated and in shock, I couldn't believe it and was hoping I would wake up and realise it had all been a dream.  He told me I have stage 1B1 adenocarcinoma of the cervix (cervical cancer).  He said I had a tumour which was 18mm x 3mm which had been removed via cone biopsy.  I just couldn't believe it.  I hadn't been sick, I hadn't felt sick and the last thing I ever expected was to have a tumour growing in my body, let alone my cervix.  I asked about my treatment options and was told I would require major surgery.  I was told that one option was to have a radical hysterectomy (removal of my cervix, surrounding tissue, upper vagina and uterus).  I immediately burst into tears.  I knew that a hysterectomy meant no children and I just was so sad.  Devastation is the only word to describe how I felt at this time.  I love children and having my own one day was something I have been really looking forward to.  I was then told of another surgery option.  Dr N could perform a radical trachelectomy with pelvic lymhadenectomy (the same as the hysterectomy except I get to keep my uterus... YAY! plus removal of lymph nodes in the pelvic region).  I was then told that this operation is still in the experimental stages and that there was no guarantee this would work.  Dr N told me that he had performed the surgery successfully on 10 women previously and 6 of those women have gone on to have their own children, so it was some positive news.  I was told I needed a PET/CT Scan to see if the cancer had spread.  I wouldn't be able to know my exact treatment until I had this scan.  The remainder of my appointment was just a blur, I was listening but felt numb and just didn't take much in (lucky Mum was there).  I was so upset and couldn't fight back the tears. 

The drive home sucked all I did was cry.  I was supposed to go to uni that afternoon but honestly uni was the last place I wanted to be.  I didn’t want to see anyone or face anyone I just felt really gloomy.  I had started googling my treatment options just trying to get my head around it all.  I found out that the radical tracelectomy had been around for approximately 10 years, but was not a very common procedure.  All the literature said that radical hysterectomy was the treatment option for my diagnosis.  It was so hard for me to understand it all.  From everything I had read I was of the understanding that I would go into hospital for the trachelectomy, but once they were operating, if they had to remove my uterus, they would.   I was so stressed out and I felt like I was potentially being robbed of the right to have my own children.  I was so upset and devastated.  It was a Thursday when I found out, and I had booked in my PET Scan for the Monday.  I went out on the Friday night and got absolutely blind just to forget about everything going on in my life.  I couldn’t believe that this was happening to me.  I was only 23 years old and 2012 was supposed to be my year of exciting things with my dreams coming true.  Graduation was mid year and that was something I had been looking forward to for the past 5 ½ years.  So it was a really tough time for me and I kept asking myself why me? I had a breakdown on the Saturday night.  I was so hungover from the night before and feeling very sorry for myself.  I had started to research my surgery again and got really upset.  Thankfully Jess drove me to my mums house where I stayed the night and just cried and cried.  It was the first time in a long time that I had cuddled into mum for an extended period of time and cried whilst she comforted me and told me everything would be okay! The next few days were really gloomy and I was so frustrated and angry about my situation and really sad.  I was so anxious for my PET Scan.  On the Sunday I had to have a special diet of no sugar and low carbohydrates and fasting from midnight.  Lunch consisted of chicken breast with broccoli and cauliflower and some raw mushrooms.  Dinner was 2x soft boiled eggs and some chicken.  To say I was starving was an understatement.  I went to bed hungry and struggled to sleep because of the nerves.  I was used to not sleeping very well by this point mind you.  Mum picked me up Monday morning and we attended Mater Hospital for my PET Scan.  I went in and had another IV cannula put into my hand.  I told the nurse straight away that I have troubles with needles and my veins dissapear when I fast.  But STILL she insisted on giving it a go anyway.  Failed miserably! Yes it hurt and yes she tried AGAIN thinking she could get it.  It’s a painful experience when they don’t get the IV in correctly and are pushing and poking to hope for the best.  After her second failed attempt she went and got someone else to do it.  UM are you kidding ... I told you I am a difficult person.  I wish they would listen to me and get the good people to put the IV in the first time.  He got it first attempt with minimal pain which was good.  For the next 45 minutes I had to lie in a bed with minimal movement whilst radioactive material was injected into my body.  At least there was a tv in the room!   After 45 minutes it was time for me to go have my scan.  I was to have a PET Scan and also a CT Scan.  I had had a CT scan previously so I knew what to expect.  I lied on a bed and had to lie still whilst I was inserted in and out of a white tunnel while images of my body were put together.  They performed the PET scan first which took approximately 20 minutes followed by the CT scan which was much quicker.  After the PET Scan another dye was injected into my veins.  This gave me a funny metallic taste in my mouth and it felt like a heatwave had came over my body.  It also felt like I was peeing my pants ...  GROSS! After a few minutes my stomach began to burn.  I didn’t know what was going on.  I hadn’t experienced this pain from a CT scan previously.  After my scan I was put in another waiting room whilst Mum was called to come and collect me and I was given a sandwich and a glass of water (best ever)! After I had eaten the burning pain in my stomach had gone away and I felt much better.  Afterwards Mum and I went to another café and I had a further toasted sandwich with an ice coffee, yum!  It was so good to eat again.  Then the waiting game started again!

My first bit of good news

A few days later I had another appointment with Dr N to discuss the results of my PET/CT Scan. I had been hoping for good news all week.  I was so stressed out and had been thinking the worst and couldn't imagine what I would do if I was told it had spread.  I had so many questions to be answered and was just feeling very unsure about everything.  The first thing Dr N said to me was that we have good news and the PET/CT scan came back all clear.  YAY!!! the cancer hadn't spread.  What a relief that was, Mum and I both had a smile from ear to ear.  The next bit of good news was that because my tumour was less than 2cm Dr N was able to perform the radical trachelectomy and he was confident he would get a 1cm clear margin of healthy tissue and that I would be able to keep my uterus. Double YAY!!! I was so excited and felt like another huge weight had been lifted off my shoulders.  I had been so stressed out the past week about potentially never having my own children and whether I needed to consider having my eggs frozen etc.  There was also the stress of the cost of everything and again the fact that I have no money.  I asked Dr N about my ovaries and he said I will be keeping them and they will continue to produce eggs (what a relief).  So even if I need to have my uterus removed at some stage down the track, I will still have my eggs to create my own children, even if I am unable to carry them.  Further good news is that at this stage I do not require chemotherapy!

The next step

I go into hospital in 4 weeks to have my operation and hopefully be rid of this cancer for ever.  I am extremely nervous about my recovery and how everything is going to go.  I am trying to remain very positive about everything and I feel like there are so many positives to take out of my situation.  I know that it is only the beginning and that I have so much to get through over the next few years, but I know I am tough and I am determined to beat this.  If anything, this whole experience is going to make me become a better person.  I am very passionate about educating people about cervical cancer, in particular women and ensuring they get their regular check ups! This blog is a way of expressing my feelings and will help me to get through the next few months. 

Thank you for taking the time to read my story! I really appreciate all the support I have been receiving, it really does make a difference :)

To keep up to date with Chelsea's journey you can follow her blog here: http://mylifemystorymyexperience-chelsea.blogspot.com.au/?spref=fb&fwcc=1&fwcl=1&fwl

Tania's Story

A short time ago, cervical cancer was consuming my life. Three (3) years after a diagnosis of HPV and cancerous cells on my cervix I was at the point of my life where I didn’t know what to do with myself anymore.  I didn’t go out.  My passion for life was non-existent.  Socialising with friends and family stopped.  I ignored their phone calls (of support).  I was  constantly on the brink of tears, had no energy and was paralysed with fear and anxiety.  What did I do to deserve this?

Six (6) months on, I had yet another Gynaecologist appointment to go to.  I didn’t want to get out of bed.  But I had to face the doctor to get the results of my recent cancerous cells screening.

Not long before this appointment, I made the choice to take a big step in my life, to grab hold of the reins and charge forward!  I was tired of feeling paralysed and helpless. Suddenly in that moment of decision came clarity and with it a resolve and a courage I never realised I had.  I looked at the relationship I had with myself and the direction I actually wanted to be moving in.  I had my whole life ahead of me, no matter what that time frame was.

The biggest catalysts for this change in me was attending a self development / self-awareness course.  As terrifying as it seemed, deciding to put myself out there and leaving my comfort zone was my first step!

The course helped me to face and let go of huge challenges that I had been holding in and onto for a long time.  I learnt more about myself than I had ever known before.  I felt free, alive, full of hope and vital again!  My passion and drive came back; bigger than ever before.  I listened to my inner voice. I learnt to live in the now and to go after what I wanted in my life.  .....to not only survive, but to thrive in life!

I decided to train and  become a coach myself.  I now work with people with similar illnesses, helping them to choose and live life with passion and purpose.  As a Coach  live and joyfully share how it is possible for others to live an inspired life too.  I’ve finally found my passion, my spark, my purpose for living.  I’ve resolved many issues in my life and I finally feel at peace with my own self

Last year I completed my first ever City2Surf run and raised $1300 for Australia Cervical Cancer Foundation.  By deciding on life, being real and bearing my soul around my experience, I gained a massive amount of support from a diverse range of people and as a result have also been able to help others affected by Cervical Cancer, both directly and indirectly.

Prior to that doctor’s appointment that I didn’t want to leave my bed for, I went through a panic stage.  When I got to the doctor, I discovered the cancerous cells screening had come back clear! YES! That’s right.  After three and a half (3½) years!  What a relief....I felt so grateful for a new chance at life, something inside of me shifted and I chose to throw myself back out in the world and start to really live!

My illness was my greatest lesson in life, forcing me to go within so I could make the changes required to live a healthy and fulfilling life. 

I survived cervical cancer not only with regular checks and treatment with my doctor but also through:
• My commitment to get back in the ‘drivers seat’ of my life.
• Becoming real and honest with myself.
• Gaining the skills and support of a coach to release and let go of negative emotions that did not serve me.
• A renewed focus on what I want in my life.
• Gaining the knowledge to improve my direct environment.
• Taking positive action to make a difference in my life and those around me, leading to true  empowerment in my life!

Janet’s Story, (not her real name)

When you were first diagnosed with cervical cancer?
I was first diagnosed in October 2008. This was 2.5 years after becoming sexuality active. It was also 6 months after I had a normal pap smear.

How did you feel when you were given the news?
Very shocked and stunned.

Did the doctor refer you to any support facilities?
Doctor did not refer me to any support facilities at all.
 
Did you have enough information about cervical cancer and its treatment and prevention?
I was very naive about anything to do with cervical cancer. I was told that I had HPV but not told that it was HPV that caused cervical cancer. I wasn’t even told what HPV was. I found out everything I needed to know by searching the net.  
 

What are/were the positive aspects of your diagnosis/treatment?
I had a complete hysterectomy.  I was 51 so I didn’t need the parts that were going to be removed. The positive aspect was that I found out the cause of previous complications including an earlier miscarriage.

What are/were the negative aspects of your diagnosis/treatment?
These were that I had no family support here as I had only moved to my current town a few months before. I was completely alone.

Since also realising I’ve been going through  menopause I asked for help and I’ve been in counselling ever since. Before I started in counselling I thought I was going crazy. Counselling was a life saver and I mean that literally.
 
What could the Australian Cervical Cancer Foundation do to help you?  (e.g. – information, referral to counsellors, practical assistance, helping you feel like you are not alone)
It would have been helpful if I had known about the ACCF when I was first diagnosed. I am now cancer free.
 
Is there anything else you would like to tell us and others – your thoughts, insights?
I recommend to all to be very religious in having your pap smears. I think that instead of every 2 years, they should be at least every year. Listen to your body and really get to know it. So if anything happens you will know if it’s normal or not. This goes for anything not just cervical cancer.

I also feel that when a woman is diagnosed her GP or gyno should refer her to an appropriate support organisation such as ACCF so that she can get all the info and help that she needs. I just wish mine had done it.

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Editor’s note – this is ‘Janet’s ‘story with her thoughts and views.  ACCF advises that if you have any concerns about your health you talk to your doctor for advice and treatment as soon as possible.