My name is Katie. This is my story.
On the 10th May 2017 I walked out of the Day Oncology ward at Cabrini Malvern having completed 18 rounds of chemo, almost a year to the day that I received a phone call that would change my life forever. My journey is not yet over, I’m not sure once you receive a cancer diagnosis that it ever really can be, but I made it through the hardest part and life is looking pretty good right now.
My story began a couple of years prior, when like many people Angelina Jolie made me stop and think that maybe there was more to our family history of breast, ovarian and bowel cancer than just coincidence. My GP referred me on to Peter Mac, and we received the paperwork but for whatever reason it went on the back-burner. Life was busy, no-one was currently sick so there was no sense of urgency, and just like that our referral period expired. To be honest, my biggest concern was my Mum and Aunties who were in the danger zone being in their 50’s. They were all having regular screenings and so far so good.
My husband and I married in January 2016, and our plan was to start trying for a family straight away. In February, I noticed some niggling pelvic pain on my right hand side, nothing that had me too worried, and when I took a pregnancy test that came back positive I put two and two together and I booked in to see my GP right away. A blood test showed that I was not pregnant and was told that it was more than likely an early miscarriage. A week or so later I booked in to see another GP. I’d had no signs of the miscarriage and the niggling pain was still there. I hadn’t been happy with my first GP’s attitude, sort of brushing me off originally and at this point I was worried about an ectopic pregnancy. Unfortunately I didn’t get much further with the next GP either who pressed on my stomach, told me I definitely wasn’t pregnant and just to “wait” until everything returned to normal.
Once I got 4 weeks out from my first visit to the GP, still feeling the niggle and that something wasn’t quite right I made the decision to see a 3rd GP but with the aim being to simply get a referral to a Gynaecologist. I was starting to feel like maybe I was imagining things in my head, but thankfully this GP was extremely thorough and told me that she wouldn’t refer me until we’d done some further investigations into what was causing the niggle. She too thought it may be an ectopic pregnancy so sent me off for an ultrasound.
Finally, we had an answer. There was an ovarian cyst on my left ovary. I was told it was benign, nothing to worry about but that it wouldn’t go away by itself so I would have to have some minor surgery. I met with a Gynaecologist who advised that very rarely these cysts can be cancerous, so prior to the surgery we did some blood tests to check tumour markers to rule that out. I don’t know what it was, but something in my stomach had me worried. When my test results came back clear it was a huge relief.
The surgery went well and I recovered quickly. Back at work the following week I received a phone call. 20 May 2016. A day that I will never forget. It was the Gynaecologist, who told me that the pathology results had come back, and that cancer had been found inside the cyst. I was told that it was extremely rare, so I was being referred to a Gynaecological Oncologist but that it would also have to go in front of a multi-disciplinary team. While he reassured me it looked to be very early and not to worry, I drove straight home from work, jumped on to Google (the WORST thing you can do when you don’t have all of the correct info) and spent that whole weekend convinced that I was going to die.
I managed to compose myself after a few days, and then met with the Gynaecologist Oncologist. That made it all so real, and despite the fact that she was so lovely, I was numb. We spoke about surgery – major surgery with an incision all the way down my stomach. And then chemo…oh my god, is this really happening?!? To top it all off we would need to do IVF to freeze embryo’s as there may be a need for a hysterectomy. It was a lot to take in.
After more waiting and more multi-disciplinary reviews the decision was made that I would need more surgery, removal of my left ovary and fallopian tube. A PET scan prior to the surgery was negative. No spread thank goodness. The surgery again went well and I bounced back quickly. Unfortunately a week later I received another dreaded phone call. The cancer had been found inside my ovary.
Apocrine Adenocarcinoma arising from a mature teratoma was the official diagnosis. Everyone was stumped. While cancer occurred rarely in these cysts, this type of cancer was even more rare. A sweat gland cancer, the only record of one other person in the world who had this diagnosis was in Japan in 1993. And there was no record of what happened to her. At this point chemo was now on the table, and I was referred on to an Oncologist. The first Oncologist I met with proposed a Breast Cancer chemo regime, based on my research it was brutal. I decided to meet with my new GP to discuss my options. She suggested a 2nd opinion, and I also ended up getting a 3rd too as I was so confused. The 2nd opinion was that chemo was unnecessary, given that it all seemed to have been removed, and the 3rd opinion also supported this. After a lot of soul searching, discussing with my husband and family I decided against chemo with close monitoring with scans.
In October during the first of my follow up scans it looked as though there was some lymph node involvement in both my abdomen and near my left collar bone. A biopsy confirmed that the cancer had spread. I would have to say this was a hundred times worse than the initial diagnosis. Again I went into panic mode fearing the worst, and after a few long weeks of waiting it was confirmed that I would need to have chemo, but it was also made very clear to me that there were no guarantees that the chemo would work given the rarity and lack of info on this type of cancer.
I was to have 18 weeks of dose dense Carboplatin/Paclitaxel – the standard chemo for ovarian cancer. 3 weeks on and one week off. I commenced on 7 December 2016 and just finished on 10th May 2017. To be honest I coped with the chemo very well. The worst side effects I had were numb toes, some blood noses and the odd headache. The hot flushes caused by the zoladex injections actually messed with me more than anything else, but I managed to continue working 4 days a week and used the scalp cooling machine at the hospital so kept all of my hair. I consider myself very lucky as I know that not everyone has such an easy run with chemo, and the reason that I wanted to share my story was for anyone who might be reading this during the dark days of a diagnosis.
It’s something that you wouldn’t wish on your worst enemy and despite everyone around you offering their full support, you ultimately have to face it alone. But it does get better, and when you reach the finish line it’s a great feeling. I just had excellent scan results and will continue with Avastin every 3 weeks for another 12 rounds, but the worst is certainly behind me.
As for the niggle on my right hand side, to this day we still have no idea what that was, but I think of it as a total blessing as without it I would never have been so persistent in chasing for an answer and it’s ultimately what sent me to my Dr in the first place.
We are finally well into the genetic testing process, and my diagnosis resulted in my Mum and two Aunties having preventative hysterectomies. A huge relief for me, and while the Dr’s don’t believe my cancer is directly linked to a genetic mutation, I feel as though there must be something lurking in our family to cause all of this cancer. Only time and research will tell!
My message is – trust your gut, know your body and if something doesn’t feel right you must be the advocate for your own health. If you’re not getting answers or getting the brush off keep pushing until you are happy. Don’t be afraid to ask questions and get a 2nd or 3rd opinion, and last but not least – it will get better.