TLDR: I got diagnosed with borderline ovarian cancer 4 years ago so this is written from a personal point of view, and after many conversations with patients and doctors in an easy-to-understand way. You can email me if you still have questions, scroll to the bottom for my email address!
Just under 5 years ago I had the very confusing diagnosis of ‘borderline ovarian cancer’ and would have loved to have come across an honest, real-life experience of borderline ovarian cancer because the info out there was, quite frankly, shit.
I was scared, confused and very young. I googled daily ‘what is borderline ovarian cancer’
If you have come across this article then it is quite likely you are probably searching high and low on every corner of the internet for a ray of hope, and I hope this article helps you.
If you don’t fancy reading about my whole experience of borderline ovarian cancer I can sum it up by saying it has been a difficult time but 5 years on, I am fine (ish). I had a full hysterectomy when I was 30 and I have check ups every year now (it was every 6 months) I take HRT as I am fully in the surgical menopause but apart from that, I’m okay.
Quick Summary: Borderline ovarian cancer is non-invasive cancer that may turn invasive
If you want a little more information on what is borderline ovarian cancer then stick around, as I think I have a pretty good way of explaining it.
I posted this TikTok about what is borderline ovarian cancer, which I think sums it up well.
Here’s my story of how I was diagnosed with borderline ovarian cancer.
My story starts with a pretty routine trip to the GP as I was feeling a little more bloated than normal and I suffer with ovarian cysts so I assumed it would be that. I wanted to do another round of IVF (I had IVF to have my son) and I knew that if I had one, they would want to operate on that first. So I thought I was just speeding up the process of having my second child.
I went in for an ultrasound (aka, dildo cam) and got the results within 48 hours. I was told I needed to come in and see the doctor as soon as possible, and I knew straight away it wouldn’t be good news.
She told me there was something there but they couldn’t figure out what it was. She printed out a blood tests form for me and I got booked in for an MRI, within 2 weeks. The 2 week wait is infamous with cancer, I knew this because of my Mother in Law, so I was feeling a little scared but also pleased it would move fast. Silver linings and all that.
I had blood tests which showed my CA125 was raised. They use this as an indicator of cancer, but it isn’t always accurate. However, it being raised is a red flag. My MRI showed a tumour, which was explained to me over the phone. I was left wondering ‘what is borderline ovarian cancer’?
I was booked in for a laparotomy about a week later. You can read more about my recovery from a laparotomy here.
The surgery went fine and I went home to recover while they analysed the results. It turned out it was stage 3 borderline ovarian cancer. It was on most of my reproductive organs and the surgeon said if I had signed to have a full hysterectomy he would have taken everything there and then.
He recommended I book back in for a full hysterectomy. I got 2 second opinions and both said the same. It had around 1/20 chance of turning invasive and I had the implants everywhere, I did not want stage 3 ovarian cancer.
My reproductive system was now useless to me anyway, no one would do egg collection on me let alone IVF and let me be pregnant.
I thought of my son, and went ahead with the hysterectomy 4 months later. You can read about my experience having a hysterectomy from that, and see my video diary too. I cry a lot in the video diary, but I also tell you I am fine too. A lot!
So what is borderline ovarian cancer exactly?
Over the years I have gathered info from various groups (love this one on facebook) medical research papers and conversations with doctors.
My understanding is that it isn’t cancer. So try not to panic. That ‘C’ word had me fearing the worst. However, it does have the potential to turn into cancer so you do need to treat it with caution. Some people call it cancer and others call it tumours. It also can be known as BOT, for short.
The borderline tumours are ‘non invasive’ whereas cancer is ‘invasive’ But the non invasive tumours are at risk of turning invasive. This is the same for any borderline cancer, I believe.
I had the implants on my womb, ovaries and cervix so if my implants turned invasive I would have been screwed. I didn’t like the idea of that in my body, with the risk of the implants turning invasive.
I have check ups regularly, for the first 5 years I had them every 6 months but now I have them once a year. You can read more about what it is like to have a CT scan here. It isn’t too bad!
Symptoms of borderline ovarian tumours
As I mentioned before, I was a little bloated. Here is a picture, you can see I was a bit bloated. That was the only symptom I had though.
Other symptoms of borderline ovarian cancer might be:
- Feeling full quickly after eating
- Needing to wee more often
- Abdominal pain
- Bloating (as mentioned)
Borderline Ovarian Cancer Forum
I came across this group on facebook and it really helped me and others learn more on what is borderline ovarian cancer. The people there are happy to answer your questions honestly, and from a real life perspective. Sometimes you just can’t beat real life experience especially when it coems to borderline ovarian tumours which are actually pretty under researched.
Join the group: https://www.facebook.com/groups/493210181333314
Borderline Ovarian Cancer Staging
Personally I have found this really confusing. It basically means how far the tumours have spread and it is staged in the same way cancer is staged. I found the below info on Cancer Research website and it sums it up perfectly:
- stage 1 is the earliest stage where the borderline tumour is within the ovary (apparently this is the most common)
- stage 2 generally means the abnormal cells have spread within the pelvis, for example to the womb, fallopian tubes, bladder or the back passage (rectum)
- stage 3 means the cells have spread outside the pelvis into the abdominal cavity
- stage 4 is the most advanced. It means the cells have spread to another part of the body, such as the lungs
Types of Borderline Ovarian Cancer
When you get staged you will also get told what type of BOT you have. There are 2 types with serous tumours being the most common, followed by mucinous tumours.
Borderline Ovarian Cancer Survival Rate
Borderline cancers have a very good survival rate, so try not to panic.
The 5 year survival rate is 95-97%
The 10 year survival rate is 70-95%
You can read more about the survival rates of borderline ovarian cancer here
Can You Get Pregnant After Borderline Ovarian Cancer?
In my case no, but that is because I was stage 3 and it was caught very late. I clung on to hope that I could get pregnant for months, I really wanted second child. I spoke to lots of women in the BOT Facebook group who did get pregnant after having borderline ovarian cancer.
If you go in the group and search you can type in fertilty sparing and pregnant and see what comes up. There are lots of happy stories about it working for some people.
I wasn’t able to even have egg collection done before my hysterectomy. The IVF specialists were too worried about the tiny needle that goes in and collecting the egg accidentally hitting a cancerous cell and causing it to spread (I’m not sure on the technical term here!)
I was devastated but I did cryopreserve my ovary at the Royal London Free. This means my ovary didn’t go in the bin! They think that there may actually be a way to have children one day using the tissue that are biologically yours. First they would need to check it for cancer cells and at the moment there is not the tech for that, but it might not be far off.
It needs to be checked as it would have to go inside a surrogate, so obviously may be a little unethical if there might be cancer cells!
I really hope this has helped someone. I’ve written lots about my experiences on the blog. I am happy to answer questions if you have any please email me [email protected]