Here We Go Again.

[Ern007]

I will try and keep this short.

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..

[sassy59]

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.

Thinking of you. Take care xxxx❤️

[Ern007 in reply to sassy59]

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

[sassy59 in reply to Ern007]

Can’t wait to hear what is said. Xxx

[Ern007 in reply to sassy59]

Same, puzzled xx

[clematis5932]

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 .

[Ern007 in reply to clematis5932]

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,

[slram]

That is awful. God bless....

[ostiad]

I'm so sorry 😞 😢 xx

[CDPO16]

So sorry you are getting the run around Ern. Hope you make some progress on Monday. Thinking of you and sending my best wishes.

[Ern007 in reply to CDPO16]

Thank you, I will post whatever happens, getting a bit fed up now, I mean who are MDT?

[CDPO16 in reply to Ern007]

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.

[helenlw7]

That is shocking! Hopefully your appointment on Monday will give you answers.

[Ern007 in reply to helenlw7]

Thank's - I sure hope so.

[peege]

thinking of you dear Ern and I'm keeping my fingers crossed that you get the BCG reinstated on the third. Very best wishes 🙏 💐 🌹 ×××

[Ern007 in reply to peege]

Thank's Peege - I wish but looks like the MDT has other ideas, I will post Monday,, x

[B0xermad]

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 .

[Ern007 in reply to B0xermad]

Thank's, what is so annoying - BCG is gold standard for bladder cancer, makes me wonder why, what?

[Izb1]

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

[Ern007 in reply to Izb1]

Can't blame the consultant it's the faceless MDT - I will def keep you all updated x

[Izb1 in reply to Ern007]

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

[Ern007 in reply to Izb1]

Thank you and with my Fibrosis, it was a face diagnosis. and that was with MDT consulted.x

[Mooka]

That’s awful for you. Can you take someone with you to your appointment that can fight your cause. 🤗

[Ern007 in reply to Mooka]

Oh I take my wife but it works like this, they talk we listen, they will answer question but never in depth.

[Alberta56]

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.

[Ern007]

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,