I was diagnosed in February 2020 with Urothelial Carcinoma in my left kidney. I was 55 years old, female, very fit, never smoked and rarely drank.
My husband and I were booked to go on a cruise the coming Saturday, but my oncologist said chemotherapy had to start straight away.
Late 2019 i had consistent lower back and side pain, I left it for a few weeks, as I was lifting weights at the gym, and just thought it was a pulled muscle.
I decided that I needed to get it checked, went to my GP, who ordered a CT scan with contrast.
It came back with a small unexplained blur in my kidney. The urologist went with an infection, but ordered a cystoscopy to biopsy the mass to make sure.
I wasn’t diagnosed until a few months later, ended up having another biopsy, as they didn’t get a result with the 1st one. I was seeing an infectious disease specialist, as they still thought it was an infection.
When the urologist finally told me I had a cancerous tumour in my kidney, that it was aggressive, and if chemotherapy didn’t work, there was nothing further they could do!
I was in total shock!
I was there on my own, as my husband was at work, as were my 2 sons.
I actually ended up reporting this urologist, because of the manner he delivered this result, and his total unsympathetic nature.
For the week following, my family and I were devastated.
I thought I was going to die.
After my 1st oncologist appointment, he reassured me that I wasn’t going to die anytime soon, and that we had Plan B, C and D to follow if the chemo didn’t work, so the urologist was way out of line to say what he did.
He was positive that the chemo treatment would work, and in a way I was eager to get on with it, so we could kill this enemy in my body.
I had 8 weeks of high dose chemo, 3 days every 2nd week, with one day being 7 hours long!
I had all the lovely side affects:
Nausea
Fatigue
Reflux
Hair loss
Sore knees, pelvis and hips
Tingling in my mouth, hands and feet
Palpatations
Etc etc
I took every day as it comes, and never looked too far ahead.
I listened to my body, rested when I was tired, ate the food it was craving.
I had a wonderful support network, though it was difficult with Covid.
I had a scan done 3 weeks after chemo finished, and happily the tumour had shrunk. I was scheduled for an operation to remove my left kidney, left ureter and 46 lymph nodes. This was done 4 weeks after chemo.
That was 3 months ago.
I am regaining my strength, looking to go back to work soon.
I am currently clear of cancer, but I don’t know what the future holds.
It has a 50% chance of popping up somewhere else in the next 2 years, but with 3 monthly scans and cystoscopys, I hope to be on top of this cancer.
I still take one day at a time, and dont look too far ahead, I want to live in the now, not in the past.
I shared my story on Facebook, to raise awareness, not just for bladder cancer, but for any cancer. I was a healthy, fit person, who did all the right things and looked after my body.
I just hope that I can help, even one person to get checked early if any symptoms arise.
Sue
How are you now Sue? I can relate. I had cancer of ureter 2016 at only 35 years old.
Louise
XX
Hi Sue, my story is almost identical to yours. In 2017 I was 56, very fit and healthy (I thought). The drs also mucked around for a few months and misdiagnosed the large shadow in my left kidney as a “stroke” in the kidney. It was finally diagnosed correctly two months later after I started passing lots of blood and had to go to ED in severe pain at 3.00am. My left kidney and ureter were removed a couple of weeks later, then I had chemo. I’m still here five and a half years later.
Good luck Sue, hope all goes well for you,
Cheers
Sue