Some of you will remember my endless delays for a follow up cancer op.
Well I got that op in December 22.
I was sent for by consultant who apologised for the delays and said I had to go on BCG which is -Immunotherapy drugs encourage the body's immune system to fight cancer cells. He said as soon as possible.
His word was good - I was rang by Urology cancer nurse to administers BCG and was booked in for a week ago.
Did not happen did it? I was pleased with plan but nurse rang me to say, not going ahead the MDT a group who decide treatments ect wanted to try something else.
I was gutted as I know BCG is the Gold Standard for Bladder Cancer, So what do they want to try? Very little other options, CHEMO? - REMOVAL OF BLADDER? - RADIOLOGY? - These really are the alternatives..
My cancer unlucky for me is aggressive G2 but as far as I know it has not spread to outer lining or muscle. So why I ask was I not left to have the BCG again.
I saw my GP yesterday who is a start - she did not know my BCG had been cancelled.
Worse my Dyspnea is getting worse - She is getting me on a 24 Hour ECG to see if my heart is to blame.
I told her I am now not just anxious but depressed - she said not surprised.
So I have to go and see consultant again for my cancer next Monday, 2nd time to see what on Earth they have in store for me...
sorry for long post..
Written by
Ern007
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Not a long post at all Ern but what on earth is going on? It’s dreadful to be deprived of something that could possibly help you. I truly hope you get some answers on Monday. The consultants explanation had better be good.
Thank You - I know - Consultant was so sure I was having BCG - I had BCG last February and despite delays I am still here and I understand it is still "In Situ" - I will post after I have been there next week. xx
Could i suggest that you contact Fight Bladder Cancer UK. It offers all the support that you may need together with a very active online support group. My husband had Bladder cancer for 8years, BCG is not the only option to treat Cancers of the Bladder. My husband had chemo which for Bladder Cancer is a short course of injections 5 days for two weeks. My husband had that twice. Join the support site you may find a lot of your questions answered When my husband joined there were less than 100 members it has now grown to thousands. Good luck .
Thank's I had a good plan marked out with BCG - There are not many alternatives, so looks like Chemo v Radiology . The Chemo normally used ate two types direct into bladder, But really BCG is the Gold Standard for Bladder Cancer and kept me going since last Feb - I have G2 in situ - So I am waiting to see what is offered. Thank you for you post, very considerate, I have had cancer for 2 years,
MDT stands for a multidisciplinary team. Not sure who it would consist of in your case. The point of such a meeting is to discuss a case and decide on the best course of action.
Very frustrating for you, why on earth did they refuse you after agreeing the drugs and operation, sounds like you were done over due to someone else or budget cuts which is very unfair. I wish you luck in your appointment and don't take no for an answer if you need this .
Sorry you have had the run around Ern and think you need to insist on finding out why this was cancelled and dont be fobbed off. Keep us updated on your progress x
Its disgraceful that these meetings can go ahead with any input from either yourself or consultant, what a backward country we are. I do hope things improve for you x
Sorry you are being messed around like this. I hope something positive will happen on Monday. Perhaps the consultant will put his foot down. Insist on knowing why the BCG won't go ahead.
I hope he is but not holding my breath. Probably want to try and impose a treatment, BCG I should have and they need to explain why, as it is Gold Standard, I saw my GP, she was not aware, Know Monday,
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