We understand that people with cancer are worried about coronavirus. Here is the latest guidance. We will update it regularly.

Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Pazopanib

Ian436
Posted by

Gragon, hi, that is good advice, certainly anything I’ve been told or read makes it look like an operation is a pretty drastic measure. The op takes about 9 hours and the likely side effects look terrible. With tablets I just keep taking them, there are side effects but hopefully not too bad. Then there is the possibility of something new coming along which would be better and without side effects. I will listen to what a Surgeon says, but to be truthful at this point I don’t think I would want surgery. I will let everyone know what happens at consultation.

Ian

Ian436
Ian436
Posted by

I’ve just returned from seeing Pancreatic Surgeon. I should not have been to see him at all. A but of a muddle, if oncology team said to remove my pancreas, he would, but it would be a last resort when all other options had failed. So the upshot is I will have to wait for the result of my next CT scan to see whether it’s watch and wait, or targeted therapy with Pazopanib, or whatever. I have been to 3 different hospitals, and it appears communication is a bit hit and miss. Hopefully things go smoother in the future.

Ian

Ian436
buttercup01
Posted by

Sorry youve had the runaround. Glad the pancreatic surgeon said removing your pancreas would be a last resort - sensible fella.

Good luck with your next CT scan, whenever that is.

Sue

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Ian436
Posted by

Thanks Sue, I pretty much knew it was a non starter, from everything I’ve read online, and been told by other departments at other hospitals. He was a really nice guy, he even checked my endoscopy and confirmed I had 3 times the normal amount of fentanyl, he says it sometimes doesn’t work for everyone.

Ian

Ian436
Gragon
Posted by

Good morning Ian,

It's good to hear that you have had a bit of clarity from someone and are not going to have to undergo surgery.  I'm glad to hear that the mix up resulted in you being able to get a consultation but it is a reminder that it is important for you to push for your appointments, especially if several hospitals are involved.  You are obviously aware that they often fail to talk to each other to advise what they think should happen next and you might need to make sure that you don't slip between the cracks.

I only deal with one hospital but still have to contact them fairly regularly.  Their favourite one is to send me a date for my CT scan after my appointment with my oncologist.  As I am on a trial my treatment is determined by my CT scan results so this can't happen but still it does.

I can't remember if you said how soon your next CT scan is?  Sorry if you have said already but please let us know how you get on.

 Gragon

Ian436
Posted by

Hi Gragon, no date for my next CT scan yet, my appointment with oncologist is 23rd July. If I don’t get word today or tomorrow I will phone and try and gee them up.

Ian

Ian436
Ian436
Posted by

Hi all, just back from the hospital, I had a Cystoscopy today. Thankfully all ok, couple of stones in bladder, but not causing any problem so leave well alone. It wasn’t the most pleasant experience, but no where near as bad as pancreatic endoscopy. This has been a terrible 6 weeks or so, but hopefully after the 23rd July, I will know what’s what, and then get on with it.

Ian

Ian436
buttercup01
Posted by

Thanks

Good luck for 23/7

Sue

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
LindseyTom
Posted by

Good luck