Hello all
Hoping for some advice for my lovely Mum. In 2024 she had her kidney, ureter and part of her bladder removed due to stage 3 aggressive cancer in her ureter. This was followed up with chemo which sadly had to be stopped due to her remaining kidney struggling to cope. She managed a few months cancer free, but sadly recent scans have shown the cancer to have spread to local lymph nodes, and lymph nodes in her neck.
We had a rather depressing Oncology apt this week. The consultant offered Immunotherapy but really pushed how this could reduce the quality of her life. We asked what would happen if she did not have this treatment and he said 'we will just scan again in 3 months and see what's happening with the cancer then'. 3 months seems like a very long time to wait for an update. We asked what a timeline might look like with no treatment and he said 'are you sure that you want me to answer this question today'. It all felt a bit cold and dismissive and I did not feel like Mum was being supported or made to feel like she had enough information to make a decision whether to have this treatment or not.
We are all in shock and terrified of what the path ahead looks like. Mum is unsure whether to start this treatment as the consultant said it is only effective 55% of the time, and she is worried she could become very unwell. She has previously had an auto immune disease (Polymyalgia), so is extra worried. The consultant flagged very severe side effects.
We are wondering if we should get a second option with how to proceed? We know the diagnosis of her cancer will not change but we feel really floored and sort of 'left to it', which is a really horrible feeling especially knowing that she may not have long left.
Thank you for taking the time to read this.
Hi A_R
I’m Anne, one of the Community Champions here on the Online Community, and although I've had different cancer diagnoses to your mum I've just spotted your post.
I hope you don't mind me suggesting that you also post this message in the bladder cancer and kidney cancer groups as you'll then connect directly with people who may have had to make the same treatment decisions as your mum.
When you have the time, it would be great if you could put something about your mum's diagnosis and treatment 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"
I've just had a look at your 'activity' and both posts are showing in the groups. Hopefully, it won't be long before they get replies.
Wishing both you and your mum all the best
"Never regret a day in your life, good days give you happiness, bad days give you experience"
