How it all started – Symptoms and Diagnosis
My name is Amanda. I’m 51 years of age. I was diagnosed with a granulosa cell tumour of my left ovary in February 2020. My story started when I developed a cough, abdominal pain, tightness, and soreness in my abdomen. I thought it was just my age because I was 49 at that time. But my friend advised me to go to the doctor. They referred me for a chest X-ray. Then they said to get CT scans. So when they discovered suspicious material on my pelvic area and my ovary area. So I was referred to a gynaecologist.
There was a bleed and it started getting heavy. Eventually, they got me prepared for the gaining team at the Royal Family in Glasgow and scanned everything of my pelvis torso, and discovered there was a problem with my gynaecological area. Since GCT is genetic cancer, they didn’t know a lot about it. So I was referred to an oncology team.
Treatments undergone and challenges
So the medical decision team got together and they decided to perform a total abdominal hysterectomy and remove all my gynaecological tissues because at 50, I wasn’t going to be having kids anyway. Okay. It was stage one A, but with a GCT, there’s still a high return rate and it doesn’t respond to chemo. Even if he gave me chemotherapy, the cell tumour of my left ovary wouldn’t respond. So they get me checked every six months, blood to get done to check oestrogen level to ensure nothing has changed.
My mom, my dad, and my sister were fantastic. My mom, my dad, my sister, and I stay together. I was caring for my sister because my sister got Parkinson’s. I’ve had to give all that up because I can’t. If I left because of my knee, but not because of my GCT, my scar is still quite tender. But then I think it’s because I need to do more exercise. But my support network was my mum, my dad, and my sister. My Church family supported me a lot as well. They support you right through your whole journey, whether it’s for months or years, and the rest of your life. I’m quite lucky because of the really good support system here.
Well, my life has changed anyway because I was always very active. I always suffered really bad cramps and had hot water bottles and things like that in my bedroom. Nonetheless, I’m feeling better. I’m starting to lose weight. I’m starting to eat healthy again. I’m doing exercises to build myself. It took me about three months to regain my health after the Mastectomy and I went back to work. I can’t get a normal massage done ever again. It’s got to be an oncology massage to get done because GCT is hormone-based cancer. So if you get a normal massage done, it just stimulates all your cancer cells again.
Being cancer-free and chances of recurrence
I was absolutely pleased. It’s a difficult one because it’s not so well known. There’s not a lot of information there about GCT. I am kind of educating oncology teams in England and Scotland because they don’t know too much about GCT. Over 2% of women get a granular society tumour. There are two kinds of granular celebrity granulosa cells tumour, which tends to happen to young girls between 25 and 30. And then there’s an adult granular cell tumour which tends to happen in women from 40 onwards. So there are two groups. But the thing is you get told your disease is free and you go and then you realise there’s a high return rate.
Gratitude and positivity
I’m grateful for the oncologist team. I’m just thankful that we’ve got a team of doctors and nurses on the NHS consultancy. Just thankful that we’ve got a team of doctors that know about different things. The researchers nowadays are just amazing. This is what we’re looking at. I’m just thankful that I’m still here.
I feel more positive now because I know I’m getting the right help. I’ve got a driver that takes me down and brings me back. So I’d like to rely on my family to take me there and bring me back. So, I’m getting all the support I need from oncologists who are looking after me. I just do a positive happy dance to make myself feel a bit better. Music helps so much. Keep up, beat and stay positive. As you see, I’m quite a chewy person anyway. I wasn’t for a while, but I am now and I’m feeling more positive. I don’t want to get this knee done. I just want to get back to my Zoom and my swimming and all the things I was doing. But you know, I know that’s coming and I can do it.
Message to other cancer patients and caregivers
Don’t let cancer beat you. You just stay positive. And get the help you need. Don’t hesitate because the teams are there for a reason. Don’t go on Google or the internet because that’s the worst thing you can do. Go with what your oncology team tells you. Follow their advice and you can’t go wrong. Don’t listen to other people’s opinions. Even on the days when you’re not feeling great, put a smile on. You need to force yourself in the morning to get ready and put your clothes on. Keep up, beat and stay positive. So ladies, stay positive. Don’t let cancer beat you. You beat cancer.