Welcome on behalf of your husband. I hope he takes an interest himself one of these days. Some people choose denial as a coping mechanism. I've read that this can be quite effective and helpful sometimes. In the old days-before the internet-most people had no choice than to accept the doctor's word as law and wouldn't dream to second guess anything. Now we've lost our innocence with the accesssibility of PubMed and all the journals. It's a land fraught with peril for the unindoctrinated though, and it seems there are more questions than facts floating around.
One thing for sure, BCG is very effective on CIS.
Your doctor sounds pretty on the ball to me, doing the chemo wash, a CT urogram, prescribing BCG, all very state of the art and it sounds like you may have lucked out with a good one. I hope so.
>>BTW, am I replying correctly? Do I have to start a new topic every time 'to get noticed' or have you all picked up this message?<
You don't have to start a new thread, if people choose to they receive notification of replies. Others just browse. You might want to start a thread over in the section for superficial bladder cancer if you'd like to start a discussion about BCG treatment concerns or other things related to treatments.
I'll try and track down someone else using the uro/onc unit at Solihill and put them in touch.
I have found the local media and knowing my MP has helped immensley
I too am NHS but there is the omni present realisation that Tiny Blur and the harridan Hewitt could barely put up, party, brewery, ***s, in, organise & a in the right order and would lie about it anyway!
I believe that I can survive cancer but wonder when the obscene ineficiency of the NHS will kill me >
Thanks for all your replies to date. It is sooo fantastic having this website - although it is very early days for us I feel better just knowing it is only a wobble of the mouse away!
Greg - our hospital is Solihull/Heartlands. He has been seen by one consultant urologist who is the head urology/onco chap for the area. He specialises in bladder cancers and has years of experience. This is all happening NHS. We do not have private health insurance but did wonder whether it would pay to see the consultant privately. To date, the NHS have been very quick in admitting Steve - diagnosed on a Wednesday, operated on a Monday (gp wasn't so fast considering she thought it may have been an infection 10 months previously - Steve keeps telling me to stop 'harping on about the past', but I get wound up just thinking why they didn't fast track him back then...).
BTW, am I replying correctly? Do I have to start a new topic every time 'to get noticed' or have you all picked up this message?
GP aware of haematura in Jan 06
Diagnosed BC Nov 06
T1G3 with CIS
Age 46, Smoked since 15, gave up at diagnosis
I'm not sure what the privacy rules are in the UK but here in the USA the patient has to sign written consent to discuss information with someone--even a spouse.
My husband is more than glad to have me work as his personal secretary, appointment maker, telephone call screener, test preparer, medication dispensor, question queen and so on and so on :
However I still let him think he is the boss. Do you hear what I'm saying? ;D
But seriously I do make sure he understands totlly what the choices of this difficult life altering surgery is all about. I do not want him to feel that he should have made a different decision a year down the road.
Lots of guys are stubborn and try to protect the woman they love from additional stress and worrying. Maybe a frank discussion with him stating that you want to be involved will help him understand that in this situation two minds are better than one.
I would also request a sit down time with the doctor to get a straight answers as to exactly what stage, type and treatment plans are available.
what area? Which Hospital? Howmany Urology Consultants?
Perhaps with this additional information we can be more help.
My phone number is readily available if you want to phone - listed on www.JamesWhaleFund.org
Yes it is scarey so do not be embarrassed at that fact or your fears but also do not forget that you diminish your ability to deal with the situation if you let fear gain the upper hand. Your husband is luck that you are working with him to find solutions and I can well understand if either of you have times when you just want to hide from the realities.
Your husband is better off than most men HE has had his BC diagnosed and will have it dealt with - there are a huge number of particularly men wandering around out there with hematoria or other symptoms - because it is below the waist they think of it as a STD and hope it goes away rather than, what they see as, the humiliation of going to the Doctor. This seems to be the greatest single cause of too late diagnosis - so your husband is fortunate.