Date of diagnosis: November 2016
Age of diagnosis: 30
2016 was meant to be the year, so much to be happy about celebrating my 30th, My daughters 16th and marrying the man of my dreams, also trying for our own a little one together.
But behind the scenes life wasn’t as happy as it should have been. There was a lot of uncertainty, hospital trips, worries and one big waiting game due to the tumour that had been found on my ovary in April. We got married despite all the chaos we had going on in the back ground.
My first surgery: In November I had major open surgery due to widespread tumours. This included a full hysterectomy, which resulted in surgical menopause, way before my time. Unfortunately I can not take any hormone replacement therapy to help with side effects, as it would also grow my cancer. I also had major debulking including a bowel reconstruction and liver scraping.
Recovery and further treatment: Recovery wasn’t an easy ride. Physically and emotionally. But nothing was as worse as being told what they removed was cancer! A rare type of one and recurrence is very high.
My doctor confidentially explained he removed all that the eye could see, so the next step was chemotherapy. Low grade serous carcinoma is resistant to chemo but it’s one of the treatments. So I did 6 rounds.
Not the best start to 2017 and married life but I got on with it and was hopeful. The year went past with my usual follow up oncology appointments.
Recurrence: All seemed fine until I felt 2 lumps – one in my groin and one in my side. I had more scans and tests and in 2018 I received confirmation that the cancer was back! I think i took it harder this time then the first.
I think one just hopes it will never comes back and you’re cured. But reality hit hard but i had to pull myself together. Plus i did it once i can kick it again. Positivity and all that!!
Cut a very long story short. Removable of these 2 tumours wasn’t going to be easy, riskier then the major surgery I had at the beginning. My life was at risk again. My whole right side would need to be reconstructed.
Planning for surgery: The surgical risks were huge. My surgeon had never had to remove cancer from this location before. Just to add more complications, he would have to build a team of surgeons and plastic surgeons. That’s if he could perform it due to the position.
A PET scan was arranged to give him a clear look. There was no question or time needed to think about it. This surgery had to be done no matter what. It would be stupid not to do anything to save my life. So we prepared ourselves and got our heads around what this surgery would entail.
Worse news: Well … if you think being told you’ve got cancer was the worst thing ever, boy nothing prepared us for what we was told the next time we visited him… I thought my world had been turned upside down since 2016 but my world came crashing down a million times over.
The scan had showed up another tumour in my mediastinum which is my chest, close to my heart. Because of the location it is not possible to remove it and no other (only 2 available) treatment would work.
Impossible decisions: Currently there is nothing I can do but just hope the hormone inhibitor therapy I take daily slows the growth of my cancer. My surgeon said they can still operate on the other two tumours that are on my side as per our previous discussions. But that would come with massive risks, and I would still have the tumour close to my heart. They advised me to have a good think about whether the risks were worth it. My doctor recommended I go and enjoy life as much as possible in the meantime. If I have surgery the recovery will be long, and we have no idea how long it will take before the tumour near my heart causes problems.
Going home: The journey back from Southampton hospital was a very emotional one. I cant even put into words how we were feeling. It was so much to take in. After a lot of hard discussions it was decided that surgery wasn’t the best option. I want to live the best life I can with what I’ve got left and having the surgery would hinder that majorly.
So due to its location and size, with current medical treatments it is incurable.
Looking forward: I am living my best life, making memories and enjoying whatever time i have before it takes it. Its unknown how long and I try not to think about it. I treasure every day I get.
How your donations would impact me: We desperately need better treatments for low-grade serous ovarian cancer. Donations mean more research. Research means clinical trials. Clinical trials mean new and better treatments. Treatments that could give me more time with my family. But we need to make this happen now, because I don’t know how long I have left.
Go to: https://www.justgiving.com/fundraising/clare-brindley to support my fundraiser for low-grade serous research.