My Cervical Cancer Survival Story - why you mustn't ignore your smear reminder

My English A-Level teacher always told me that to structure an essay properly you should tell the marker what you are going to say, tell them and then tell them what you said. This is a good way to achieve that sought after A grade. It's also a good way of ensuring that people hear your message even if they don’t read your entire essay.

So before I tell you my story I am going to relay my message to you, please, please, please go for your smear test when it is due. Don't ignore those irritating reminders that keep landing on your doorstep. I know you are incredibly busy, I know you are juggling so many things every day but smear tests are absolutely essential...they might just save your life.

There's no easy way to be told you have cancer...

On 15 January 2018 at approximately 10:20am I was diagnosed with cervical cancer. Having told my other half that he was wasting his time coming with me to my appointment, I sat there in a state of disbelief. I hate crying and yet the tears were rolling down my cheeks and I was powerless to stop them.

I can’t put into words what it feels like to be told you have cancer…all I really remember is that those words literally opened a floodgate of emotions, thoughts and questions that I was unable to control....

Was I going to die?

If I died, what was going to happen to my kids?

How would my family cope?

Is this a mistake? How could I possibly have cervical cancer?

And the list goes on….

I recall sitting in the consultant's room, whilst he explained that the results of my recent biopsy revealed that I had a small malignant tumour. I remember my husband, Rafi, gripping my hands and the tears rolling down my face. It was all incredibly surreal. In that moment it was as though I was an observer looking in on a conversation. This couldn’t really be happening to me…could it?

Eventually, the realization sinks in that this conversation is real….it's actually happening. I have cancer. Then it's all about information, understanding the next steps, what the treatment plan will be.

After having it explained to me about 4 times, it seemed relatively straightforward:

(1) MRI to check for spread;

(2) Hysterectomy; and

(3) Examination of pelvic lymph nodes to check for spread on a cellular level.

In those first minutes, hours and days after my diagnosis, it felt as if my world was spiralling out of control and I was totally powerless to stop it. I desperately tried to continue as normal, running around after my kids, going to work, cooking. It may sound strange but in reality this was my futile attempt at retaining some form of control over my life.

However, I couldn't escape the inescapable, the truth….I had cancer and I had to have life-changing surgery to eradicate the cancer from my body and ensure that I would survive to see my kids grow up.

Telling family and close friends was incredibly hard. Thank goodness my family has been relatively sheltered from the pain and destruction that cancer can bring. I told my parents and a couple of close friends immediately and then Rafi and I waited to tell the rest of our family and friends until we had a clearer idea about what we were dealing with and what the treatment plan would be.

On the same day as my diagnosis, I had an MRI scan and received the results by late afternoon confirming that I was "lucky" and there was no obvious mass anywhere else. The following evening, we met with my oncologist and pencilled in a date for my surgery….Monday 5 February 2018.

It was at this point that we felt ready to tell close family and a small number of friends...but even then I felt reluctant to share my news widely. I had to wait 3 weeks for the surgery (I needed to heal after the biopsy) and because I felt physically fine I saw no reason to tell many people. I knew I would have to tell more people before I went into hospital but wanted to wait until a few days before. I wanted to feel "normal", to feel "well" for as long as possible.

Coming to terms with a cancer diagnosis

In those first couple of weeks, I would burst into tears at the slightest thing. I would be sitting at my desk, in my open-plan office at work distracted from my reality when suddenly the truth would hit me again and the tears would begin to flow and I would promptly try and escape to a meeting room.
One Thursday night, I was cooking in preparation for hosting friends for lunch that weekend, when I got a text from an old friend inviting my family for lunch in a few weeks. Ordinarily, I would have immediately accepted; however, the invitation was for 5 days after my surgery and I knew I wouldn't be well enough to attend. I realised I couldn't hide from the truth. So, I responded revealing why we couldn't come. I remember finding it so difficult to type that message; I could barely see the phone through the tears rolling down my face. After eventually pressing send, I went back to peeling apples for the crumble I was making, tears continuing to roll.

Looking back, I am not sure exactly what I was crying for....was I crying because I was about to lose my ability to reproduce? Possibly…. but on a rational level I am 37 and have been blessed with three healthy gorgeous boys and never had any intention of having more kids.

On reflection, I think my tears were those of sadness at the realisation of my own mortality. I was a strong independent woman, an incredibly busy working mother who often joked to her husband and friends about how she felt like a machine most days.....and yet I wasn't a machine....or at least the machine wasn't unbreakable....the machine was vulnerable…and its vulnerability felt very exposed.

And it's not like I wasn't already living with a higher than normal risk of contracting cancer. I was diagnosed with ulcerative colitis when I was 16 and remember turning 36 and being told by my gastroenterologist that since I had had ulcerative colitis for 20 years my risk of getting bowel cancer was increased by 20%. I had yearly tests to check my colon and used to drive Rafi and my parents mad by joking that I was having my "cancer check". However, I don't think I ever believed I would get bowel cancer…because...I'm strong, I'm fit and healthy and I don't have time for cancer.

Yet  here I was, seemingly fit and healthy….with cancer.....so maybe I wasn't so strong....and I wasn't so machine-like....maybe I was just as vulnerable as everyone else.

Dealing with anger

I also remember overwhelming feelings of anger and disbelief. I had always thought I was low-risk. Therefore, how could I possibly have cervical cancer?

Until my diagnosis, I did not know a huge amount about cervical cancer. I remembered the press coverage in 2009 when Jade Goody died of cervical cancer aged 27. However, I also remember being led to believe that cervical cancer only really affects promiscuous women who are sexually active from a young age….it's not something that a "good Jewish girl" who has been married since she was 22 needs to worry about.

When I was 25, prior to my first smear test, I recall talking to my mum and being told that I needn’t worry about smears – they are annoying but cervical cancer simply wasn’t something I needed to worry about, I was very low risk.

So when I first got diagnosed I was angry and wanted someone to explain how at 37, having been married for over 14 years I could possibly have cervical cancer.

The truth….I had cervical cancer because low risk doesn’t mean no risk. Until recently I was as ignorant as many others in mistakenly believing that cervical cancer largely affects promiscuous women, it doesn't.

Having read a huge amount about cervical cancer over the past three months or so, I am now aware that there are a variety of reasons why a woman may be exposed to a higher risk of cervical cancer.

Without wanting my story to become a science lesson, nearly all cervical cancer cases are caused by a virus called HPV (human papillomavirus). HPV is an incredibly common virus transmitted through skin to skin contact in the genital area. There are more than 100 different types of HPV and it is thought that at least 80% of people will be infected with some type of HPV in their lifetime. Around 20 types of HPV are associated with the development of cancer and are known as high risk HPV.

For the vast majority of women when they catch HPV, their immune system will attack the virus and it will be eliminated from their bodies. In all likelihood, these women will never know they had HPV. However, a small percentage of women will be unable to clear their HPV infection naturally and may go on to develop abnormalities in their cervix, which if left untreated may lead to cervical cancer. It is estimated that it can take as long as 15 years (possibly even longer) for an HPV infection to develop into cervical cancer.

I was one of that small percentage of women - my body let me down and didn't clear the HPV in time. When I started researching into cervical cancer, I learnt that women with impaired immune systems have a higher risk of cervical cancer due to being less likely to clear an HPV infection. Given my medical history of ulcerative colitis, it is highly likely that my compromised immune system was simply unable to clear the HPV infection. My colitis was particularly bad whilst I was having children and I took immunosuppressant drugs for over 5 years – during this time my body may have provided a perfect sanctuary for an HPV infection.

Indeed, Jo's Trust - the UK's only dedicated cervical cancer charity advocates that women with compromised immune systems should have annual smear tests, due to the risk of having a persistent HPV infection and developing cervical cancer.

Tears and anger to acceptance

One morning, a week or so after my diagnosis, I woke up feeling an overwhelming sense of calm and acceptance. Somehow I had cried my tears and was at peace with my new reality. And to be clear it wasn't a dismal reality.

Yes, I had to have major surgery in a week or so, but the probability of needing further treatment after the surgery was low. The cancer had been caught at an early stage and the prognosis was excellent - in fact the survival rate after 5 years was 97%. So yes, I had been dealt a crappy card but it could have been worse....much, much worse.

At that point, Penny "the Machine" resurfaced. I set about filling my freezer, making arrangements for the kids for the week of my operation when I would be in hospital and ensuring that they would be suitably entertained the following week, when it was half-term and I wouldn’t be well enough to look after 3 very energetic boys. My focus became maintaining a sense of normality for as long as possible.

It's fair to say Penny "the Machine" has remained since that morning and is the person sitting here today telling this story.

I've waited until now to speak out about my cancer because I wanted to wait until I had the results of my surgery. Thank goodness, the doctors are confident that all traces of the cancer have been removed from my body and that no further treatment is needed. I am now 4 ½ weeks post-surgery and am on my way to a full recovery. My recovery is slower than I had hoped – I had been warned it would take 6 weeks to be back to normal and for some reason (unsurprising to those who know me) I had naively thought I would be different and would be back to normal in 3/4 weeks at most.  I now expect it will take me 6 weeks but I am getting there. More importantly I will make a full recovery and I will be back to running around like a machine soon.

The importance of having a smear test

So, despite being a very private person, why have I chosen to tell you this story, my story, my cervical cancer journey?

….because I want to raise awareness of the UK's cervical screening programme, which in all probability has saved my life.

Up until now, I have just told you about the last couple of months post diagnosis. I have not explained how I first realised the unthinkable...that I might have cancer.

In November 2016, I went for my routine 3-yearly smear test. I absolutely hated having them done. I always found them quite uncomfortable and undignified. Nevertheless, I was fairly good at responding to the dreaded invite in a timely fashion and I was only a couple of months late. I went for the test and promptly forgot about it.

Approximately three weeks later a letter arrived explaining that the sample tested was found to have borderline abnormalities and high risk HPV. Consequently, I would need to have an internal examination called a colposcopy to examine the lining of my cervix. The letter contained a useful leaflet explaining what a colposcopy is and reassuring readers that having an abnormal smear does not mean that you have cancer. I was relatively stressed about the results, but my mum (a retired GP) had reassured me that it was nothing to worry about and that having only borderline changes was highly unlikely to be anything serious.

I waited around a month for the colposcopy, which took place at Barnet General Hospital. The nurses that I met were all amazing and really supportive and reassuring. The colposcopy didn't show any visible abnormalities. Although I would need to have yearly smears until they tested normal again, I was told not to worry because my cervix looked perfectly healthy.

I left Barnet hospital, breathing a huge sigh of relief that I had been worrying about nothing and promptly forgot about the whole thing. 

A year goes by pretty quickly when you are busy juggling your kids' social lives, job and home. So, when I received the reminder for my next smear in November 2017, it was just another irritating errand that needed to be crammed into my weekly Thursday afternoon off work. I duly went to Barnet General for the smear and then simply ticked it off my ever-expanding to-do list.

On Friday 22 December 2017 at approximately 2pm, when the whole country was about to shut down for 4 days for Christmas, I retrieved the post and found a letter that would dramatically change the next 2 months of my life.

I was finishing preparing supper before the start of the Jewish Sabbath, when I tore the letter open to read that my latest smear results showed that I had "severe dyskariosis" and that I needed a colposcopy that would take place on 17 January 2018. And that was it folks….no reassuring words about the low risk of having cancer…no explanatory leaflet…nothing.

To say I was in a blind panic is an understatement. I literally flew upstairs and thrust the letter under Rafi's nose. I called my mum who tried to reassure me that I didn't have cancer. In her opinion if I had cancer the letter would have said I had something else....dyskariosis isn't cancer - I just had high-grade abnormalities...all would be fine.

However, I knew she was worried because Rafi said she sounded "measured". Ever since I was a child, my mum has dismissed almost every ailment (aside from ulcerative colitis) as minor - usually just requiring paracetamol and a good nights' sleep. When I was 7 she even made me wait 24 hours before having my broken arm x-rayed – "lets see how it is in the morning…." she had said to my dad. So being "measured" was not a positive sign.

Rafi and I quickly decided we couldn't wait a month to find out what was wrong with me. I set about contacting my insurance company and arranging to see someone privately. Suffice it to say that trying to find a gynaecologist registered with my insurance company who could see me quickly over the New Year period was not an easy task. Eventually, I managed to organise an appointment for Tuesday 2 January, following which I had a biopsy on Friday 5 January and the rest of the story has already been told.

So you see….if I hadn’t gone for the smear in November 2016 and the follow-up smear a year later, it is highly probable that my cancer would have remain undiagnosed and that my tumour would still be growing, invading more healthy tissue in my body. Cervical cancer is referred to as the silent cancer, because women often have no symptoms until the cancer is at a more advanced stage. Aside from the abnormal smear results there was absolutely nothing to indicate that I had cancer – I had NO symptoms.

Ultimately, I was lucky – my cancer was found before it had spread beyond the cervix and when it could be treated surgically, without the need for chemotherapy or radiotherapy. Although there are risks associated with surgery and the removal of my pelvic lymph nodes means I have a 20% risk of developing lymphedema and suffering swelling in my legs, I believe this is a small price to pay for beating cancer.

Sadly many women are not as lucky…..their battle with cervical cancer will be harder and will involve extensive chemotherapy and radiotherapy.

Studies indicate that the UK's cervical screening programme saves around 5000 lives a year. That's 100,000 women over the past 20 years since the screening programme was introduced. Regular cervical cancer screening provides a high degree of protection again developing cervical cancer because it identifies abnormal cells in the cervix, which can be treated before they develop into cancer. It is estimated that early detection and treatment through cervical screening can prevent up to 75% of cervical cancers from developing in the UK. 

My final message to you….

So please ladies, do not ignore your smear reminder....book your smear test. You may consider yourself to be low risk for developing cervical cancer, but low risk doesn't mean no risk. Risks are all about statistics. Sadly there is always someone who defies the normal trend, who is an exception, who gets cancer despite being low risk.

 

Please remain low risk and get your smear done on time – not going for your smear is actually one of the biggest risk factors for developing cervical cancer.