Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

The Waiting Game

Teasswill
Posted by

I agree that you need to keep an open mind regarding treatment options, weigh up pros & cons & take time to consider your choice. But bear in mind BCG (if offered) is not necessarily a safe or easy option compared with surgery. Cure rate long term is less than 50% and if a recurrence is invasive, it can mean prospects for long term survival can drop considerably or the cancer may even be incurable. The problem is not knowing if it will help or not - consider how much of a gamble you wish to take. Good wishes with your appt and making a decision.

Inanna
Posted by

Funny my gut instinct is for surgery x I will listen and think about all issues but instinct keeps saying surgery

Thanks Teasswill

Love Inanna

I know that I don't know
fengirl
Posted by

I think I'm in the same boat as you Inanna..  I had what they called a large tumour (4 cms) removed back in November 22nd..  Had a CT a few days later which showed nothing nasty...  I'm still waiting to start chemo/radiotherapy..I saw an oncologist before Christmas and after hearing nothing and leaving several messages on the answerphones I finally managed to get another appointment "with another oncologist" for this coming Monday..I've been told it's to discuss the finer points of chemo...Like you, I'm feeling really anxious..  My cancer was too far advanced for into bladder chemo, so I'll more than likely be going bald and being sick...Trying to stay upbeat, I've bought a girly, "pink" bowl to be sick in...

Once you become aware, you can't become unaware....
rily
Posted by

Hi . Chemo may not be as bad as you think. They give you anti sickness meds to help prevent any nausea. I did not have any nasty effects at all, but some people have some sort of effect. As regards hair loss. The chemo usually used for bladder cancer is not the type guaranteed for hair loss. Some people report hair thinning, but we rarely hear of complete hair loss in this group. It is a bit of a lottery. I hope it goes well for you. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

fengirl
Posted by

Thank you, you too...xx What a club to be in eh,...xxx

Once you become aware, you can't become unaware....
sueCC
Posted by

Just sending good luck for your results  Inanna and fengirl, also to add Inanna, I had BCG with hardy any side effects to speak of, just thought I’d let you know not everyone has bad side effects. X

Sue Xx
Inanna
Posted by

Hi Fengirl 

I wish you all the best and know exactly how you feel. Like you I am at the beginning of this journey and I am trying to remain positive. It's the only way to be cos being miserable ain't gonna change a thing 

You got class gal, much more ladylike spewing up in a pink bowl.  Please let me know  how you get on 

Love Inanna 

I know that I don't know
Inanna
Posted by

Thanks Sue for your reassuring post on chemo

I think I will just do what my Consultant says.  Thinking about this subject is just upsetting to my one brain cell, lol

Love Inanna

I know that I don't know
sueCC
Posted by

Inanna, I was referring to BCG, ive not had chemo so can’t comment on that, but I think you’re doing right by listening to your surgeon. X

Sue Xx
Crustybladder
Posted by

Hello fengirl

I'm with Rily on this one. I had 3 months of chemo (GemCis) and was given dozens of anti nausea pills to swallow, 40 a day. They stopped me being sick. My hair stopped growing but never fell out, not that anyone would notice as I don't have much anyway.

Let us know if you go ahead with the chemo and we can give you some tips on managing your way through it.

CB

I may appear to be listening but in my head I'm boating. 

Inanna
Posted by

Hi Fengirl

All the best for tomorrow 

Love Inanna 

I know that I don't know
lucy-l
Posted by

Hi Inanna,

So glad you’ve managed to get an appointment, you certainly have to manage things yourself I’ve found!

Worth taking someone with you and have some questions written down as you may forget to mention something.

Good luck

Luce x

Inanna
Posted by

Hi Luce got my Sis coming with me, I think I got lulled into a false sense of security when things happened pre TURBT, oh and the medical lingo that I am learning lol 

Love Inanna

I know that I don't know
Wilbert
Posted by

Good luck on Friday Mr W had biopsy  today of red patch which is hopefully inflamation not cis So we are now playing the waiting game yet again He also had crytodiathermy which could be to cauterise the biopsed  area or remove something He is asleep and I'm alternating  between trying to read and Dr Google searching which I need to cease 

He has had 24 bcg treatments which Incidentally  our consultant said had an up to 90% chance of being successful 

We hoped the mdt would present us with the preferred  option but they gave us a choice bcg or RCA. When we opted for bcg only then did con

sultant  say it would have been his choice !

All the best lits of love 

Wilbert x x

Inanna
Posted by

Hi Wilberttm

Glad that Mr W has got some great results x I must admit am feeling very nervous about Friday x what is a RCA please

Love Inanna

I know that I don't know