Thought I’d better get this written down while I’m still in shock and it all seems surreal. Apparently the team meeting to discuss my results isn’t until tomorrow as they only came through yesterday but my situation is serious with the added need for speed as my kidney is not draining. The cancer is T2b G3. Firstly I need to have a CT scan to see if it’s on my lungs. If it is there are no treatment options but he doesn’t think it will be as my pelvis and lymph nodes are clear and it would generally travel upwards.
Then I need a chest drain followed by 3 cycles of chemo 3 weeks apart and then I have the option of radiotherapy or an op to remove my bladder,uterus, ovaries and appendix. If I have the radiotherapy I will have to keep the kidney drain permanently. If it doesn’t work I won’t have the option to remove my bladder. If I have the op and it doesn’t work I still have the option of the radiotherapy. So provided my CT scan shows no spread to the lungs, I think the only sensible option is the operation to have all my bits removed. I won’t need the kidney drain then.
so that’s it in a nutshell. I don’t know what I was hoping for or expecting but I don’t think it was this. It’s all just so surreal, I don’t know when it’s going to sink in.
Hi Linda. I didn't go for removal, but did have the chemo (Gem/Cis) so happy to answer any questions in that regard. Best wishes.
Hi Linda. I had 3 cycles of chemo over six sessions. A cycle is one long day in the chair with Gemcitabine and Cisplatin, then short day the following week with just Gemcitabine. Repeated two more times. Although in the chair all day, you are not being pumped full of drugs all that time. Most of the time it is just saline solution to keep your kidneys flushed. I was meant to have it all over 6 consecutive weeks but had a couple of delays because bloods not recovered enough. Not uncommon. You need blood test before each treatment. You are given anti sickness tablets. I was never sick and didn't really have any nasty effects. The anticipation of waiting for something bad to happen was worse than anything that did happen. Difficult to predict how people will react, but some people do have bouts of nausea. The drugs used are not the ones guaranteed to cause hair loss, unlike drugs used for other cancer. Some people have reported thinning on here, but total hair loss is very rare in this group. I then had a choice to make and opted for chemoradiation. So far so good over 7 years down the line. Good luck going forward. Best wishes.
Hi Linda. I drove to my sessions with no problems. If unsure, maybe you can get someone to take you to the first one to see how it goes. Also, my onco advised I get a good quality mouth wash and use it regularly to help prevent mouth sores which can be caused by chemo. I found the chemo lounge to be very sociable and upbeat and not all doom and gloom as you may expect. May be more restrictions these days though. Best wishes.
Best of luck for your ct scan xx hope you are feeling bit stronger today 
sending you lots of good wishes my thoughts are with you xx love Tina xx
