Hi, I am new to this forum. About 8 months ago I was diagnosed with stage 3 Upper Tract Urothelial Ca. cinoma - a very rare form of cancer (if you type it in the search bar of any forum here you will see how rare it is). When I first received the news, I was in a car with a few colleagues going to a governement office. It was a text message sent by the doctor who did a cystoscopy. I immediately began feeling very ill - dizzy and nauseous and felt like throwing up. I don't know how....but I managed to not pass out for the duration of the trip and beyond. But I was visibly shaken, for sure.
Since then, I've had a radical nephrectomy to remove the tumor and my left kidney and ureter. Pre surgery it was determined that I was intolerant of dhemo because my blood platelet count was very low. Moved to a new city, and have been doing immunotherapy for about 4 months now.
Did a CT scan last week. The resutls showed a small growth near where the kidney was removed. Again, I got this in a text message. This time I was in my office. I tried to absorb the news and its implications. A rush of blood went to my head, felt extremely dizzy and nauseous. Next thing I found myself on the floor of the office, my head throbbing. I had fallen off my office chair.
A few days later I went to visit the doctor. She explained I would need a combination chemo and immunotherapy to eliminate this new growth. Again, I felt dizzy, nauseous,etc and lost consciousness in the office. It took a matter of seconds. Fortunately, I was in a hospital so I could properly rest and was safe.
I am wondering whether anyone else has had similar reactions and how you handle it? How can one prevent oneself from losing consciousness? This could be very dangerous. I have been handling my diagnosis and treatment very well - it doesn't really bother me day to day. It's just when confronted with messages from the doctors. Any guidance or tips appreciated.
Hi Snake65 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community, and I noticed your post in cancer chat. Having blackouts must be very scary but not something I've experienced.
As the online community is divided into different support groups, I'm going to suggest that you join the bladder cancer group, which is a great place to ask questions, share experiences and get support. I've done a search in that group and there are other people posting there with the same type of cancer as you. They may also have experienced blackouts.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
