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UK Hubby, 45, G2 with CIS – we think! Scared too!
Hi. Been reading all your posts for past 3 weeks since finding out Steve has BC. Unlike most of you on here we have not been furnished with a ‘path report’ and have been told by the Clinical Urological Nurse that his BC was G2 and there was another flat area ‘picked up’. No ‘T’ type was mentioned. So far, I have been unable to talk to her as she will only talk to Steve and he has just relayed what he was told to me. Because of this I am assuming that the flat area is CIS. His consultant spoke to him the day after his TURB and said he was ‘70% confident the ‘tumours’ were ‘non-aggressive’. This instilled us with great hopes. Now, we have been told they were G2 and means he was wrong, doesn’t it? He was told by the Nurse that they were at the bottom end of G2 – whatever that means! Anyway, he now has to have the weekly BCG for 6 weeks. He had the chemo wash immediately after the op too.
I am rather scared as after reading everything there is know about BC, that CIS is highly aggressive and ‘progresses’. Can BCG get rid of it? I know it is good for the superficial tumours but what about CIS? Wouldn’t it be better that they remove his bladder? I have not told Steve any of this as he isn’t the type of guy who likes to know everything. He accepts what the medical profession says and reads nothing about it on the net. I, on the other hand, have read too much probably and frightened myself to death over it. The contributors to this site seem very well-adjusted, lovely people, who need to give me some positive feedback!!!
Oh, he has to have a CT urogram on 15th December. That has worried me too. He was told all BC patients receive one..but I am going through the ‘do they know something we don’t’.
He starts BCG next week. He is away in Spain this week, leaving me to chat to you lot. Plus we have a 2 year old daughter who occupies a lot of my time, which is good, otherwise I would be on here all day!
Would love to hear from you all.
Rab
GP aware of haematura in Jan 06
Diagnosed BC Nov 06
T1G3 with CIS
Age 46, Smoked since 15, gave up at diagnosis8 Replies-
Hi,
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. All the best, Wendy
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Hi,
anyone with Cancer in Britain we are very lucky to have a great local site:
http://www.cancerbackup.org.uk/HomeCancerBackup also have a free phone line for direct medical questions AND are absolutely great at hand holding.
The number is:
0808 – 800 1234
Their line is staffed by trained nursing staff.I find the American sites are in the main better for research and clearly this site is one of the best for BlC and related subjects.
I hope these help.
Regards,
Greg L-W. -
Hi,
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 >:(
Regards,
Greg L-W. -
Hi
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?
Rab
GP aware of haematura in Jan 06
Diagnosed BC Nov 06
T1G3 with CIS
Age 46, Smoked since 15, gave up at diagnosis
Hi Bunny
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.
Take care.
Hi,
what area? Which Hospital? Howmany Urology Consultants?
Occupation?
Perhaps with this additional information we can be more help.
My phone number is readily available if you want to phone – listed on http://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.
Regards,
Greg L-W.
Rab,
It is a tough way to proceed when your spouse doesn’t want to know much and just accepts what is recommended by medical. I had that situation with my husband a few years ago. I did not let up on giving him information, alternatives, possibilities even when he said he did not want to hear it. I kept it up. Because of my pushing and inquiry he finally probed further and cancelled the invasive surgery that was scheduled and went with a laparoscopic procedure. He thanks me to this day for being persistent. Keep pushing your husband to get the written pathology report, the operating room report, the doctors report. Here in the U.S. we can go to our hospital and receive a copy of the operating room report and all tests performed in conjunction with it. Keep after that husband to become very informed as we are all in charge of our own medical treatment and can choose best when we are informed. The family is involved whenever there is a medical challenge and all need to be considered so they can work as a team. Your fear imagination can run wild if you don’t have concrete facts.
Rabbit, I don’t know a whole lot of info… but let me assure you, this is the place to be. Hold on until people start replying and you will find your answers and a lot of comfort and support. I’ll be thinking of you and please don’t be scared. We’ll help as much as we can. take care and welcome. elaine the rugrat. :)
elaine f.
dob- 1956
female- Indiana, USA
caucasian
smoked cigarettes- 1975-?
5cm-noninvasive- low grade- papillary
TURB- Sept 11,2006Sign In to reply.
