Less than four months ago, I received a phone call that would change my life forever. I remember the day like it was yesterday.
It was a Thursday, just before Easter. A nurse phoned to say that they had received the results from my latest cervical smear test and that I needed to go into the clinic that same afternoon. The doctor wanted to discuss the results with me face-to- face. An alarm bell went off so I asked for more information.
The nurse advised that she was unable to give me any information over the phone, however, my results had shown that I had abnormal cells.
That my appointment with my doctor? Well, I guess you could say it changed my life.
It also made me realise how little I knew about the New Zealand health system. And if there are any women out there in the same boat as me, then they’ll want to know more. That’s why I’ve put this list together of the five pieces of advice I wish knew if I was told I had cervical cancer.
I want other women to be prepared because let’s face it… I wasn’t.
#1 Take a support person
I had asked my Dad to come with me to the doctors to look after my one-year- old daughter. During my appointment, he stayed in the waiting room.
As soon as the doctor said “you have adenocarcinoma insitu, the early stages of cancer,” I should have stopped right there and asked my Dad to attend the rest of the appointment with me.
Why? Because almost everything the doctor said after that went in one ear and out there other. My mind raced. All I could think was;
“I’m 31-years- old and now I have cancer”.
“How bad was it?”
“Surely I was going to be okay?”
I sat there and showed no emotion.
I remember nodding as my doctor continued to tell me how sorry she was. Truthfully? Inside I was a wreck. My emotions took over and I was unable to digest any further information.
All I knew was that my doctor had put through an urgent referral to a specialist. She explained that I would require a colposcopy (which is where the specialist would take a biopsy from my cervix). This would then be tested and graded to find out what stage I was at.
That was it.
I walked out the door, with the news that I had cervical cancer weighing on my shoulders. It wasn’t until I was in the car that the devastation hit me. That’s when the tears came and the phone call I dreaded most… having to break the news to my husband.
#2 Remember people react differently
During the car ride home, I cried, a lot.
I was lucky to have my Dad there to drive because quite frankly, I don’t think I would have been able to.
Once I got home I felt much better. I needed some time out to be alone and to digest the enormity of the news that had just been sprung on me. What I didn’t expect was that I would deal with the news better than my family would. In some strange way, I knew I would be okay. My husband on the other hand? He wanted more information right then and there. He was devastated.
He didn’t want to tell anyone about our news, whereas I told everyone. I felt that by being honest and sharing my journey, not only would we have support from our loved ones, we would also raise awareness for cervical cancer.
#3 Ask for contact information
As the weeks went by, I waited patiently for my colposcopy appointment.
After attending the first appointment on my own, I realised I needed to take someone with me this time.
I knew I was strong, but I needed support and I needed to make sure I understood all of the information. The colposcopy appointment took place approximately three weeks after my initial consultation. Luckily for me, Dad assured he would come with me to meet with the specialist. After a relatively painless procedure (aside from a bit of cramping), I was advised that the biopsy would be sent off to the laboratory for testing. It would take approximately two weeks for the results to come back, and I would be sent a letter with the results.
Listen: Samuel Johnson on spending time with loved ones with cancer. Post continues after audio....
Here’s the part I didn’t realise.
That letter wouldn’t turn up for close to one month. Don’t get me wrong, I tried to get the results myself… to the point where I was calling the clinic every other day.
Had I have been proactive, I would have asked for a contact name and number during my colposcopy appointment. That way I would have had a name and a direct contact to get an update from.
It would have saved me from a lot of frustration, and I would have felt assured knowing I was in contact with someone who could get me the answers I needed.
#4 Understand that results can change
When I first heard the words “you have cancer” I locked on to that sentence. I never thought that my results could get downgraded. I always figured that the remaining tests were to figure out how far along the cancer was. Now, I understand how naive I was.
Truth be told, the news of cancer can affect everyone differently. I was in the mindset of ‘I’m going to stay positive and I’ll beat this thing.’ Turns out I did, because in the end I didn’t have cancer. I had CIN3 which are high-grade abnormal cells and if left could turn into cancer. I didn’t realise this until much further into my journey.
I was sent a letter that had the words adeno CIN3 and I figured this meant that I had cancerous cells.
Again, another mistake was not clarifying this with my GP. As I continued to share my journey, friends and acquaintances contacted me to share their own experiences. Their kindness meant the world to me. They wanted me to realise that I was not alone, and that they had gone through the same process. However, what I learnt is that even when someone says they have the same diagnosis as you, your treatment may still be different.
I realised this when a number of the women and I exchanged details about our treatment. Out of the women I spoke to, I was the only one that required a general anesthetic to have a cone biopsy. This meant that my recovery was a lot longer and I was unable to lift anything for ten days - including my one-year- old child. Remember, everyone is different, and this means that your results and treatment may be different too.
#5 Give yourself a break
Any health scare can be an emotional rollercoaster. You’re going to need some time out, even just to get to grips with the news you’ve just received.
That’s why you’re going to need some time to let all of this sink in. You’ll also need time to recover, depending on what treatment plan is in place for you. If you’re anything like me, you’ll try to wear a brave face because everyone around you will be worried for your health.
Your family will be affected too, so you’ll want to support them through this journey as they’ll feel every inch of it with you.
There will be days when you don’t want to be positive, and that’s to be expected. There were times when I cried by myself, and I knew that was okay.
Releasing your feelings is part of the process. You can’t be strong all of the time.
And if there’s one tip I can give you?
Ask questions. Write information down. If you still feel unsure, ask again.
For this is your life. Your health. Your journey. And the best person to look after your needs is you.
You are stronger than you think.
Top Comments
Interesting to hear how different doctors/ countries handle this. It seems irresponsible for them to say you had cancer straight up prior to your colposcopy. I got a letter from my GP saying I needed a face-to-face appointment ASAP, who told me I had high grade abnormality detected, then referred me to a public hospital gynaecologist. I was assured it was nothing by the doctor, that no one she'd ever sent for a follow up had anything wrong, and basically that it was impossible that it was anything serious. When I had my colposcopy appointment, before they even started they said they were scheduling me for a cone knife biopsy (removing half my cervix) under general anaesthetic a week later which is when I knew this was serious stuff. I was found to have adenocarcinoma in situ and CIN3 (both the final precursor to two different kids of cancer based on current research). I was 24 at the time of my smear and had been sexually active for 6 years (a lot of information including the pamphlet i received at my GP) out there says it takes 10 years for cervical cancer to develop - clearly not the always the case). Through the public system, from my pap smear in November, I didn't get into the clinic until March, and I didn't get my results until May.
CIN3 is also known as "carcinoma in situ". Whilst strictly defined as a pre-cancerous lesion, it can also be regarded as Stage 0 cancer - the nomenclature for CIN3 is tricky as there's overlap in the way we describe it. The take home message is that your lesion was pre-invasive (invasive cancer is Stage 1 and up), and treated appropriately, has an excellent outlook.
In Australia, we would not send results directly to the patient as common practice. You would be more likely to have a follow up appointment to get the results from your doctor.