Anxiety about diagnosis

Susb 1 month ago

13 replies
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First time on here I was told I was incurable June 2023 been fighting bladder cancer since 2020 eventually had my bladder out sept 2022 . Cancer came back and told I had 12 months to live it was in my lymph node’s.Had chemo for 4 months and was told no sign of cancer started Avelamub just for maintenance and it’s come back . So still on Avelamub until February then CT scan if the lymph nodes haven’t shrunk not sure what will happen. I have tried to be positive but can’t do it anymore I’m crying a lot I feel like I have had enough. I’m having immunotherapy on Monday but the nurse said my iron is very low and will probably need a blood transfusion it felt like the last straw although I have been through worse it just adds to my anxiety. Anyway if anyone has any advice I would be most grateful

Stella2020 1 month ago in reply to Xena WP

Hi Xena

i have read your profile. You are gone through so much, so amazing. I think I will ask about palliative care / hospice too. Although I am feeling ok right now but it would be nice to get in touch with them.
sending you hugs

Stella

Susb 1 month ago in reply to Stella2020

Hello Stella Thank you for your reply I was told June 23 the cancer had come back 8 months after my bladder was removed and a stoma formed having my bladder out was supposed to make me 97 percent cancer free but unfortunately I was one of the 3 percent. So I was told like you I could try chemotherapy but it probably wouldn’t work but it did and I was Ned in December 23 so it could be worth you trying it also I was told in June 23 I probably had about 12 months to live . Anyway in December I was given the choice of doing nothing and having CT scans every 3 months or immunotherapy I chose immunotherapy unfortunately some of the lymph nodes have shrunk some have got bigger so carrying on with immunotherapy until February.

Stella2020 1 month ago in reply to Susb

Hi Susb

Thank you for your reply. I am going to have a go with the chemotherapy as people said it was quite tolerable. Like you when I had my initial operation and was clear for 3 years. My very last surveillance scan with 2% chance showing up anything …showed up recurrence.

I suppose if you don’t buy a lottery ticket, you definitely won’t win. If I don’t try chemotherapy then it definitely will get worse more quickly.

I hope you are feeling a bit more settled today. I am trying to limit my time thinking about cancer intensely until 10am, then try to get on with life the rest of the day.

Take care

Stella