My story’s a little bit different, I suppose, as I have never ever had any symptoms of ovarian cancer at all. Even when I was diagnosed, and again now that it has reoccurred, and I am fighting it again.
It all started in 2001 when I tried to seek genetic testing because of my family history. At that point, the doctors needed somebody who had actually been diagnosed with cancer to be tested, and all the women who had cancer in my family had died.
Years went by, but it was still in the back of my head. At the end of 2013, I looked into genetic testing again and I found out that testing was possible. However, they wanted to test my dad because he was genetically closest to his sisters, mother and grandmother, who had all had cancer.
The results confirmed what we already suspected; Dad was a carrier of a BRCA1 gene fault, and I subsequently found out that I had inherited the fault from him. My husband was with me when we got the results, and I remember saying to him, “Well, that’s not a surprise, is it?” I had always felt our family history was important.
So, I booked in for a CA 125 test and a transvaginal ultrasound, and the results were all so normal and boring, it wasn’t funny. But I decided, at 48, that I wasn’t prepared to take the risk of ovarian cancer; I immediately made an appointment to have risk-reducing surgery.
During that surgery, a small tumour was found right at the end of my fallopian tube sitting right next to my ovary. So, revelation… I already had cancer!
Getting that surprise diagnosis and having to front up to the reality of it was very stressful, as you can imagine. I think the hardest thing was that I had worked so hard to try and avoid ovarian cancer, but it came knocking anyway.
Through the spring of 2014, I went through six rounds of chemo, but I coped with it all pretty well. I’ve always been fit and healthy and I think that definitely helped. I did cold cap therapy to preserve my hair, which worked well, because I just wanted to maintain a sense of control over some small aspect of my life!
After I finally finished chemo, I just tried to set about living my life; everyone said the chance of it returning was small because I’d been diagnosed with an early-stage tumour. However, there’s always that “what if” in the back of your mind; “What if it comes back? What if this? What if that?”
There’s no doubt as a cancer survivor, you’re always second-guessing any symptoms. That’s also partly why two months later I elected to have prophylactic bilateral mastectomies. I just wasn’t prepared to live with the risk of breast cancer as well.
Last year in July, I had my five-year check-up, and everything was fine. I felt great! My surgeon said, “You’d have to be unlucky for it to come back now.”
Well, fast forward six months to my next check-up and my CA 125 ‘tumor marker’ had risen marginally. My oncologist said, “Look, I don’t think it’s anything. We’ll repeat the blood test in four months.”
When I had the repeat blood tests done the levels had gone up again. We did a CT scan, which showed a very small amount of pelvic fluid, and the oncologist decided to monitor the situation over the new few months.
At this stage, I had definitely moved into “I’m really worried” territory, but still, physically there was no signs and symptoms.
A couple of months later, the levels had nearly tripled. A new CT scan showed the same fluid in the pelvis, as well as a nonspecific eight-millimetre nodule in my abdomen. They couldn’t tell what it was; it could be nothing… or it could be something.
Around this time, I started to feel something I had never felt before; I started to feel like I was gambling with time.
I booked into to have a laparoscopy, where they found three very small spots, which turned out to be ovarian cancer. I had to wait three weeks to heal from the surgery, and then go straight to chemo.
Before chemo started, I was a bit of a wreck. No one wants to ever have to do chemo again but, having started the treatment, I now feel more resilient and much more positive about it. I feel like we’re doing something constructive.
All the way along, I have always had a real fear of recurrence. It’s a very common thing, particularly with ovarian cancer because the vast bulk of diagnoses are late diagnoses. That’s why the recurrence rates are so high.
I had hoped that because I had an early diagnosis I would’ve been spared, but apparently, I haven’t been. Somebody always has to be the statistic, I suppose.
Now that I’ve had a recurrence, the scary thing is that the chances of a cure are almost zero. It becomes something that has to be managed and treated as promptly as you can, each time it rears its head. And that’s a fairly challenging thing to live with.
My oncologist says that I’ll respond very well to chemo and that it should be years before I get another recurrence. He can’t tell me whether that’s three, or five or more years, but he says it should be “quite some time” before it comes back.
I’ve had a bit of a personal mental revelation, though, in the last couple of weeks. None of us have any control over the passage of time, so you can spend whatever time you have worrying about what’s in the future or you can focus on enjoying the time that you’ve got today. So, I’m going to do my best to try to make the most of the time that I have. Some days that is easier said than done, though, isn’t it?
I’ve got two daughters, who were at risk of inheriting the gene fault from me, and they’ve been genetically tested. One hasn’t inherited it and one has. Dealing with that knowledge is a very complex process, but she’s got options that I didn’t ever have and for that, we’re all incredibly grateful.
This whole process has made me realise how important it is for cancer survivors to be vigilant about their health. You have to make sure that you continue to do your follow-up care and take the advice of your doctors, because you never really quite know. Being informed, knowledgeable and able to advocate for yourself are the most important things that anybody can do when it comes to their health, cancer or no cancer.