Bladder cancer

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

Medical staff involved

JennyJJ
Posted by

I would like to know if what is happening to my husband is the norm across the country or is it just at our hospital. It's not a major complaint just an anxiety and I will write as simply as possible, how often do any of you discuss your condition with an actual doctor? This is what has happened to my husband

GP  referred on 2week pathway

Registrar carried out flexible cystoscopy

Registrar carried out TURBT

MDT decided on recommendations we have no idea who the professionals are

Clinical nurse specialist discussed these options with us (she was excellent) Option chosen

CNS instilled BC G over 6 weeks(again an excellent nurse)

we now await a rigid cystoscopy in approx. 8 weeks with possible 2nd TURBT

If BC G successful then probably carry on seeing CNS

If unsuccessful THEN we will see a surgeon.

My grandson has been treated for leukaemia over the last 3 years and we have seen the paediatric oncology doctor or paediatrician at least every 6 weeks. Not expecting that but it seems very odd to me that a consultant, who is supposed to be in charge of your treatment,  may not actually meet you for over 6 months! I am probably being naive but what do others think?

Herothedog
Posted by

Hello JennyJay, your outline of your husband's treatment is exactly following the Nice guidelines I think. My experience has been exactly the same from the initial TURBT onwards. At first it is disconcerting not to deal with a specific consultant, but overtime I am comfortable with the multidisciplinary team approach. Particularly because the BCG protocol I am following is standard NHS practise for my grade and stage. The CNS will always be your best friend if you feel any anxiety about any issue. In my experience the urology consultants focus on the investigative and surgical stuff while other teams analyse and identify biopsy results, both of which are crucial but it is the CNS who really knows who you are as an individual. So working together to produce a broad picture of the disease makes good sense. In fact I met the consultant named on my case notes when he did my first flexi cystoscopy 9 months after diagnosis. I told him he was my named consultant...he had no idea who I was  What you describe sounds spot on treatment, hope the BCG does the trick. 

rily
Posted by

Hi . To echo what Herothedog says, what you describe is fairly standard practice. I had regular consultations every six months with both my urologist and oncologist. I have always seen the same oncologist who now knows me well. Different urologists, but all under the same consultant urologist. Best wishes.

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

JennyJJ
Posted by

Thank you that makes me slightly less anxious but I'm not dealing with any of it very well and am probably focusing on this as a distraction. However I did read the Nice guidelines which does recommend a urologist and the CNS together but  it is only a recommendation. I will try to calm down.

Wilbert
Posted by

My husband's path has been  very similar except the consultant went thro treatment options with us after the mdt meeting We were told mdt comprised urologist oncologist radiologist and csn 

We went for bcg and the  consultant said in our circumstances it would have been his choice .Three years and 21bcg treatments later my husband is thankfully clear After his next 3 if he clear at flexi the csn will discuss with the consultant whether or not he should have a final three or not This is because he will have passed the 3 year mark from diagnosis after 2nd turbt

I'm with hero the csn is your go to person and it looks like nice protocols are being followed .When after bcg the flexi showed a red patch the csn immediately organized a rigid which thankfully showed it was just inflamation If it had been anything else she said it would have gone to the mdt and we would have seen our consultant 

Good luck with the bcg

best wishes 

Wilbert

BLANKET
Posted by

Hi jennyJay

It's a difficult time & I understand exactly what you mean, as we all want to be seen by the main wo/man.   I've seen a few different urologists over the years, & I've seen several registrars come & go.  However, I've also seen a lot of my Consultant Uro Surgeon too, he knows exactly who I am as I'm not a good patient.  If I've not already seen him I always ask where he is before my procedure, & if he doesn't pop through & give me a wave they ask if I want to see him.  I don't, it's just knowing that he's there.  He usually always comes to see me after the procedure to give me the news of my recurrence.  I'm thinking that maybe I get special treatment nowadays as we go back a long way, or he just comes to stop me from moaning 

All the best to you & your husband x

Hope everyone's keeping as well as can be expected x

JennyJJ
Posted by

My husband is very unlikely to make any sort of fuss or demands. He saw the on call urology consultant after his TURBT because he had been bleeding for 4 days but of course I wasn't there to ask any questions! I expect I will get to grips with the system but a friend is about to have treatment for prostate cancer and he has already seen his consultant 2 or 3times in outpatients so obviously different cancers are treated differently.

lucy-l
Posted by

Hi Jennyjj,

i know what you mean about not seeing a consultant. I was diagnosed 2 years ago and have had several reoccurrences and only saw my consultant when I had my first TURBT and after the biopsy results. All my other TURBTs have been carried out by a different doctor.

Apart from seeing the registrar’s consultant last month after having some problems it has all been Nurse led which works well but it would be nice to have a review occasionally, particularly when a different treatment is recommended.

My husband was diagnosed with prostate cancer last year and yes he saw his consultant more than I saw mine and his oncologist but perhaps that was because he was having more invasive treatment, I don’t know.

All the best

Luce

sueCC
Posted by

Hi Jenny, just to add.....I’ve never seen my consultant for a consultation it’s always my CNS who does everything from giving me BCG at the start, giving me my cystoscope now and answering any questions I have. She’s worth her weight in gold I think. Good luck X

Sue Xx
JennyJJ
Posted by

I think I must accept that treatment by a "team"is the norm. I will however insist on seeing a Consultant if the BCG fails and bladder removal is the next step but hopefully it won't happen 

Thanks everyone for your helpful replies

Denby
Posted by

Dear Jenny, they wouldn't I don't think, judging by our hospital, move you on to  bladder removal without the consultant speaking to you anyway. However I have been really encouraged on here that 'BCG failure' does not necessarily mean straight to bladder removal. His colleague having removed another papilloma only 6 weeks after BCG 6/6, the consultant told my husband and I that he had 3 options, more BCG, Mitomycin [chemo], or straight to bladder removal and in his eyes all 3 were of equal value. Because at that point I had not discovered this forum, going for the chemo seemed the logical choice and we're expecting the next cysto week after next, so will know more after that. However if it has not stopped the cancer cells from recurring, I will aim to have a don't-even-think-about-rushing-us-this-time discussion with the consultant, as other people apparently are trundling on with BCG and recurrences for years. As long as BCG stops it growing into the muscle and spreading, this seems to give a better quality of life option than massive surgery if it can be avoided. I have also read up on here about the surgery so I know what they would be talking about if they do spring that on us. Feeling that as nobody even bothered to advise us against lifting for 2 weeks after TURBT or the level of fatigue, we have to do our own investigation. Think they assume if you're 'retired' you'd never lift anything, sorry if my cynicism feels unfair to any reader, no distress intended.

Very best to all,

Denby

JennyJJ
Posted by

The only 2options recommended at our post TURBT meeting with the CNS were BC G or bladder removal. Apparently our hospital does not remove bladders so we would be sent elsewhere when I would hope and expect to speak to a very senior doctor!! He has CIS not papillary tumours I 'm not sure yet if this makes a difference to treatments.

Herothedog
Posted by

Hi JennyJ, In my case at that post TURBT meeting I was told the stage and grade of my cancer. There was a consultant (who I had never seen before nor seen since) and my CNS present. I had a high grade cancer and I was offered BCG or bladder removal. The detailed biopsy information was given to me in writing. I didn't really understand what it all meant but because of my age I wanted to avoid surgery. This is a very individual decision and needs to be informed by all the biopsy details and individual health. My CNS met me again about 10 days later and showed me where I would receive the BCG and answered my questions. She is a really helpful sounding board for my thinking about treatments.  I phone her whenever I need clarification or support. She always calls back and always sorts out any anxieties. I'm wondering if you could have another meeting with your CNS to answer these very reasonable questions? CNS nurses are trained to a very high level of expertise and it's their job to make time for you. Best of luck. 

Teasswill
Posted by

Protocol obviously varies between hospitals. I'm sure that someone senior will have reviewed the case & it's efficient use of resources to have someone like a CNS to do lots of the procedures etc.

On different occasions I've seen either one of the consultants, a registrar or the CNS. It's always been obvious that a consultant is there in charge of the clinic, available as needed.

JennyJJ
Posted by

I think I've got the message that I am in the minority in expecting to meet the consultant. My point was that it happens for other cancers but not for bladder cancer and I just wondered why, but I ge in