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Just diagnosed

7 Aug 2021 19:22

I'm a 67yrs old female leading a very active life. I had my cystoscopy a week ago and was told I would need a TURBT. Given no information on my ultrasound or the size of the tumour. Given an enlarged close up from the camera and told I would be having surgery within two weeks. Received appointment for CT scan which wasn't discussed with me. Felt like I'd treated like a piece of meat on a production line and an old lady who'd been a housewife all their lives. I know the NHS are under pressure but I was given no chance to ask any questions. I tried to make a private consultation to ask the questions I wanted to discuss but was told too busy. Feeling angry and frustrated I have since been to a private consultation where everything was explained thoroughly. I was also offered the procedure on what I thought would be the same date as on the NHS. It took me 3 hours to get through to someone after trying all the numbers I'd been given only to be told that I was urgent but not on the surgical list. Totally devastated that I should be basically lied to. I had asked at the beginning to have copies of reports etc but nothing. I am lucky that I can afford to pay for treatment but dadoi have lost all trust and confidence in my local hospital. I understood that surgery for cancer would be within 30 days. My tumour is small and papillary and just one but incredibly worrying all the same. Looking for some help with coming to terms with this. I'm not a geriatric and highly qualified in my own field but have been left reeling by the lack of empathy shown.

Just diagnosed

8 Aug 2021 08:33 in response to HFC

Sorry to hear of your news. I have my op tomorrow and it's all moved quickly but found the NHS to be fantastic. 

There's been a couple of times that it's not felt joined up but there's support out there from them. For example: I had to get my blood test results and my fears were eased as they have to do it theee stages then decide next steps. 
 

Just diagnosed

8 Aug 2021 10:48 in response to NickF07

I'm glad it's working for you and hope your operation goes well, thanks for your help and support. Speedy recovery.

Just diagnosed

8 Aug 2021 12:24 in response to HFC

Hi HFC,

I too am 67 and I was diagnosed with breast cancer in April. I must say that my experience has been the total opposite to yours. At each stage I was given lots of information about what was going on and when things would be happening. They also pointed out how 'young' I am and that it was definitely worth having all the treatment that I could as I still have plenty of active life ahead of me. 

Despite your local hospital being busy part of their workload is to talk to you and listen to your questions. Were you given details of specialist cancer nurse you could phone? I was, although haven't had to use them as I was throughly briefed anyway. 

I do hope things improve for you, whether it be privately or on the NHS.

Sending my best wishes x

Just diagnosed

8 Aug 2021 20:18 in response to Bionic

Thank you. I've just checked the NICE guidance for bladder cancer which follows what you've described. I'm going for the TURBT Friday privately so at least I one step along the way. It'll be a tough wait for the histology but can do that. Won't be to do much but reading helps! I'm just at the beginning and you sound as if you're on the way but devastating just the same. I will try the specialist nurse but didn't have any luck last week although I tried a number of times. Thank you so much for support and help as feeling down at the moment. Just hoping I can keep on top of this whilst coping with type 1 diabetes and a husband who has blood cancer. I wish you a speedy recovery and a positive outcome. My very best wishes and virtual hug.

Xx